Bile Acid Malabsorption

Posted by nychole3080 @nychole3080, Sep 20, 2024

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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Profile picture for beebe @beebe

@hounddog26 Your doctor is wrong Cholestryamine works great when in capsule form, at least it did for me and yes drink 12 oz of water when swallowing the pills, you do not want a pill to get stuck in your throat. You could also swallow a pill with food, chew your food and slip a capsule in your mouth before you swallow, that works really well for me. I will let Jeepgrl explain the capsule filling process, I purchased my gel caps from iherb.com, there are a lot of different sized gel caps so you need to figure out how much powder you need to encapsulate and how many gel caps it will take. Jeepgrl might have that figured out for you too:) Best of luck!

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@beebe does the cholestyramine cause nutritional deficiencies?

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