Deciding on J-Pouch

Hey Grace,

Sending strength across the pond to you.  I'm not going to recommend which direction you go -- that will be an outcome of your research and all the other factors you evaluate so as to make a fully informed decision.

My only point is that these 'boards' do tend to portray the negative side of the j-pouch surgery.  I've had mine since '86.  Has it been perfect?  Hell no, but my life with UC was far, far more challenging, both emotionally and medically, than living with the pouch.  Yes, I've had pouchitis and strictures and leakages (oh my!) but I also eat anything I want and have lived and traveled around the world -- net, I wouldn't have it any other way. 

Fertility is an issue for you that I cannot relate to ... so speak with everyone you can ... see if your GI and/or colo-rectal surgeon can set you up to talk directly to someone who had a similar decision to make.

Cheers, Michael

Grace,

Michael is right about the negative portrayal of the J Pouch here. This is a support board and people come here with problem pouches seeking advice from others who have had problem pouches. This is a small slice of J Pouches in the world and it's mostly just problem pouches. The healthy pouch people aren't here. I have had a J Pouch since 1992. I have battled pouchitis since shortly after the surgery but it's mostly been a winning battle in terms of maintaining a very good quality of life, if not completely stamping out all inflammation, which is something I have never managed to do with either antibiotics or biologics. For me the alternative would have been a permanent ileostomy which was, and is, an unacceptable alternative to me. I kind of feel like I "traded up" in diseases from UC to pouchitis, in that the pouchitis is much more manageable. So from that standpoint J pouch surgery was successful in my eyes.

With J Pouch surgery they do leave in the rectal cuff for continence purposes, and if your rectum is in bad shape, you will need to discuss this issue with your colorectal surgeon.

As far as leakages and infertility, I never experienced those issues. I occasionally - very occasionally - have some nighttime incontinence, usually towards the end of a Remicade cycle although sometimes for no apparent reason and just having a pouchitis flare. On average I would say I have maybe 1 bad day a month. Good luck with your decision.

@Grace h One surgical option is a hand-sewn procedure with complete removal of the rectal cuff. This eliminates essentially all of the colonic tissue. You might be a good candidate for that, but it comes with a couple of caveats: 1) there is a higher rate of incontinence with a hand-sewn procedure than a stapled procedure - not crazy-high if a well-qualified surgeon is doing the work, but still a consideration, and 2) the hand-sewn procedure is more difficult to perform, and most J-pouch surgeons don’t get much practice at it.

I also had active disease in my rectum when I had my surgery, and I’ve done fine with a stapled procedure. If I were choosing a hand-sewn procedure I would find a very well regarded surgeon who does plenty of them. Good luck!

It’s nice to hear of some success stories! Like you said I feel as though I only hear of the negatives, which are bad enough to put me off initially! Where I struggle with my decision is that my UC I find bearable and is something I have got used to, perhaps because i do have the ileostomy bag, But am worried by getting a Jpouch will the struggles be worse then what I face now! I really appreciate the response. Thank you.

Scott, thank you also! I haven’t heard of that being an option so something I will definitely  look into.

( I don’t know how to respond to each message individually sorry) 

I think just about everything has pros and cons with it unfortunately. I would definitely recommend the J-pouch or the ostomy. Not everyone has problems with a J-pouch.

I have had my J-pouch for almost 7 years: I never had pouchitis or any major problems with my pouch. The only problems I have had are dehydration if I do not keep up my water intake and constipation if I REALLY REALLY OVEREAT lol. SO far everything is great!

I would say take a chance, if things do not work out, at least you tried right? That is what I live by

Good luck hon! Message me anytime

Grace,

Please go to the women’s forum to look at all the women who have had successful pregnancies with a j-pouch. I cannot imagine any surgeon willing to do an IRA when you have UC, unless you never had rectal disease. If that is the case, it is less likely to be UC than Crohn’s colitis. Every person here who had an IRA had nothing but grief with it, and wound up getting a j-pouch or end ileostomy. If you are close to your childbearing years you may just want to stick with the ileostomy until you are done having kids, and have the j-pouch later. Although, I believe there are issues with that too, as the stoma can invert and there can be appliance adhesion problems with the expanding abdomen during pregnancy. I have even heard of women having their eggs frozen for future use.

Anyway, you are not alone on this. There have been many who had the same struggles with decisions.

Jan