In so much pain and no relief - help

By Susan Thursday, January 10, 2008

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I have been living with acid reflux for over three years. I have been to doctor after doctor. I have had 2 endoscopies, Bravo PH probe (Demeester score 60.2). I was diagnosed with chronic GERD, esophagitis and hiatal hernia. I have taken every medication possible with no relief of symptoms. My chest (sturnum) hurts so bad at times I cannot catch my breath. My doctor just keeps perscribing medication that does not work or gives me bad side-effects. I have taken Nexium, zantac (ranitidine), prilosec, prevacid, protonix, reglan, carafate, axid, Aciphex, zegerid and I consume about 20 - 40 tums per day. I am still in pain and they are not helping me. How do I get my doctor to listen to me? I feel like I am bothering him every two weeks. Every time I see him he perscribes me different combinations of the same drugs and they do not work. What can I do?

02/09/08 = I was scheduled to have Lap. Nissen fundoplication done on March 5th. I just found out that the Manometry machine is broken and will not be fixed until the first or second week of March. Now, I have to re-schedule my surgery because I have to have this test before the operation.

I have been vomitting intermittently through out the day and my pain is severe. I am at my last rope.

I will update further when I have more information. Thank you to everyone that commented - You have been so helpful through my ordeal.

02/15/08: I had completed my 4th endoscopy yesterday. I have graduated to stage 3 esophagitis and had to have biopsies on the lesion tissue.

Mysurgery has been set for April 9th (I cannot wait).

Comments (25) | Add comment

Vicki M

1/12/08 2:50pm

Hi Susan,

I am sorry to hear that you have been suffering for so long!! There are many resources online here to give you information to help you ask the questions your Doctor needs to answer for you. I am assuming you are seeing a Gastrointestinal doctor. In reading your posts, I would ask if you are a candidate for surgery to strengthen the esophageal sphincter. Read through some of the documentation online here (I will give you some links) and then make a list of questions to ask your doctor. If you are not getting answers or do not feel the answers you are getting are helpful, it might be time to find a different doctor. Just remember we're here online to help you. If you are having a bad day, log on and let us know! Chances are there are others here who have experienced the same thing you have and they might have some advice. Also, if you want to get some information about medicines, treatment, reactions, you can post your experiences here and see if anyone else has had similar or different results.

So here are some links for you to look into.

Start with what is Acid Reflux located here. Sometimes we are so close to the issue that we over look the basics. Read about what GERD is, what causes it, what your body does during an episode.

Next, go to the symptoms database to check symptoms. It could be you are having symptoms that are not particularly related to GERD. It could be you are having symptoms that are directly related to the GERD and you didn't think to ask your doctor.

Next, check out medicines you are taking. See if there are any interactions that might be affecting you adversely. Perhaps you need to stop all medicine(with advice of your doctor) and and try just one medicine or try a natural or homeopathic remedy. There is alot of discussion about Papaya and Pineapple fruits and juice helping with GERD. You can read about that in a sharepost that Dr Eisner answered here. There could be a medicine listed that you have not tried that might be a better option for you.

Then there are surgical options. You can read about GERD surgeries here and add to the information you use to ask your doctor about your treatment.

If you feel you are not getting the care from your Doctor, you should find one who will help you. There is a resource here that will help guide you in looking for a physician.

Lastly, don't give up! We're here for you if you need someone to lend an ear or pass along some information. Stay in touch and let us know how you are doing!!

Vicki M

Suzanne

1/14/08 4:19pm

I was on this site looking for info for my 2 year old who has acid reflux and is still not sleeping through the night. It sounds to me like you really need to see a Nationally Acclaimed Doctor in this area. A friend of mine went to Mayo Clinic which was expensive, but it changed her life. No one will take charge of your health except for you so I would keep being persistent with your research of the disease and finding someone willing to help you until it gets better. Good luck and a few prayers could not hurt either.

Vicki M

1/20/08 10:02pm

Hi Suzanne,

It is a fact of life that if you are seeing a doctor for any condition, you do have to manage your own care. When you have a child, that is the most important thing to remember. Children can't always put their hurts into words and it's up to you as the parent to make sure the doctors take care of the kid. I have a note book I carry when I see the doctor. I write down what he says and the decisions that are made so I can remember my treatment plan.

Doctors are lifesavers, but they are human and trying to keep track of hundreds of people is difficult. If each person kept a record of their own health issues, it would make it easier to manage their care, and the doctor will be less likely to make mistakes.

Good luck finding a health care professional for your child. Stay in touch and let us know how you're doing!

Vicki M

pat

1/21/08 1:10pm

maybe it's time to change DR.s if this one doesn't listen. I'm serious.... also Have you looked at side effects of other meds. you are taking as they may cause heartburn. lay off fried , & fatty foods, Chocolate & mint...just see if other food makes it worse... any pork does this to me...I do best on chicken & fish ( not fried of course)

Vicki M

1/23/08 12:01am

Hi Susan,

Just checking in to see how you are doing?? Have you made any progress with your current doctor or been able to begin searching for a new one?

