I wanted to see if any other "J-pouchers" on here have experienced clinical J-pouch failure? I have had my J-pouch for about 4 years, and am suffering from increasing and frequent episodes of pouchitis and related problems. After careful and deep consideration, my docs and I have concluded that the J-pouch is a failure. Although it is not life threatening, it is indeed very problematic and disruptive to my life. After much research, I found that other patients have had similar problems and have reverted to a conventional ileostomy. I am 35, and don't really want to have another external appliance. I was so very happy when I had the original take-down from the colectomy, and life seemed to be great again without having an external appliance. I found that there is a newer procedure called the BCIR, or "internal continent" ileostomy. This is another form of a pouch that has a terminal stoma below the belt line. It is appealing to me as there is no appliance or "bag" to manage, as you can drain it with a catheter at your convinence. I was curious if anyone on here has had this operation, after already having a J-pouch. It seems to be a very rare operation/procedure, and it would be great to have some feedback from others who may have undergone what I am about to.
Thanks,
Adam W.

The BCIR is like the K-Pouch but with a proprietary valving system (I think that's correct). The K-Pouch has been around longer that the J-Pouch. As a matter of fact, the founder of this site and our Big Daddy is a K-Poucher. He reverted to a K-Pouch after a failed J-Pouch.

I think one of the drawbacks to the BCIR is that the procedure is only performed in a couple of areas. I think southern California is one of those areas so it's not all that far from you.

There's a K-Pouch Corner here that has lots of great information and really helpful people who can guide you through this.

Good luck with the next adventure in your life!

kathy

Hi, went from jpouch to BCIR in 2007 after having jpouch for 2.5 years, it is not an easy decision nor is the surgery, if you post on the Kpouch section you may get more response. Many favor the Kpouch over the BCIR, both work the same just different valve method. There is also a BCIR facebook page where you can talk to others who have actually gone from Jpouch. I sopke to about 20 women before having my surgery, their response was they wish they had the surgery sooner than later. I am a lot healthier now and able to do almost anything that life throws at me. Good luck with your decision.

Thank you much for the feedback. I feel fortunate that I live near a BCIR surgeon, so that part is easy. The surgery has already been approved, but I just wanted to talk to a few folks who may have gone through the J-pouch to a BCIR or K-pouch. Thus far from your feedback, it sounds like I am on the right path and I am making the right decision. I only wish perhaps I made the decision much sooner! Being a single Dad, working, and going to school makes for a busy life, and its been difficult to manage all three while putting up with the J-pouch problems. Sounds like I'll be much happier once the surgery is done! I sincerely appreciate your feedback, and will check out the other resources that you have mentioned.

Adam..there is a surgeon in clevland..Dr Remzi..he reconstructs Jpouches..(cuts the old one out and pulls a new one in..but the surgery is not guaranteed depending on your anatomy..you may want to research that instead of the BCIR

Good luck!
Drew

just curious what is considered a jpouch failure? Basically i would like to hear anyones symptoms that they experienced with this diagnoses and attempted treatments etc

Just know that you can get pouchitis with the BCIR too. That was one of the main reasons I went with the the conventional ileo. That and the fact that I wanted the option that had the highest chance of getting me back to a normal life the fastest. I felt that if I did the BCIR then that might fail and I would end up with the ileo anyway. I was just done with medical stuff and felt the ileo would give me a quick way out.

It definitely has. I was 30 when I had the ileo created and 31 1/2 when the pouch came out. I'm now 40. Never regretted the choice a day in my life. I know the bag isn't for everyone, and maybe BCIR is the choice for you, but just be sure you know all the possible complications of that choice (or any choice for that matter). I felt that if I had pouchitis in the j-pouch, why wouldn't I get it in the BCIR resevoir?

pouch failure here!
pouch is too large with a long limb. So basically the outgoing part of the pouch can't straighten to fully empty. And the top of the pouch collapses on itself when trying to empty. So it can never empty all the way.. leading to permanant and unresolvable pouchitis.. despite any and all antibiotics. About seven months of hell post takedown.. this was finally diagnosed correctly by the CC gurus. They immediately disconnected the pouch and put me back to a temporary ileo so I could regain a bit of my health and weight. Lots of issues with that right now, but still better than with the pouch connected.

I realize this is an old thread but it's the same subject. Liz11 couldn't have described better what I've suspected for years. I've managed to avoid surgery by irrigating my pouch frequently throughout the day with a catheter and large syringe. But that's not working so well anymore and the situation is now serious. I know I need to have surgery again. It's been almost 20 years since my last 'remodel'. I had surgery originally at UCLA in 1990. I was forty then, but now I'm 60 and don't want to fool around. I'm extremely active with work/travel.

I know of one colo-rectal surgeon here in L.A., near Cedars Sinai, but wonder if I should contact CC. I'd rather travel there and be certain than throw the dice on someone who may not have had as much experience.

Any advice would be really comforting and helpful.
Thanks,
Gary

don't mess around. go straight to CC. they know their jpouch stuff. And they have lots of practice fixing us jpouch problem people. First time I was in Dr. Shen's office he had seen people from israel, arizona, florida, and penn... that same day. All people with problems that other docs created or couldn't solve. And all of the patients including myself, had been unnecesarily suffering while under the care of other doctors. Don't waste more quality of life... get on a plane to CC.

Thanks for your reply and confirmation of what I have been thinking. Flying to Ohio is definitely not a problem when I consider the alternative possibilities.

Is Dr. Shen the surgeon I should contact?
Gary