Acid reflux post gallbladder removal

Hi Dawn - I am sorry that you are having these problems too. I was in England for nearly three weeks (I am a Brit) and really dragged myself round which is a first for me - I love to visit home.

I went back to the Dr.here last week and we went over everything, all my old tests and she decided to do a complete ct scan from top to bottom of abdomen - to check it all out, hiatal hernia, stomach, liver, etc. Anyway I await the results.

What you said makes a lot of sense. I had been having these problems on and off for 10 years but the pain between the shoulders (which is apparantly epi-gastric pain) has got worse since the operation and in the last couple of weeks it has been awful. If this is not something more serious then my thinking is this:

As the ejection fraction of the Gallbladder was only 27% (which I take to mean that it was only emptying at a rate of 27% - which is low) then the excess bile was going straight into the system causing the episgastric pain/heartburn/bile reflux symptoms. Now that the GB has been removed the bile (more of it) goes straight into the disgestive system causing even more of the episgastric pain/heartburn/bile reflux symptoms.

I cannot remember whether it was on this blog or another that I read about someone taking erythromycin for bile acid reflux - I have googled it and I can only seem to find articles from medical textbooks and textbook cases which are a bit complicated!

I will keep you posted. Meanwhile stay in touch and maybe we can find out some more information that will help us both. Take care and I am praying that they do not find anything sinister on the CT scan.

Carolyn

Hi Carolyn,

I hope everything comes back OK with your CT scan. I have an appointment with my GI on Friday and hope we can figure something out. I will ask him about the erthromycin. Please keep in touch and let me know how you do. There has to be an answer out there for us.

Dawn

Hi Dawn -

I found this site about a month ago and I am sending it to you. It will not make you feel alone. I hope that you find it useful - it is quite long. It is like this one and has all sorts of different people like you and me complaining of all sorts of different symptoms. See if you find anything useful on it.

Strange symptoms/pains, months after gallbladder removal

I will keep you posted and good luck on Friday with the GI guy.

Carolyn

Dawn -

Just thought I would send you this webpage too. It is a bit complicated but seems to make sense to me. It is about the erythromycin.

Duodenogastric reflux after biliary surgery

 

Carolyn

Hi Carolyn,

Thank you so much for the link. I have been trying to research a bit on my own, I have come across some evidence that links erythromycin to cardiac events. I guess like Propulsid and Zelnorm which were withdrawn from the market. Maybe that is why it is not widely used. I am still wondering about Actigall myself. One of the indications for use is to thin bile and help it flow better. Some doctors note its use post cholecstectomy.

Tomorrow is my appt. with the GI and I am loaded with questions.

I hope you are hanging in there.

Take care,

Dawn

Carolyn,

I am back from the GI with no answers. He says if the Questran is not working, stop taking it. He believes my problem is bile, but thinks it is too soon after surgery to worry about and that it may resolve itself. That certainly doesn't help me now. Too early to talk about other medical interventions. So......

I live near Dartmouth and need to go there anyway since a small stomach nodule was found during my endoscopy. My GI is not sure what it is, so he thinks I should have a biopsy done there. Maybe they can help with this bile problem too. More to worry about. And I just turned 50 this year!

Hope you fare better. Keep me posted.

Dawn

Dawn

How frustrating for you - I feel your pain but maybe together we can get this sorted out! I am very happy that my ct scan came back negative - as I was thinking it could be a tumor.

My MD has ordered blood work which includes B12 and Cortisol and one other test. I also asked for blood sugar levels as mine had been high before (despite the fact that I am not heavy). I will do the bloodwork and go and see her next week.

Meantime I am not taking any meds but I am drinking aloe juice 3 x a day, taking some herbal drops Dr Voegel's Centaurea which I bought in the UK (I am a Brit) and also DGL (licorice). I have eaten better this last day or two and slept better - though that is probably because a. I was so tired, and b. because I am really trying to eat to try and gain some weight!! I even had some wine - and haven't for ages.

I think it is bile too and hope that it clears up for both of us. I will keep you posted on the blood work, and I will also ask Dr L if she will prescribe erythromycin if things do not improve. I am not one to take meds lightly but will do anything to start feeling better. Sorry to hear about your polyp I hope that all goes well.- I cannot see all of your last post as I am writing this so I hope I have not missed anything. I am 58 bythe way!

Good luck and talk when I know more.

Carolyn

Carolyn,

How wonderful that everything came back alright with the CT scan. One less thing for you to worry about. I feel like I opened Pandora's Box now, and I just want to shut it back up. I am a bit worried about the polyp, but I have to concentrate on one thing at a time or I will go crazy.

I am glad to hear you are eating. I didn't eat much of anything for a month and lost 12 pounds. I am still eating bland, non-fat foods, but I am eating, so that is an improvement.

Tell me about the aloe vera juice. Is it helping? You are off all of the meds? Did the PPI's help at all? I tried taking a Pepcid AC the other day and thought I felt better, but it may just be desperation and the placebo effect. I told the Dr. this and he said who cares? As long as you think you feel better. ARGH!!!! It is so frustrating that no one seems to know what to do about the bile. They have acid reflux down, you would think that although this problem is uncommon, it does happen, and they would be more helpful.

Keep in touch and let me know how it all goes. If you have any brilliant ideas or find out anything please pass it along. I wish you well and hope this pain all becomes a distant memory for both of us. We are too young to be out of commission so soon.

Dawn

Hi Dawn -

Well I can quite sympathize with the polyp - I had one in my gallbladder (the radiologist put it bluntly and said it was a mass) but it was a benign polyp. I wish i could say don't worry - but if you are anything like me you will worry until you hear it is nothing. It probably is nothing but at least they are going to check it out and that is a good thing. I will say a prayer for you that it is nothing!

Talk about Pandora's box I know what you meant. Having done about 2 + weeks of first Nexium then Protonix then Prevacid and then at the same time taking any of the following: Milk of Magnesia, Tums, Maalox, Bicarbonate of Soda, - all of which did not seem to help - I realized that I had to back off this cocktail. When I saw the Dr last and she prescribed the CT scan we decided that the Acid Reducers were not working so I stopped taking them. Since then I decided to go more natural and see what would happen.

So I am taking

Lily of the Desert - Aloe - stomach formula. There are lots of aloes out there but this had added soothing ingredients. The one thing that it does is to coats the dig. tract and soothes and puts back healthy bacteria. I have just started taking a probiotic (like acidopillus) - my chiropractor said that putting the friendly bacteria back into the gut was very important. He also recommended taking Borage Oil (it is one of the omega 3's). It acts as an anti-inflammatory which is why it is good. I break open the gelcap and swallow the oil (yuk) but as an anti-inflammartory - it must be better than Advil for the stomach I figure. I also take the DGL - Dycglyrrizhed Licorice. It also soothes the stomach lining and the dig. tract and it has glycine in it which is an amino acid which I believe is also meant to be good for the GI tract. The final thing that I take is Centaurium which is a herbal extract made my Dr. Vogel. I have just found some online in NY.

I still have the symptoms but I hardly dare even say that they are getting better - because when I do - then things get worse. But I will keep you posted. I have been on this regime for about 6 days. I am eating better and feel hungrier. I went from 124 to 112 and am 5'4". Way too thin for me.

I will keep you posted as to whether this is continuing to improve. What made me start the Centaurium (or Centaury as it is also called) is that it says in the blurb:

This is one of the stomach bitters. Its bitterness triggers secretaion of digestive juices in the stomach, improved the digestive process. Use for indigestion, heartburn, hiatus or an acid stomach. As I tend to believe that I am suffering from bile reflux rather than acid reflux (otherwise why would the Acid Reducers not make me feel better) that is why I thought I would give it a try. Like all these things they take time. The aloe would not harm. I don't know how much you are into natural health - some people are and some aren't. Anyway keep in touch and I will let you know how I am doing on this.

Take care. Sorry this is so long.

Carolyn

If you are into natural then a couple of good websites for cheap prices are Vitacost.com (they do DGL, Probiotics, and Borage Oil - I use the NSI brands) ohsonaturalinc.com does Bioforce - Dr Vogel's herbs.

The aloe vera that I used I found at my local health store. If you go locally and decide to but Aloe - then check the back of the bottles to see which has the most beneficial ingredients added.

Good luck. C

Dear Carolyn,

Well I thought foolishly I was feeling better and last night I also foolishly attempted to eat a salad. I spent all evening in pain, with nothing helping. I started Prilosec again yesterday x 2, but I think like you it is bile reflux. My doctor has essentially discharged me since he has no answers, so I guess I am off to Dartmouth to follow up on the nodule and this problem too. Who know how long it will take to get an appointment. Thanks for the words of encouragement regarding the polyp. But you are right, I can't help but worry and basically my GI said no matter what, they will probably cut it out. So that means a partial gastrectomy. And bile reflux is definitely a complication of that surgery. As if this wasn't enough. The gall bladder was supposed to be a piece of cake. Just get it out before it causes problems and then you can eat anything.

If Prilosec doesn't help within the next few days, I think I will stop taking it too. I never had any faith in natural remedies because I always believed if they worked, the pharmaceutical companies would have figured out a way to market and make money off of them. However, I just moved to Vermont last year from Pennsylvania, and Vermont is a hot bed of natural and holistic healers, health and products. At this point I have nothing to lose since I apparently am too much trouble for the only gastroenterologist in town.

I am glad you are feeling better and hope it continues. Please let me know if you have success from your new regimine. I appreciate all of the information and will go tomorrow to look for some of the products.

Thanks again.

Dawn

Hi Dawn -

How discouraging for you. It will be good to have the polyp looked at (biopsy taken) but I hate the thought of you having to have another operation. Let's hope that it is nothing or that they can remove in endoscopally (whatever!).

I did not feel so good yesterday but did not eat so well on Friday evening either including some wine. However I feel somewhat better than I did last week and I think that my tummy is not as active as it was it was so rumbly. I think that the acid reducers caused me more problems than not. Whether these natural remedies are helping I am not sure. Certainly if you are in a good area like you say Vermont is then a good healthfood store may have something helpful and soothing. If you do go ask who would be the best person to ask about your digestion - some people know alot. As far as natural vs. drug companies - as long as the drug companies can make money inventing what they do then they have nothing to lose so I guess that is why they don't do much. Also it would cost just as much to do all those double blind studies over the years that they do.

I thought of going to www.mayo.com (the mayo clinic website and asking about bile reflux - though I haven't done it yet. It might be a good resource for us to look at. They are apparantly an excellent resource and I think will answer questions.

Meantime I am going to get my bloodwork done on tues and guess see the Dr when it is done.

I hope that you start feeling better. Does eating anything help or does everything make you feel either sick or sore?

We'll get to the bottom of this together!

Take care.

Carolyn

Hi Carolyn,

I am sorry to hear you weren't feeling well. My days are like that too. Just when I think I might be turning the corner, I let my guard down and eat something I used to love (like salad) and I am back to square one. Basically I am afraid to eat and once my stomach settles down, I have to force myself to eat since eating seems to set the cycle in motion all over again. Basically bland foods are fine, especially bagels and kefir smoothies. I try to eat them once a day for nutrition. Kefir, a frozen banana, a few berries, whey protein and some ground flaxseed. I am worried about my diet because I have been eating healthily for years, salads, fish, chicken, whole grains, fruits, nuts, and wine. And now I can only eat things like bread, starchy vegetables, grilled chicken, and pudding. Bluck! I am losing so much weight, which I would have loved in my 20's, but now that I am 50, I am thin enough. But I have no appetite.

As far as the medicines are concerned, I decided to go back on the Questran. It seems to help a bit and as long as I watch to make sure I don't become constipated, I think it is a pretty benign drug. I keep going back and forth on the PPI's. Again I have been doing exhaustive research (like you I am sure) and from what I can figure out the reason Dr.'s try the PPI's is because although they do nothing for bile reflux, if you have reflux at all, the PPI's reduce the entire acid volume in the stomach and keep everything from refluxing into the esophagus. As you probably know, refluxed bile is thought to be causitive of Barrett's Esophagus and can even be silent. So not in our cases, but in some, they can be refluxing bile without knowing it and causing permanent damage. I read a study that says Achiphex was as effective for bile reflux as Carafate. I have some samples here and I may try it along with the Questran. Dosing is a problem though because Questran binds to everything. I also bought myself some Mylanta which has aluminum in it, this is also thought to bind to bile.

Maybe we can compare our experiences with our new plans. The conclusion I have come to is that there is pretty much nothing the doctor's can do to control bile reflux short of surgery and that is iffy at best. We can only pray that our reflux is a complication of GB surgery and our bodies will adjust and we will be fine.

Keep in touch and let me know how things go with the Dr. I am going to call Dartmouth this moring and start my new nightmare. I sent a question into the University of MD, but wonder if I will get a response.

Take care,

Dawn

Carolyn,

Here is the abstract of the study I was telling you about if you are interested.

Post-cholecystectomy alkaline reactive gastritis: a randomized trial comparing sucralfate versus rabeprazole or no treatment.
Original articles

European Journal of Gastroenterology & Hepatology. 15(9):975-979, September 2003.
Santarelli, Luca; Gabrielli, Maurizio; Candelli, Marcello; Cremonini, Filippo; Nista, Enrico C; Cammarota, Giovanni; Gasbarrini, Giovanni; Gasbarrini, Antonio
Abstract:
Objective: At present there are no well-established pharmacological approaches in the management of post-cholecystectomy alkaline reactive gastritis. The aim of this study was to assess the effect of sucralfate versus rabeprazole or no treatment on dyspeptic symptoms and endoscopic/histological signs in a population of patients with a history of cholecystectomy and evidence of alkaline reactive gastritis.

Methods: Sixty dyspeptic patients fulfilling the following criteria of inclusion took part in this study: (1) a history of cholecystectomy; (2) no use of anti-inflammatory steroidal and non-steroidal drugs, or abuse of alcohol; (3) evidence of abundant gastric bile reflux at endoscopy; (4) endoscopic signs of chronic gastritis; (5) histological signs of chronic gastritis; and (6) absence of Helicobacter pylori infection. Dyspeptic symptoms were evaluated by means of a self-administered validated questionnaire. Patients included in the study were randomly assigned to one of three treatment groups for 3 months: sucralfate, rabeprazole, observation. Patients were re-evaluated at the end of the treatment.

Results: Sucralfate and rabeprazole therapies were both able to significantly reduce epigastric pain, heartburn, bloating and halitosis. Endoscopic/histological signs were lower in both treatment groups compared to the observation group.

Conclusion: Both sucralfate and rabeprazole therapies are effective treatment options in the patients with alkaline gastritis when compared with observation.

Hi Dawn -

I do hope that you manage to get your appointment at Dartmouth soon. I did my blood work this am. one test I discovered was for crohn's disease as well as B12 and Cortisol levels. I will wait to hear what happens when the tests come back and go and talk to the Dr.

I decided last week after I dropped Prevacid that I would try going natural (ie aloe etc) and I would try and eat more. Like you I was getting really worried too. I was 124 before Christmas - 5'4" skinny legs anyway and now weigh 112. We have to eat so much more than we can manage at the moment even to put on a pound. I do have good and bad days. I am elevating my head at night on more pillows and also sleeping on my right side. That seems to help. I have been trying to eat a little as often as I can - say every couple of hours.

I either have a toast or a shake for breakfast. A banana an hour later. I also eat Kashi honey roasted granola bars. There are two in a packet, 180 calories for both bars, but they are not sweet or full of junk and they are tasty. I try and eat a sandwich for lunch if I have a shake for breakfast. I don't think that salad is that great for me either. We have been putting either chicken or different fish on the grill and I try and eat potates or couscous or pasta of some sort but a variety of veggies. Broccolli, zucchini,green beans seem to go down quite well. I make small portions for me.

Because I have made myself eat more - I am wanting to eat more - I am not symptomless but I think without the ppi's and more food I am doing a little better. I have tried a little wine. I am definitely not constipated and really need more calcium to bind me up sometimes!

I would really encourage you to eat a little and often unless the symptoms are really really awful. I think it will help you increase your appetite. I know that it is the pain that stops me eating in the evening. I am still thinking that the Prevacid etc takes too much acid out of my stomach which is why the pain is worse but better without it. Just a thought.

Thank you for all the information that you sent. I need to read it again.

I am not sure which products are sucralfate and rabparzole. Is one of them Questran?

Keep me posted. Feel better - WE WILL get to the bottom of this and feel better. Take care.

Carolyn

Hi Carolyn,

Dartmouth has put me off for an appointment until my Gi and they confer. So no help from them on the bile gastritis for now. I got a reply on the internet from the U of MD (surprising) and I will paste it for you.

Stomach burning and nausea after removal of your gallbladder are unlikely to be due to reflux (GERD). Typical reflux symptoms are heartburn and regurgitation and one would not expect the onset after cholecystectomy. Acid reflux should be adequately treated with PPIs which are typically very effective. Bile reflux is rare. You may be describing bile gastritis. Unfortunately, there are no definitive therapies. Trials of PPI, Carafate and Questran are all reasonable. A trial of a promotility agent (Metoclopramide, Domperidone) would also be reasonable.

So nothing new from what I have been doing. Carafate is a kind of super antacid that coats the stomach and protects it from bile and acid. Questran is a bile acid sequestrant that binds bile in the intestines particularly good for those with diarrhea. That is not me, lol. Rabeprazole is the generic name for Aciphex, just a newer, faster acting PPI. I was interested in it because it also supposedly increases mucin in the stomach which in theory would help protect from bile. I am afraid to take the promotility agents (Reglan) because they have horrible side effects (tics,depression, suicidal ideations, spasms). I also found out that erythromycin is used for promotility but is not as effective and has cardiac consequences. So unless we have gastroparesis (delayed emptying of the stomach, they do an emptying test for that), I don't think they will help.

Yeah, eating is hard. I was extremely nauseous this morning and took some Emetrol. I felt better and tried to force myself to eat. I agree it is important to eat and get frequent small meals in, I just have no appetite for anything.

Good luck with your blood work. Let me know how the results come out. It sounds like you are doing marginally better, and I swear there are some days that I think the same. But then I am back to square one. I am getting to the point that I could deal with this if I knew I would feel better in a year. I can't imagine the rest of my life like this.

Take care,

Dawn

Hi Dawn - Just thought I would say a quick hello to say I hope that you are doing a little better. I'd like to say that I was but I am not at the moment - I am waiting for blood work results. I am not taking anything but the aloe and some probiotics.

It is sunny here in Florida but we need some more rain. Our son arrived from Boise ID for two weeks which is really nice and just what I need!

Anytway - just thinking about you. Hope that you get a good appointment.

Take care,

Carolyn

Hi Carolyn,

I am so sorry to hear that you are not feeling well again. It is exactly like that with me too, one day I feel almost normal and the next I am sick. There is no rhyme or reason to it. Perhaps something will show in your blood tests.

I finally got an appointment at Dartmouth but is not until next month. I spoke to my GI again and he wants us to start over. He feels I am taking too many different meds and not sticking with anything consistently so that symptoms can be narrowed down. Yesterday I was nauseous and he prescribed some Phenegan for me. It knocked me out so much last night that I forgot to take any medication. I felt so good when I woke up I didn't take anything today. Who knows what tomorrow will bring? I keep thinking I will pay for this.

If this makes you feel any better, my GI told me that it takes a really long time for some people's bodies to adjust to gall bladder surgery. And for those with bile relfux, it takes months for the bile duct to enlarge to accomodate the bile flow from the liver. He said I am way outside of the bell curve considering people with gall bladder surgeries. Most are chowing down on everything, but there are those rare unfortunates like us who develop complications. He truly believes this will resolve and worst case scenario is up to a year.

I am trying to be optimistic. He can come up with no new medications or strategies for me other than to take the Questran as often as I need it up to 4 scoops a day (it is a powder). I have stopped the Aciphex.

