chronic severe pain

2/23/09 3:45pm

Hi Bonnie,

It sounds like you need to find yourself a new gastroenterologist. Pain with IBD can be as severe as you have described, but in this day and age you shouldn't have to live with it at that level. Bentyl is an anti-spasmodic that is helpful for some and not for others. You may need to ask your doctor for an Rx to try a different anti-spasmodic.

When first diagnosed it wasn't uncommon for me to have 20-30 BMs per day and there were plenty of nights I spent curled up in a ball on the bathroom floor wishing the pain to go away in between potty calls. A combination of Asacol, Bentyl, huge diet changes, and meditation is what helped and continues to help me.

You really need to find a new doctor, today, who will take you seriously.

Best of luck,

Elizabeth

clock,bonnie

2/24/09 8:30am

thank you for your comment, i am trying to find a new dr. but they all seem to not take me serious because i am young 33(they say) and not obeese..what that has to do w/ it i dk.. i just wish their was not so much pain and anxiety each and every day of my life.

Anonymous

3/20/09 8:57pm

I WAS DIAGNOSED WITH A SPASTIC COLON AT AGE 14.MY GRANDMOTHER HAD DIVERTICULITIS.AND SHE WAS DIABETIC.BUT MY SISTER AND I BOTH HAD IBS.BACK THEN IT WAS CALLED A SPASTIC COLON.THAT IS WHEN I FOUND OUT LETTUCE IS THE HARDEST THING TO DIGEST.I WENT THROUGH REAL PAIN BACK IN THE DAY WHEN EATING OUT WAS A SALAD,STEAK AND BAKED POTATOE.I NEVER MADE IT PASSED THE SALAD.I WAS 32 WHEN IT FLARED UP AGAIN.IT ALSO SEEMS THAT STRESS HAS A LOT TO DO WITH IT AS WELL

.OH HOW I REMEMBER THOSE GRIPPING CRAMPS WHERE YOU WERE CURLED UP IN A FETAL POSITION.SWEAT DRIPPING OFF MY BODY AND FREEZING AT THE SAME TIME.THEN I DEVELOPED SOME BAD CHRONIC BACK PAIN PROBLEMS.SO THEN I HAD TO TRY TO LIVE WITH CONSTIPATION.I NEVER KNEW THAT IBS INCLUDED CONSTIPATION.I HAD ALWAYS HAD DIARRHEA,NEVER KNEW WHAT A SOLID STOOL EVEN LOOKED LIKE.THEN I HAD TO START TAKING AN RX LAXATIVE.JUST TAKE A FEW DROPS TOO MUCH AND IT WAS PAIN AGAIN.IT TOOK ME A YEAR TO FINALLY GET MY RECIPE DOWN PAT.AND FORBID THE NIGHT I FORGOT MY STOOL SOFTENENER.BUT I WAS ABOUT 29 WHEN IT REALLY FLARED.I HAD 3 CHILDREN HAD TO LIVE WITH MY PARENTS FOR 5 YEARS.DATED MY NOW HUSBAND OF 25 YEARS BUT HE WAS 8 YEARS YOUNGER THAN I AM.I LIVE IN JAX AND FINALLY FOUND A VERY KIND DOCTOR FULL OF COMPASSION.I AM SURE HE IS RETIRED BY NOW BUT HIS NAME WAS ALEXANDRO RADI' A SPANISH NAME.HE CAME OUT INTO THE WAITING ROOM AND INVITED YOU BACK AND ANYONE WHO CAME WITH YOU THEN HE TALKED TO YOU FIRST.I HAD BEEN ON ZANTAC FOR WEEKS AT THAT TIME IT WAS A BRAND NEW RX.I TOOK IT AND PEPTO BISMAL FOR A YEAR SOMETIMES RESORTING TO BENTYL OR LIBRAX FOR THOSE TERRIBLE CRAMPING PAINS.I REMEMBER ONCE AFTER WE WERE MARRIED LESS THAN A YEAR CRAWLING TO THE BATHROOM.THE PAIN WAS UNBEARABLE.I HAD DIARRHEA AND I THINK MY INSIDES WERE BULGING OUT OF ME.MY HUSBAND TOOK ME TO THE E.R.,AND THE DOCTOR KEPT ASKING ME WHY DO YOU RUN TO THE BATHROOM.THERE IS NOTHING LEFT IN YOU.AND I SAID WELL MY COLON SPASMS LIKE SOMETHING IS COMING OUT.WHAT DO YOU SUGGEST I DO.LAY ON THIS COLD COT WITH NO PILLOW.I CAN DO THIS AT HOME.PLEASE GIVE ME SOME KIND OF ANTI SPASMOTIC MEDICATION AND I WILL BE OUT OF YOUR HAIR.

