Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Digestive Health Support Group.
Connect
Hi Nycole!
I developed bile acid malabsorption after a complicated Appendix surgery which resulted in removal of part of my small intestine among other things. The lower portion of the small intestine is where your digestive bile is reabsorbed, so when that gets removed the unabsorbed bile goes into the large intestine and causes the loose stool.
My Surgeon was not very helpful with the loose stool issue, they recommended Citracell, which I had to take an enormous amount of and which also has the side effect of disturbing the mucous layer in your small intestine which is where your digestive bacteria live; when it gets thinned out enough you get leaky gut and digestive sensitivities to foods that use to digest well.
My primary care physician checked with a gastroenterologist and told me I had bile acid malabsorption. She suggested I try Cholestryamine, a bile acid sequestrant, which worked dangerously well. It made me so constipated it was scary. I finally figured out that calcium carbonate is constipating for me. I also take magnesium glycinate instead of citrate as the citrate encourages loose stool and through trial and error I found some probiotics that firm up my stool (SFI Health Ther-Biotic Synbiotic).
I think bile acid malbsorption if pretty common among people who have a portion of the small intestine surgically removed and am surprised you have run into physicians who are clueless. Every gastroenterologist should be aware of this issue.
With the removal of your gall bladder you are overproducing bile acid so would have a more severe problem than I am experiencing. I have read that for some fortunate people the bile acid problem resolves over time, hope you are one of the lucky ones!!
-
Like -
Helpful -
Hug
1 ReactionThanks for suggesting SFI Health Ther-Biotic Synbiotic. I’ve tried Cholestyramine which worked for awhile then it stopped. Switched to acacia Senegal powder and now that seems to be somewhat tapering off from working. Idk maybe I’ll try Align with it. Someone suggested that or simply what you suggested. Got to be careful with the BAM. Going to be seeing a new PCP soon as it appears I may now be suffering with iron and/or vitamin B12 deficiency (anemia). Hoping you see this message. Wishing you the best of luck.
Align won’t work. I have found that nothing is that simple.
Hello Judith-
Yes, I checked into the reviews for Align and they were not that good. My plan is to revisit a 'new' PCP. The old one wasn't attentive at all. I'm going in with the my request list of blood tests as my blood tests are all rather old and I believe I've developed anemia from concentrating on eating probiotics and went on an elimination diet for gut issues. Honestly, sometimes I think we try too hard. Anyway, I can't beat ANYTHING until I get the basics down pat. Then I can go from there.
It called bile salt diarrhea post gallbladder removal.
Colestid is great at keeping it under control.
Normally when our body gets used to not having gallbladder to remove bile then it starts filtering through the liver over time.
I have pancreatic insufficiency post Covid. I take Colestid and pancreatic enzymes, 4 before every meal and at bedtime. It does get annoying taking so many pills 🤷♀️ but it's worth not going to the bathroom 10-15 times a day