I hope you have more well days now especially with your son visiting. Please let me know how your tests come out. Hang in there, we will get through this. My thoughts are with you.

Dawn

Hi Dawn - Thank you for your nice note. I am glad that you got to see your GI. I agree with him about taking too much of anything - one tends to look in the medicine cabinet and say "Which shall I try next!" and do it. I am glad that you got your appointment with Dartmouth.

That is interesting what he said about taking time to settle down and the duct accomodating the difference.

I have to say that I have had diarrhoea for the last three days or sto and can't say that my stools have been normal for the last couple of months. At first they were and I thought that maybe it was because there was a fair amount of swelling after the op that caused the bile duct to be narrower. Once the swelling disappeared then the stool problem has been more noticeable. I think I definitely need Qustran.

I went to the walk in clinic last night because I could not get an appointment with my Dr. I went because I have seen him before and he is a sweetheart. He seemed to think that I had gastritis and recommended that I use Pepcid AC once a day for a month to see how that works. Also to visit my Dr. again and follow up with the GI guy. He also said to check up and see if we did for sure get the results of the polyp in the GB, Anyway I took Immodium yesterday and it carried me through to this morning. He said that I must eat - no matter what. Ensure, McDonalds(!) bagels, etc (some tongue in cheek like the McD's!). I have also had a low grad headache and general achy legs etc too.

I know that I do not tolerate too many carbs well and I have been drinking Gatorade for the last couple of days so the sugar might be the problem.

I don't know if you have ever read "Eat right for your blood type". I did and pooh-poohed it to begin with but I am not sure that there is not something in it. I am an A and I can see why!

Anyway I do hope that you feel better too.

I go back on Thursday for the bloodtest results but the other Doc said he thought that nothing would show up.

We WILL GET to the bottom of it -it may just be patience!

I hope you manage to get some more food down you too and that you feel better.

Will be in touch later when I hear anything.

Have a nice weekend and take care and you are also in my thoughts.

Carolyn

Just checking in to see how you are doing. Good luck with your blood test results. Is the Pepcid AC helping? I had a couple of really good days and like always, last night I had a relapse. It has been eight weeks now since the surgery. I don't know if I can live the rest of my life like this, but really what choice do I have?

Let me know how things are going. Hang in there.

Dawn

So good to hear from you. I am glad that you have had a couple of good days too. I did as well but then Tues and Weds were not so good. The pain comes and goes but I have still been having diarrhoera and take Immodium about every other day - love that symptom! I get these strange feelings - I suddenly feel very weak in the arms and legs and shaky and my head feels odd. As I have a bit or a left ear problem - ringing, deafness, odd vertigo - it suddenly seems to come on - a loud truck in my ear and pressure - can't explain it - probably unrelated but it does not help.

 

I have really been trying to eat more but when it adds up I am lucky if I eat 1500 calories. Have you found any foods that make you feel particularly worse? I had a glass of red wine last night.

 

I am on about day 5 of the pepcid ac I take it at night. I have to say that since I stopped the acid reducers the heartburn is much better - some things seem to make it worse but it is the general feeling of tiredness and all of the above that make me feel just plain not very well.

I think I look awful - so thin and now I look pale though the blush and the pink lipstick help.

 

As I have a carb problem I am going to ask the doc about a gluten test. Also will ask about the erythromycin. I expect that she will suggest another endoscopy - but we will see. I will let you know.

 

What are your worse symptoms - it is funny about the good and bad days. I do think that we will get better - some people say that their Mom or sister had it and it took months to settle down. If I knew it would settle down for us I would be happy to put up with the symptoms for a little longer but as they seem to get int he way of everything - just not feeling up to doing that much that is the unknown. I am very frustrated and cross - my poor husband.

Thinking of you - we will get there in the end and I will let you know later how it went. Sorry this is so long

Feel better.

Nice not to feel alone in this.

Carolyn

I am sorry to hear about your continuing symptoms. You have many different ones and really are suffering. Mine are centered around constant burning pain and nausea. But I truly believe it is too coincidental that they all started after gall bladder removal.

Perhaps you could ask your Doctor about the Questran. I know it is supposed to work wonders for the D, but I am taking it for the bile reflux in my stomach. It seems to help marginally. My GI switched me to Welchol because I couldn't stand drinking the liquid and thought it was contributing to my nausea. The Welchol is supposed to have fewer side effects, but all I know is that it is very expensive. It works about the same as far as I can tell.

I too am taking some Pepcid AC twice a day. My GI says I don't need an acid reducer, but everytime I stop , I get worse. Depending on the day, the burning is either in my stomach or feels more like regular heartburn. I think the Pepcid helps the regular heartburn.

I have not been brave enough to try wine and I used to love having a glass with dinner. The things that make me particularly bad are any type of spicy vegetable. Once I ate some tomato sauce (big mistake), I got sick from a salad of spicy mesclun blend, and last night I sauteed some onions, peppers and chicken in cooking spray. I have had severe burning pain all night and morning in spite of upping my Welchol. I don't even dare eat anything fatty.

I know what you mean about feeling poorly. My husband has been a saint through all of this, but it is impossible to explain to another how badly you feel especially after 8 weeks. I am grouchy and mean when I am sick and cannot think about anything but my stomach. We can't go out and enjoy ourselves and each day's activities depend on how I feel. And just when I get complacent and think things are turning around, bam, I am back to pain again.

I hope we are right that this will get better. The good days will outweigh the bad and eventually there will be only good days. If I knew this would resolve, I could live with it easier. It is too scary to think this might go on forever.

Please take care and let me know how you are doing.

Dawn

Hi Dawn -

I have just been reading all your posts from beginning till now. I hope that you have had a good day today. I wonder when you have your appointment for your visit to Dartmouth? Is a partial gastrectomy when they actually remove part of the stomach or is it just some of the lining? I hope that all works out for you. Please keep me posted.

I did go to the Dr. today. I was dreading it thinking that she thought that I was just another "Anxious Annie". However as always she was a darling and was so kind and such a good listener. I told her that I had googled all sorts of things, found different blogs with lots of post GB op symptoms - all complaining of the same sorts of things as you and I do. I also told her about you and how nice it was to have a GB buddy!! (Well I wish I didn't have to have one but I am so glad that you answered my post because it is great to have two heads working at this and someone who knows what it is like and it is so helpful to have someone nice to be able to complain to or run things by).

She listened intently - also followed up with me about another patient she had (who had had similar run around with all the different tests and had had her GB our about 2 months before me). It turns out that she is going through the same things and also has diarrhea too. She even pulled up her chart as this patient had gone to see the GI and she was hoping that there might be a report of some help. I told her that I suspected bile reflux but also told her about my carb problems. She read the article on the erythromycin and thought it was very interesting. She said bring anything to her attention and look hither and yon. I told her that you were on Questran and she thought that would be an excellent idea because if it helped it might at least prove that it was bile reflux that was the problem. She also suggested doing a celiac spru test (for gluten). So I have more blood work to do and also getting Questran.

At the moment I am only taking one Pepcid AC Max at bedtime. I am also doing aloe a couple of times a day and also the herbal drops (when I remember).

Tonight I feel shaky again and my ear is ringing loudly and my legs ache - WHAT is happening to me? AAh!! (That can't be bile reflux!)

I so feel for you about eating and husbands and being sociable and glasses of wine and being really crabby. I am the same - I am so over this whole thing and have serious sense of humor failure abut it. - Tearful from frustration from time to time too.

I work a day and half a week in the local Christan Book Store. Lovely lovely people and they pray for me alot which is really nice! This whole thing just puts life on hold and that is awful. I really dragged myself round England this time when I was home for 2 and half weeks and I love being there - our daughter Rosie married another Brit and moved back there about 3 years ago and now has Archie - aged 1 darling little grandchild and there dog (my granddog (working cocker spaniel)who is about to have puppies any day)! Apart from my husband here we have two Jack Russells - who are lovely but wild and a son Eddie who is a marathon runner in Boise Idaho but who has come back for a visit for 2 weeks.

I do hope that you are feeling better. I will keep you posted on the Questran. I ate chicken and rice for lunch (lots of rice - bit fed up with chicken) and some fish pots and peas for supper - I did have a drink but may regret it. Oh well.

We WILL get over this. Now there are three of us in this and my Dr, I am sure, has a vested interest in getting both of her patients better and maybe that will help you too..

Take care.

Carolyn

HI you 2 Ive been reading your posts Im interested in knowing about bile reflux myself I had my gallbladder removed in Nov 06 and I have bad acid reflux prior to that they actually found the gallstones by accident but guess it was a good thing!
I had a fundo (acid reflux surgery) in 2001 IM 29 will be 30 in a few weeks YEAH... anyway my reflux was pretty much under control Id have some bad days but as long as I took my Prevacid and ate pretty good I was ok UNTIL a few weeks ago I started having MAJOR reflux again but this was with a vengence nothing helped and I never stopped taking the prevacid so I made a Dr's appt he said its unikely that the prevacid stopped working but theres a small possibility it could have so he said lets switch to aciphex twice a day well it didnt help so he wanted to schedule an endoscopy and do a bravo study that stays in your esophagous for 48 hours as he ws thinking its bile not reflux and he wanted me to continue to take the aciphex while doing the bravo study so I did this and he called (well the nurse called) and said he wants me to take carafate as he said the biopsy showed my stomach really inflamed (BTW I have bad IBS one Dr said it was Cronhs but this MD I see now saya no) so I have to take Carafate its a liquid 4x a day and continue the Aciphex which I have been doing for about 2 weeks now I knida see a difference but Im still having reflux and pain when I swallow WHICH is driving me nuts!

Anyway I cld the Dr back to let him know this he was on vaca. and the covering MD reveied my chart and wants me to start Welchol to bind the bile? I remember the last Dr who found my gallstones wanted to start me on that med but I never took it since I was having it taken out!

So thats my drama I wanted to know what side effects youve had from Welchol???? But Im going to wait to see my Dr until I start that med to seee what he says hes really nice and caring so I trust his opinion and I dont knwo the covering DR so Im waiting any advice you have I would appreciate and I could dish out some too if you have any questions???

I can tell you I have bad diarreah after my gallbladder removal but I started taking Flora Q (a priobiotic) it orks great I have a few bad days but NOTHING compared to what I did have!
ANyway hope to hear from you both

 

Kim

Hi Kim,

I am so sorry to hear you are suffering too. You certainly sound like you are are having bile reflux if the Prevacid and Achiphex aren't working anymore.

I can tell you about my experience with Questran and Welchol which is limited. I never experienced D with my gall bladder removal, only
what I assume is bile reflux gastritis. From all that I have read on the internet, Questran and Welchol are extremely helpful for bile salt diarrhea, and although there is logical reasoning (it binds to bile in the intestine) to use it for bile reflux, there has never been any evidence to show it works for that condition. Regardless, my GI has me on it. I may be crazy and I was actually going to call him today, but I think it makes my acid reflux worse. Most of the time my burning is in my stomach and upper abdomen (bile reflux gastritis?), but when I take the Welchol and the more I take, I start getting heartburn further up. I have been taking Pepcid to help, and it does somewhat. If you look up the side effects of Questran/Welchol it does include heartburn, stomach upset and indigestion. Unless you are having bad D, you might want to wait until your regular Dr. comes back to start something new.

I tried the Carafate earlier and it was semi-effective. I think I would like to try it again. Hope this is helpful. Stay in touch with us and I will keep my fingers crossed for us all.

Dawn

Dear Carolyn,

Thanks for your concern. I have my appointment at Dartmouth on the 16th of July. And yes, a partial gastrectomy would mean cutting out part of my stomach. Just like weight loss surgery, which I don't need right now, lol. But until I get this problem straightened out, I am not rushing in to any more surgery.

It sounds like you have a great doctor. Maybe she will be able to help. I think the Welchol is causing me to have acid reflux and I am back to square one again. I am stopping everything once again and calling my GI today to see if I can try the Carafate.

Anyway, stay in touch and good luck. Talk to you soon.

Dawn

Hi Dawn (and Kim if you are on this thread.

 

This whole thing reminds me of the conundrum of the fox the chicken and the grain. Which do you take across the river first in the rowing boat to stop one eating the other? Shall we try this med. or that one and does this make it better or worse or shall I take this one with that one. It is so hard to know which ones work which make it worse or which combos help. The only med that I am taking is the Pepcid AC Max - but like Kim I am also taking the probiotic. Maybe we are not being patient enough. If we have pain - there must be inflammation and often that does not die down till the tissue is healed. I am still doing a few 'natural things' like the probiotic and the Dr Vogels Dig. herbal drops. I also take Lecithin granules - which is a fat emusifier (it is found in soy and egg yolks) "Lecithin enables fats, such as cholesterol and other lipids to be dispersed in water and removed from the body". (quote Nutritional Healing). Whether this would help with bile dumping I am not sure. I eat very little fat - mostly butter on bread and toast and whatever fat there is in chicken, some olive oil in dressings too.

I am getting the Questran today and will try it and see what happens.

I certainly feel the heartburn is better without the acid reducers.

I am sure that I will probably talk to you before the 16th Dawn - but do let me know how you get on. I shall be anxious to hear how you are.

Kim - I hope that you make progress - it has been really nice to have Dawn to chat to and sympathize with.

 

Carolyn

Thanks to you both!

Yeah Im not starting the Welchol until my I see my actual Dr first and I did read about ALL the side effects so I planned on mentioning that to him as well...

My main complaint changed daily ha ha

its either really bad burning/reflux or pain in my throat <---which is new but a side effect of reflux some how?

Im very thankful that I dont have the "runs" after havign my gallbladder removed but I know the Flora Q (priobiotic) works good not to day every day is wonderous in the dept! But a WHOLE lot better!

Its hard because im a single mom I have 2 girls 13 & 11 and they think Im dying because Im always sick they are sick of me being sick sometimes more than I am but Im hanging in there I get through everyday by God's grace Im not a religous fanatic but I have an everlasting relationship with Christ and a firm belief He will bring healing to me wether its through a Dr or some other way I know it will happen!

Its just all the waiting and issues thats so hARD!
Thanks for the support I really like this site wish I had found it sooner

Kim

Dear Kim and Carolyn,

It is so nice to have support out there in cyberspace. It is so hard to explain to our families how we feel and unfortunately it affects them too. So much of my day is wasted dealing with my GI issues, I feel like I am 100.

I am still taking the Pepcid AC and for some reason it helps. It is an acid reducer too, but not as strong as the proton pump inhibitors. Unfortunately, it is not effective long term because the body builds up a tolerance to it, usually within 2 weeks. So this is just a short term fix until I either have a miraculous recovery or I try yet again another combo of meds. I drink a kefir smoothie everyday which is supposed to have mega doses of probiotics in it, so I guess I am taking them too.

Good luck to everyone and please stay in touch. It is great having someone to talk to about this other than burdening my family.

Dawn

Dear Kim and Carolyn,

It is so nice to have support out there in cyberspace. It is so hard to explain to our families how we feel and unfortunately it affects them too. So much of my day is wasted dealing with my GI issues, I feel like I am 100.

I am still taking the Pepcid AC and for some reason it helps. It is an acid reducer too, but not as strong as the proton pump inhibitors. Unfortunately, it is not effective long term because the body builds up a tolerance to it, usually within 2 weeks. So this is just a short term fix until I either have a miraculous recovery or I try yet again another combo of meds. I drink a kefir smoothie everyday which is supposed to have mega doses of probiotics in it, so I guess I am taking them too.

Good luck to everyone and please stay in touch. It is great having someone to talk to about this other than burdening my family.

Dawn

Hi Dawn and Kim -

I am still having a problem with the AR Website. Every time one of you replies to me I end up with 20 notifications that there is a reply for me. I write back to you and the send another 10 or so replies saying there is a comment from someone. These things are breeding!! I don't want to miss any posts but at the last count I had about 40 notifications from AR Website - which in fact contained 2 replies from you two and and one from me!!! I don't want to turn it off because then I won't know when you write. On the other hand I have tried going onto the website and the only post that I can find is the one that you Dawn replied to in the first place. My question is - do you reply to me because you get notified and if so do you get 10 notifications every time? or do you go to the website and find a place where you can access our emails - I have searched and cannot seem to find them anywhere.

Your frustrated Post-GB friend and website user!!! Carolyn

Hi Carolyn,

I am having the same problem with the website. I got 17 email notifications from your last response. And the same thing happens when I reply. I have had up to 48 messages at once. I just go in and delete them except for the last one and reply to it. I don't know how to fix the multiple replies. I guess we could set up an email address just for us GB buddies. Have any other ideas?

Dawn

HI guys

I dont have that issue with the notifications yet anyway!
AUGHHH my throat is hurting me again its soooo strange I never had this before and ALL OF A SUDDEN Im having throat issues...... along with the reflux etc...

You really start loosing it when you would prefer one ailment over another!!!!!

I hate eating now which is terrible!!!!

Oh well Im gonna go try and relax and watch a movie without popcorn :(

Dear Dawn and Kim -

I am at gcernestjones@bellsouth.net and would be happy to receive posts there if either of you want to do that. You might not want to pass out your own email but if you want to set up something separate that would work. If anyone else joins the AR Connexion and replies to one of us then we will be notified anyway (48 times!!!). I am afraid that I might miss a post somewhere and still can't find a way back to where we all post.

Kim - the pain in the throat must be the acid going up your oesaphagus. Poor you that is horrible. I thought that I was having a heart attack when if first happened to me and it also gave me strange tingling in the skin around the outside of the throat and jaw area which really made me feel that I was having a heart attack. Of course I ended up in ER. Reading some of the pre gallbladder posts - many of these symptoms mimic heart attack symptoms and so many GB sufferers end up in ER. I wonder what would calm it down best.

My chiropractor said that taking 1/2 tsp of baking soda should help regular acid reflux because it is alkaline and neutralizes the acid. I am not sure whether it works with bile acid reflux and I don't think it helped me much. Milk can also be helpful. We alway buy fat free milk but just lately, because I am now so skinny (another 3 pounds down since I last saw the Dr.) I have taken to drinking whole fat milk (never thought I would do that again!!!). It actually feels good too. I buy organic and I think it tastes better.

Anyway we went out to eat tonight and I won't tell you what I ate because you won't be sympathetic when I moan and groan tomorrow - why one earth can't we eat what we like - the surgeon said "You can eat anything you like now" Ha! I wish.

Have a great healthy weekend.

 

Carolyn

Hi Kim,

I just know I am going to have 48 notifications in my inbox, lol.

You are so young to be having such problems. I am sorry to hear about your throat. I hope your Dr is back from vacation soon. Is there a possibility that you need to have your Nissen redone? I only know about the surgery because I have been a fanatic researching everything and it is sometimes recommended for bile reflux too. I think I read that some people have to have it redone after a few years. Was it helpful and did you have any complications?

It really stinks not being able to eat, doesn't it? The surgeon told me the same thing, I would be able to eat anything. I can't even eat the things I used to. And now that it is done, they shake their heads and say how unusual, but not unheard of. Oh well, just try this medication and hope you improve over time. Before surgery, "its a piece of cake, a couple of days and you will better than new", after surgery " it takes months and months for the body to heal after a surgery, it is a major trauma, it is early yet, give it time". As you can imagine I am not anxious to have anything else ripped out or cut open just yet.

Hang in there and please let us know how you are doing. I am going to set up a separate email account so I can deal with the multiple notifications. I will email Carolyn too. Take care of yourself and your girls.

Dawn

Hey there

Yeah that Nissen was no walk in the park I personally think I have a pretty good tolerance to pain but when I woke up from that surgery I wanted to literally die I felt like I was dying I was in EXTREME PAIN but I think it was more from the gas than the actually procedure becuz they pump you full of all kinds of gas in order to do it the laproscopy way...