I NEVER USE CAFFEINE IN ANYTHING.AND I FOUND OUT SMOKING COULD CAUSE CRAMPS.I QUIT FOR 3 YEARS BUT STARTED BACK AS THE SAME STRESS WHICH CAUSE MY STOMACH ATTACKS CASED ME TO GO BACK TO SMOKING ONCE I HAD MY STOMACH UNDER CONTROL.DR. RADI ASKED ME IF I HAD BACK PROBLEMS AND I SAID YES...HOW DID YOU KNOW.HE SAID I ALWAYS GET THE BACK PROBLEMS BECAUSE THEY PUT YOU ON NSAIDS AND THINGS LIKE NAPROSEN WHICH LITERALLY EATS YOUR STOMACH UP.

THE LAST BAD ATTACK HAPPENED WHEN WE WERE VISITING OUR FIRST GRAND DAUGHTER IN S.C. I HAD MENSTRUAL CRAMPS.VERY BAD TOO.AND MY DAUGHTER SAID MOM THEY HAVE RX FOR THAT NOW.SO TRY MINE ITS OVER THE COUNTER AND IT CANT HURT YOU.OH YEAHHHHH TRY AGAIN.IT WAS AN HOURS RIDE TO COLUMBIA THE NEXT HOSPITAL.AND THANK GOD THE E.R. DOCTOR LISTENED TO ME AND PRESCRIBED ME BENTYL.I WAS FROM OUT OF TOWN.HE WAS ONE OF THOSE RARE DOCTORS WHO ACTUALLY LISTENS TO PATIENTS.BUT ON OUR WAY HOME OUR PICK UP WAS OVER HEATING ABOUT EVERY FIFTY MILES.IT WAS THE LONGEST TRIP I EVER HAD.I SLEEP WITH AND ELECTRIC BLANKET NOW.SUMMER WINTER FALL SPRING.I HAVE SO MANY DIFFERENT PAIN ISSUES THAT A REGUALR OR LARGE SIZED HEATING PAD JUST DIDNT CUT IT.OH YES MY FIRST DIAGNOSIS FOR IBS WAS AGE 14 BY A VERY OLD FAMILY DOCTOR SO AGE HAS NOTHING TO DO WITH IT.ALL THEY NEED TO KNOW OR DO IS TO TREAT YOU WITH THE DIGNITY AND HONOR YOU DESERVE.I HAVE THOSE DAYS WHERE I THINK I WOULD LIKE TO HAVE DR.KAVORKIAN ON SPEED DIAL.WE ALL HAVE THOSE THOUGHTS SOME PEOPLE ARE AFRAID TO SAY SO BECAUSE A DISGRUNTLED FAMILY MEMBER MIGHT BAKER ACT YOU SO JUST BE CAREFULL WHO YOU SAY IT TO.MAKE IT SOMEONE YOU TRUST AND ALWAYS REMEMBER THAT THIS SITE HAS PEOPLE TO TALK ABOUT THAT WITH ALSO.I DO HOPE MY EXPERIENCES HELPS YOU TO KNOW THAT YOU DO NOT SUFFER ALONE.I AM NOT 58 AND ON MY WAY TO FIND OUT WHY MY STOMACH HAS FLARED UP YET AGAIN

clock,bonnie

3/20/09 11:05pm

it is realy good to know their is some one i can talk to who understands, but i am also sory you have sufered as well.

