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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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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.
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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:)
Oh yes, it definitely is VERY time consuming but worth the effort if you KNOW you're saving your teeth!
Can you believe they actually expect people to dissolve the cholestryamine powder in a liquid and drink it? Very barbaric, I tried it once and said "never again!".
Try putting it in something like oatmeal, pudding, applesauce or any kind of pulpy fruit, such as pears, crushed pineapple etc. It doesn't have to be in a beverage. It doesn't disolve and also is perfectly fine to add to something like tomato soup or other soup.
I have compounded Chloestryamine powder, it has zero additives and smells like dead fish. Packing it into gel caps works best for me. I really think the negative effect it can have on tooth enamel should not be taken lightly.
I know it's disgusting. They actually want you to destroy your teeth???? Makes you wonder. AND I believe if you get this done buy a compound pharmacist, they would charge you about $50/month. That's insane!
Idk about you but I think this method of consuming it is STILL very tough on the teeth, all things considered. I personally backed off of it.
Like you I backed off from using it only when absolutely necessary, I got a scary fecal impaction once from a small dose and was so relieved when the sucker finally dropped out. The cholestryamine is great for recovering from the colonoscopy prep and the flu. Otherwise eggshell calcium seems to work fairly well for me, I am satisfied with a softer poo as long as it is formed into logs.