The surgeon preached that I would be able to eat anything I couldnt before and also said to go ahead and stop the prevacid which I did but you know your on a restricted diet after the sugery

Well I wasnt able to tolerate solid foods as the wrap was tight and one thing lead to another I had to be started on Ensure because the most I could eat was mash potatoes and that was pushing it!

Well I was extremely frustrated and being stubborn stopped drinking the ensure and landed up back in the hospital as I passed out and had next to NO postassium in me my heart was racing and everything went black it wasnt a good time in my life as I lost 30 pounds and Im normally like 140 but Im 5'9 so I looked like death!

well after that my Gastro at the time lossened my wrap and I was back on prevacid to make a REALLY long story shorter it worsened me in my opinion all that went on for 9 months!

But thats just my experience I dont want you to think that happends to everyone you know!

I have had issues with my stomach my entire life my mom almost died at 30 with ulcerative colitis it runs in my family One of my Dr's thinks I have Crohns my new Dr says NO! but I have been seeing Gastro's since I was 13 so Im use to it

I work in the medical field in the background though my sister and mom are nurses.

It just sucks your entires life up being sick, but at the same time it could be horriby worse for all of us we could have no insurance or access to a Dr or Cancer or something else we all have a cross to carry I beleive and I know I will prevail with the help of God of course!

My girls actually help me alot they are great I had them really young at 16 & 18 and I have always been single so we are very close and they know pretty much all that goes on with me but I dont tell them everything though....

I hope your weekend is going well you both wil be in my prayers Im interested in hearing how we all turn out! LOL

WEll Im gonna run Im watching another movie! LOL
they are my escape!

TTYL

KIm

OH I did have a few notfications this time but it was only about 5

Hi Kim and Dawn - So sorry that you had such a bad time Dawn - so you have had weight loss too.

What concerns me is that now I have dia... I don't know how much that I am absorbing. On a plus note I am eating more. I have good times and bad times.

The only med that I am taking is Aciphex + Max at night (1pill) but I started the Questran yesterday.

My heartburn is much better than it was - though some foods will give it to me.

It improved when I stopped taking the acid reducers which included, Nexium the Protonix and the Prilosec. The pain comes and goes - I worry about it less now because I know what it is (I worried myself to death before I knew what it was). Naturally I would like to get rid of it.

I am doing Aloe before meals, and also Dr Vogels digestive drops, and a probiotic once a day. Otherwise a multivit, and now B12 as she said mine was low. I have started drinking Alacer Electro-mix which I add a little flavor too. I was worried with the dia.. that I too would get dehydrated. I make up a packet or two a day and drink that instead of regular water.

I am definitely eating more and tolerating more - but because of the dia... and the fact that at 5'4" I have gone from 124 to 110 and still seem to be losing - I really want to try and put some weight on. Ha Ha! The other thing that I take too is Lecithin after meals. Lecithin emusifies fat and I don't know whether that would prevent the bile from rushing out to do the same thing.

Kim I read the blood type diet and am a Blood Type A. I still think that there is something in that. Some people thing it is rubbish. A's tend to suffer from digestive diseases crohns etc, cancer, heart problems. (I don't know whether my Mum was an A but she had colon cancer - though it did not kill her. The recommended diet is more vegetarian. no dairy (except goat's milk and cheese), no red meat, chicken is neutral, fish is fine (no shellfish) some grains though not wheat etc.

The reason that I am telling you all this is that A blood type people do not produce much stomach acid. I definitely felt better (heartburnwise) when I stopped taking the acid reducers. As the acid problem seems to be bile acid. then it makes sense that if you don't have much acid in the first place and the AR's stop it altogether - there is going to be a real deficiency in stomach acid and might cause more pain. It makes sense to me - as I do believe that the blood type diet makes sense but some don't.

I know that I also get into trouble with aches and pains when I overdo the wheat and carbs - but as fats are now a problem what else is there to eat AAH!!!

Just a question for you Dawn - how often and how much Questran a day did you take. I only took one scoop yesterday as she said "Let's start on one scoop" . Then say it said on package 1 x 2 a day. (Should have read the package more carefully. Did it make you constipated?

We will get to the bottom of all this. I will keep you both in my prayers.

Carolyn

Hi Carolyn and Kim,

Kim - It is unbelievable how much you have been through already. I didn't even know there was a surgery for GERD until I went through all of this stuff myself. It certainly doesn't sound like the easy fix Dr.'s make it out to be. As with all surgeries (dripping sarcasm). But you are so right, it could be much worse and I have to keep it in perspective. I guess I am frustrated because I feel like I inflicted this upon myself. I had the gall bladder removed "just in case". Just in case it would get worse, just in case it would be an emergency, do it before it becomes a problem. Now it is a problem and no one has any answers other than it happens, oh well, it sucks to be you. I apologize for being so negative but everyday I wake up hoping this will be the day my body "adjusts" and I am back to normal, whatever that is anymore. At this point normal would just be no more pain even if I couldn't eat the things I love anymore. You have such a good outlook and are so positive, I appreciate your support.

I also never dreamed I would ever worry about losing too much weight. I used to be very overweight and about 8 years ago I went on a strict low-fat diet (that was the conventional wisdom back then) and lost 80 pounds. I think that is how I developed gall stones. I am 5'9" and although I weigh about 160, I am very large framed and that puts me between a size 8 and 10. I am perfectly happy with that, Now I have no appetite and can barely eat and what I do eat, I am sure I am not getting adequate nutrition. I eat like an invalid, bland, low-fat foods because anything acid, fatty or spicy in any way sets off the pain. My blood type is AB and I have seen the blood type diet, but at this point I am eating whatever I can tolerate.

Carolyn - I think you are right to be careful with watching your nutrition. One of the side effects of Questran is that it eventually blocks the absorption of Vitamins A, D, K, and B-12, all of the fat soluable ones. That along with the D would probably deplete you. I think you have to be on it for a long time before that happens though. I started out taking one scoop of the Questran at night before bed, but then upped it to 4 times a day. I think it made my stomach worse, but you are using it for D, so that may not be an issue for. My Dr. said since I was using it for excess bile, I would not get constipated. He was right, I actually was very regular on it. I have switched over to Carafate and I can tell the difference already, because I am now constipated. But this medicine seems to help more with the burning. I will just add laxatives to my mix. I am glad to hear you are feeling better, Carolyn. How did you make out the other night going out to dinner? Did you pay the next day?

Kim - What do you think of the Carafate? Is it helpful to you? Do you have any side effects?

Sorry to be so long and rambling, just trying to consolidate my post to both of you so I don't end up with 100 emails. Good luck to you both and thank you for being there.

Dawn

Dear Kim and Dawn - Firstly I must have deleted a post where you told us about the Nissen originally Kim. I am so sorry that you have been through all that and I am sure that it must be really hard being a single Mom and having to take care of everything as well as feeling ghastly.

Thank you for the heads up on the Questran Dawn. I take my meds at night so will have to find a better time. I think I might try and take it before meals - though I don't want it to interfere with the other things that I take.

On the dinner front - well I had mussels and some linguine. (no tomatoes or spicy) and some wine. I did not feel so great the next day but not worse than usual. I have really been trying to up my food intake eating eggs and toast for lunch and trying to eat as much as I can - though avoiding fat, spicy, onions, toms peppers and citrus. I drank Guiness at lunchtime - because it is calorific. I am not 110# and that is way too light and don't like looking at bones and pale face though Graham says I look quite well! (the blush and lipstick help). So I am trying to drink and eat and also full fat milk. Will keep you posted. Will see what the questran does. Hope that the carafate works for you Dawn.

I have another quirky "natural remedy" for heartburn. Don't know whether it works but will post it next time.

Take care Dawn and Kim

Carolyn

Hi Carolyn & Dawn!

yeah that Nissen wasnt fun but its done and over with now! Its funny I hear alot of negatives things on that surgery now from Gastro's whereas back in 2001 when I had it I guess it was all the rage LOL

Stupid me feel for it.....:)

I hope you two start feeling better I know all too well about the restrictive diet I NEVER eat anything acidic or spicy! Its funny my kids know exactly what i can and cant have its sad too though because I think I kinda passed that diet off on them! How rude of me! I will make seperate things for them though like PIZZA we make them ourselves mine is veggie and cheese theres is peporoni and SAUCY! you know we cant eat that!

And Im not always positive I have really really bad days and break down and cry especially lately but I have to have faith and trust in god and know He will heal me... I cant give up! nothing to too BIG or small for Him...

Hang in there!

My dad is doing the blood diet! He is type O and he will not shut up about it!

He is doing it to the T!

He calls me and tells me every little detail! He wants me to try it too for all my issues but I need to see and also find out what my blood type is! Its terrible I dont even know it! He is coming to visit me soon and bring all the info he has on it DVD's and Books! I live very far from my family about 1000 miles I moved last year from S FL to Tennessee but my older sister is close by but she and her hubby are moving next year!

Ive been on that Carafate and Aciphex for a few weeks now and I really cant tell if Im better or not I am still ahving break thru reflux and that pain in my throat when I swallow not every time but sometimes then I will (this is gross sorry) spit up FOAM! and acid I guess then the pain subsides somewhat in my throat and then the good old burn comes along to keep me company through out the day!

AUGHHHHHH serenity now LOL

It will get better I know it!!!!!

thanks for listening or reading my rants!

Your in my prayers

KIM :P

Hi Kim and Dawn -

Having a not so good day today. Woke up and was quite bouncy - went off to work with just the whiff of dizziness (and dia.... in fact had to turn round and come home for 10 mins). Got to work and the dizziness stayed all morning and I felt nauseous. This I believe is part of the Vertigo stuff (can you believe these things act up together?). So like you Kim I feel like crying today and I am also very very bad tempered and grumpy. We have a young man coming for dinner tonight. He is a friend's daughter from near Edinburgh and as Eddie our son is here too that will be nice but.... How am I going to cook. Thank goodness for the grill and weather - Graham is great like that and will take care of that end of it.

Having felt better over the weekend today I have pain. Why do we come and go like this two good days followed by two horrible days. It is so hard to plan anything. Anyway thinking about you both and SO glad that you are both there. You are both in my prayers too. I am glad that the Flora probiotics are working well for you Kim I take two of the probiotics that I take, a day. How much of the Flora do you take and who makes it? I must say I had to resort to Immodium today. I took two doses of

Questran today, but Dawn you said that you didn't find it constipating! I shall hav to see how I do on that for about a week and see if it makes any difference. I did think that the pain in my stomach was getting better but then not today.......

Oh well.

Tomorrow is another day......

Feel better both of you and hope you are having a good day. The dizziness has subsided thank goodness.

Carolyn

Hi Kim and Carolyn,

We are all having quite a time of it, aren't we? The Carafate seems to be helping my burning a bit, but trying to find an eating schedule around it (must be taken one hour before any food, no other meds for two hours after, take 4 times a day) is challenging. And I think it takes away my appetite. It sits like a block of cement in my stomach and I am just not hungry.

I too have a new symptom. I have a pain behind my sternum that feels like gas. Could it be acid reflux now? I don't even want to think of any other possibilities right now.

Kim, I am sorry to hear about your throat and burning. When will your Dr. be back from vacation? It sounds really bad and I am worried for you. And Carolyn, dizziness, nausea, and D. What a horrible combo. Hopefully the Questran will help with the D. It really wasn't constipating for me, but I guess everyone is different. I am having a much worse time with the Carafate. Maybe you need to up the doses. But the nausea could be the Questran, because I experienced it too. I read that those symptoms go away over time, but who wants to feel sick until that happens? And if you are only getting 1,500 calories in and still losing weight, perhaps some of the dizziness is related to that? I once read that the starvation cut-off calculated by the WHO is 1,200 calories. I think that is all I get in a day and some days that is hard to do.

It certainly is hard to have a life with this. My husband and I bought a house in Vermont last year so we could eventually retire here. We decided to do the long distance thing since he still has a business in PA. My 24-year-old daughter is living with me right now. She returned to nursing school after getting her Biology degree and breaking off an engagement. My husband was just here for 10 days and about half of them I spent in bed. We had so many plans and most days I just couldn't get past the pain. And of course your friends and family want to eat, but when you feel horrible who wants to cook let alone eat?

I am so glad we are here for each other. There isn't much else we can do but rant and rave and hope for the best. Take care both of you and stay in touch.

Dawn

HI there Dawn & Carolyn,

AUGHHH I told you Dawn that Im taking the carafate too! and yes its pain in the butt to schedule taking htat and EATING when you never feel like eating!

I was hungry when I was in church on Sunday night and I was like I HAVE to take that carafate before I eat! So I carry a smaller bottle around with me and a little dosing cup and took it in church LOL

I was like look at this!!!!! I just had to laugh because Im so pathetic with these meds I honestly dont see what difference that medicine is doing? But he said I need it due to the results of my biopsy!

I did NOT have a good night last night I couldnt even eat my 6 inch sub from Subway nothing on it except ham turkey and provolone thats it NO toppings or mayo nothing but I like it like that! I had a few bites and felt sick! Im starving but I cant eat and my throat my hurting and ever since I had that Nissen I have gas in my chest but cannot burp that is the worst feeling in the WORLD! well one of the worst!

and guess what Carolyn today Ive had Dia.... like 4 times already and its only 11am!!!! but Im like well at least im getting it out LOL i know thats gross but Im going to an even tonight at church for the 4th of July they do it early its awesome huge huge Fireworks and of course FOOD I cant eat! LOL Ive never been since I moved here in July last year so Im looking forward to celebrating USA!!! but without the food I decided since I cant eat I will have smoothies and soup until I see my Dr which is on 7/25 Im just going to wait becuz I dont feel like dealing with changing the appt etc!

Im so over this Im giving it to God and waiting to see the Dr I will really watch what I eat till then

I hope you 2 start feeling better I so understand all you both are going through when you cant do certain things or go places, Its really hard because I have to work Im a single mom and I have to cook for them and they have activities they have to get too but they are 13 & 11 turnign 14 & 12 in the next few months and God has gotten me this far! I know He will see me through the rest.

 

Take care

Oh ps Im getting the millions of noticfications now !LOL

Hi Dawn and Kim -

Well we are in a sad state. I know what you mean about trying to burp Kim - I just had Eddie (my son) bang me on the back like you would burp a baby!!! (Never thought it would be the way round and he burping me!!) Still doesn't seem to help much even when some burps pop up. I am sorry to hear that you have had Dia too. I hoped the Questran would help - but it seems to make me nauseous. I shall have to perservere though and see. I do take Immodium on as needed basis - though it is yet another pill to pop. If there was some consistency in this whole thing it would be so much easier - but it is good days and bad days and, some symptoms some days. Do either of you keep a food diary or symptom diary? I lasted about a day doing it. I agree with you Dawn it is hard to eat much. I had lunch out with Eddie and had a panini which had chix, avocado and a little swiss cheese and feel horrible now - going out is never easy as there is never anything that appeals or you know will keep you up all day. Got to cook dinner tonight - I know just how you feel. It must be nice having your daughter there with you for a while but I am sorry to hear about her broken engagement. I hope that she is ok with it. Sometimes these things are not meant to be though hard to see at the time. It must be lovely living in Vt. though not when you are feeling bad. We moved to Palm City (N of W Palm Bch) from Coral Springs in Fl. 3 years ago. I like it so much more up here and love the house but don't like seeing so much of the inside of it!!!

Do you ever feel just simply strange. I have been to ER several times with cardiac type symptoms which seemed to be nothing. Tonight I feel lightheaded and with pressure around my head. It makes me feel anxious which makes the whole thing worse. I had a couple of palpitations earlier so I don't know if I am just in panic mode. Maybe I am holding my breath and need to go and take some exercise. I tend to suffer from anxiety somewhat so these symptoms are really great for anxiety too!!!!

I hope that you find the energy Kim with the girls. That has to be so hard when you are not feeling well especially working too.

I shall have to go and delete the 60 or so reminders I have in my email. LOL

Talk soon and do hope that you have a happy safe and healthy 4th and may it continue onwards like that.

Carolyn

Hi Carolyn and Kim,

Yes, we are in a sad state. I was really hoping that by now I would be back to normal. Carolyn, I felt really nauseous from the Questran too and have been better since stopping it. The Carafate doesn't seem to do that. I had the dizzy, wierd feeling for the first week or two after surgery but that went away especially as I began to at least eat a bit more. If you are prone to anxiety, that also produces excess bile (as if we didn't have enough since the surgery). I haven't kept a food/symptom chart and kind of wish I had. It has been so long , symptoms all over the place, changing, coming and going, it just seems like forever.It is going to be difficult to come up with a concise account when I have to explain it all to the GI at Dartmouth on the 16th. Carolyn, thanks for asking about my daugher. She just finished her first year of nursing school and has one more to go. It is great having her here but I barely see her since nursing school is so intense. She is fine about the engagement. She broke it off one month before the wedding and I don't think she has ever looked back. She is concentrating on her career right now.

Kim, I hope you are hanging in there. I take the pill form of Carafate. I don't think I could deal with the liquid. I try to take only 2 or 3 a day so that if I sometimes get the urge to eat during the day I can have a snack. It doesn't sound like you are doing much better and I am anxious to hear how you make out after your appt. on the 25th.

I hope both of you have a wonderful 4th or at least a good day. We will have to concentrate on the fireworks instead of food. Please stay in touch and keep me updated.

Dawn

Hi Guys!

Well my Dr's office called me this Am from the message I had left when they were on vacation..... he wants me to do a barrium swallow since I have the painful throat issues....and to start on Reglan not the Welchol as the other Dr suggested! Man o Man am I over taking meds!

I am glad to do the test though I want to know whats up in my throat already!

I think I had one of these tests but it was back when i was 13 so its been awhile!

Well I will find out when thats scheduled probably tomm.

I had a great time at the Celebrate America event at my church the FIREWORKS were amazing! they did have Chik fil-A cater and Backyard Burgers but of course I didnt eat any of that I had a smoothie! and ice cream it goes down and doesnt bother me!

THis is how I felt right after I had that Nissen AUGHHH!!@@

oh well I know I will find out whats going on and it will get better God willing!

My sister and mom are nurses they work insain schedules but they like it!

Im in the medical field but in the back BILLING patients the company I work for does billing for the Dr I see which is good I dont do his billing though I do OBGYN

Anyway I hope you both start feeling better Im glad you have your hubby's and family around I know that makes it better If I didnt have my friends from church here I wouldnt be HERE! Id move back to FL

Take care

HAPPY 4th!!!! YEAH AMERICA 1776!!!!!!

Kim

Hi Dawn and Kim -

We were away up in Orlando dropping our son up there on his way back to Boise and then back to a barbeque last night. Sad saying goodbye to Eddie.

Well eating at the barbie was a great mistake there wasn't much there that I could tell wouldn't kill me. Mind you the food I ate was not sensible. Too much fat and sugar too I suspect. I worked all day and had the dreaded D...

Took immodium but still having problems and pain too. When will this ever stop? I know that I eed to write down everything that I put in my mouth and the time and see what reaction and when. I dropped the Quetran - couldn't hack feeling nauseous, pain and D... so I still just take the Pepcid at night. Getting very disheartened, depressed from time to time but so glad to have you two to feel not alone but wish that you two were getting better too. Sometimes I think that they must have missed something and that I must have some major tumor or something and it is just because of you two that I don't panic. We can't all be having the same things by "coincidence" and having read other blogs we are not alone. One of my great friends Liz had her GB out 2 years ago. She is huge - must weight 250+ - had the pains on Monday, the operation on Friday and never looked back. I wonder whether it is because she is so large that the excessive fat presses on the bile duct and keeps everything under tighter control? Why do some people sail through and lots don't. There had to be a reason. I am only waiting for the gluten test but suspect that will be negative. Not sure where to go next. If I go to the GI guy he will needless to say want to put yet another tube down my throat - it would be third in a year. There is a nutritional doctor who is in town - I am tempted to try him soon as he was quite helpful with a friend's mother with a fairly similar situation. What happens if we cut out fats altogether - does the bile not rush out then or does it just rush out when the "food's coming" message gets to the liver. I think that I am going to take Immodium on a regular basis - though it does dry one up. My eyes feel dry which makes me sleepy!

