What is wrong with my pouch? | The J-Pouch Group

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Alli Anderson

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Hello, it's been a very long time since I've posted here. I've had a pretty busy life, having two kids and trying to keep up with everything. I've had my pouch for ten yrs now and it's not been easy. It's progressively gotten worse over the last yr. I have diarrhea most days (and nights), abdo pain, bb, fatigue, anemia, low hgb needing transfusions, Iv iron infusions. I'm reaching my breaking point with this pouch. It's always been troublesome but I could manage better years ago as I had more time for self
care.
I'm trying imuran after being on Cipro/flagyl for 10 yrs. I've been told I have chronic pouchitis but my scopes are unremarkable. In fact, my gi said it looks healthy - how can this be with all the pain and suffering I've experienced? It's still unclear if I have Crohns so maybe this is the main reason I have such complications.
Im interested in hearing others' experience having reversed their pouch. I'm strongly considering this option bc I'm so tired of struggling. I need to be healthier for my kids, and for me! I want to lead a happier, healthier life.

Thank you

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LambiepieMember

Alli, are you talking about pouch removal and permanent ileo? If so, look under "Ostomy and Skin." There are several people who had this done and are sharing their experiences. I know what you're describing; I have all your symptoms, too. It's exhausting.

Alli AndersonMember

Thank you! I will post on that board.

AllyKatMember

Same here. I just had a scope and the pouch only mildly inflamed is giving me a hell load of trouble. But I can't get a doctor to reverse this mess. I've been trying for 4 years.

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