Lert us know!

Vicki M

Susan

1/25/08 8:25pm

Hi Vicki. I am scheduled to see a surgeon next Friday. I will see then what I have to go thru, but it is a step closer. Thank you for asking. I do not know what tests he will want to have done. My GP said that they have to see if I am a candidate for the surgery. Hopefully it will not be too long from now.

Vicki M

1/29/08 2:13pm

Hi Susan,

I hope you are able to get some relief from the acid reflux. I sent this link before, but if you are interested in reading a bit about the surgeries for acid reflux before you see the doctor, you can start here. This database will give you information that you can use to make sure you ask all the right questions of your doctor.

Stay in touch and let us know how you are doing!! We'll be thinking of you when you have your surgery. Perhaps you have a close family member or friend who will log on and let us know how you are after the surgery.

Thanks much and stay positive!

Vicki M

Kelly

2/ 6/08 1:38pm

Hi Susan,

I just read your post and I am in the same boat as you. Unfortunately mine is a little worse. I was diagnosed with Accolasia (sp.?) basically when I was about 17 I started getting really sick. Throwing up all of the time, even when I drank water. After a MILLION different doctors and a million different exams/x-rays they saw that the muscle at the bottom of my esophagus was shut closed. We still have no idea how it happened. They stretched that muscle back open and it is now permanately opened so my heartburn is worse than ever. I have tried all of the drugs you said you have tried and nothing works. I now have to get an endoscopy done every year to check the lining of my esophagus and hope that I don't end up getting esphagial cancer. I know when I get heartburn really bad, I eat a piece of bread with some peanut butter on it to soak up what acid I have in my stomach. If that doesn't work, try drinking hot water, as hot as you can drink it. Sometimes that works too. I cannot eat tums b/c it makes me throw up. The tums just don't mix with the acid in my stomach. I just go day by day hoping I don't get any heartburn. Also too, if you get it at night, try sleeping with your head up as much as you can. Bending over and lying down just make the acid creep up your esophagus even more. I wish you the best of luck and I hope my ideas if you haven't tried them already help too!

Susan

2/ 6/08 8:09pm

Thanks Kelly! I am actually scheduled to have the lap nissen surgery done on March 5th. I cannot wait.

I will post and let everyone know how it goes.

Anonymous

2/ 7/08 10:55pm

Hi Susan, Do you burp alot?

Susan

2/ 8/08 9:44am

I do burp all the time. Immediately after burping - I get a severe pain behind my breast bone.

phil

2/10/08 12:21am

Hi Susan,

Thanks for the honest answer, as this condition is quite new to me. I constantly burp and have pain with it. I am curious if it is acid reflux or something else- it has been going on for about 2 weeks.

Phil

Susan

2/10/08 8:22am

Hi Phil,

Acid reflux can cause you to burp, cough and clear your throat whithout any heartburn. When I had taken my PH test - I had reflux episodes associated with all of those things even though I did not feel the burning. But, I do have severe burning pain the majority of the day.

Vicki M

2/16/08 8:50am

Hi Phil,

Since you are new to GERD, I thought I would pass along a couple links to information. You might have already seen this or know this from speaking to your physician, but sometimes it helps to go over it again.

First off there is a treatment database, and a tool for assessing your acid reflux. You can find the tool here. This is not a replacement for your doctor, but an enhancing tool to help you ask all the right questions.

Also, there is a posting here, that says belching is actually beneficial for some types of GERD.

I hope this helps a little. Please stay in touch and let us know how you are doing!

Vicki M

Vicki M

2/16/08 8:55am

Hi Susan,

Did you know that acid reflux can cause asthma and allergy symptoms like post nasal drip and wheezing? You can read about that here in the symptoms database. Sometimes there are symptoms that we have that are related to acid reflux that we don't realize, and others that we think are acid, and it turns out they aren't.

Stay in touch, let us know how you are doing! Also if you have found something that works for you, please share. Others might be able to find relief too!

Vicki M

Janice

7/16/08 3:14am

Hi Susan,

I am having your symptoms too. I am now taking a combination of nexium at night before I go to bed, and Prilosec OCT in the morning. I have my worse episodes at night. Did the surgury help you?

Janice

Marie

2/24/08 9:06am

I am wondering has anyone including your doctor mentioned eating right for your condition. There is a ton of medication you have listed but you dont mention one word about diet. I have everything you have mention, the hernia, the symptoms but you cant control this situation with eating right. YOu have to eat low fat , small meals thru out the day then stop 4 hrs before bed. You are inflaming your situation but not eating right and something is triggering you. I know it is hard but what choice do we have.

