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Hi everyone!
I have had a J-Pouch for 15 years due to Ulcerative Colitis. Since then I have had 1-2 episodes of pouchitis yearly.

This past January I had pouchitis with the following symptoms, 25-30 bowel movements daily, incontinence through the nights, joint pain, ulcers in my mouth, rash on both arms (looked like eczema), extreme fatigue and abdominal swelling.

I completed 2 weeks of cipro and it helped with slowing down the bowel movements along with Incontinence at night.

However, since then I had a sigmoid and it showed ulcers at the rectum and at the join of the j-pouch surgery. My GI doctor started me on Proctofoam for 2 weeks. No change.

I am currently on 30 mg Prednisone tapering 5mg per week for a total of 6 weeks.

symptoms I am currently experiencing are, extreme abdominal swelling, cramping, water diarrhea that then can turn to more of constipation. I always feel very bloated as if my stomach is going to burst.  

Would love to hear any insight you may have on this topic. I am currently waiting for my biopsy report to return in hopes to hear if it is pouchitis or Crohns  

I have never been diagnosed with Crohns  

Thank you for all your insight!

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Hi, Jenny. The biopsies may not answer the Crohn’s question for sure (they usually don’t). The mouth sores particularly make me think of Crohn’s, though, but they also don’t prove it. The good news is that you don’t have to have a definitive diagnosis to find an effective treatment, though your patience may be tested during the search. If the prednisone (or the passage of time) gets you back to normal then you could easily resume the relative stability you’ve enjoyed for 15 years, diagnosis be damned. If that doesn’t do the job then it might be time to try one or more of the biologic medications. You’d likely need to stay on it, which is an adjustment from just treating pouchitis twice yearly. Good luck!

The pouchitis vs. Crohn's thing is basically ancient history. Recent science thinks it's a new  disease process that causes inflammation in pouches and neoterminal  ileums post J pouch surgery. Your GI should know this if he/she is paying attention to recent studies by the top people in this field.  Whether pouch inflammation is labelled pouchitis, Crohn's or "new disease process" doesn't really matter as much as whether it can be treated. You might need to be on biologics although time will tell. But focus on the treatment and not the label as the labeling process is basically something nobody fully understands at this time. And anyone who claims to give you a definitive diagnosis except to say it's inflammation probably should not be trusted.

Last edited by CTBarrister

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