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Bile Acid Malabsorption - who all has this problem?
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 Ha....I didn't get a diagnosis. I figured it out myself with the help of Jenna Volpe from Wholistic Living. Everything matched up.
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1 Reaction@jeepgrl
Glad you were able to consult with someone who knows about digestion. It seems like the practitioners who have interest in helping are the ones who have struggled with digestive issues themselves.
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1 Reaction@beebe Yes. Oh, I checked into adding boron to my list of supplements which I try to keep to a minimum. It appears that boron shouldn't be added if you're supplementing with magnesium which I am so I'm going to be looking closer at my diet and see if that's a better option.
The exact thing happened to me, except my own research found it. I had years of suffering, testing and at least 5 different diagnosis'. Never once mentioning BAM by 4 GSTROS, 3 Pa's , 2 GPs. When I found the diagnosis on AI, I sent a portal message to my GI. I said, I want to try Colestid. All he said was OK and Il send a script to your pharmacy. He prescribed 360 Pills for a trial, which showed me he had no experience in using this med. I was hesistant to drop over $200.00 on the meds, but I did. It was the best money I ever spend in my life. I take 2 per day at noon, because I take all my other meds at 7 am and 10 pm. Normal bowel movements Once in the AM, and dont feel the urge all day. No bloating, no gas, all is great. Not to mention, my cholesterol and lipd panel is way lowwer that the high end of normal. !
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5 Reactions@cheryl46 have you also been diagnosed with pancreatitis? I am pretty sure I have bam along with epi which I take Creon two with each meal one with a snack. I have read that medications for bam and also cause pancreatic flares I am in between GI doctors right now I'm going to see a pancreatic specialist in 2 weeks the Creon was working great for the first 6 weeks now I'm back to having severe bile diarrhea. Just curious if you were also diagnosed with chronic or episodes of acute pancreatitis?
@jeepgrl
Just curious, what benefit would boron add to your health?
For bone health I take calcium, magnesium, vitamin d, and vitamin K2 as MK7. I like the New Chapter Bone Strength take care supplement, it is NSF, UL, and consumer lab tested for quality and purity. I add in extra magnesium, K2, and D3. Bone Strenght Take Care is a bit spendy but I like knowing that there are not excessive heavy metals present, which is always a concern when supplementing with minerals.
@beebe I take colestipol, which is a tablet form of Colestid. I have bile acid reflux from cancer treatment meds.
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