I do hope that the barium swallow goes well Kim. I do not have the post up to reply to you both. I hope that you are both feeling better and not losing weight.

Take care,

Carolyn

Dear Kim and Dawn

 

Sorry for these extra posts but I thought I would forward this to you. I have for ages had "The Liver Doctor" Sandra Cabot who is an Aussie and wrote a book called "Love your liver". So I wrote a couple of days ago and I hope that I am going to forward the reply to you.

 

I tried to adhere to her book for a while. I found the LSA (other wise known as FSA flaxseed, Sunflowers, and Almonds ground in a 3/2/1 ratio. We always sprinkle it on cereal, shakes, fruit salad if liked, yoghurt, good on baked fish too. Great for the oils too and the nuts and so good and the flax for fibre. Anyway I will try and attach reply. I have to say that over the years I have done the gallbladder flush quite successfully and thought that I would have to avoid surgery. It wasn't much fun to do but I did get many stones out. Her email follows and mine is underneath it. I don't know if it is any help but I might think about finding out how much it costs to join. Her main website address for browsing is

 

http://www.holistichealthtools.com/liver.html

 

 

 

(Carolyn)

 

 

 

"Thank you for your email to Dr Cabot.

 

Generally speaking the gall bladder becomes diseased or dysfunctional because the liver is producing unhealthy bile. The bile is either toxic or contains excess amounts of fat and bacteria.
To improve gall bladder problems, we must improve the quality of the bile, by improving the liver function.
Even after the gall bladder is removed there may still be problems in the bile ducts inside & outside the liver. This is because the underlying problem of toxic bile has not been corrected.
Indeed after gall bladder removal the following things may still happen -
Stones & gravel may form in the bile ducts inside & outside the liver
The liver may develop fatty changes

 

Thus it is important to take extra care of your liver if you have gall bladder problems, or if you have had your gall bladder removed.

 

This is a free email service provided by Dr Cabot. These suggestions help to address the symptoms you describe.

 

For a more personalised program - you can join at GOLD MEMBERSHIP level. This entitles you to your own nutritionist/naturopath for help with health and weight issues. You can either rejoin at gold level or downgrade to silver or bronze level.

 

Your own personal naturopath/nutritionist will consult with you via email on a weekly basis - you will have an extensive history questionnaire analyzed and you will be given the exact correct eating plan for you. Your personal guide will give you dedicated advice and inspiration. This is invaluable for those who are always giving up, becoming depressed or for those with metabolic resistance.

 

To join gold or silver membership online please see: http://www.weightcontroldoctor.com/ and http://www.weightcontroldoctor.com.au/

 

 

Love your LIVER and LIVE longer

Sheree Ward BADipCNCDipFEADipIrid
Online Team Supervisor
for Dr Sandra Cabot

 

Email: http://us.f381.mail.yahoo.com/ym/Compose?To=shereew@weightcontroldoctor.com

 

All correspondence and advice from our Naturopaths stem directly from the information you have supplied to us during your initial consultation be it verbal, written or e-mail. We cannot be held responsible for medical problems that arise if you do not disclose any pre-existing conditions, problems, allergies or any problems that have arisen since your initial contact with us. As a natural health advisory service we are not intended to replace professional medical advice and you should always consult your doctor or health professional before commencing a new diet or consuming any medication.

 

 

From: gcernestjones@yahoo.com [mailto:gcernestjones@yahoo.com]
Posted At: Tuesday, 3 July 2007 10:26 PM
Posted To: Inbox
Conversation: LD Contact: Carolyn Ernest-Jones
Subject: LD Contact: Carolyn Ernest-Jones

 

Dear Sandra - I regrettably had to have my gallbladder removed because it was diseased and had polyp (which ended up being benign). The ejection fraction of the GB was also 27%. I had had epigastric pain (between shoulders) and less in the abdomen for well over a year and my GB had been sluggish for the past 10 years. I have done gallbladder flush several times. There were no gallstones present at surgery. Since then the pain has worsened, - I had bad heartburn tried the usual nexium prilosec, protonix but none worked. Now I take Dr. Vogel's digestive drops and aloe before meals also a probiotic. I now have the dreaded diarroea. I still have the epigastric pain. I have lost too much weight because I am not eating enough - also I stopped drinking the 2 glasses of wine that I like so - calories limited. I know I need to eat more and I am trying. Do you have any suggestions to help me - I do realize from all the other blogs etc that I have read that there are SO many people out there who are miserable for the same reason. It is believed to be bile reflux. Do you have any helpful advice for me. Thank you.

 

Carolyn

HI Carolyn & Dawn

Well I had the barrium swallow it was very nasty and weird but whatever its over!

Dr cld me today said I have very very severe reflux the Nissen Fundo surgery I had for the reflux back in 2001 is no good and did nothing for me!

He said bile has to be coming up as any liquid/acid/bile in my stomach would come back up...

He now put me on Reglan and said to continue with the Aciphex and Carafte but Reglan has funky side effects like anxiety,depression insomnia etc... and drowsiness go figure! LOL I think I have all that w.o the Reglan LOL
ANyway he was telling me about a drug that works the same as reglan (which basically strengthens your muscle that keeps the acid down) I cant remember the name of the other drug but its not approved by the FDA and if I wanted to start it I would have to sign a wavier!

And of course my insurance wont cover it he thinks its about 80.00 a month I cannot afford being a single mom an all

So IM waiting to see if the Reglan causes any side effects I cant handle but Im really praying and have my faith in Jesus I know it will get better!

My girls are coming back in a another week they have been in FL while all this has been going on visiting my parents and going to summer camp!
I miss them terribly..... so I know how you feel when your eddie left!

Im going to get a Gluten test as well!

I heard about it from my Gastro and I have a regular appt with my Internest so I want to see if she can run that for me since I dont back to th Gasrto till 7/25 and I see her on Monday

WEll Im gonna run I pray you both are feeling better!!!!!

Hello to Carolyn, Kim and Nancy,

There are so many posts I want to respond to, but I don't want to overload our mailboxes. I will just post one to everybody.

Carolyn - How are you doing since dropping the Questran? I understand how you feel about being depressed and talking to people who had GB surgery with no problems. I also know a very overweight woman who had an attack one day, was rushed in for emergency surgery the next, back to shopping and eating the day after. These are the stories I heard from everyone and why I decided to have mine out.

You were talking about cutting out fat and how that might affect bile? I just wanted to let you know I am on a very low-fat diet probably 10 grams a day and it has not reduced my bile flow. I asked my GI if the purpose of bile is to metabolize fat, and I have an excess, why wouldn't it help to eat more fat? Actually I get more burning when I try it. He said it is because the bile is in the wrong place. It is not supposed to be in your stomach. So great, now that the GB is gone with no place to store bile, it is just rushing out uncontrolled and refluxing into my stomach. He also told me excess bile can cause nausea which is what I believe is happening to me. The Carafate helps, but first thing in the morning I wake up nauseous. The body produces more bile during sleep when you are empty. This whole thing is like an never-ending nightmare. Carolyn, I too worry that there is something more seriously wrong, but I have read that post cholecystectomy syndrome (anyone with continuing problems after surgery) ranges from 10-40%. I think that is pretty high no matter what the doctors say.

Kim - I am truly sorry that you are having such problems and that your Nissen is no longer working. It is ironic that surgery is always the definitive recommendation. So it is either take tons of meds to try to live with the problem, have surgery which causes more, and back to start all over again in a vicious cycle. How are you doing on the Reglan? My GI said we could try it, but he hates to prescribe it. Most people don't have the nasty side effects but he said with my luck I would be the one. Glad to see he has such a sense of humor, j/k. The other drug you were talking about is Motilium or domperidone. It supposedly works great for GI problems but there were some reports of cardiac arrests. It is not approved by the FDA but you can buy it in Canada and every other country. Hang in there until the 25th and please let us know how you are doing.

Nancy - Welcome to our little club. You are only four weeks out from surgery. I am now at 9 1/2 weeks. I still have strange pains where the gall bladder was removed (twitching, stabbing, etc.) and sometimes elsewhere in my abdomen. I think I am a very slow healer and I worry that maybe this isn't normal. But I think if it was something worse (bile leak, sphincter of oddi, pancreatitis, etc.) I would be in much worse pain. As you probably read, I am still nauseous. I definitely think the Questran made it worse, but I still have it first thing in the morning. You said that you were experiencing similar symptoms. Do you have mostly D or the heartburn/relux or it all? Hopefully you will be one of the lucky ones and resolve soon.

I am thinking of you all and hope you stay in touch to commiserate! It is much easier going through this with my buddies.

Take care,

Dawn

Hey there everyone!!!!
Real quick Dawn where do you live???? Is it outside the US? I just had the assumption......THe Reglan seems to be doing the job I do notice some side effects but nothing major though thank God....... and Ive actually been feeling better!!!!!! YEAHHHHH Ive been eating and sleeping I give the glory to God though because this has been a tough ride without Him I wouldnt have made it I beleive Im turning a corner!!!!

Im going to get the gluten test and also to see what blood type I am so I can MAYBE start that diet even if I dont start it my CRAZY DAD lol wants to know since he's on it and its doing wonders for him!!!

Welcome Nancy you will be added to my prayer list as well!!!! Im sorry about your issues too bad we alldont live near to eachother and we could have a support group in person!!!!

I hope your well Carolyn!!! Let me know how you all are Im keeping busy well trying to anyway till my girls get back!!!

Take care

Kim :P

Hi Kim,

No I don't live outside of the US. I live in Vermont which some people say is like living outside of the states, :) . I am a psychologist and also teach pharmacology (mostly psych) courses in college. I guess I should make that past tense since I am now in early retirement. I just moved to Vermont last year and have been enjoying fixing up my house and taking it easy for awhile until the dreaded gall bladder problem.

I am so glad you are starting to feel better with the Reglan. What side effects are you noticing? Hopefully it is just something minor. Let's keep our fingers crossed that this is the medicine you needed.

Take care of yourself and your girls. Here's to continued improvement.

Dawn

Hi there everyone!

I went to my reg. Dr this am for some blood work to see what type I am so my dad will be able to diagnosis me LOL and treat me

also to see if Im gulten intolerant!

so will see about that pluc she wanted to check my anemia <----yes I suffer from that also!

Dawn--- My side effects from the reglan arent that bad I did notice when I first started taking it I was very tired and fell asleep when watching TV which is soooo not me I have not been able to sleep that well but I never can so I dont know if its effecting me that way or not! I think it anything major was to show up it would have by now?

and its the cheapeast of my meds $6.00!!!! LOL

Well I hope your feeling good Im hanging in there yeterday wasnt the greatest but it wasnt the worst!

I hope your doing good Carolyn & Nancy if your here!

Hi Kim,

Ugh! Blood work! Having my blood taken has always been one of my worst phobias and I am still not over it yet. I am sure I will soon have to have it done again. Yikes!

But it will be good to have a few more clues from the results for you, Kim. You will be able to start the blood type diet and maybe find out if you have celiac or anything else. I certainly hope I never find out I am gluten intolerant. If I had to give up bread which is about the only thing that doesn't upset my stomach, I would starve to death. I can imagine you are anemic considering you can barely eat anything. I have been adding whey protein to my smoothies to try to avoid that.

Isn't it nice when a drug is cheaper than you imagine? When I went to pick up the trial of Welchol, it was $217.00 after my insurance! $60 is a bargain! And the side effects of the Reglan don't sound too bad. I think most wear off over time usually within 2 weeks.

Sorry to hear you have not been having good days lately. It is the same with me. Up and down, better, worse. I am sure you are missing your girls terribly too. Take care of yourself and hang in there. Keep us posted.

Carolyn and Nancy - Hope you are doing well. Stay in touch.

Dawn

Hi Kim Dawn and Nancy -

My last post did not seem to get on to the site and I am wondering why. I replied to you on Monday. I will try and send this two different ways. I am anxious to chat so will try again and see if it posts.

Carolyn

Could one of you reply to me so that I can get back on the thread.  Thanks so much

C

Hi Carolyn,  I came across your letter of June 28th.  Because of all the symptons that you and Dawn have I also had a procedure in which a stent was placed in the biliary track that conects the pancreas and the liver.  The effects after the procedure were terrible and I still have some of them. I lost 25 pounds and I am still struggling to eat.  THe simptoms that bother me the most is this wear feeling I get in my hole body, weakness in the legs and arms and a headache in both my temples. All I want is lay down . THis will last for about 45 minutes.  After seeing 5 different doctors I went to see a Kineologolist at a Health and Energy center. She told me that I had food allergies to Soy and mainly to all things that contain sulfates, no more RED WINE!!!!! etc etc ,  My symptoms after the procedure intensified because of all the drugs and anesthesia conteining sulfates and will stay in my system for a while. How long? I don't know  She also told me to have a test to meassure the levels of copper and Zinc in my blood, this is critical for perple that suffer from Bile and acid reflux. I was also prescribed something call BILE-k and some Probiotics which I started to take 4 days ago . I have notice some improvement.  I will let you know if this continues.

Hoping for the best

Manuela

Thank you for the information. I seem to have more D than anything else though I have pain in the upper right quadrant.  I am going to have allergy testing next week just to make sure that there is not anything else.  Interesting about the copper and the zinc and the probiotics and the bile prescription.  I do hope that you feel better.  It is wretched really.  I am also on Cymbalta (an anti despressant for digestive pain) and take Xanex to sleep (anti- anxiety).  I think I am have IBS basically now - with the odd bit of bile reflux.

Take care and keep in touch and most importantly feel better.

Carolyn

Dawn,

 

I want to say I completely understand and relate! On March 1 2007  I had mine removed as well, having problems the second day after I became myself, from the medication from surgery.

 

Well, after further testing around with the same medications and all that, I went to a drink study, awful. They said I didnt have reflux though, nothing was showing but with in 5 minutes of drinking that horrible sweet tasting chalk, I puked for a day non stop.

 

So, I was doing some experimenting because I have been having a problem with my whole GI track. First I had the watery BMs then I been getting binded up. I had lost about 50 pounds before surgery and since the surgery, eatting the best foods possible and how I orginally lost the weight like crazy which was still not effecting my body now. Protien is really hard for a body to digest, so I have experienced and been told. But here is where it got better but took a lot of getting worse and switching around medications.

 

That first medication you were on, which was what I was on, the OTC and then first RX medication too. It does nothing at all. SO, I though. I have found, even if you dont take the pill but I have not done it for long with out it.... Take a teaspoon of honey!!

 

I dont know if you are aware of the numerous benefits of honey can do for one person, but.... let me explain before you think I am crazy!

 

Diluted honey can sooth an upset stomach. Since we need to stay away from soda beverages, because of the flare up from soda and the gasses related to that causing it to be really bad, which is where most of the weight gain came from but not all of is. I had a lot of water weight, tension and paining in my sides from pressure of gas and water. Its actually going down.

 

In Europe, they have already treated stomach ulcers with honey for several years.

 

If you dont know your local just get a jar at the store. If you start noticing this is helping you, please pass the word. I lived in hell for a few years and wished I had something to counter act the effects of stomach trama.

 

Cross my fingers for you....

 

 

Thanks for your post Nancy. Sorry that you are going through this too. What symptoms did you have before you had the GB out? I do think some of these meds don't work but then there seem to be so many out there doing different things it is hard to know which to take.

Some good days, some horrible days. I must say if anyone says that they want to have theirs taken out - then I would definitely tell them to think twice about it. Take care and feel better'.

Carolyn

It seemed as though I suddenly had symptons but when I think back, I just didn't connect the symptons to my GB. It seemed as though suddenly I had a sharp pain in my upper right quad but I knew it wasn't my stomach. I had a CT done in 2005 for some other health issues and the gallstones had shown up at that time. After seeing the doctor recently with the pain, I went in for a sonogram (which I basically cried from the pain when they performed it and that is a simple, test that shouldn't hurt. I also felt like I was going to throw up, I had the runs and felt feverish. It happened pretty quick with me getting it removed. I'd say about 1 week from the sharp pain starting, etc. to removal of the GB. I have to say I still feel bloated, I will get a pain where my GB was but my doctor says it due to all the nerves that are cut while doing the surgery. Alot of people told me this was simple surgery and your fine afterwards but I'm not finding that with the issues I still experience. I hope they get better. Take care and I hope you are on the road to feeling better.

Hi Kim Dawn and Nancy -

My last post did not seem to get on to the site and I am wondering why.  I replied to you on Monday.  I will try and send this two different ways. I am anxious to chat so will try again and see if it posts.

Carolyn

Hi Carolyn,

Dear Dawn and Kim -

So glad to hear from you.  I think I put in the wrong password when I wrote yesterday.  Now I have not got your previous posts up to refer to.  How interesting your work sounds Kim - so you must know lots about phamacology.  I am so sorry that you have retired and feel so bad.  I seem to be getting worse and I am really getting concerned about it.  The D is a daily issue and I take immodium but not sure how much to take.  I have a fair amount of pain on and off, but have felt very strange in the last couple of days.  I have had a low grade headache for about 2-3 weeks intermittently, and still get the achy arms and legs, feel shaky, and also tired.  I am grumpy and feel sorry for Graham too.  The only thing that I am taking apart from the Immodium is the pepcid ac max at night.  I did not want to add nausea to the symptoms taking the Questran - though I have to say I have felt quite nauseous that past couple of days although yesterday at work I was fine.  Go figure.  I wanted to get an appt with the Dr to discuss what to do next and had made an appointment with the GI guy for tomorrow but don't want to go till I see my Dr but not sure when I will get an appt with her and so it goes on round and round.

This is getting so old. I worry about getting pancreatitis and then worry more that there is still a tumor lurking around.  My husband still thinks I look quite well though I don;t think I look that great.  I thought I had gained a pound on Sunday and then Sunday night we had a friend for dinner and I could not eat anything at all!  I was really trying to eat lots too. 

When is your appt Dawn - my brain has forgotten where it is - isn't it this week some time or early next week.  Is this the one where they will biopsy your polyp?  How are you feeling and is anything making you feel better?  Do you feel tired too sometime?

I hope Kim that the burning will soon stop for you.  I wonder if the blood type diet will help you.  I think that the aches and pains that i am having is from too many carbs but then what else will I eat?  AAAH!!!!

On another note it is very hot in S Fl and we have had some much needed rain though Lake Okeechobee is not filling up yet.  We live about 6 miles from the beach and I would love to go as I love the ocean but it is too hot to sit outside when you don't feel that great.  My birthday is on Sunday and the only present I want is my health back - nothing else, zip, nada - just my health.   I need to seriously get down on my knees is what i need to do!

I hope that you two are feeling better.  I got into quite a panic when I could not find my last post - but so glad to be back on the thread again.  It is so nice to have you two there.  Your girls must be coming back this week Kim.  How nice.  Yes I miss Eddie but he is happy running in Boise!!

Take care both of you and talk soon.

Carolyn

Hi Carolyn,

Dear Dawn and Kim -

I shall try and reply to your conerns and question Dawn.

 

 

When you say you have pain, where is it? Where they removed the gall bladder, in your abdomen or stomach, or just all over? I still have twingy pain where the gall bladder was removed and down my side which I think is the bile duct. Sometimes I have left sided pain which worries me because of the pancreas but could just be splenic flexure syndrome. ARGH.... too many things could be wrong and no way to find out.

