Hi Kadet, I had UC for about 18 years when the dysplasia turned to cancer, necessitating the surgery. If your doc thinks you're a jpouch candidate, it's worth trying that first, rather than jumping into the permanent ileo. You can choose perm ileo if the pouch doesn't work out, but if you go perm ileo, you can't go back to a pouch (I don't think). Let us know how your appointment goes and I wish you the best of luck!

Hi Kadet,
I was amazed to read your story as it mirrors mine almost exactly! I, too, only had UC for a short time and like you, tried all medications which failed. I finally made my decision when I lost about 80 pounds, couldn't eat, sleep, or participate in my children's lives. I know how difficult this decision is...I wish you luck and am here if you would like to pm me with more specific questions.

There are also these other great posts with people asking the same question as you (I know I asked it). I think making the decision was so much harder than actually doing/recovering from the surgery.

http://ucstory.wordpress.com/2008/06/19/most-faqs-optional-surgery/

Oh, and there is this incredible video about making the decision for surgery, and it addresses much of what I went through:

http://ucstory.wordpress.com/2008/06/20/video-uc-to-j-pouch/

You should watch this, it is really well done and only about 7 mins long.

Thank you Mark & megan for your links, I will check them out.

I meet with the surgeon next Friday. I will know more then about when my surgery will be.

I had ulcerative colitis for 20 years. I was able to get pregnant and have my precious son during a period of remission, when I was able to be completely off medication. Then, when he was just a year old, I had a horrible flare-up that no medicine could fix, and ended up in the hospital for 10 days. My little boy took his first steps while I was in the hospital and I said, that's it, I've had enough. This is no way to live.

So that's what pushed me to finally have the surgery, and I'm so glad that I did it. I only wish I'd done it sooner.

The recovery from the first surgery was tough. I was very tired, but I got through it and have never regretted it.

Right now, I'm about 3 weeks post-takedown, and life is almost back to normal. I feel good, I'm off drugs, and I'm getting used to the new system. Experimenting with diet, Imodium, and Metamucil, in order to minimize trips to the bathroom.

So, that's my story. What made me finally have the surgery was that I wanted a good life for myself, my son, and my husband. And now I have it.

I wish you good luck in your search for answers. I suspect that you already know what you want to do. Once you make that decision, keep coming back to the site for lots of good advice and, just as important, caring support.

I started my post, but must have hit the wrong key. Anyway I AM sorry for all you are suffering. My experience: I had initial bout of UC at age 49. (I'm convinced quitting smoking was a causative factor.) I never had another flare up, but I continued to take my gastroenterologist's advice and had a yearly, routine colonoscopy. Everything was always fine and then 10 years after my diagnosis, it wasn't. I had precancerous dysplasia throughout my colon. The recommendations (I had a second opinion at UF medical center) was removal of my colon. I chose to have J-pouch and I've not been sorry. But I do have pouchitis on and off, and even when there is no infection, it doesn't work like a real colon. I was forced to retire from classroom teaching. There are daily difficulties: multiple trips to the john, usually in clusters. In between I can do just about anything, but as soon as I eat, I must find a bathroom. There is the occasional accident. We traveled extensively by RV after I retired, which was perfect. My very own bathroom was always with me. Now that we no longer have the RV, travel is scary, and I've found I really prefer to stay home. So there are limitations, but life is sweet nevertheless. Most of the time I feel well and have learned to manage. The alternative for me was cancer and death. I am nearly 69 now with a loving husband and 3 precious grandchildren. My surgeon told me at the time that my age was against me. You are younger and will probably fare better. Hope this helps.