11 Yrs Living W/ a J-Pouch

By carolann

February 9, 2021

4 months ago I had pouchitis. Was put on Flagyl twice. To no success.

I have extreme belly noises, nausea, and explosive BM's. I have found that every 2 hrs I have to eat something, a cracker. Then the nausea stops.

When mealtime comes I take 2 bites then I am full and throw away the rest. I have lost 24lbs in 4 months.

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I am on dicyclomine 4x's times a day and vancomycin 4x's a day because I have a bacteria infection in my stool. How long is this going to take to get better?

I also have sore buttocks. I read Pepto-Bismol will help the noisy belly and a good diaper rash cream will help sore butt. Just wondered if anyone else experienced this. I've been on meds now for 10 days????

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By RHall
February 9, 2021
Hi Carolann - thanks for sharing with us! Sorry that you're experiencing pain right now. I can't speak to the sore butt experience (but others may have!). I see you recently had pouchitis. Another community member wrote about his experience with that which might be helpful perspective for you! <a href='https://inflammatoryboweldisease.net/living/dealing-with-pouchitis/' target='_blank' rel='noopener noreferrer nofollow'>https://inflammatoryboweldisease.net/living/dealing-with-pouchitis/</a> Welcome to the community and thanks for sharing your story. -Reggie (InflammatoryBowelDisease.net Team Member)
By thedancingcrohnie Moderator
February 9, 2021
Hi <inline-mention user-id="2229867" username="carolann"/> , I am so sorry you are going through this. The journey is not easy. I haven't experienced this before but as far as the soreness try doing a warm bath and using witch hazel wipes. I really hope the infection goes away. Does your doctor recommend taking probiotics to help balance your gut flora and get rid of the bad bugs? I hope you get relief soon. Sending strength your way, Elizabeth (team member)
By Sahara Fleetwood-Beresford Moderator
February 25, 2021
Hi <inline-mention user-id="2229867" username="carolann"/> . I am afraid I cannot tell you how long it will be until you feel better. I can only share with you my personal experience of pouchitis. Much like IBD, there was a lot of trial and error in my treatment, and some stopped working after working initially. In the end, I had antibiotic refractory Pouchitis, which eventually also became steroid dependent. I tried Azathioprine (Imuran) which did put me into remission for 10 months and then stopped working. Then I tried Infliximab (Remicade) which also didn't help alleviate my symptoms. I'm sorry there is not always a quick fix, but I do hope things start to pick up for you very soon! ~ Sahara (team member)

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