I just thought that I would reply to your last post as there were a couple of things I wanted to refer to. Well I did go and see the GI md today which frankly wasn't much help. He was about to prescribe the Questran and I told him it made me nauseous so suggested the Welchol. So he agreed. I asked him specifically about the pain. Why do I get it? Well are you still having it after the GB surgery? Yes. Well frankly I don't know. Didn't suggest anything else, checked my tummy and chest etc asked where the pain was and said he thought it was probably IBS. I have never had IBS before and I had the pain before. So I said - well shouldn't that be lower down? So he said well it is part of your dig tract. True. However that was it and it did not leave me feeling very much better off. I have the Welchol script and will fill it - maybe I should have persevered with the Questran. My pain tends to be sometimes about 3" below the sternum more on the right side and sometimes it is more under the ribcage on the right side. Now and again it is on the left.  My whole abdomen gets really sore with the D however and is so noisy too. Yesterday and this morning I felt quite nauseous with that deep gurgling gnawing  feeling. I still wonder whether there could be a stone stuck somewhere, in one of the bile ducts. This is really the same pain that I had before I had the GB out. I did not have any stones in the GB. I worried about the pancreas too but he did not say anything and I should have asked - but as always too many questions to ask and not enough time..

 

 

I will take the pepcid 2 x a day now. Not sure what the carafate would do for me. The D is the most pressing problem though the heartburn (on and off) and the pain are no fun either

 

My appointment at Dartmouth in on Monday. No, they are not doing a biopsy, I insisted on a consultation first. The nodule was an incidental finding during the endoscopy and is not related to this problem of bile reflux. They are going to do an endoscopic ultrasound whenever I schedule it. I want to discuss this complication of the cholecystectomy and see if this GI has any better ideas. I am hoping that since it is a big teaching institute, he will have come across more cases like mine and have some answers. My surgeon has never had one and my GI in town has heard of them but not had any. Lucky me. When I have the second endoscopy I would like to have the bile checked out again and see if it has caused any damage now that is has been two months. I figure if they are in there anyway, might as well do it all.

 

Endoscopic ultrasound - I guess they put the tube down and then do the ultrasound inside? I do hope that the bile acid has not damaged you. I am sure that is what my problem is - especially as my GB was only functioning at 27% before. (He did say that the HIDA scans are not accurate as they give you a hormone to check the function rather than fat that would normally activate it).  I hope that your pain is just the normal one (what is normal?) and not something else but sometimes you really wonder.  I had a horrible night last night.  I am tempted to go back to my old GI and will do if things do not improve.  I am also thinking now of going to the Dr. who is a nutritionalist and see if he has any bright ideas. I agree about asking them to do everything at once while they are at it.

 

I shall be thinking about you with your appointment next week and just hope and pray that they get to the bottom of it for you (and also selfishly for us too!!). 

I wonder where Kim is I do hope that she is ok.  Maybe she has gone to pick up her girls. Hi Kim if you are there.

Take care and talk soon.

Carolyn

 

 

 

Hi guys im here

 

and no I havent been feeling good just wanted to tell you I read your posts!

 

Ive been having breathing issues feeling short of breath went to my regular Dr she tested me for asthma and did ekg but both were normal so she said its probably the acid reflux??? I still have my appt on 7/25 Im just praying I start feeling better Ive been staying over a friends because Im lonely w.o the girls they come home on SAT!!!!
Hey my b-day is next week!!! we share the same month! I will be the big 30! LOL
anyway take care :) Im praying for you both!

Kim

 

Hi Kim -

Glad to hear that yo are OK but so sorry to hear that you are feeling breathless.  That is horrid.  Why do these things move around so?  I have forgotten what meds you are taking?  Any of the acid reducers?  Do you think that they might make the situation worse?  My heartburn felt better when I came off them but I do still get it. It is more the pain and the D that get me and feeling tired or just out of sorts.

Well I hope that you have a lovely birthday - the 0's are always turning points. This year I turn 59 not quite an 0 yet!! I am still somewhat shocked that the GI guy had no answer or suggestions as to what to do with the pain.  Pain is not normal!

What can I tell you!  I hope that your breathing gets back to normal.  I am sure that anxiety makes it worse too. 

Take care.

Carolyn

Dear Dawn

Just a quick note to say that I will be thinking of you and saying a little prayer that you have a great and successful visit at Dartmouth tomorrow and that you manage to come back with some answers and helpful information but nothing serious that involves anything disruptive to your system.

Take care and I will update you later on what is going on here which I hope is becoming a bit more positive.

Carolyn

Hi Guys,

Hi Kim and Dawn

You must have your girlies back by now Kim how lovely I bet you missed them.  I hope that you are feeling better but......I know how it goes.

Oh Dawn - how frustrating for you - I know how you feel.  They have absolutely no idea what we are going through, how you can have nausea, D, pain in stomach and between shoulder blades, and they turn round and simply shrug their shoulders - dismiss the whole thing and make you feel like a complete idiot.  I am so glad that he felt that your polyp was probably nothing but wise to get it checked and have the endoscope - my polyp in my GB was negative.  So frustrating when you were organized enough to have a list with everything on, have the reports sent to him.  I felt just the same - and to dismiss the pain is what irks me most.

I felt great on Sat and we went away for the night to a beachside hotel and had lovely dinner.  Unfortunately I did not take my xanex - which helps me sleep and felt absolutely wiped out on my birthday and awful too.  (Also had wine and think that did not help). Yesterday I felt awful again, with plenty of D despite the fact that I am now taking the Welchol 3 x 2 a day. Things seemed to be better for the first 2-3 days but now they are not.  I feel nauseous after eating, have D, pain and then on top of that I have these bouts of suddenly feeling weak as though someone has pulled the plug out of the wall.  Also I have leg pains which I think are coming from my lower back.  My husband massaged my neck and midback last night and thought the muscles in my neck were bone!!!  I am sure that has all come about because I am eating more carbs than I have in ages and I end up with fibromyalgia type symptoms.  What else can I eat - too much fat isn't going to be good either?

I was pretty miserable yesterday and feel so sorry for Graham having to put up with my b----ing and whining, but one just has to do it to get it out of one's system.

I am going to the nutritional Dr next week, but think I might still go back to my old GI guy in Coral Springs first. 

I am just taking the Pepcid and Welchol - as well as digestive enzymes and the probiotics.

I do hope that you both feel better soon.  We have to find a solution to all this.

We should not feel like this.

I still wonder whether it is gallstones hidden somewhere.  That is possible though I would have thought that a ct scan would have helped find any adn I had one after the op.  It still mystifies me why are we feeling like this and others feel great? There has to be something that someone is missing somewhere.

Well good luck with the Nexium Dawn.  Did he think it was the best of all the AR's?  (thinking that if they were all much the same, would one of the others have been cheaper?)

Feel better too Kim.

Carolyn

 

Hi Carolyn,

Hi Guys

Man that so sucks about you having to pay for sooo much for the Nexium!

If it works it will be worth it though!

these insurance companies really need to reach out to people that are on theses PPI's we are so limited and have to take them and they are expensive!!!! There are so many people with this condition and you'd think they would have generics by now!

I mean for over 7 years I was on Prevacid!

I honestly do NOT see a difference with the Aciphex at all and its not covered at all with my insurance the GI is just giving me all the samples I need (thank God) I didnt even ask him He just is!

My girls are back IM so happy they are never leaving for that long again 5 weeks is too long!

Im still having reflux I stopped the Reglan I had some major anxiety/jitteryness etc and of course those are side effects I didnt really feel any better with it anyway my throat is still hurting but not as bad as it was though!

I see my GI next week I havent seen him since I had the Bravo study back in June and since Ive also had that Barrium Swallow a couple weeks ago that was loads of fun! LOL

Anyway we will get through this and recover I know it!

Take care know your both in my prayers that are heard by a loving God we only need to trust and beleive!

 

Hi Guys!

Dear Kim and Dawn -

I was going to write yesterday and had a meltdown in the afternoon.  Saturday was great my birthday and Monday were horrible, Tuesday was slightly better yesterday was the pits and I was at the bookstore - a/c broken 83F all afternoon so came home feeling ghastly.  So many symptoms decided I must have some awful cancer!!!  Anyway today I feel tired, still have the D legs and arms are sore (so is low back) have a headache and so on - so boring for all concerned.  I know how you both feel it is HORRIBLE feeling like this.  When did you last feel like a well person.  Everytime I go into the grocery store and they say "how are you?" and I say "Fine" it is a complete lie!!!!! I am not fine or enjoying this one little bit and I know that you two aren't either.  Thank goodness you are both there.  On an interesting note however when I got back and found your post today Dawn there was another from an outside and it was an answer from Todd Eisner from the AR website.  I am going to post it for you beneath.

 

Hello Carolyn! This is Krystle, Producer for AcidRefluxConnection.com. I want to thank you for writing great information on our site! Dr. Eisner has answered your question:

 

"Bile reflux can be a problem in both patients that have or have not had their gallbladder removed. Patients can take high doses of acid-reducing agents, but if the problem is bile, it will not have an effect. There are a few medications that can help with bile reflux. One is Carafate, which can bind the bile. Medications that empty bile out of the stomach such as Erythromycin and Reglan can help as well, but tend to have more side effects. You should check with you doctor as to what would be the best treatment for you."

 

Thank you for using the site, and if you have any questions or suggestions about the site, please give me a shout at kopacz@thcn.com. Have a great day!

 

I thought I would share it with you.  Food for thought - I wonder if the Erythromycin is a lifetime thing or just a one off.  I only tried Questran for a few days but did not want the added nausea.  I am still taking the Welchol but I am not sure how effective it is.  I take 3, 2 x a day.  I am also taking calcium too as the Welchol does not seem to do that much to help.  Interesting what he say about the acid reducers.  I found that they made things worse, though i am still taking the Pepcid.  (Sorry I think I have said this all before).  I am due to see the alternative meds. MD on tuesday and will be interested to see what he has to say.

I think that the whole of the digestive system is in stress and because our digestive system is part of the para-sympathetic nervous system (am I right there Dawn?) that is why we are having so much trouble.  I met a couple of Acupuncure physicians at a networking lunch today and one was saying that acupuncture can help with the digestive system. 

I am sorry to hear that you have had D for a bit Dawn.  May this just be temporary for your - for me too come to that. 

How lovely to have your girls back Kim - I say my grandson on Skype webcam - walking in England which was fun.

I have to go now because one of my Jack

Russells has rolled in a very very dead mole and I can't bear it a moment longer - nice distraction????!!!!

Take care you two and keep in touch.  Didn't like getting on the scales today - dropped a couple of #.  McDonald's, Dunkin Donuts and Haagen Daas - here I come (shudder shudder!!)

Carolyn

 

 

Hi Guys!
Man we are a mess the three of us!
I for one feel like garbage today!!!!
My reflux is HORRIBLE!!!! I cant eat at all since breakfast I feel really bad

You probably missed the post where I wrote I cant tolerate the Reglan due to the side effects I felt like I drank 3000 cups of coffee!

But my breathing is better I know its a side effect of reflux that acid/bile WHATEVER is sitting in my chest!

Im just not doing good I WANT TO PUNCH MY DOCTOR! LOL
I know that sounds bad Im just frustrated and want him to know everything HE IS SOOO NICE ha ha I cant beleive I said I want to puch him but I what I really want IS SWEET RELIEF AND TO BE ABLE TO EAT WITH OUT PAIN!!!!!!!!!!!
aughhhh were so pitiful at least I am! LOL
that post from the Dr about the bile reflux is right on! Thats all I keep hearing that the PPI's do NOTHING for the bile!!!! WHATS UP WITH THESES DR's we can treat everything except what we have it seems!

That bravo wasnt bad at all they did an upper endo so I was asleep I did notice it was there but it was tolerable and it falls off on its own after a few days

Well IM going on my knees all night tonight and Im going to pray for healing for all three of us!!!!

Talk to you guys soon!

Its my b-day 2mrrw and I dont eveen care I feel like crap! HELLO 30 LOL

Dear Kim -  (and Dawn later on!!!!)

 

I just thought that I would drop you a quick note today and wish you a very Happy and Blessed Birthday and my one wish and prayer for you today is that you would begin this year with the beginning of the restoration to full health.  I hope that you have a lovely day at work and that you have a lovely time with your girlies this evening.  I am also praying that Dawn and I will join you in the beginning of the healing process and that together we will find some way of finding solutions to these very tedius painful and stressful problems that we have been having! I will (continue) to keep you both in my prayers.

Take care and have a wonderful 30th birthday.

Carolyn

Happy Birthday Kim!!!

Carolyn,

Dear Dawn and Kim

 

I came across this today.  I was in search mode again!!

 

 

The question was (and it was put to Dar Mark Babyatsky at everyday health.com.

 

Q. Have you every heard of anyone who experienced digestive problems after gallbladder surgery (specifically chronic diarrhea)?  I've been told I probably have IBS, which seems like a catchall term, but I wasn'texperiencing the symptoms until after my surgery five years ago. - Jennavie

 

A: Cholecystectomy (removal of the gallbladder) is an extremely common procedure, and it leads to postoperative symptoms in 10 to 25 percent of patients. While these symptoms may be due to a previously unrecognized digestive disorder (such as irritable bowel syndrome, gastroesophageal reflux disease, peptic ulcer, or pancreatitis), symptoms that are first noticed following gallbladder surgery may be due to other conditions. These include:

• strictures - or narrowings - of the biliary tract, which carries bile from the liver to the small intestine;
  
  
• gallstones that remain behind in the bile ducts;
  
  
• dysfunction of the sphincter of Oddi (a muscular structure at the end of the duct system that transports bile to the small intestine);
  
  
• and a condition called cystic duct stump syndrome, thought to be caused by part of a long cystic duct remaining behind following removal of the gallbladder.

You mention chronic diarrhea - this typically occurs when the gallbladder can no longer store bile salts, which in turn causes what's referred to as bile salt &ndash; induced diarrhea. This can be treated with a number of "resins" or substances that can bind up the bile salts and other factors that lead to diarrhea after cholecystectomy. Patients with new-onset diarrhea after a cholecystectomy should seek specific counsel with a gastroenterologist, as this condition may be very easy to treat.

 

Carolyn says : I have to say I think there has to be something in "the gallstone lurking about"  I have wondered about that.  What would one do have another ERCP or would an ultrasound show it up?  I have printed out so many things I don't know any more, but thought it was interesting. 

 

Carolyn 

Hello, My name is Lynne.  Had chole May 7, 2007.  One wk later began with cough and now have rampant reflux.  Don't know it it's acid or bile.  Really scared.  Have seen too many dr.s all having their own opinion.  Can't get treatment or a straight story.  Effects family and emotions.  Difficult not to be depressed.  Breathing problems the most worrisome.  Like shortness of breath and sinusitus.  No one in the gastro professions seems to take this seriously even though it is destroying my life.  Concerened about developing Barrett's syndrome.  Seems as though your postings have been the only ones that confirm my experience.  Dr.'s really like to highlight how much I am an anxious womam rather than how debilitating the symptoms are.  This makes me feel diminished and angry.  How could anyone not be anxious experiencing all of these horrible symptoms with no clear relief in sight.  My dr. suggested I adapt.  To what?  Becoming an invalid.    Lynne

Hi Lynn,

Hi Lynn

Welcome from me Carolyn too.  I am sorry that you have to come and join our club.  I wish we were not in existence except that I am so happy to talk to Dawn and Kim who have become my dear support group since I had mine out and that was about 15 weeks ago.  You are not alone and we know exactly how you feel.  I have to say that I was much more anxious about this before I joined the group.  I was anxious that the meds. had missed something and that I had cancer of the somewhere.  Well I still could have but somehow doubt it.  We all have these different symptoms - my reflux is not as bad as Dawn and Kim but my D is not good at all and we all have pain. (this is it in a nutshell).  I posted yesterday that between 10-25% of people post Gallbladder removal have these problems.  That is small but why don't the others.  How can the Dr's dismiss us so lightly?  Anyway please feel free to share your comments, thoughts, meds, pain.  I don't know what I would have done without Dawn and Kim they keep me sane!!

Take care.

Carolyn

Hi Dawn-

 

I am having trouble getting on to the website.  I finally got a message from someone at AR replying to my original post to Todd Eisner.  I emailed back and told her about all the notifications I was receiving.  Now I can't seem to find the thread at all and only managed to find it by searching under Dawn D in the search area.  Very confusing webpage!

Anyway how are you doing on the Prevacid?  Did you start taking it? 

I hope that you are feeling better.  What troubles you most is it the reflux or the pain?  Mine is the pain and the D.  I am tkaing Welchol 3 twice a day as per instructions, also added 2 420 mg calcium 3 times a day.  Neither seem to be doing much for me at all and the D continues.   It is something like 2400 mg of calcium a day.  Did you say that excess calcium is excreted.  I hope so!! Very sick of pain and D.

Anyway I hope that Kim you are doing better if you are reading this.  I hope that I haven't lost you both....! 

Please post back if you would like so I can get back onto the thread.  Thanks.   Hope you had a nice weekend.

Carolyn

Hi Carolyn,

Hi Dawn -

I am so pleased to hear from you - not that I want to be a pest.  Wow I cannot believe that Protonix is so expensive.  Actually United Health care stopped paying for Nexium and the Prevacid and Protonix I took were just samples so I never found out the true cost. I think I stayed on each of them for just over 2 weeks.  I have to say that the by the time I got to the Protonix - my heartburn was much worse.  My GI doctor said that the three were pretty much the same - though my regular doctor said that they were all slightly different and worked a little differently for some people.

I know that you are a scientist which I hugely respect and so I really appreciate your very valuable input on all these meds and the advice that you have given me. 

I will give you a some of my thoughts.

I have always been fascinated by the human body, and although I do not have a college degree (1960's in England, boarding school - secretarial course, learn to cook, marry Mr. Right and all will be well, was the thought of the day!) Actually I did all of those things - and it has been a very different and interesting life!!!)

 

I have done A and P a couple of different times. The first time because I became an Iyengar Yoga Instructor - in the 70's. (I am very inflexible now and gave up yoga because it was not helping my aches and pains)!  Then I took up massage therapy which of course necessitate A and P (why would I think that massage therapy would be any less stressful on the body than the yoga. - I later found out it was either sugar or carbs that were giving me the aches and pains).  Anyway the outcome of both of those, combined with 21 months spent in the Falkland Islands off the coast of Argentina, was an interest in eating healthily and also - alternative medicine.

Graham and I met in May 1974 (I knew that first night that I met him that he was the one for me) and 7 dates and 5 weekends together later we married and moved out to the Falklands where he was a civil eng. helping to build the new British airport.

It was quite primitive and we lived on a diet of mutton, root veg, canned veggies (cept those that came from our neighbours - till we dug our own veggie patch), gin and tonic and white bread - baked with mutton fat!!!! I came back to England fat, pregnant and craving decent food.  Since then we have eaten a very much more wholesome diet (more wine and the occasional gin and tonic, more whole foods and lots of fruit and veggies).

Anyway the upshot of this very long and boring story if you haven't drifted off yet - is that although I don't down a pile of vitamin pills and potions - I do think some things work quite well.

I have to say that I have found (and I say touch wood) that my reflux has been SO much better since  a. I stopped taking the Acid reducers and b. since I started taking Dr. Vogel's Centaurium.  I haven't been taking it all the time - so I know that it is not the cause of my D - but it has helped me.  If you want to Google it - try the Bioforce website.  The UK site has more information on it I think than the US site -  Bioforce.co.uk.and Dr. Vogel's Centaurium.  He is dead now but he is a very well respected Swiss herbalist.  Bioforceusa.com is the website here.  I can't check on the actual browser pastes or I will lose this post.  The Bioforce USA site has Dr. Vogels Centaurium with Milk Thistle - it is a general digestive herbal remedy.  The UK site has Dr. V's Centaurium on its own.  It tells you to take 10-15 drops 3x a day.  I only tell you this because it might help you.  If you decided to try Centaurium I would gladly send you a bottle as my daughter sends it to me from the UK and it costs about $16.00 for a little tincture bottle which lasts about a month and I have a couple of bottles here and can easily get more and if you are desparate - it is something else to try.