Susan

2/24/08 6:19pm

Hi Marie,

I only eat small meals - very bland foods (plain yogurt, crackers, broths, etc...) that is all I can handle. I can't lie down after eating. I have done everything I can.

Hopefully the surgery will help me.

jim

6/ 8/08 9:46pm

do you have spells of waking up at night and not being able to breath? if so you need to check if you have a large hiatal hernia, also avoid any fried foods, dairy products, including yogurt, salt should be limited, try foods high in protein,fresh fruit ect, stay away from nexium , i ve heard bad effects that come from it bleeding ect, i had barretts and had a hiatal hernia the size of a grapefruit taken out , nobody knew until surgery when the doctor opened me up and it plopped out , which required 100 stitches to close, the hernia can cause havoc on your body and can be overlooked easily, ask for a scan to see if you have one and the size of it

jim

6/ 8/08 9:36pm

i would reccomend that you have the hernia checked, if the hernia has grown it can press against your upper body , i had a hiatal hernia the size of a grapefruit removed and it had caused all kinds of problems , this wont go away until you have the surgery it only gets worse

brian

2/17/09 9:21pm

Hi Susan,

I had a nissan in 98 after a gastrologist had tried every medicine and nothing worked.

When I saw the surgeon he gave me the 24 hr moniter.He said I was having reflux 23

out of the 24 hours.(the highest reading he ever saw he said)I was pretty much acid free until I had an endoscopy 5 weeks ago.He took biopsies and it showed no cancer

but barretts esophagus.He also told me he saw no nissan it had broke away.Since about that time I have had severe breakthrough acid.It seems its 24/7.they have me on 2 nexium,3 reglan,2 300mg zantac and carafate.It hasn't helped at all,I also sleep(if

you call it that(close eyes)sitting up.(no relief).I also have a whole med cabinet of liquid antacids that havent helped either.I have great pain and unbearable burning in chest,esophagus,throat and ears and lungs.All I eat is plain rice and drink water.I cant

sleep,eat or enjoy life at all.I had a barrium swallow which was normal(but they always were before my nissan in 98.)I hate to have it redone but I believe there is no alternative.I did have barretts cells in 97 but after nissan I was told to have yearly endoscopies as a precaution and after a couple years of biobsies they didn.t show barrets.Now its back and with the breakthru acid it does cause anxiety along with the brutal discomforts...The doctor I wish would just send me to a surgeon but is moving at a turtles pace just adding meds despite the severity and history.(very frustrating)

I call get nurses answering machine,leave message and am lucky even if she returns call next day.(I am beside myself)My primary cares office even called to expedite appontment today but they didnt call them back.I called after finding this out and got the on call emergency doctor,he was aggitated when I told him my situation he said

I would probably have to have the nissan done again.He then said to call the nurse first thing in am and explain to see if I could be squeezed in some time.( I snappe d

could you please talk to fellow doctor for me)its like pulling teeth.So I will try again in am hope fully get some result and not another med.I just want you to know the first

nissan relieved my reflux for years and I truly hope yours does the same and you can

get your quality of life back.

GOOD LUCK (your not alone)

Brian

brianconnal

3/16/09 6:19pm

I finally had my consultation with a surgeon about my severe gerd,severe esophagotis and barretts esophagus.I had nissan in 93 and recent endoscopy revealed it had come undone.They have tried every med available with no improvement.The surgeon said I was a good candidate for redone but after hearing i had mesh put in in 97 for scar tissue damage in stomach split ,he said that makes it ten times harder to do it by laprascope.(bummer)He said he will try doing scope at first with more small cuts but no guarantee that he wont have to split me from sternum to belly button for 3rd time.The last thing I wanted to hear.I really have no choice but to go ahead with the surgery because my gerd and esophagitis is 24/7 with no relief.I have the surgery scheduled for April 6th and cant say Im looking forward do it,but I hope it helps..............

Janet McLaughlin

6/24/09 7:54pm

I understand what you are going through, after all the texts in the book my doctor finally come up with Acid Reflux this is 6 weeks now, I dont wish this for my enamy I have pain mostly at night and just cant seem to understand what is going on. I just think I need a new stomach

Salishangel

10/21/09 11:26am

Hello,

Omgosh, reading your story gives me little hope ...

I have developed COPD , due to the GERD . ? what came first I don't know .

I recently discovered adn was diagnosed with COPD , & GERD . I had no idea it could last so long.

Do you smoke ? if so , perhaps this can be the cause still ?

I feel sick all the time . I'm 47 yrs young , adn I feel 75 yrs old some days .

I hope you get well soon .

take care. blessings

A.C.

crys

11/ 1/09 1:11pm

I'm 37weeks pregnant been the hospital twice I'm desperate do not know what to do...

marescac@nc.rr.com

In so much pain and no relief - help

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