Pouch excision

I only had mine a little over two years before having it removed. So I don't think I qualify for information.

But I was one who breezed through the process.

Didn't have it long so it did t have time to attach or develop scar tissue or whatever it may do over 25 years.

But I can say I don't regret it.

Richard.

That's great! I've thought about this for years.  Thank you, Richard!

It sounds like you have an untreated stricture and untreated pouch inflammation. Have I got that right? Anyone would feel terrible with just one of those. If possible I’d suggest trying to make major decisions about your pouch when it’s being properly attended to. In any case, I hope you feel better and have good luck with whatever decision you make.

Thank you, Scott.  My GI mentioned Entyvio, depending on the results of the biopsies.
it’s interesting that when I take Cirpro, I feel better.  I’m wondering about SIBO.  Could that cause inflammation?  She seemed cool to the idea of pursuing it.

Hi Joey, sorry to hear of all your issues.  I had my jpouch removed after about 24 yrs.  I was 62-ish.  Had it disconnected first, due to a septic abscess and fistulas, and then a yr. later had it removed.  There were a couple setbacks, such as an ileus, but I recovered sooner than I had expected.  I've been with my ileostomy since '17 (revised in '18 with the removal).  Things are now good, I have no regrets.  I had it done at the Cleveland Clinic.  I sorta recorded my removal on this discussion:  https://www.j-pouch.org/topic/...al-date-and-time-set.  You may find others' experiences on that same ostomy forum.  Best of luck, and if you'd like to ask any questions, I'd be happy to try to answer.

She’s also very anti, antibiotics!  

n/a, thank you!  I will watch your video.  
i will surely reach out to you as things move along. Take care.

Joey, if you feel better on Cipro then IMO you should be on Cipro. It’s not a perfect medication, but it’s served me well for 14 years of continuous use. With it I live a comfortable and unrestricted life, including activities like scuba diving and kayaking. Without Cipro I would be incontinent and perhaps considering pouch excision. If my doctor were too narrow-minded to understand that trade-off then I would find a new doctor.

I had my J pouch for 30 years and needed to have it removed due to recurrent high grade dysplasia and a cancerous polyp in the anal canal.  I had a second opinion at a major medical center and the surgeon said I was a high surgical risk and recommended an ileostomy, that I strongly did not want due to its associated issues.  I was turned down by two leading continent pouch surgeons, but accepted by a third to get a BCIR.  The surgery took several hours longer than normal due to the presence of many adhesions and was successful.  I was 68 at the time of surgery and have now had the BCIR for 9 years with no problems. The article I published in The Phoenix magazine should be of interest.  Its link is:  https://secureservercdn.net/19...chingMyOptions-1.pdf  Please feel free to message me if you have any questions.

Thank you, Bill.  I appreciate your time and information.  

Hey Joey it really sounds like your new GI is on top of things and probably has some good suggestions for trying to address your pouch issues rather than just taking it out.  I have ongoing inflammation and strictures, and it isn’t fun sometimes, but all in all I have a very normal life with my pouch.  I’m on Entyvio to keep inflammation under control, and do a 2x/year dilation with a balloon scope/pouchoscopy.  I’d encourage you to try out some options , especially as you’ve seen benefit from other meds like Cipro.  I bet you could see a lot of relief with some management.

Thank you!  I'm trying to be positive.

If Cipro makes you feel better, but doc doesn't want to prescribe long term because of black box warnings, it might be worth asking about Rifaximin.  Unlike other antibiotics it isn't systemically absorbed. So if it works, you can stay on it without worrying about side effects. It is expensive; my first prescriptions were filled through a specialty pharmacy with no co-pay, though. And now I am ordering through a Canadian pharmacy at a tolerable cost (thanks to a tip from a member in this site.)

Thank you!  I’ve used Xifaxan but it isn’t as effective as Cipro.