Anyway enough from me.  It was just nice to get back onto the site.

So far today I have had 6 Welchol, 2400 mg of calcium, 2 eggs, a banana - any other suggestions!!!  (Also a little wine - hence the rather long winded and boring diatribe!).

(I will let you know if I need some ex-lax)!

Take care.

Carolyn

 

Dear Carolyn,

HI Guys!

Man am I not feeling well at all!!!
I enjoyed reading all your posts though!

MY reflux is amazing I should be studied at Harvard for all the reflux that comes up!!!!
I literally cant eat anything I feel sick to my stomach all the time!!! My b-day was the worst! Im getting anxiety/depression over this as well!

My throat is KILLING ME! from all this reflux Im starving but I cant eat! I go back to my Gastro TOMORROW!!!! I cannot wait I think that Aciphex is a joke for me anyway.... I was on Prevacid for 7 years and it worked ALLOT better than this stuff He's going to have to give me something else or Im going back to Prevacid..... Im sorry you guys are still hurting as well! Im not giving up though I know God will heal me He's the only one.......

The worst part for me anyway is knowing I HAVE TO GO TO WORK and suppport my daughters I keep thinking soon I wont be able to do that!

Im eating next to nothing at all I have no clue how Im walking let alone working!

Well Ill talk to you guys soon

MY internet was giving me issues thats why i havent been on but I will keep you posted with what my Doc says tomm...

take care

:)

Hi Kim,

Isn't there any research on just opening up the GB, cleaning the interior, and then sewing/closing it back up?  Is removal always necessary?

Dear Lynne - You poor thing - there are three of us who really feel your pain.  You are not alone, it is not in your head, we  will get to the bottom of these awful problems that we seem to be having.  You are right the medics just shrug their shoulders and indicate "Live with it"  They should just try!  We all seem to have some similar symptoms and have all seemed to be rather unsuccessfully treated with Nexium Prilosec or Protonix or Aciphex or some such.  It is debilitating and each day is a different challenge.  I have found this groups to be a Godsend, I don't feel as frightened as I did and I know that i am not alone - and at least I can vent here - though I have great support at home.

Take care and please stay in touch with us. I am just sorry that you have this reason to join us too! Talk later.

Carolyn

Hi Dawn -

I realized that I had not answered your earlier post.  Having had a week of feeling awful last week except Saturday I have had a couple of better days so far - though as we know that can change in a flash). You asked me about losing weight.  The D is still the biggest problem, though the pain is there on and off.  The reflux does not seem to have been bad though tonight I notice it.  I have really been making an effort to try and eat.  It scared me that I was still losing and 108 pounds and 5'4" is too thin for me.  So I have been trying to eat eggs and toast for breakfast and a good meal in the evening and whatever at lunchtime.  Trying not to eat too much fat, but also not too many carbs either.  Graham picked up some Ezekiel bread - sprouted wheat bread and also some low carb bread too.  I have been drinking Guiness at lunchtime at the weekend and trying wine at night.  I do have an appetite at the moment and felt quite energized when I walked for about a mile this am. As you know this can all change.  I definitely feel better without the reflux meds or Pepcid and have not had any Welchol today.  If the calcium carb worked much the same as the Welchol - I would prefer it to control the D I would rather not have it at all.  I still think that these Acid Reflux meds make things worse by switching off the acid altogether.  For some people that seems to work - but not for everyone.  Noe of us really seems to have said - Wow Nexium is awesome or I love my Prevacid!!

My goal is to weight a pound more next week than I do this week.  One pound at a time.  I think that eating less definitely makes things worse - but I guess it depends one which particular symptom one is having at the time.  Are you scheduled to see anyone anytime soon.  I postponed my appt with the nutritional Doctor for the time being.  I still think that I would like to have another ultrasound and see if there is not some stone stuck somewhere.  If things don't improve soon then that will be my plan, then go back to my old Coral Springs nice GI md. 

I find salads don't sit well with me.  I have made another big batch of veggie soup again as it seemed to go down well last time and had leeks, carrots, cauli.sweet potato, garlic, marjoram, celery.  I am sorry if I post the same information all the time.  I write so often that I forget what I wrote before. 

Take care, and Hi Lynne and Dawn hope you two feel better tomorrow too.

Carolyn

HI Guys!

WEll guess what I had done yesterday another upper GI and the Mamotery test..

When I saw my Dr he said he wanted to do another one since I lost 7 lbs in a few weeks from not eating..... and he also said he suggests I have the Nissen again since the wrap is loose and not working!

and Im on Protonix now instead of the Aciphex I dont have the results for the Mamotery test but he said my esophageous looks good he did take some biopsy of my stomach and esoph. But he said its the acid that is making my throat hurt so bad since it just keeps coming up over and over again!

I did eat some yesterday and it was bothering me a little but now as bad! Im hoping that will continue.... I will let you know the results of the Mamotery he said we need that test just to get the surgery which I know since Ive gone this route already..... Im praying for you all!

Talk to you guys later

Hi Kim

 

Well I am sorry to hear that you are still having the awful reflux problems.  So you are on Protonix too.  Dawn is as well.  I wonder how it is going for her?  I felt very good this week and have been eating well - though the D is still an issue.  We went out to Red Lobster last night and this morning early was fine but now I have bad D and don't feel so good.  The reflux has not been such a bad problem for me as the pain and the D - the latter is a symptom that I do not like at all.

I hate the thought of you having to go under the knife again - I guess that is what they do to redo it.  I have to say that my reflux has been much less since a. I stopped the acid reducers (tried all three) and pepcid.  I finally went online and bought some really great digestive enzymes from Micronutria.  I will tell you if they are still doing well for me when I have got over this current bout of D.

I hope that you start feeling better soon.  You are too young to have all these problems.  Hello Dawn and Lynne - hope you are doing a bit better.

Carolyn

Carolyn

Hi Carolyn,

I wrote to you,long time ago. How are you doing and how are the enzimes working for you?. I am still fighting the acid reflux and the lost of weight.  My blood count went down and I will have a bone marrow done on the eight.  Are you able to eat more variety of foods and how is your energy level?

Tell me if your found any new ways that are able to help.

Hoping to hear from you

Manuella

How is Dawn doing?

Hi Carolyn and Kim,

Hey Guys!

Well Im meeting the surgeon on 8/9/07 Im very nervous since Ive been through this and the last outcome wasnt the greatest but I do have a good feeling about this for some reason..... I need some kind of relief my main issue is the reflux I cannot eat because its so bothersome its constantly just coming up an its nothing but bile and acid my Dr even said there is good treatment for the bile the Carafate does help but he said my muscle is NO good so NO med will help me for that LES muscle weakness I just want to get it over with now

Im nervous and anxious to have this done

Pray for me Im praying for you guys I hope your feeling better

 

Kim

Hi Lynne,

Hi Dawn Kim and Lynne -

I am so glad that you are back Kim - I worried had not heard from you.  This website does not seem to work too well.  I found if you delete all the notifications in your email then it is hard to get back on. I have logged in using my ID and the only trace of this blog is my first question.  I eventually typed in Dawn D and got on that way.  Anyway.......It is nice having you back.

I did well mon-thurs and Friday was not so good.  Sat was fine till the evening and yesterday evening and this morning were not good.  Not sure if it is what I eat or not.  I am now trying fiber first thing in the morning and some calcium but it is too early to say how much that will help the D.  The pain comes and goes - like you Dawn it is on the right side.  Do you have it all the time and is it really bad pain? 

I think that I will try and see my old GI this week and see if another opinion will help.

This is getting so old.  Why us?  Why not everyone?  They have definitely missed something - it has to be.  Why does someone not specialise in post GB syndrome.  Probably because none of them have experienced it.

How are you doing Kim?  I wonder whether Lynne has been able to find her way back here?

Take care everyone and I will keep in touch.

Carolyn

Hi Dawn, My name is Cindy, I have been reading yours and carolyns problems, and I too am a sufferer.  I had my gall bladder out on January 26, of this year.  No problems I thought and 4 days later started throwing up and did not stop for a very long time.  My doctor did every test known to man and the only thing they really confer is that I have bad acid reflux,  I have been questioning bile reflux but they say it is unlikely but not impossible.and during my enodoscopy's they do not find bile.   And when i was throwing up no yellow or green stuff came up.  (sorry that is gross)...I was 138 pds. then went to 110 and was hospitalized because i was malnurished but darn if anyone could tell me what was going on.  The gi docs say they have never heard of acid reflux being so bad after gall bladder surgery.  2 gi docs have said that ..whatever i know what i feel. I was on  ppi's for 15 years with no problem, now the ppi's make it worse.  They sent me to a surgeon to talk about the nissen fudo and that scared me pretty bad especially since i will loose another 20 pds from not being able to eat solid food for a month.  How frustsrating can all this get..Pretty bad if you askl me.  I have been eating better I am up to 117 now.  But i do not know what meds or supplements to take, I am constipated not dirreahea, so i need a fiber supplement which citrucel i took for 5 years now kills me to take, i have been on heathers tummy supplement for 3 months and i am not sure if that is what causes me to have some hives and itching or not and I was on Align for  a month and the gas and slight upset stomach just did not make me feel well.  I sometimes break down and cry  becasuse i think one day i feel better and the next i am miserable.  More miserable than good days.  I am finally back at work but i notice stress does make everything worse.   How are you doing now??  There are no more comments from you or carolyn.  I am praying that when i hit the year mark maybe i will suddenly awaken and feel normal again...I can dream can't I.  Good Luck , Cindy

Hi Dawn Kim and Lynne.

Nice to have you all back! 

Just another word on reflux.  I still maintain that my reflux has been so much better since

1.  I stopped the pp's,

2.  I have been on the Dr. Vogel's digestive drops.

I certainly have a little reflux from time to time, and occasional mild nausea but not nearly as bad.  I really believe that the ppi's remove so much of the stomach acid that it causes more problems in the long run.  I also have been taking sublingual B12 as the Dr. said that my B12 was on the low side.  I know that reading the blood type diet - which some might pooh-pooh - type A's lack intrinsic factor in their stomach which helps B12 become absorbed.  Type A's also have low stomach acid.  Some think that the whole blood type diet is rubbish.  I think that their might be something in it - I am certainly true to the type a blood type in what suits me to eat. 

I also ended up buying the Reflux report online - which I thought was a risk - 37.00 to download but I have found it to be helpful and also they send updates regularly and there is interesting information in it.

I also bought Refluxamine from Micronutria

which is also meant to be good for reflux.  I have only been on that for a week but I am trying to be diligent with taking these things. 

I also take another Digestive supplement which has Pancreatin NF, Alpha Amylase, Pepain, Papain, Ox Bile Extract and Betaine Hydrochloride.  All these things seem to help with the reflux. 

The D is altogether different and now I am taking loads of psyllium and also calcium to try and ease the D and stop the numerous trips to the bathroom!

My problem is the D and the pain - like you Dawn right hand side - I really would like to have another ultrasound.  Would a stone in the bile duct cause the D?  Who knows?  All these questions.... 

If you want to find out more about Dr Vogel's drops the website is bioforceusa.com , though the UK website has more info on it bioforce.co.uk I think.  "In his book The Nature Doctor he writes: Centaury drops are marvellous for heartburn and have a healing effect at the same time."  His digestive aid has centaury in and other herbs too.  His plain Centaury I get sent from the UK. He was a Swiss herbalist and died a while back (in his 80's) 

Anyway enough from me - if this is any help to any of you I thought that I would tell you how it has helped me.  I am definitely eating better and drinking wine too - though the D prevents me gaining any more weight which I need - at least trying not to lose any more.  If anyone wants me to send some Centaury only, I probably can as I have two bottles and my sister in law can probably get me some more this week.  I just think it is worth a try.

Sorry to harp on!! You are all three in my thoughts and prayers and Kim I do wish that you did not have to have the Nissen done again, but hope that you will benefit from it if you do.  Take care all of you.

Carolyn

 

Dear Dawn, Kim and Lynne -

I wonder where you all are.  I have not seen a post in a while and hope that you are all OK.  Please keep in touch just so I know that you are doing well.

Carolyn

Hey there Ive been thinking about you guys!

IM still sick as a dog its a wonder how I go to work everyday I know its God because I feel dead inside!

I cannot eat hardly at all! My chest is hurting again and its heard to breathe now Im unable to sleep because Im stressing so much.... I MAY go see a specialist in Nashville thats a supposed expert my Dr recommended I get a 2nd opinion from him but its easier said than done thats about 3 1/2 hours away Im by myself I have freinds and my sister here but thats a HIKE! and hes not on my insurance IM already up to my ears in medical bills so IM at a loss if i should go to him my own Dr said he may just confirm and say I need the Nissen again... so im just confused scared and sick of being sick!

Im having side effects from the Protonix well #1 the obvious its not helping but thats because Im pretty sure its bile but Im geeting dizzy and headaches Im thinking of stopping it and going back to prevacid I did fine with that .....

Well I hope you all are doing better than me!!!!!

Lynne situations reminds me of me are you having reflux Lynne????

Carolyn Im not getting any reminders that you have made a reply to the site??? weird anyway Dawn I hope your ok

Talk you all soon I will keep you posted my Dr is gonna call me back to see if they can set up an appt with this GENIUS <-- yeah right in Nashville if its even plausible!

but I still have to see the surgeon on the 9th

Prayerfully

Kim

Dear Kim,

Hi Carolyn,

Hey Dawn!

Yeah Prevacid has never done me wrong he just wanted to switch it to see if that would help but it hasnt so I took it upon myself to switch back because Protonix made me feel funky!

I am still going through w. the surgery unless something happens??? A few people I have spoken to tell me NOT to go see this Dr in Nashville that its a waste of my time and money so Im just waiting to see what my GI says if they cannot obtain an auth for me to see him under my insurance then Im NOT going if they can and its a decent time frame then I will go over there...

But Im meeting the surgeon next week a good friend of mine is an OR nurse and she knows the surgeon very well and said he performs these all the time and that was very comforting to hear!

I think if its meant to be I will see the so-called expert but will see

Im still on the Carfate as well I have the liquid kind and take it 4x a day

thats very nice that your Dr has called you to see how you were!!!!!

Well im gonna run

 

Hi Kim and Dawn -

I had a "dah" in the middle of the night - when I went back to the Dr. having tried Nexium and Protonix she put me on Prevacid and then said take a spoonful of Milk of Magnesia with it.  Unlike me I did not ask why - but followed the instructions.  Not sure whether it was because the Prevacid is rough on the digestion or that that the MoM is soothing.  Anyway it did not make much difference

My pain is bad again.  Also cramping in the lower abdomen too.  The psyllium definitely helps the D - I only took two doses the dy before and really noticed the difference.  I still find that the pain is worse lying down and often feel nausea when I wake up.  Disappointed that I have gone downhill again - booked an appt with my old GI for 22nd August - see what he will say.  Meantime we have 5 friends coming to eat tonight but I think Graham will put something great on the Barbie and I can fill in with nice salad, roasted veggies and some simple dessert.  Hope that you two get to the bottom of all this.

Kim I do hope that the Nissen will help you.  It is hard to know whether another opinion will help especially when you have to pay so much.  I have written off the other GI as he really was useless.  I think that some of my symptoms are IBS - though I did not have it before.  I have some Buscopan (UK name and otc) it is used to relieve spasms.

Are you eating any more Kim? I think that I may have overdone the eating.  But aren't we meant to eat?  My surgeon said "go and eat normally - anything that you fancy.  Ha! anyway take care you two and Lynne if you are still on the post.  Have a nice weekend.

Carolyn 

So glad that you are feeling better.  Still more testing - glad that the meds are helping.  Maybe I will find something really great soon.

Interesting that so many pregnant moms or post natal have gb problems

Take care.

Carolyn

hey guys!

Its been a long time!

How are you Carolyn & Dawn????

I have had a few tests since I was here last!

The surgeon wanted to make sure I didnt have that gasparesis so I had the emptying study it went well and I empty perfect thank God I only had to eat one scrambled egg and I was able to get it down and 1 glass of water! Then they had me do a CT scan of my chest and stomach I guess to see what the wrap is doing then my surgeon is going to have a meeting with my Gastro and discuss the next plan wether its a repeat Nissen or what the surgeon wanted to really make sure nothing else was going on, but it seems there is nothing else except this horrible unending reflux.... They did obtain an auth for me to see that expert in Nashville so I may be going over there but Im not sure waiting on word from my Doc's

How are the 2 of you any better????? Please update me!

Hi Kim

 So nice to hear from you and great that you do not have gastroparesis.  I do hope that you have some success in Nashville.

I am not quite sure what the Nissen procedure is or the wrap but maybe it is to reduce some part.  I have an update - I went to my original GI guy in Tamarac and he diagnosed almost certainly "sphincter of Oddi dysfunction" which is not great as there is not that much you can do for it and it is the sphincter between the pancreas, and bile ducts where they meet the small intestine.  The bottom line is I had high lipase and amylase levels and epigastric pain between the shoulders and it seems almost certain that is what it is.  I have to avoid getting pancreatitis though believe I have had it mildly (chronic) on and off.  Avoiding sugar and keeping fats low is meant to help and no alcohol.

I feel happier having a diagnosis but not happy about it.  I am juicing and really trying to keep healthy.

I do hope that you get to the bottom of our problems.  Have you ever tried taking a teaspoon of raw hone (like the nice runny honey that you get in Publix but should say raw on).  That is meant to help reflux for some people.

Anyway take care and do keep in touch.  So nice hearing from you. 

Carolyn

Hey there

No I have never had that Honey (NO Publix here LOL) I miss Publix so much but there isnt one here but there is an Organic Market here how are you supposed to take it?

I have never heard of that condition your GI thinks you have? I cant stand illnesses that theres nothing you can do about!

I cld the surgeon's office today to check at what the next step is going to be I havent heard anything yet but there office is a bit nutty so I dont intend to hear back right away..... I wonder how Dawn is?

Hi Kym -

 

Sphincter of Oddi dysfunction seems to happen to some people and they they think that that is maybe why patients have their GB's out as the pain is in the same place.

So I am trying to find out what I can do to alleviate the situation as there is not a whole lot that can be done. 

If you go to your reg supermarket and look at the nice runny honey - the wildflower us usually raw.  You just take a teaspoonful when you have reflux.  I have heard a couple of people say that.  It is cheap and delicious and can cause no harm!!!!  I love honey.

Take care.  I hope that Dawn is doing well.  Her dog has been very sick I believe.

I hope that you are doing better.

Please take care and keep in touch.

Carolyn

Hi Michelle - Thank you for your kind note .  so sorry to hear that you are having problems too.  Did they actually say what is was?  They vaguely diagnosed me with sphincter of oddi dysfunction or Upper GI irritable bowel.  Still have nausea, D and pain.  What meds did they give you and did they help? I just take Xanax mainly and some natural things.

I hope you feel better soon.

Carolyn

They have mentioned Sphincter of Oddi, but after I had an MRI of the pancreas, they don't know what I have.  I do have an enlarged spleen,though.  They say I may have something similar to IBD.  I am going to my 7th specialist tomorrow; she looks at G.I. and environmental & food allergies.  I have only gotten D since July of this year.  Before that, I had terrible pain in my ribcage on the right, but sometimes on the left side, and back.  They thought for sure that taking out my appendix and gallbladder would take care of my pain.

 

This has been hard on me & my family.  They never know when I will get sick, or why.  I am totally paranoid about going to parties with homemade food.

I have been taking some anti-spasmotic drugs, as well as some digestive enzyme called Creon 20.  I also take Prilosec OTC.  I have had CT Scans, MRI's, bloodwork, stool & urine samples.  My doctor called me a "puzzle".  I eat a lot of bland food.

