Crohn's and J Pouch?

Hi Everyone,

Quick version:

I have Crohn's disease and it started in July 2009. I was finally diagnosed in February 2010. I have had no success with any of the medications. By November 2011 I was down to 96lbs. and dying. I was put on an IV to be fed nutrients (TPN) and get my weight up. It got to the point where I was wearing diapers, working from home and couldn't leave the house because just standing up would cause me to have an accident. I had a second colonoscopy done to confirm the Crohn's disease in February 2012 and the doctors were still not sure if I had it. I was told I had no other option, but surgery or another drug (don't recall the name). The other drug offered has a 1 in 1000 chance of brain damage. I finally opted for the surgery to have my colon removed.

My surgery was on April 2012. I am miserable and scared I made the wrong decision. I was told I would get a confirmed diagnosis once my colon was removed and it came back as Crohn's indefinitely. From what I have been informed by both my GI doctor and my sugeon is that I do not qualify for the J Pouch surgery. I absolutely hate this Ostomy Bag and not coping with it at all. I thought I would handle it much better, especially since I'm getting my life back, but I'm not.

From the research I've done there is a 65% to 70% chance of success for a patient with Crohn's to have the J Pouch surgery done. My Crohn's was limited to my colon. Is there anyone out there who has Crohn's and had the J Pouch surgery performed?

Thanks.

Hello,

My daughter (she's only 5) had her collectomy at age 3. At the time she was diagnosed with UC but after her collectomy her pathology report came back inconclusive, and she was ultimately dx with Indeterminate colitis.
Only a year and a half later her small intestine started showing signs of Crohns. Thank goodness she never went for the jpouch. She ultimately had to have another 6 inches of her sm. intestine removed. You should definitely wait a few years before you rush into getting the jpouch and definitely seek other doctors and see what they say.
You might be setting yourself up for more surgeries and more of your bowels removed.