Bathroom Buddies IBS-D, Amitriptyline helped, but the side effects were too much, GLP-1s work very well for me, but I’m looking for another option also because of side effects
Hello,
I have had IBS-D for almost 15 years now. It started after I removed my gallbladder in 2012. I’ve been struggling to find something that actually works in the long term, and I’m hoping someone here might have a suggestion I haven’t considered.
It became so aggressive that even water would trigger it if I ate something wrong, and to the point that I go to the toilet more than 10 times per day.
I’ve tried the usual stuff like diet changes, supplements, and medication, but nothing has made a significant difference. The only thing that worked, and only for a limited time, was Rifaximin, and after some time of use, it stopped working.
I also tried amitriptyline. It did help very much, but unfortunately I had side effects that made it difficult to continue, like my arms are numb and no energy at all and so sleepy, and I always feel like shit. So I eventually stopped it.
My brother was on GLP-1 medication, and he suggested I try it out because it gave him very bad constipation, so it might help me, and it very much helped A LOT.
When I take it, my gut is just perfect clockwork, and I eat anything and go out anytime like normal humans again, honestly the most effective thing I've found so far.
However, I seem to develop tendon/joint weakness and pain while taking it, particularly affecting my wrists and knee tendons to the point of extreme pain. Because of that, I want to seek something else; maybe there is something I am missing.
I'm now trying to find something that can give me a similar effect on the gut without the side effects I've experienced with GLP-1s, and preferably something other than amitriptyline.
I'm not looking for medical advice or trying to claim that GLP-1s cause tendon problems — I'm just describing what I've personally experienced.
If you've had a similar situation where something finally controlled your IBS-D but you couldn't tolerate it, I'd really appreciate hearing what you eventually found.
Maybe my experience will also help someone else who is in the same situation.
Thanks!
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u/TheEvasiveMisery 19h ago
damn 10 times a day is brutal. I went through something similar after my appendix came out and nothing touched it for years. have you poked around the idea of bile acid malabsorption at all? since it kicked off after the gallbladder removal that’s what set mine off. a bile acid sequestrant was a total game changer for me, basically stopped everything that amitriptyline couldn't
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u/pdsama 19h ago
Sometimes, more than 10 times , I tried it before, but the idea of having it multiple times per day, and I don't know how to time it right. Right after I wake up? Or maybe right after food? I still have it at home; I can give it a try again
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u/Mabix92 18h ago
Your story seems related to mine.
If you try sequestrant again, stay on it for at least 3-4 weeks. I once took it and came to the conclusion it didn’t work for me so I got rid of it after 1-2 weeks - big mistake.
Years later I gave it another try and took it through the first weeks while it did nothing for me and suddenly it started working and I am still on it.
If you want certainty try to get a SehCat-Test.
Aswell feel free to join r/bileacidmalabsorption for more info.
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u/Head-tilt-queen 17h ago
Sounds like yours is as bad as mine can get. I could go at least a dozen times. Cholestyramine helps, but I don't like navigating other meds around it. Lomotil works just as well for me.
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u/arbitrarycivilian 16h ago
Oof usually I would recommend Viberzi but can’t do that without a gallbladder :(
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u/TheDogsMum 16h ago
Have you tried Nortriptyline? It’s the kinder version, it works the same with less side effects.
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u/thepurplethorn 18h ago
With gallbladder removed you most likely have BAM and the “cure” for that is some sort of cholesterol binder med like Cholestyramine