You sound a lot like me.  I have had tests in this order, upper gi ct., endoscopy, mri, sent to liver surgeon - suspected bile duct stenosis - negative, ercp - okay, (lot of pain after that one), hida scan 25% ejection fraction, finally ultrasound and that's when they said GB mass.  GB removed mass negative, GB messy, pain continued - epigastric and rhs upper quadrant, hard to eat, weight loss, nexium protonix prolosec. Stopped taking everything as made it worse cept Xanax to help me sleep.  Now I feel nauseated everytime I eat and then have pain after between five mins and an hour.  New GI doc said could be Sphincter of Oddi, could be Upper GI IBS.  Still take immodium for the D.  Situation is very like yours - I take dig enzymes too but nothing seems to help much and I now weigh under 110 and did weigh 124. Like you I eat bland food, am juicing, eat low fat, low sugar (scared to get pancreatitis if I have not got it already).  Anyway that is my stuff so boring so depressing.  Is Creon 20 otc or prescription?  I have also had stool analysis, Crohns bloodwork as well as, celiac sprue, B12 (which was low) and last time lipase and amylase were elevated (hence the concern over the pancreatitis).

You mentioned IBD - is that the same as IBS or was it a spelling mistake or is it something else.  I am so sorry that you are having the same problems - I have found it really helpful having the support of this blog. I have booked appt with a good nutritional MD and considering acupuncture which can help.  The GI suggested Elavil and another anti-depressant which can help with pain (instead of the xanax).

Like you - I am a puzzle.

I hope that we all get to the bottom of this.  I have found on other blogs that we are all not alone and found them to be helpful.

Take care,

Carolyn

Hi CarolynEJ!

 

I just switched GI dr.'s and this one said I have IBS & postcholecystectomy syndrome(an infection after the gallbladder is removed).  That's why I have had so much pain even after 2 surgeries.  The Creon is prescribed, but she said I don't need it because it's for people w/pancreatitis.  I DON'T HAVE THAT!  She wants me to take a sleep study to see if I have sleep apnea!?

 

Last night, I went to dinner w/12 family members & this was only 2 hours after having D and a lot of pain.  I had about 10 vials of blood taken for various tests, and felt sick from that too.  I ate plain chicken, bread, baked potato & water. 

Hi Micki -

 

How very interesting - I was told Sphincter of Oddi dysfunction or (because my liver enzymes weren't up) Upper IBS.

I have not heard of postcholecystectomy syndrome.  That makes much more sense.  Are they taking the blood to see if there is an infection.  I have found googling that Erythromycin is used for this kind of problem - pain etc.  Please let me know how you are doing?  I am up and down day by day, way too thin, trying to eat really healthily, but even water can make me feel nauseated sometime and so can food.  Other times  I can eat quite well.

I am now trying the Activia challenge - Dannon Yoghurt with Bifidus.  They say if your intestinal motility does not improve in 2 weeks then your money back (Not interested in the money back want to see if it helps the D)! A dietician friend of mine recommended it to me.  I will keep you posted.  I have had more gerd lately, plus this strange feeling of fullness in the head and feeling breathless and think that might be either gerd related or sinus!  What a mess.

Sleep Apnea?  That is really weird.  I know that I only sleep well when I take xanax and I started that when all this stuff started. Now I can't get off it but as I am anxious for all the above reasons I guess I need it. 

 

I have found it really hard to understand why 10-20% of us have these problems and the rest sail through.  Maybe the infection was there before.  I certainly had the same symptoms before I started but now they are magnified - It makes some sense and good luck with the results.

Hi there!  Wanted to let you know that I got a new GI/allergist who diagnosed me with Irritable Bowel  Syndrome!  I also had post-cholecystectomy syndrome(I told her that I saw this online & diagnosed myself).  She said that I was exactly right. 

 

I have lost 8-10 pounds and am avoiding foods like egg yolks, red meat, and fried foods.  It's really BORING!!  But, my stomach is a lot better because of it.  Unfortunately, I get diarrhea more than most people. 

 

I hope you are doing better.  So there it is-I went to 7 different doctors, countless possible diagnoses & all it is was IBS!

 

Talk to ya-

Michelle aka Micki

I will told i have a polyp on my bile duct is that a concern.

After I had my gallbladder taken out and despite the fact that I had problems - the Dr said to me that it was probably a good thing that I had had it taken out because it could have turned to cancer one day.  I say could and maybe it might not have done - but I think he said it in case I was having second thoughts about having it out.  The only person who can really help you is your md. or a gastroenterologist - they will give you a good answer.

Good luck

Carolyn

Dear Terry

Thank you for your note.  I was so sorry that you are having all these problems and you sound as though you are at your wits end.

You are on this thread or blog - just by emailing.  This has been going for a while and we have had steady people and others that just drop in.

Well I have been hither and yon trying to find some solution.  It seems that there is not much that they can do and it seems that they really don't know what it is.  I have been my doc. my new GI (not great) and my old GI and about to go and see my old Doc (we moved north about 80 miles) and then a nutritionalist and hope he will suggest acupuncture.

My old Doc who I go to see on Monday is an excellent diagnostician.  I will share anything that he has to say - though not hopeful.

The Old GI guy did not give me much hope and was not sure if it was Sphincter of Oddi

but might be Upper IBS.

After reading your note last night I felt quite down as I realized that things have not got better for me.  Good days and bad days.  I had had such a bad day last night that I had a glass of white wine and then came home and had 2 pieces of Ezekiel bread (healthy but too full of fibre) and a scrambled egg, butter and some blackberry jelly.  Wasn't sure if I had taken my Xanax to sleep.  Result was absolutely full blown Gerd attack and strangling throat and not being able to breathe well.  I had thought I had a low degree sinus infection.  Now I know what you mean - it is the acid.

Anyhow I will tell you what I have been doing.

I too have lost too much weight - now about 109 was 124.

I am trying to do natural and trying to eat quite and lot and often.

I am not surprised that you are losing so much weight because of not taking in any protein.  Also do you eat any fruit and veggies?  If you are not doing any of those then you will feel very tired and miserable due to lack of nutrition.  My md said I must eat 55 grams of protein.

I find that I tolerate soy protein powder shakes - in soy milk with frozen cherries or blueberries thrown in in the blender.

I also have got my juicer out and am juicing about 2 carrots, large stick of celery small slice of beets and some spinach (not too much).  It is delicious and feels really good.  I also take digestive enzymes, a probiotic - someone said that Activia by Dannon is very good - but it has too much sugar in it for me.  Very important to maintain the health of the gut.  I take 2 immodium in the am and also some fiber capsules for bulk. 

I take some drops that I buy from a the internet and have not taken them recently and wonder whether that is why I have had more gnawing and nausea in the stomach.

I did all the acid pills, Nexium, prilosec, protonix and felt ghastly.  Went on to PepsidAC  max strength otc one twice a day.  I also have read that taking one to  teaspoonsful of raw honey (from the supermarket) can help and also the honey and 2 tspns of Braggs apple cider vinegar (health food stores).

This is a struggle but we will find something. I will keep you posted when I see my old Doc.  Hate all these symptoms.

I hope that you have a good weekend.

I think you MUST eat more a little at a time and maybe being of the acid reducers might help. 

Thank the Good Lord for His Presence in our lives especially during those attacks.

Take care - you are not alone - but try and build yourself up a little at a time.

I take the Xanax for sleep - the GI doc thought that an antidepressant like Elavil or Trasadone at night might help for the pain.  Those are my thoughts.

Carolyn

That would be wonderful.  I exchanged emails with someone else.

If you would be able to email me privately I would really appreciate it.

Thank you so much.  CarolynEJ  gcernestjones@yahoo.com

I have not posted for a while.  Went to my old md who put me on Cymbalta for pain and zegerid for the reflux (my goodness it costs as arm and  leg and is only an acid reflux pill and Sodium bicarb.

Anyway I found that the Cymbalta gave me D but I have decreased the dose from 60mg to 30mg and eat lots of oatmeal and fiber to try and stop the D. I agree about the bile acid and only hope that it will settle down.  Have a very large girlfried 250# who sailed through the surgery and never looked back.  I also take Prevacid as I found it much better than Nexium, prilosec and protonix - they all made me feel much worse.  Hopefully we well get through all this.  Carolynej

 

Hello Carolyn,

I have just run across this sight in search of information on bile reflux. I have not had my gall bladder out but a year ago had gastritis. I thought it was the h-pyloric bacteria because I had had that twice previously. I had an endoscopy and it showed bile in the stomach with erosive gastritis(this was about a year ago). Since then I have had every GI test done, blood tests, and other tests, that shows nothing, but I had continued to have pain in the upper right quadrant at times (where the gall bladder is located) diarrhea, a stomach that constantly rumbles, nausea and a few times feeling like I was going to faint after I had eaten. I live in Uruguay and the Dr. has never used the word bile reflux, but has asked me several times if I've had my gall bladder out. I have also lost about 10 pounds or so. I'm currently taking 40 mgs of Nexium (for acid reflux diagnosed about 3 yrs. ago) and Cholesteramine, a bile acid blocking drug that is also used for lowering cholesterol. This has really helped but now he wants me to try taking it every other day. I have tried that before and was back to diarrhea and nausea. Does this sound like what you have experienced? I was really glad to read that I'm not the only one and that I'm not just inventing symptoms or experiencing what other people would say is a "nervous stomach"! Thank you! Patti

Thanks Shelley -

 

I still have the D and get the bile gastritis I think as I have that gnawing and nauseous feeling too -but I had it before.  I am still not sure that it is not more stones in the liver.

 

Carolyn

I am two weeks post gb surgery. I am so glad this blog was here. My  MD made me feel like I was unnecessarily complaining. I too, have had the pain in the center of my chest that eventually covers my whole trunk area. Food has become my enemy. The only thing I have been able to tolerate is soups. I am eating a lot of home made soups. Chicken noodle & Chix potatoe. They have been a godsend. I am still experimenting with acid redux and other remedies. The pain was so bad last night, I almost went to the ER.

 

I hate the pain killers, but I can't see how I am going to get on the other side of this without them.  I was also told that I would be back to normal. That has proven to be a lie. I am not a malingerer. I live a full life, this is not something I want to carry around. I will be willing to share anything that works.

 

Thorne

Hi Thorne,

Thank you for your support as well as a response. Yes the biggest myth I found was the fact Dr.'s say you will recover totally, sure, they are not in my shoes. I'm in the middle of one of my attacks and am in sever pain today, though I'm immune I think. LOL

Yes I would love to find a new and better remedy for this. I don't care what I eat, I still suffer. (bland tasteless food too) If I can help you in way, please ask, I will do my best. I'm so greatful for this blog as well, I'm not glad they are others suffering, but glad to know I am not alone with no outlet for frustration of this problem. I would never wish anyone to suffer like this... Though apparently it is a common occurence, sadly enough.

I have tried a number of drugs to help with acid and painful attacks. all of which only help for the first day or two. (then dont do anything... figures) I did find out that a warm bath is beneficial for pain, though temporary as well. Good luck, and if let me know if I can help you as well...

Take care,

Lorie

Sorry not to reply before.  I have been away for 6 weeks.

I am so sorry to hear that you are having such a hard time.  Why can't they get rid of the trapped gas?  That seems to be so painful.  Have you thought about asking for another opinion.  Do you take pro or prebiotics.  I have started which I think may help with the Diarrhea - not sure though.  Certain things certainly upset me but I need to keep a food diary.

I don't know what else to suggest - avoiding too many fatty foods - I binged on brie last night and have been in the bathroom on and off all morning!.  I think some of mine is IBS too.  Have you tried enteric coated peppermint capsules - I think they are Enzymatic Therapy from health food store.  They are good for spasms and are enteric coated so that they do not dissolve in the stomach but further down.

Hope you find something to help.

Carolyn

Thank you for getting back to me.

All the ideas you suggested would be helpful, except, it doesn't matter anymore what I try, it still is getting worse and worse. I have it down to a sience now...lol.

Today, i am in the middle of one of my attacks. but this morning I ended up in pain, which has been rare for me lately. (I have noticed, the more stress you can aviod does help slow the attacks.) I have had 2nd third and forth opinions since my surgeory, and all had said the same thing, nothing can be done.

I'm sorry, really hurting tonight, pain right up to my shoulders. (so I maybe rambling)

no medication has been working either anymore. Foods? thats funny, I eat bland foods, still have attacks, eat rich foods same, so I eat what I want, I just try not to eat a large amount of rich foods.

Thank again for taking time to answer...

I hope you feel better as well, and will be here more and more often, I might stumble across a relief one day:)

Take care,

Lorie

please let me know if you found of some kind help.

Hi Aprilrain,

I have not found anything as of yet, but I did figure out how to control the attacks...

Have you ever heard of "Flush the Fat internal flush"? I found that at the onset of an attack, I take them (one pill a night, for a week) helps to control the severeness of the attacks.

Other than that, I've pretty much learned to live with them. Also taking them like that, i have found I'm not in pain anymore.

Also to prevent attacks, I have found, that eating smaller meals, many times a day helps as well.

Take your normal meals, and break them down into smaller ones, such as breakfast, break it down to three small meals in the morning, about an hour or two apart. same with with lunch and supper.

Oh and don't skip a meal, it will make the attacks more and more frequent.

I hope this helps....

 

Hi Lorie, Thank you for your reply. I got my gallbladder removed july 2008 almost a year ago. I am so miserable i've went from 127 to 117 within the last couple months. I've never had acid relfux except a little heartburn during my 2 pregnancies as the baby got bigger. This does not feel like that I'm getting it with anything & everything i eat or drink even water. It makes me then get like a dry cough alot after i drink. I've been having a terrible taste in my mouth like sour or metal like maybe. My throat has been very irritated i didn't even know for months after the gall bladder surgery i was getting this acid possibly bile reflux until it was hurting my throat. I had a gastro doctor put a scope down my throat to look for ulcers but he said there were no ulcers in my stomach or first intestines to just take the prislosec. Which is not helping much at all now. I also read that antacids can cause more problems where you can not absorb nutrients that your body needs & that long term use can lead to stomach cancer. I read a i think a good article about life without your gall bladder here it is http://www.shanti.com.au/body/no_gallbladder.htm

Please let me know what you think. Are you still having horrible reflux? I don't have D except when i take a antacid & PPI. Do you think i'm having bile relfux? Are you taking any antacids now? Was your throat getting irritated?

Hi Aprilrain,

I'm sorry you are having so much trouble. I'll pray for you.

To answer your questions, I still get my attacks (as I call them) every month.

Acid reflux, or bile reflux, is a given, as my bile tube (the one that WAS connected to the gall bladder) is SUPPOSED to drip constantly, well not mine... mine backs up and dumps cups of bile so therefore, I end up with severe pain. (not so much anymore)

heartburn or whatever you want to call it... yes I get that. I found taking a foaming chewable antiacid is the best. like (cant spell bare with me) Galvascon. I bought the generic version at Walmart for $10 and got a bottle with over 150 tablets in it. I chew two, and then am ok for a couple weeks.

Raw irratated throat? yes, thats a given with acid problems, mine always feels like ground beef. I hope some of this helps you.

I'll check out that site, thank you for that.

Please feel better.

Lorie

Nice to hear from you both.  Gall bladder surgery to me was incidental I think and will not help the pains.  I think it is important to see whether there is anything that you are allergic to.  I still think that dairy is not good for me.  I have been eating general stuff - avoiding too much dairy - but I do find that even a little milk in tea or coffee will get the old reflux going - so does oatmeal and some breads too.

Do you take digestive enzymes?  Very important.  Have you talked to a health food specialist to see what they suggest?

I was doing quite well and then had a thai green curry and spent lots of time in the bathroom yesterday.

Just trial and error.  I do think that this will pass if you keep a food diary and make sure that you eat healthy food - not too oily, spicy or rich, and take appropriate food supplements - digestive enzymes, soluble fibre, avoiding oranges and acid food, onions, peppers, tomatoes, not too much wheat.  Just enough of everthing.  I still like wine and drink it - but if I overdo it my tummy does not like it.

 

Take care and feel better.

Carolyn

Nice to hear from you both.  Gall bladder surgery to me was incidental I think and will not help the pains.  I think it is important to see whether there is anything that you are allergic to.  I still think that dairy is not good for me.  I have been eating general stuff - avoiding too much dairy - but I do find that even a little milk in tea or coffee will get the old reflux going - so does oatmeal and some breads too.

Do you take digestive enzymes?  Very important.  Have you talked to a health food specialist to see what they suggest?

I was doing quite well and then had a thai green curry and spent lots of time in the bathroom yesterday.

Just trial and error.  I do think that this will pass if you keep a food diary and make sure that you eat healthy food - not too oily, spicy or rich, and take appropriate food supplements - digestive enzymes, soluble fibre, avoiding oranges and acid food, onions, peppers, tomatoes, not too much wheat.  Just enough of everthing.  I still like wine and drink it - but if I overdo it my tummy does not like it.

 

Take care and feel better.

Carolyn

it doesn't seem to matter what i eat some times i will eat the things your not suppossed to with acid reflux(fish and chips)and be fine then a week later eating little and good and i have an attack???if i drink more than two glasses of wine then i am the toilet all morning the next day!!so no more than two glasses forme ;-( under my left rib feels swollen has done sinse before the acid reflux the doc just shrugs it off..does anyone else have this?infact most of my insides feel swollen now and i get a lot of stitch...i am on acid tabs for the acid reflux but i really dont think they do anything..i have attacks sometimes weekly or have gone a few weeks without any....i think i am better then wham the dreaded reflux attack!!!but the doc says to leave the gallstones be as it will make the acid worse...does this acid reflux ever go away for good???is it for life.....sarah45

it doesn't seem to matter what i eat some times i will eat the things your not suppossed to with acid reflux(fish and chips)and be fine then a week later eating little and good and i have an attack???if i drink more than two glasses of wine then i am the toilet all morning the next day!!so no more than two glasses forme ;-( under my left rib feels swollen has done sinse before the acid reflux the doc just shrugs it off..does anyone else have this?infact most of my insides feel swollen now and i get a lot of stitch...i am on acid tabs for the acid reflux but i really dont think they do anything..i have attacks sometimes weekly or have gone a few weeks without any....i think i am better then wham the dreaded reflux attack!!!but the doc says to leave the gallstones be as it will make the acid worse...does this acid reflux ever go away for good???is it for life.....sarah45

Have you tried keeping a food diary on a daily basis and seeing if there is any pattern in itn noting how you feel either after the meal, later or the next day?  Have you tried eliminating for a time any of these things - dairy, wheat (gluten containing grains), alcohol, tomatoes, peppers, eggplant, potatoes, pasta sauce, red wine, white wine, beer.  I don't mean all at once but trying to stay away from some of those.

 

I do think that supplement of some kinds really do help.  I have been taking Dr A Vogel's Molkosan for about 2 months which is a digestive help.  I think that has really been helping.  Also Silicon (sileacea) gel is excellent for all kinds of digestive problems, - must take with a lot of water.  Digestive enzymes should help.  Drinking lots of water, not with meals - dilutes the digestive juices which we need.  A teaspoon of raw honey is meant to be good for relieving acid reflux.  Sleeping with higher pillows.   The above supplements are available at Vitacost.com - very cheap vitamin, herb, teas etc website - excellent company. 

 

Hope you feel better.

 

You can always subscribel to www.avogel.co.uk/newsletter - I have found this company to be really helpful with their herbal products.

 

Carolyn

I hope this will help you on your acid reflux because it worked for me. I was stricken with acid reflux for a year and by that time I wasn't able to eat and drink like I used to. All those meds that was prescribed didnt work at all. and for that span of time i thought to myself I don't want to live like this. So I reseached what was really causing acid reflux.. simple... too much acid in your body, and low on alkaline!! So the simpliest reason what to do is to balance this... and there are food supplements that can do this... These are the food supplements that I took that really helped me:RELIV fibrerestore, FRONTIER vitC, DXN rg gl... I know you would do anything to get better.....

