J pouch failed :(

Hi Rob - I am really sorry to hear that your JPouch failed.  I bet you went through hell with the inflammation of the JPouch.  I pray that you get some relief.  Some surgeons leave the JPouch in because removing it could be tough. I would guess you could have an end ileostomy above it.  Did the surgeon worry at all about the de functioning pouch giving you problems?

Hi Doug. Thanks for the reply. No he didn’t mention any issues with the pouch left in. I had the pouch for 3 years before takedown because of covid and it sat there happily with no issues. I’m fine with the pouch staying in, I would have thought though he could seal it and I’d have an end ileostomy. Like after surgery 1 where the bowel was removed but not the rectum….in my head it’s kinda the same however I am very much not a surgical bowel expert

I wouldn’t choose a loop ileostomy as a permanent solution. I also wouldn’t press a reluctant surgeon to remove a failed J-pouch, as surgeons aren’t noted for their humility. I think you should try to find out before surgery what sort of ileostomy is planned.

I would try for an end ileostomy- or at least ask (I think you would get an end).  He would maybe close the JPouch from the top.  As for leaving the pouch in, I think it is a GREAT data point that you had the pouch inside and not hooked up with no problems for 3 years.  I got diversionary Pouchitis after 4 months between surgeries to take it down.  It made me pretty sick.  I bet you will do well.

Thanks guys. I’ll have a chat with him in the morning before surgery and see what he says. Fingers crossed!!

No loop.

End ileo.

As for the pouch staying in.

I am not educated with that at all. Mine was removed.

One peice of advice and I gave this to my surgeon and she did it. If it's possible with you. Long stoma. I don't mean like long... long. Mines about 3/4 of an inch. Maybe longer. But in my case it has worked out good.

You don't want a short stoma.

That's a discussion to take up with the surgeon.

Richard.

You are getting excellent advice here. Try to avoid a loop ileoestomy.

for the 13 weeks I had one I was miserable.

make sure you convey your feelings to the surgeon and you get what you want.

this is a lifetime decision you are making.

Hi Rob. I’m sorry that I’m late to the “party”. How are you doing?

Morning Jayda!!

yeah doing well thank you. Operation went ok and recovery has been straightforward which is a relief. I did wake up with a loop ileostomy which was a bit frustrating but apparently going back into the male pelvis to fiddle around again sealing the jpouch is very risky. however, not impossible so it’s an option if the loop is troublesome and i choose to take the risk they will do it. Just skin management close to the loop is difficult but much less annoying than feeling like my colitis has returned so definitely the right decision for me!!!

I’m so glad that everything went well and you are feeling better. Hopefully, the loop will cooperate for you (mine never did, but there’s always hope lol). Best wishes 😊