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
I have BAM because of intestinal surgery. The pills (colestipol or colesevelam) are ten times easier to use than cholestyramine. I would recommend that everyone swaps to the pills unless their required dose is so low that they can only achieve it by measuring out small amounts of cholestyramine. I am on 3 pills of colestipol a day so in my case it's a no-brainer.
-
Like -
Helpful -
Hug
1 ReactionHello Beebe:
Sorry to hear that. I started taking NOW acacia powder but then I realized that it contained both Senegal and Seyal powder, not the highest grade. I was up to 2-1/4 tsp morning and evening. Since I switched brands, (now taking Micro nutrients) Acacia Senegal powder I started with a small dosage again as I normally do and I'm up to 1 tsp early am and 1 before bed. It definitely agrees with me. Bile acid malabsorption (BAM) is why I'm taking it. If I don't my bile salts will show up in my stool from time to time. It's actually a bright yellow and appears to be urine; however, you KNOW you're not urinating it. SO, it started AFTER my gallbladder was removed. I believe it was about a year later. That's when my GI doc said that I had IBS and SIBO. I actually have too much bile salt in my system and is not being moved around normally. Since I've been taking the acacia powder I've really gotten it under control. I could count on one hand the episodes when I've experienced the 'yellow liquid in my poop' and I've been taking it since last August. Still have many other issues but I'm noticing that when I eat more vegetables whether hot or cold I do better.
Yes, I discovered that I could easily make cholestyramine in tablet form by using those goofy
clothes pins. We used to use them for keeping snack bags closed like potato chips. (Of course I don't indulge anymore since I've gotten these awful issues. But I put the capsule in that hole in the clothespin and it was easily accomplished.
Hope this helps. Let me know if you have any more questions. Good luck to you.
Maybe I should try the acacia powder again and see if it still bothers me, it sounds so much easier than the cholestryamine. In the meantime I will try your clothespin treat for holding the capsule as I fill it. Thanks so much for sharing:)