If you were on antibiotics for so long I am sure that your immune system must be down.  I really found that taking Molkosan by Dr Vogel (liquid pre-biotic) and a good probiotic has helped me and put the proper flora back into my system.  It has taken a couple of months taking it daily but my stomach and Diarrhea are much better.  Poor you I can imagine how you feel.

 

Go to Vitacost.com for the Dr Vogel's Molkosan - it is natural.  It is fermented lactic acid and they will also recommend a good probiotic too.  They are very cheap for vitamin and all kind of supplements.  Hope that helps.

 

Carolyn

I've read a lot of this very interesting thread and am feeling more hopeless by the minute. I had my gallbladder removed at the end of October along with ERCP for a stone in the common duct. Have symptoms of burning ever since - either in my chest (the most annoying), sometimes it move along my back, sometimes in abdomen. I've been on Pepcid, Prilosec, Sucralfate, and am currently only on Prevacid and reglan. Nothing works! Stuff seems like might be working at first, but then nothing! Now my gastro dr wants me to have heart tests (despite the fact I had a normal EKG right before I went in hospital!). Dr doesn't seem to know if it's bile or acid floating around in my system though he did say he thinks it's a valve not completely closing and the medicine "heals" it. My next appt. is a week from today - he told me to stay on Prevacid/reglan, but I'm feeling worse every day. Any ideas on healing foods or drinks??

I have just spent about 30 minutes replying to you and have now lost the whole thing - Bah humbug.  I will not repeat it because it was essentially a summary of everything that I had said in all the above notes.  I will tell you one thing however I did go to a chiropractor who specialises in kiniesiology  - muscle testing.  He diagnosed that I have an overgrowth of yeast in my system.  Why don't you go onto this site and then take the test and see if you have any of the symptoms.  I scored pretty high and it is very simple to get rid of really.  If I find my other note to you I will forward.  Don't hesitate to write again. I do feel much better just from getting my digestion (lower ie Diarrhea) somewhat improved.  This is the website and do try the test to see what you come up with  - you can read about it and then scroll down.  It is free but interesting.  May not have anything helpful but frankly I have pood, peed, given blood been mri'd, catscanned, ercp endoscopy, hidascan, GB removal, prevacid and all the rest, cymbalta - anitdepressant that works on nervous system in digestive system, and not that much has helped except the Molkosan - prebiotic and probiotic and maybe the Cymbalta.  Here is the site http://www.candidafree.net/?gclid=CILkuIOx85YCFQS7sgodulcuZw I hope.  Let me know if you can't access it.

Good luck.  I am sure that your heart is very healthy - they just seem to want to scare the s--t out of one so that you end up with anxiety and all those things.  It is not in your head and you will get there - may take a little time but DON"T GIVE UP

Carolyn

I've been taking acidophilus every day since I was in the hospital (because they had me on very strong antibiotics) so I can't imagine it's yeast. However, you never know. I have lost faith in the medical profession totally. I'm willing to try anything to get rid of the constant burning.

thanx again,

Lisa K

Certainly worth looking at the yeast website and also a couple of posts back I explained why the Molkosan was necessary as well as the probiotic - acidophilous.  I am no expert though - just trying to see what helps best!

I thought I signed up on this site, but can't find my password or anything LOL

 

I just bought some raw apple cider vinegar - supposedly a miracle cure - are you familiar with it? I also checked out the websites you mentioned about candida and Molkosan - both look quite interesting. But if I still have gallstones floating around in me would any of this help?  after reading some of the earlier posts on this thread I'm very scared I still have a stone left - maybe in the liver?? After suffering with burning in chest, stomach, back since the surgery on 10/28/08 today the gnawing started in my abdomen (I had a lot of this before the gallbladder removal, but none since). What on earth?? I called the dr. but I have an appt in a few days and he had no immediate advice. If there are leftover stones would an ultra sound see them? My liver enzymes were high for a few weeks after surgery, but came down (as of 2 weeks ago). This is getting more frightening by the minute. I haven't a clue what to eat - very little mostly.

Lisa K

Carolyn,

I have read many of the above posts and am very curious whatever happened to Dawn? Her symptoms are a lot like mine.

 

(I found my password )

 

Lisa K

I wish I knew - we corresponded privately for a few weeks and then she just dropped out of sight.  I was thinking about her a a couple of days ago.  You grow fond of people that you communicate with for a couple of months and have the same sort of problems in common.  I will email her again and see if I can get hold of her.  I thought the same thing when you were writing about the things that were bothering you too.

Carolyn.

I worked for a chiropractor in S Fl and he suggested to lots of his patients to do the gallbladder and liver flush. I have to say that I worked for him for 4 years and really respect and like him. I did it about 5 or 6 times and passed lots of stones.  Gallbladder and liver stones are much softer than kidney stones which are literally like gravel.  GB and liver stones are more oily and powdery.  The apple cider vinegar would I imagine keep the stones fairly soft if you still have them.  If you google liver and gallbladder flush you will find lots more about the subject.  Dr Sandra Cabot's Liver Doctor site is good and so is Dr Hulda Clark's Liver and gallbladder website too.  I cannot tell you how many sites on diet, gallbladder and liver problems, acid reflux, diarrhea etc. I have on my "healthy favorites" - some have been really interesting.  Do try and eat - I am 5'4" and went from 124 pounds to 106 pounds because I could not eat.  I looked awful.  My liver bloodwork was up sometimes and down at others.  I am back at about 120 pounds and eating and drinking normally - including wine - probably too much! I know exactly how you feel - you feel anorexic, are worried stiff that something ghastly is going on, you worry about stones here and there and have this ghastlly reflux going on.  I felt that I must have had something really serious going on but cat scans and all these tests showed nothing.  Just take care and try not to worry too much - worry does not help the tummy problems. 

Will see if I can get hold of Dawn.  Take care

Carolyn

You sound like you are feeling much better!! that is wonderful - from reading several of the earlier posts, you had a lot of pain going on.

I've seen the websites on the liver and gall bladder flushes, but I also found a website that said what is passed are not real stones but just 'soap' that is formed from drinking the olive oil and juice. I don't know if that is true or not, but many people say they feel better after. I talked to one of my drs today and he said he doesn't think I have "leftover" stones, though he didn't give me any explanation for the comeback of the gnawing stomach pain. Well, I will see him Monday and will have a load of questions. Thanks so much for advice!

Lisa K

Carolyn, what would you attribute your recovery to? I can't fathom EVER drinking wine again at this point let alone eating much of anything. From reading this thread I know you've been on many different medications and natural products. Are you taking anything now? Or is there one thing that you believe really helped? Or is just a matter of time and combination of things. I know you recommended the Molkosan - can I find that in a health store? Also several posts up you mentioned raw honey - is this different than regular honey I would buy at the grocery store?

Thanx - and sorry to be such a pest with questions!

Lisa k

I am so sorry not to have replied to you before but I just scrolled down and found your message.

 

Gosh where do I begin.

 

I think that I had acid reflux in the first place.  My first problems nearly three years ago was pain in the back especially at night. I was not aware of having reflux then - though occasionally I would but not on a daily basis.  So that started me on the downward spiral.  I can't remember what I posted originally but had every test known to man endoscopy, colonoscopy, CAT scans MRI's Hida Scans, and finally ultrasound of GB.  I had so much anxiety as they kept saying that there was something else that showed up - tumor, mass, narrowing of this and that!!! I was a complete mess.  I kept having heart attack symptoms (I think that they were a mixture of reflux and anxiety).

Anyway bottom line had GB out still kept getting pain,went on every reflux pill.  Could not eat - ate mostly carbs. No D but it appeared and never went after I had stomach flu (not vomiting but D).  Continued with D, some pain in back, reflux of sorts and the start of this thread.  Tried every thing I could get my hands on vitaminwise etc.

Read blog after blog about Post GB, Reflux and all the other things that you can think of.  Went back to old GI who said maybe sphincter of oddi not working properly.  No-one seemed to have a good answer none of the professionals.  Went back to my old Doctor and he gave me Cymbalta which was OK, then the D seemed to get worse so tried to come off that.  Meantime went from 124 to 112.

I started on the Molkosan in July and I think it has certainly helped with the D.  I am eating normally and drinking wine, and back to 124.  HOWEVER  - and since I wrote to you - I went to the chiropractor as I was feeling awful - headache for about a month - low grade - back of head - neck type pain.  Told him I don't respond to chiropractic well - worked for one and been to many.  Anyway - he does kiniesiology and he tested me against a few products that he had there - yeast, sugar, flour, corn, gluten.  The bottom line was - and I was not surprised - I have an overgrowth of yeast - or Candida - which can cause all sorts of symptoms such as

 

Yeast infections, fatigue, aches and pains, tiredness and all sorts of digestive problems to name a few of the many different things that can be a problem.  The bottom line is that he has put me on a couple of supplements that kill yeast and I am on a yeast free and sugar free diet for a couple of weeks to see how it goes.  It makes huge sense to me because I have always suspected that I have had yeast on and off.  It is one of these things that lives in the intestine and if you have antibiotics that kill off all the friendly bacteria then the yeast takes hold of the intestine and then starts to wreak havoc in the body, including IBS and reflux.  So that is where I am right now.  I am on the stuff and on day 2.  I feel that as they give you a huge amount of antiotics when

you have the GB out then it just wipes out the friendly bacteria.

 

I have also just read that someone in the acid reflux blog says that his acid reflux went away when he stopped eating sugar and carbohydrates.  Interesting.

I do take the Molkosan because it it will also help with putting the friendly bacteria back in the digestive tract.  I googled Dr. Vogel's Molkosan and it came up in quite a few US healthfood stores.  It is about $12-15 a bottle for a months supply.  I also take a very good acidophililus too.  Dr Leo has me on Saccharromyces boulardii which is a friendly bacteria but specifically targets yeast.

 

Look up Candida  http://www.candidafree.net/?gclid=CILkuIOx85YCFQS7sgodulcuZw

it is an interesting site. 

 

Google Saccharomyces boulardii too.

 

You may have to experiment with your diet and see if some foods are worse.  I think with me something sets the reflux off and then I get into a reflux period of having it for a while.  It is horrible - pain in the upper abdomen, pain in the back, feels like lumps inthe throat.  I also have had a constant cough at night which I think is the acid coming up and irritating the throat.  I decided that I just had to make myself eat and when I went to England last year I just tried to eat everything in sight, including wine etc. 

 

I am so sorry that this is so long and much repeated stuff that you have read before.

However it was easier to try and do it all in one go.  I eat honey but did not really find that it helped much.  Raw honey is the nice brown honey that has not been heated.  Raw honey is not good for babies as it is not pasteurised so that is why they purify some of the honey.  It says raw on it and it is usually in the supermarket.

 

Anyway take care and I do know how you feel and I do hope that you feel better soon and I hope that this has helped a bit.

 

I would definitely go onto the candida website and see if you can see if you have many of the symptoms listed there.  The main person who is the expert is Dr Williiam Crooke

 

 

 

Carolyn - thanks for getting back to me. I have been suspicious of candida myself and am taking a probiotic for the past couple weeks (I was afraid after being on strong anti-biotics after gallbladder removal). I have had the oddest reaction to Prevacid. For a week the acid reflux stopped, then came back for a week, then went away for two weeks and now is back with a vengeance along with gnawing abdomenal pain and mild aches where my gallbladder was. I think the problem is I started eating everything in sight when the reflux subsided. I am to take the Prevacid til Jan. 20th, so I really can't call dr. til then (he doesn't know what to tell me - dr. said to contact my surgeon for more ultra sounds if I kept having pain). I go back and forth on whether there are more gallstones. I had ERCP to remove stone in common duct at same time as the gallbladder surgery so they don't really think it's likely. Dr. said he thinks my body is just trying to figure out how to function without a gallbladder and it may take a while. At least I can sleep ok. However for the past few days I've been in misery all day - burning gnawing stomach, burping, etc. Never had D - lucky about that I guess. Right now I'm eating bland hot cereal - I also read that post from the man about cutting out sugar and carbs. I've been drinking aloe vera juice (which I thought was helping) for the past few weeks and some noni juice. I think I have to be VERY careful about what I eat. I will give it a week before I call dr again. thanks for getting back to me - please let me know if you have any more ideas.

 

Well I do hope that you get to the bottom of it. 

When I was in full bloom with the pain and acid etc I went on Nexium - made it worse, then Prevacid, Protonix (is that the name of it) - tried them all and just felt worse and worse. 

 

Having seen every doctor known to man I decided not to worry about the pain in the upper abdomen - I still have it and today have it and have discomfort in the ab area.  I am now on about the 2nd day of the Candida diet and don't expect to feel that great.

 

Incidentally around 18 months ago - having gone back to the Dr. I had one final CAT scan of whole abdomen and they found nothing out of the ordinary - so hence I feel it might just be candida - I also don't get the pain all the time - but when I have been naughtier with the wine and the food.

 

Anyway good luck and keep in touch and I will post you down the road and let you know how I get on with this diet!

 

Carolyn

Carolyn,

I may have to have an endoscopy. Not looking forward to this. I believe you mentioned you had one? Can you tell me anything about it?

Lisa K

It is the first part of an ercp.   The gastro Doc puts the scope down your oesphagus into your stomach and I guess duodenum (as he told me I had inflammation and thickening of the duodenum - scared the you know what out of me).  Turns out that it was nothing to be concerned about - inflammation was probably reflux and the thickening - nothing.  Of course they give you light meds to put you out but the procedure is the same as the ercp but they do not go up the tubes and is safer and less invasive.  The ercp goes further.

Hope that helps.  Hope it helps you to find out anything else too.

Take Care  Carolyn

Carolyn,

Well, I just saw another Gastro Dr recommended by my surgeon and he wants to do another ERCP because he thinks there may be missed gallstones. I am not happy about this, but he agreed to an ultra sound first. I guess I should do it, because the burning sensations in my chest/stomach are not leaving - only taking a small vacation for a few days here and there. I also got samples of nexium, aciphex and something with a z - dr. said to take each for 10 days and decide which - if any - help. This is so depressing - but I suppose it will send my mind at ease somewhat to do the second ERCP - he said if there are no gallstones then they will look at my condition as acid reflux and go from there. I've been taken aloe vera juice, liver support, digestive enzymes, etc. Sometimes I think something is working, but then that awful burning comes back.

Half the time they don't know what is going on either.  I would be concerned about having another ercp as it is invasive - however the gallstone ultrasound sounds as though it might be helpful.  I think that you are right and that it probably is acid reflux - I think mine is.  I have felt somewhat better since I have been doing the yeast free diet - my chiropractor  who is a darling  suggested that I use a Pilates ball (one of those big ones) to lie on and to open up the chest.  He thought that I might benefit from stretching out that area.

 

Hope that you get to the bottom of it.  Elimination of all alternatives is definitely a good choice.  Stay in touch.

 

Carolyn

I almost burst into tears when the dr said he had to do the ercp. I asked about the risk of pancreatis, etc. but he said this time they are going straight to the duct - and won't be mucking about like last time - it will only take 15 mins, etc. At this point I'm in so much burning pain (started Aciphex today but it's not working yet), I would try anything. I hardly slept last night because of the pain. I was taking Prevacid in morn for the past 2 months, Pepcid chewable at night for the past 2 weeks - but I was feeling worse recently. Since I was starting Aciphex this morn, I thought I would skip the Pepcid last night, but maybe that was a mistake - I've always been able to get rest up to last night. I'm glad I opted for the ultra sound first, but dr. said they aren't usually very good showing ducts. Did you have more than one ERCP? I certainly feel like there could be leftover gallstones by my symptoms, so in one way it will good to rule it out. Are you currently on any medication? I'd like to be where you are - you've had many tests and procedures and they've ruled out all the real bad stuff, so at least that takes a load off your mind. I'm sorry to be such a pest but just in case you would like to email me directly I'm at chuckymom@yahoo.com.

Thanks so much,

Lisa

My name is Judy hicks. I had my GB removed 1 year ago and I have had nothing but problems since then. I developed Acid Reflux, have had 5 scopes, ERCP's, stents, etc. To this day I continue to have reflux and the PPI's nor the H2 Blockers work. My diet is minimal at best and the doctors at the clinic I go to dont know what to do. They have protocol procedures and thats the way it is.

 

I was seeing some powerful doctors when on insurance but I ran out of money. While not indigent things are rough because at this time I am still in pain and cant handle the stress of seeking employment. Had to rent out a portion of my home.

 

I take Carafate which is minimal in helping and Questran which I dont think does a darn thing. I am trying to find an attorney to help but so far no one is interested. Too much money to prove malpractice.

Hi Judy, Liz and Lisa

 

I am enclosing an article that I have just read.  It is absolutely the best thing that I have ever read and I am sure that is why we are having all this trouble.  The LES (Lower Esophogeal sphincter is meant to keep stuff from refluxing back stuff like Bile from the GB and as it is not let out slowly now we have no GB then it comes out more generously and if the LES is at fault then it refluxes back.

 

This article is fabulous and has so much good advice.  Read it three times as he suggests.  It took a while to get into this condition it will take a while to get out of it but I am sure if we take his ideas to heart we will get better.  I am doing better already and I think that the Molkosan that I took (which is the Lactic Acid that he refers to) is really helpful.

 

Anyway I am writing to all three of you and maybe Liz and Lisa might want to get in touch with Judy so that you can all talk together on the site.

 

Take care and don't hesitate to email me

 

Your friend

Carolyn

 

http://www.timpitts.com/AcidRefluxGERDprotocol.pdf

 

 

 

 

I am having similar problems. I had my gallbladder removed almost a year ago (July 2008) I did not even realize i was having acid reflux until i went to my ENT a few months after the surgery & he wasn't sure why my throat was irritated but gave me some anitbotics just in case it was bacteria. Then a few months later i went back cause it was by then feeling really raw & he said it looked like acid caused the irritation. He gave me Prislec. I used them for about a week or so. Then the acid kept coming no matter what i eat or drink even bottled water give me acid relux. I SEEN A GASTRO doc a couple weeks ago to see if i had a ulcer but i did not & he ttok a couple biopsies & said everything was normal. I'm getting regurtation to with a nasty taste in my mouth. I'm wondering if this is bile. I didn't realize this at the time i seen the gastro. doc & now i need see if he could do a 24 hr PH test for bile reflux.

I am having similar problems. I had my gallbladder removed almost a year ago (July 2008) I did not even realize i was having acid reflux until i went to my ENT a few months after the surgery & he wasn't sure why my throat was irritated but gave me some anitbotics just in case it was bacteria. Then a few months later i went back cause it was by then feeling really raw & he said it looked like acid caused the irritation. He gave me Prislec. I used them for about a week or so. Then the acid kept coming no matter what i eat or drink even bottled water give me acid relux. I SEEN A GASTRO doc a couple weeks ago to see if i had a ulcer but i did not & he ttok a couple biopsies & said everything was normal. I'm getting regurtation to with a nasty taste in my mouth. I'm wondering if this is bile. I didn't realize this at the time i seen the gastro. doc & now i need see if he could do a 24 hr PH test for bile reflux.

please if you found somethin to help the acid reflux after the gallbladder removal please let me know. i am so miserable since i've been having it & my throat is raw. Water even gives me acid reflux.

Hi Marge,

 

I have been trying to find a update blog for gallbladder surgery afterwards.  I finally came to this one and seen it was "2009"  I had surgery July 16, 2009.  I was admitted though the ER and out on July 17th.  I felt pretty good for the first couple of days and then I started sleeping alot, feeling bloated with just a little food and passing gas.  This is where I am at now.  I thought something was wrong with me until I found other outdated blogs and people are going through the same stuff.  I had acid reflux before surgery and still take something for it now.

hi did you have it removed threw gall stones, when i went to the docs the other day, i told him about the staple holding my insides together. he said forren object will cause reflux with the body rejecting it that there is no cure... sad hey we get rid of one prob and get another.