I did see my fam. doc and he is sending me to a brand new gi ,

so i am glad for that. i had a terrible flair up today, also on a road trip a 2 hr road trip was not fun at all..i just hate this way of living.... thank you for writing to me.

Anonymous

9/18/09 5:05pm

I have ibs and you really need to check out www.helpforibs.com!! her products are great and she is the number one patient expert..check out the boards..it's all free! Her diet has helped so many people with ibs,her books,supplements!

SW

5/27/09 4:55pm

Yes, when I am having a flair-up I feel exactly as you are describing. It's frustrating because you feel helpless and as if you really might die.

I have actually brought a kitchen stool into the bathroom with me when I feel like this. I set it in front of the toilet & lay my head and arms on it. It helps when I am having gut pain and am at the point where I feel exhausted and like I may faint.

Anonymous

6/ 3/09 1:30am

I wanted to reply because I too suffer from chronic IBS and have missed out on so many family functions that I wonder why go through all this horrible pain and continue dealing with the thought of another attack happening. I myself have had 11 colonoscopies...YES 11. Each time I was told the same thing "You have IBS/IBD and we can try an antispasmatic but I can't promise anything". One of my life savers was finding a pain clinic that helped me and listened to me and got me on an around the clock narcotic plus break through meds...unfortunately they got shut down and I am sh*t out of luck now with no insurance and am back to having daily attacks. Please know you are not alone, I keep a TV try or Large laundry basket in every bathroom to lay across so I don't pass out and fall on the floor and hurt myself. it is a better position to be in than trying to lean on the wall or against the back of the toilet. I have the sweats then the chills too (it sucks when you are out in a public restroom and then you stink like sweat afterwards). My only saving grace like I said was narcotics but some think its worse to take but I went over 18 months and only had 5 attacks compared to having attacks daily as I am back to having now...my poor husband and kids are the ones I feel sorry for. I know it breaks their heart seeing me like this. Every doctor is different so don't just go to 1...get other opinions and get the meds you need! If you want to chat about any of this please email me...

dmdonais@comcast.net I can let you know names of meds I have tried and maybe they could be of help to you...IBS is something I hate having and have learned so much about it but there are still unanswered questions so once I get them I will let you know. Good Luck!

Karena

7/ 2/09 9:03pm

Hello,

First let me tell you that I also suffer from depression and take meds for that, Lexapro ( I do not know if that is considered an NSAID but I will look it up later), which may worsen IBS. I diagnosed myself because doctors could not figure it out and just relegated to stress. However Pepto Bismol does not help and neither do most over the counter digestion meds including laxatives that make it worse. I cannot find the perfect diet. My 1st one began when I was 15, there was intense pain when I thought I was going potty in the middle of the night and then I must of passed out with shallow breathing. My parents found me and literally thought I was dead or dying. By the time I came to, the pain was gone. The pain disappeared for a few years until about my early 30's and come back with a vengeance it did. I would have diarrhea every morning and a bowel movement every day by 9am especially after my coffee. I could not go to work until it passed and found that difficult to explain to my employer without a doctor's note. Sometimes I would get it at work even having embarassing diarrhea where I had to just go home without an explanation and dirty pants. My belly was distended but not sensitive to the touch, just grossly inflated. I gained 20+ pounds even thought my diet did not change in a short period. At home I got it for a couple of months straight and would pass out in the bathroom and sometimes would not make it from the floor or toilet into the shower where clean-up was easier. If I made it, I only had the energy from the cold/hot sweats, pain, and black-outs/nausea to lie down in the shower with warm water on me (the only comfort), losing consienceness and coming to within a mess. I finally did find something that helped. I found over-the counter natural herbal remedy specifically for IBS at Henry's Market in California a Natural Food Store. It helped right away with symptoms slowly at first and then entirely until maybe a few more months until I began re-taking them. Then I also thought my good bacteria which is supposed to help digestion may be compromised from my taking antibiotics for a kidney and several bladder infections, I also take natural medicine to restore digestive bacter (this I am only doing for 1 month and unless I ever take antibiotics again which can destroy good bacteria). I have not had that bad of an occurence now in a year. Normal stomache aches and normal diarrhea or indigestion due to certain foods or a flu do occur but not nearly to the extent that IBS used to control me. Now I just look forward to losing the weight I gained but boy am I a happier person and I still drink coffee and still have bowel movements every morning but not with pain or diarrhea. Hope this helps.

