Didn’t work for me. Lots of secretions from the detached pouch with an end ileo. Apparently in England this is the preferred way to go. Your surgeon is right in that it is a relatively simple surgery. While my life was somewhat better(no butt burn)I had trouble controlling the secretions, was on the toilet a lot and had leakage as the secretions were thin and watery. I also had bad stoma due to tension not allowing the sugeon to form a stoma that extended far enough away from the skin surface so pouching was a hassle. The excretions kept getting worse and worse, the first few weeks were great. We tried UC meds and they did nothing. Some people get results from fatty acid enemas I didn’t try those and after about 6 months I had the J pouch removed

There is a woman on the board who has Crohns and a detached J pouch and has done well. I believe she is on biologics which may be a factor.

Thanks again for your detailed response, Chiromancer.

If there's only one person who's happy with the pouch in situ versus many who were unhappy and removed it, that says something :-) ...
Have a nice week-end, Arnaud

I am only 6 weeks out from having my pouch disconnected, so hopefully things continue as they are now. But so far, I am in heaven not having that awful j pouch being used. After 23 years putting up with the pouch, the thought of the surgery involved in trying to remove it scared me to death. And my surgeon agreed with me, that leaving it alone was the best option for me at the present time. The amount of scar tissue he found inside me, reinforced this decision. The mucus can be a problem, but I have found that be using a catheter at bedtime, I can eliminate the liquids and mucus in the pouch, and generally get a good night sleep without leakage. And thats much, much better than that stupid pouch ever was. At this time, I am completely happy with my disconnected pouch, and that continues working like it has.

You might get a better responses if you post on ostomy forums like UOAA or healingwell.com. People like me with ostomies now, may not look at the j pouch site much.

Thanks for your detailed response, Mark.
Glad for you that you're happy like this !
But it makes the decision harder for me now :-) ...
Also thanks for the info about UOAA and healingwell, I'll have a look.
Cheers, Arnaud

arnaud. the disconnect jpouch surgery is not that big of a surgery (as these colorectal surgeries go) . In my case.. I was far too sick with the jpouch that both my CC gi doc and my CC surgeon insisted they do an immediate disconnect. My surgeon would not have done the jpouch removal at that time as I was far too sick. I was able to gain weight and get healthier within a few months after the disconnect surgery.

HOWEVER, I ended up with lots of problems with it disonnected, primarily.. bad bad diversionary pouchitis. Tried everything for about one year.. scfa enemas, uc drugs, you name it... Eventually I had the jpouch completely removed. Now that was one HUGE surgery.

Regardless.. if you choose the total removal.. be sure you have a very very experienced and knowledgeable surgeon. You do not want to be a guinea pig for this one!

Also there are quite a few exjpouchers on this site. ANd if I recall.. many went the route I went and others went for the immediate rip out.
good luck with your decision.

I had mine removed last August. Was a big surgery and had some issues but no regrets with having it taken out! I am doing so well without it, I wouldn't change that decision. Good luck!

The difficulty of the surgery depends in part on how much scar tissue has formed around the pouch. I was lucky in that only a small amount of scar tissue had to be cleared, so the removal took "only" 4.5 hours. Best decision I could've made under the circumstances; it gave me my life back.

Good luck!

Thanks very much for your responses, kmj and IseeUC.
They're quite reassuring and encouraging !
Cheers, A

Hey there, I'm a bit late on this topic but just letting you know I have left mine in for 4 years disconnected, and have had no problem.

Thanks Saff.
And do you still have it disconnected today or did you mean that it was fine for 4 years and then you had to have it removed ?
Also, did/do you have an end or loop ileostomy ?
It seems that the results are better with an end ...
Thanks in advance, Arnaud

HI, and thanks to all that have responded to this good question. I may face the same decision here soon, now with a loop (doing very well) and potential permanent ileo or try for the third time to go the jpouch route.

My question is, if you go to "permanent" and leave the pouch in .. can you simply opt to have it removed later if you have issues with leaking, etc.?

My pouch does secrete from time to time, but it's pretty manageable. Does it get worse? Thanks.

Yes, it can be removed as a separate surgery later on.

Jan

is it ok to continue with a loop, or is it best to go with perm end? is one better than the other? if there is any chance that i may want to hook back up again should i stay with the loop?