HealingWell
Search Close Search
☰

J-Pouch...anyone have one?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/8/2009 9:39 PM (GMT 0)
Hey all...I have Crohn's disease and normally post in there but was wondering...does anyone in here happen to have a J-pouch? I had my colonoscopy and it's still active Crohn's in the colon . My. GI has me doing Rowasa and I have a Remicade infusion Monday but if that doesn't get rid of it by my next scope sometime in November my GI says he expects the surgeon will take the colon out and give me a J-Pouch. I've read on it a bit and it seems much preferable to having a bag full-time and what not. Does anyone here have one and have any tips..or warnings or just anything about it? I was kind of under the impression that they didn't do it for CD because it can return elsewhere. But anything anyone here knows would be helpful thanks :)
Posted 10/8/2009 9:45 PM (GMT 0)
Most people here have UC and have not had surgery. There is a site for learning about jpouches, jpouch.org. you should be able to find tons of info there about experiences. I thought they didn't do jpouch for Chrons for the reason you said. I hope you get better and don't need surgery.
Posted 10/8/2009 9:57 PM (GMT 0)

firemedic said...
HI was kind of under the impression that they didn't do it for CD because it can return elsewhere.

That's what I was told too. I would be good to seek a second opinion and talk to the people on the JPouch forum. It would be a bummer if you got surgery, only for it to return elsewhere.
Posted 10/8/2009 10:16 PM (GMT 0)
for what it's worth, a surgeon told me the same thing- they won't do a jpouch with Crohn's. I have an rv fistula, & my diagnosis is UC- but to a surgeon, the presence of a fistula signifies Crohns. So no surgeon will do a jpouch on me- I'm ok with a bag if it comes to that. But yeah, the jpouch.org site is probably your best bet for this question.
Posted 10/8/2009 10:34 PM (GMT 0)
But I think there are folks on the Crohn's board who have j-pouches. I think they do take it out if it's diseased enough that medication won't help reduce symptoms and the person is experiencing pretty severe symptoms, or if they've got a lot of damage from strictures and other things that CD folks get that we don't.
Posted 10/8/2009 11:16 PM (GMT 0)
Yeah that's what happened to me. I had a flare up and got more medicine and then got hospitalized for 7 days and looooads of medicne there. And then more after I got out and it just wouldn't go away this time. So now I have the temp. ileostomy and hope to get it reversed or something soon. I posted this question on the ostomy forum and the crohn's forum...pretty much everyone everywhere said to go somewhere else. I also went to the J-pouch site and that seems pretty helpful too. Thanks all. I guess I'll just see what happens.
Posted 10/9/2009 12:03 AM (GMT 0)
does temporary mean you haven't had the first surgery in the 2 step process to have a jpouch? I never understood the meaning of temporary ileostomy.
Posted 10/9/2009 1:45 AM (GMT 0)
There are not too many jpouchers on this site, you'll find more at www.j-pouch.org  I have had my jpouch for 8 years; very happy with it.  I had UC.  You will meet some people at jpouch.org who have Crohn's or Crohn's colitis that can answer your questions.

 

Sue

Posted 10/15/2009 6:16 AM (GMT 0)
Thanks alot everyone :) And notsosicklygirl...my crohn's is all in my colon ...about the last 25 or so cm. down to the rectum so they wanted to give me the ileostomy and see if , while my colon was on "vacation" it would heal itself. Then they would put everything back together in there. It hasn't yet but it improved a bit so we're trying some Rowasa and then we'll see what's going down at the end of this month.
Posted 10/15/2009 3:05 PM (GMT 0)
Temp ileo, means just that, they hook it up to a bag while the pouch gets ready to work, and or for a rest. They sometimes do jpouches on people with crohns, and sometimes they work forever and sometimes they fail after a while and they end up witha perm bag, or as unbeliveable as it may sound, sometimes people like the bag so much they just choose to go wtih that.
Check over on the ostomies board and start a post for FLchurchlady, she did exactly that, and she can give you some input on her situations.
✚ New Topic ✚ Reply