J-Pouch for Crohn's

I have been fighting Crohn's for about 12 years. I am 50 years old.
I have been on every drug from Asacol, Antibiotics, 6mp, Remicade, Humira, Imuran, Prednisone off/on (mostly on).
I have severe colitis since stopping Prednisone last May. I have had "other" symptoms with the colitis: severe mouth ulcers (one surgery to remove large one on my tongue), groin ulcers, joint pain, red eyes, fatigue, anemia, swelling hips, and RA. But oddly enough my small intestine seems to be fine.

Because my bowel issues have not affected my small intestine my doctor is now suggesting the J-Pouch procedure. I realize it is a cure for UC but my doctor says 80% of Crohn's see a remission after removing the infected colon. Since stopping prednisone (they were killing me) my colon is angry and I have BM 25-35 times per day with moderate to extreme pain and cramping.

My question: Is there anyone who has had the J-Pouch for Crohn's and did your disease go into remission?

If you have never had small bowel disease or fistulising/perianal disease, you are probably a suitable candidate for a j-pouch.

But I would seek out a second and even third opinion as suggested, since the J-pouch for Crohn's is still a somewhat controversial operation. All I can say is if I'd had the chance, I would have gone for it (terminal ileum involvement killed my chances of a j-pouch), but you do need to be aware the Crohn's might come back after surgery.

In this study, 71% of patients still had their j-pouch after 10 years:
www.ncbi.nlm.nih.gov/pubmed/18936574

Abstract discussing the use of the IPAA in Crohn's colitis:
www.ncbi.nlm.nih.gov/pubmed/19845173

If you don't have any rectal involvement, you could also ask about an ileorectal anastomosis (IRA). That's where you keep the rectum and hook the ileum up to it. I can only find direct comparisons between the J-pouch and the IRA for FAP patients:
www.ncbi.nlm.nih.gov/pubmed/16511903

The only bad side I can detect about having an IRA from that meta-analysis is the increased risk of rectal cancer. (But that might be due to having FAP, I dunno.) One positive from the Crohn's point of view is that the IRA would preserve more of your small bowel. The creation of the J-pouch uses about 2 feet of small bowel, which would have to go if you needed to revert to an ileostomy.

Anyway, it's just something to consider and bring up to your colorectal surgeon if interested.

Good luck with the surgery consultation.

I was there with the pain. Only steroids knocked it on the head, but staying on steroids long-term isn't a feasible treatment plan unfortunately. Anyway, surgery did get rid of my pain and it will yours, too.

Sorry that you didn't get the news you were hoping for but having a bag is not the be all and end all, even though it may feel like it right now.
Come and pop over to the ostomy forum we are all living with a bag whether permanent or temporary you will find lots of advice, support and tips to help you deal with what you are going to go through look forward to speaking to you on there Bev x

I have a jpouch, just not for chrons disease it is for FAP. How they did my was they took out the large intestine and hooked my small intestine to my stomach. So it acts like my large intestine. I'm sure that's what a jpouch is. I just have to have scopes done every 5-7 years.

Exactly dybeye....CD is known as "the cutting away disease" for that very reason...getting a resection might buy a CDer some time but at some point the CD tends to reappear usually where the resection site is over time. Using the small intestines for the jpouch is generally going to at some point have CD issues where the connection is made from what I've been told many times over the years.

Seems like the doctor who suggested you could have a j-pouch misadvised you. It isn't suitable if you have perianal disease, because with a j-pouch the anus is retained - and in Crohn's, the anus is often affected while the rectum may be spared.

Sorry about that. Hope the operation goes well, best of luck.

David have you tried taking probiotics for the mouth ulcers? They did wonders for mine, and I used to get really deep painful ridges in the roof of my mouth, first thought was that it was cancer cuz they looked so bad...probiotics cleared them and kept them at bay.

Having a bag is a major adjustment and it is finally sinking in that this is the new normal for me. There are definitely annoyances but once you get a routine down, you will be fine! I have so much more energy now. I feel like I am spending time with my family rather than spending hours in the bathroom or curled up in bed. If you have questions, you can always rely on this forum. It has helped me greatly! Best of luck!