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4 replies

Ostomy or a difficult pouch? Hmmm decisions decisions

Alli AndersonAlli AndersonMember
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

Alli
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LHettiLHettiMember
Alli, I'm sorry you're at this crossroads. I too was there not long ago. My j-pouch was 15 years old, but I suffered from complex r/v fistulas. Surgery, Remicade, Flagyl/Cipro...for years! I was told I have Crohn's and my cuff was just completely shot. I had to have my rectum and j-pouch removed to solve the problem. I just had my surgery (perm ileo.) on April 25th and I'm doing so well! It's work to manage it, but I'm off medication as of right now and I'm sleeping through the night! Amazing! No pouch contents are leaking out (a big issue with r/v fistulas).

I hear you- I have two kids (just turned 6 and 3) and I wanted to be healthy for them and be happier for my hubby. I'm only 9 weeks out of this surgery, but I hope I am there! I do miss my j-pouch and flat abdomen, but I think my body was saying "take out that rectum" for a very long time. It took me a year and half to sign up for this major surgery. No regrets today!

Laura
Lynne2Lynne2Member
I'm sorry to hear about your situation. I suffered with pouchitis for more than 15 years before finally having surgery. I recently celebrated my one-year anniversary of having my j-pouch removed and a perm ileo constructed. Couldn't be happier with my decision! Wish I had done it years earlier. Still don't have a firm diagnosis of UC vs CD, but it got to the point when the diagnosis didn't matter. The darn pouch needed to get out -- even Remicade wasn't helping. I am med free and loving the freedom of not needing to worry about the issues related to pouchitis.

Good for you for researching before jumping in. I wish you well as you explore and hope you find resolution soon.
P PoucherInTOMember
Hi Alli

Boy, I can empathize with you! I'm so sorry to hear of what you are going through. Sounds very similar to what I was experiencing.

I had my j for 18 years, I'm now 34 and got rid of it Oct 2013. I have never been happier or healthier, all thanks to making the big decision to go perm ileo.

My surgeon said "when the jpouch works it works well. But, if you're even thinking of going back to the ostomy that should tell you something". Quality of life and long term health and happiness were my deciding factors.

PM me if you have any q's.

It's a tough decision, best of luck Smiler
Alli AndersonAlli AndersonMember
WOW! Thank you for your support, it means a lot to me. I'm sorry I've been so late in my reply! Today I feel well but as you all know, that changes really quickly and most of the time without warning. I've recently been trying imuran and messing with my meds really sets my pouch (and butt) on fire. I've gone back to my regular regimen of 500mg cipro and 6-8mg immodium, 2 tabs in the am and 2 tabs before bed. I can only tolerate 50mg if imuran, too nauseating. I've been on cipro for 10yrs but it's the only med that calms my "mildly inflamed" pouch. I just ordered a sample of Orabase cream from Convatec to address the dreaded bb. I'd like to feel like this for weeks or months, a constant state of health and well being, not a few days here and there. So far, I don't see myself with my pouch for much longer. Thankfully, my GI is very supportive. Again, thanks guys! Wishing all of you HEALTH and happiness

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