Rhonda

7/20/09 10:08am

I was diagnosed with Crohn's desiese 3 yrs ago and your symptoms sound exactly likewhat mine were. I lost 18 pounds in one month before diagnosis and was bleeding internally. You should get a colonoscopy done to determine what is the right treatment for you. Also you should see a Gastroenterologist for this. Prednisone is a steroid that within 2 hours of taking makes me feel normal again. But is not a long term treatment.

I wish you the best of luck.

Rhonda in Florida

clock,bonnie

7/22/09 8:34pm

i had one on the 15th they sent some tissue off for a biopsy i am waiting for results now.

Anonymous

10/22/09 3:42pm

Dont fill discouraged if that doesn't find anything. I too have Chron's disease and it took two years of testing before they found it. I had a colonoscopy and an endoscopy but they din't find it until later when they had me swallow a small camera that took pictures all the way through the digestive process (sorry I can't remember right now the technical term for it). But that's when they found out that I have agressive Chron's in my small intestines.

So no matter what don't let them convience you that you are crazy or that you aren't haveing these symptoms. Only you know what you feel like.

Anonymous

7/22/09 7:39pm

I'm sorry to hear about this, I go throw the same thing every single day. One time I almost faint on the toilet, but thanks God I didn't. But I have interstitia cystitis, irritable bowl syndrome, pre- menstrual cramps, all this is causing me severe pelvic pain, and yes sometimes you don't want to live home or even get up of bed. I'm 30 years old, and I have bean living with this kind of pain for 5 years or so.I'm just want you to know that you are not along.

Take care, i hope you get better!!!

Su

clock,bonnie

7/22/09 8:32pm

thank you to every one 4 yr support, i had a colonoscapy and they sent some tissue for a biopsy i am waiting 4 results. ibs is no joke , i have thought of suisidde at times. but then thought better of it.

Anonymous

9/ 3/09 12:23am

I have had issues as you desribe for 30 years. When asked to rate the pain from 1-10 I tell dr it is a 20. A few weeks ago, I passed out and hit the tub and ended up with a black eye, could have been worse, usually i hit the floor, but this time I landed the wrong way. yesterday, my doctor of 9 yrs thinks he finally figured out what is going on, some type of a parasympathetic discharge episode, has something to do with the Vagus nerve. I need to read up on it to understand better, but what a relieve it is to know what causes me to have the severe ab pain, sweating, fainting, etc. Finally , all the symptoms fit, severe, ab pain,sweating, soaking wet, your heart rate speeds up and causes your blood pressure to drop which causes fainting. I am 48 yrs and can not image how i will handle the attacks when i am in my 60s. Hopefully now that we are on the right track, will find something to prevent going forward.So if your dr says he is not sure what you have, ask him about Parasympathic Tone /Vagus and could it be a Parasympathtic discharge episode.

Anonymous

9/14/09 2:00pm

I have done this for many many years.I will feel like I have to go but can't then get very dizzy (have passed out many times)only then can the stool get out(while I'm on the floor passed out.Docs say OH it's just the vagus nerve it's nothing.Well They should come clean my bathroom some time.I have been OUT fo up to 1 hr.It's horrible.

Anonymous

9/18/09 4:08am

I have had exactly what you described happen to me. I wass throwing up and had blood in my stool for about two hours. I was blacking out so often that my family called 911 i had lots of test done at the hospital and was told i have ibs and refered to a gi. I havent been yet but i wanted to let you know that you're not alone.

