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Repeat Collagenous Colitis "flare"

Posted by fdixon63 @fdixon63, Jul 14, 2024

I was first diagnosed with C. colitis (confirmed by a colonoscopy) in Feb. 2022 and was put on a 3-month treatment of Budesonide. It worked great. Two years later (March 2024) I had what seemed to be a "flare" of the same. No colonoscopy done. My GI doc again prescribed 3-months of Budesonide. Relief came within a couple of days. Now I am having the same symptoms--loose stools (4-5 a day), lots of gut sounds, urgent trips to the BR, etc. Has anyone experienced similar recurrence so close together. I thought if it could be controlled for two years, that would not be so bad. I don't know how my GI doc will feel about doing another round of Budesonide since I just finished a round May 30th. Thanks.

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lylii | @lylii | 5 days ago

I have lymphocytic colitis. After treatment, I didn't have symptoms for several years. I thought it could be cured and so it was cured. Nope. It flared up again, and now I have symptoms and am back on budesonide. My GI doc told me it is just something I will always have.

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debhammel | @debhammel | 5 days ago
In reply to @szelisk "@debhammel, I am in your position. Budesonide doesn't really work, and I feel miserable on it...." + (show)
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@debhammel, I am in your position. Budesonide doesn't really work, and I feel miserable on it. I've been on it at least 5 times and always relapsed. After switching GI physicians, I found out I had Pancreatic Enzyme Insufficiency as well. The MD wanted to try Budesonide one more time, 6 mgs a day for 6 months. It stopped the explosive diarrhea, but again I'm miserable. Whenever I eat, I the food just stays in my small intestine. Then it will take a couple of days to have a bowel movement. Not normal, but sludge-like. To be honest, I would rather go back to the explosive. I didn't have as much pain in my back, and I feel like I'm 9 months pregnant all the time. I go back in a couple of weeks; however, I'm sure I will relapse as soon as I get off.

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@szelisk I have EPI as well so understand your experience. It’s hard to tell which condition is causing the problem.

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szelisk | @szelisk | 5 days ago
In reply to @debhammel "@szelisk I have EPI as well so understand your experience. It’s hard to tell which condition..." + (show)
Profile picture for debhammel @debhammel

@szelisk I have EPI as well so understand your experience. It’s hard to tell which condition is causing the problem.

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@debhammel Yep. Unfortunately, these issues are affecting my potassium. I'm not sure if I mentioned I also have Celiac. Last fall, I had to have a potassium IV in the ED since it dropped so low. This might sound crazy, but I would take the diarrhea over the Budesonide effects. 🙁

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