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Bile Acid Malabsorption
Is anyone out there on bile acid sequestrants for bile acid malabsorption? I had severe, chronic diarrhea for over 15 years (starting after my cholecystectomy) until after IBS diagnoses, several colonoscopies and other GI studies, I finally told a new GI provider that I'd had enough of living my life around going to the bathroom. He prescribed colestid, and my life has drastically improved. Just like that.
At first, I was relieved. When I went for my annual physical at a Duke Health clinic recently, I was eager to say my new diagnosis of bile acid malabsorption. The nurse asked me to repeat it. She searched a bit more. Asked me again. She couldn't find such a diagnosis. My relief has turned into frustration. Why is this seemingly common problem that can SO easily be treated overlooked? After a sleepless night, I tried looking online for more info about it from Duke. I found a study from the 80s. So then I tried the Merck Manual. Nothing. In the UK, it's completely recognized as a disease and even qualifies as a disability. NIH has many studies performed by scientists in other countries showing this issue is most likely much more common with people being incorrectly diagnosed with IBS and IBD. It seems only the Mayo Clinic recognizes this disease. I want to know who all is out there with this problem? A support group for this in the US could be so immensely helpful.
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@beebe does the cholestyramine cause nutritional deficiencies?
I have it as a result from whipple. It was my Sloan Kettering nutritionist who diagnosed me! She told me to ask my Gi about it and he put me on welchol/colesevelam (sp?)
I’m a mess if I don’t take it 2x65mg twice a day
@mjones149
For Cholestyramine to not affect nutrient absorption it needs to be taken 4-6 hrs from supplements. Since it binds bile acid it can affect absorption of fat soluble Vitamins - Vitamin A, E, D, and K. It gave me muscle cramps in my calf so must have hindered magnesium absorption too. Its binding effect on nutrients makes the timing of taking it problematic. I guess if you need to take it with food you might be able to figure out a time to have a snack and take a supplement 4-6 hrs after dosing with cholestyramine. https://www.goodrx.com/cholestyramine/foods-to-avoid
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Forgot to say I was lucky and only had to take cholestyramine at night, around midnight, when I would wake up to pee. Since I was taking it in capsules it was easy to swallow. That one dose was enough to solidify poo's for the following day:)
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1 ReactionJust joined this group, I may be different from all of you, I still have my gall bladder, but suffered several years with giant hiatal hernia, stomach had gone into my chest before surgery. Not sure if this contributed to my diarrhea, but it has been bad off and on for several years. After more colonoscopy’s and tests all negative, I was placed on Colesevelam 2 tab, 2x/day. I’d did seem to help for awhile, but I still needed frequent Imodium doses. GI dr. Changed me to Colestipol about 6 weeks ago, was working pretty well, but now I am having more frequent attacks of liquid stools. Trying to watch the fat content of my diet, not always as good as I shoukd be if everything is going ok.
Antone else with these kind of experiences? Thanks for any input.
I was diagnosed with bile acid diarrhea about 5 years ago. I'm better but I still have problems in the mornings. When is the best time to take a binder like Colesevelam. I have seen conflicting recommendations. Empty stomach at bedtime or with meals or 2 hours after a meal?
My son is 48 yrs old and has nausea, bile acid vomiting and acute diarrhea every day.
He had a colonoscopy and two endoscopys, an abdomen ultrasound, a Barium Meal scan and also blood tests.
It seems he has a combination of Esophageal Motility Disorder and Bile Acid Malabsorption .
The Esophagus has tertiary contractions which affect the food travelling down effectively, possibly causing the vomiting bile and the malabsorption of the bile, causing a loose stool.
He has been prescribed Cholestyramine 3 times a day, plus PPI medication. But he also.has epilepsy, so has to be careful when he takes the Cholestyramine, as we don't want the anti convulsant medication to loose the very positive affect he has been having, as he hasn't had a seizure for 6 years, he also had brain surgery for that.
Hopefully sharing with others who have similar experiences is comforting in some small way.
My son only.came out of hospital today and was told about the Esophageal Motility Disorder and he is now going to another specialist to see what can be done to ease the nausea, bile.vomiting and diarrhea on an ongoing basis.
Perhaps others haveexperienced something similar.......
@pepperk I take colestipol as its working better for me than the colesevelam. I take quite a bit 2 in morning and 4 at night. The biggest difference I notice if I am late by even 1 hour I may have more loose stools. Then I also take Imodium. Trying to figure out maintaining a semi regular lifestyle. I know fatty foods can be a real trigger which I avoid 90% of the time, but sometimes it just doesn’t work. Good luck to you, maybe others have additional feedback.
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1 Reaction@joanne1627
Thank you. Do you take the tablets? I'm trying one tablet with lunch and one at dinner right now and it seems to be helping. I also try to limit fat and dairy and I don't eat gluten because I have celiac disease too. I was taking it on an empty stomach at bedtime but I would have a lot of stomach pain and loose stools in the morning.
I might try colestipol instead.
@joanne1627
You may want to look into this testing for the cause of loose stools.
https://news.mayocliniclabs.com/gastroenterology/malabsorption/exocrine-pancreatic-insufficiency/
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