Hope you figure out something that works for you.

life

9/19/09 2:51am

I have fainted in the toilet. I had diaharria, cramping and vomiting and didnt know what it was I got so bad that I drove myself to the hospital because no one believed me. I compared it to giving birth or worst. I was not diagnost but the symptoms seem to be like those of ibs. I have not had an episode in over a year but am constantly scared. I sometimes feel it coming and try to sleep but it doesnt help but I think god its not as bad as my episodes used to be. is ibs genetic?

In pain

9/25/09 2:26pm

I was so releived to see these posts. I am having an episode today and want to die. The pain is indescribable, sweating and almost passing out. I am besides myself and I know going to er will do no good and cost a fortune. Called a gi and can't get in till tuesday. I'm scared for the next few days for it to happen again. Don't know what to do or take. Go from constipated to runs back to constipated. Ugh! Any suggestions till I see the doc?

clock,bonnie

9/25/09 3:57pm

do u take any thing regularly for this? because no over the counter stuff is ever going to work, i take levsin and bentol for the pain amtezia for constipation and limotol for direaha they are all prescriptions i also take xanax for the panic it cause me thinking i am going to die and believing it! lately i have bee feeling pretty much ok.

Anonymous

9/25/09 4:24pm

Thanks for responding... I have terrible anxiety today over it... lightheaded , the shakes, etc i have Klonopin for my anxiety but I have no other meds for the stomach. I do not take anything regularly for it. I take fiber pills and drink laxative teas when i am constipated but now i don't know what the hell to do. guess i can't get any other meds till i see the doc on tues. i was diagnosed with IBS about 10 years ago now but they never gave me anything and it hasn't been this bad in a long time. this is the second attack in a week. it happened at the gym last friday and it was horrible, thank god my sister was there with me. it lasted about 2 hours and it never lasts that long. im just besides myself... again thank you so much for responding though, its a semi-relief to know i am not the only one who experiences it this dramatically.

Anonymous

9/27/09 6:35am

Hi I am from australia. I have suffered ulcerative colitis for 9 years now I am 32. I got that bad at one stage that they were going to take out my large bowel and re attach my small bowel in its place. Once they do this you are cured for life. But at the last minute they told me I was too young so they didnt do it. I take a bundle of meds each day to get me through. Mesalazine, imuran and prednisolone. I am on the max dose of everything. BUT stress makes me worse and I mean worse. SO you need to take time out and rest as much as you can. Certain foods will make me worse like Fatty food, junk food or spicy foods and soft drink gives me bad cramps but diet soft drink doesn't.

YES i know only the healthy food makes me feel all right.

When i first got ulcerative colitis I was very ill. weight loss, fever, blood,mucus in bowel movements, nausea,vomiting,migraines, fainting, severe cramping. So much so that I was having pethadine shots an the hospital.

You need to find a good doctor that deals with ibs every day so that you can be diagnosed and treated. At present my colitis is nearly back in remission but i have to take alot of meds to get me their but atleast all the pain, toilet stops, fainting, nausea and heahaches is nearly gone 4 awhile.

Ulcerative colitis can be cured if you get bad so ther is hope.

shereecarrigan@bigpond.com if anyone wants any more info or to talk about my experiences. Australia is going well with treatment for ibs. They reasearch and do trials all the time so hopefully one day we will be cured.........

arielle

10/18/09 12:27pm

hii so sorry to hear your not feeling well. hang in there =[. every day is a struggle for me. i have crohns disease your symptoms sound like mine. im sure you have something more serious then ibs sure sounds like it go see another gastro specialist. hope u feel better i know what ur going through =[

garyneal

7/ 5/11 11:45am

That's rough. Diarhea is no fun. The best way to get rid of those symptoms is to never get them. A lot of processed foods cause indigestion and disrupt normal intestinal functions. The trick is to eat natural foods from a natural food store. They keep your insides happy, and your intestines functioning properly more so that most foods out there.

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