I'm trying to decide on whether or not to have Jpouch surgery and I am having an extremely difficult time trying to decide whether or not I should have Jpouch surgery.
So my question to all, and hopefully you can assist...Where can I find more information to help me make my decision?
The other people on here gave great advise on the websites http://www.j-pouch.org
and the ostomies forum here on this site. I am in the same boat as you...trying to decide whether or not to have the surgery. I have been advised by several docs now to have it. My GI doc had never really brought it up to me in the past, at least until I was hospitalized last month. Apparently the flex sig I had in the hospital showed that my disease has progressed, and my usual treatment with steroids was not working. His method of approaching the subject of surgery was to tell me that he had patients that said they wish they had the surgery done earlier in life, and some patients that said they wish they held onto their colon longer...and then he went on to say that the decision has to be totally up to me. So, he then referred me to a general surgeon to talk to him. I saw him yesterday. He recommended surgery to me for several reasons: 1. my age. He said I"m "young" (woo hoo) and with every year I have UC , my cancer risk goes up. 2. my diabetes. Steroids and the inflammation raises my blood sugar. 3. My options for med therapy is limited. I have already tried so many UC meds, and the fact that they haven't been controlling the flares or not tolerated well, that surgery would be the next step. 4. the biopsy results from my flex sig in the hospital. It was showing possible dysplasia. and finally, 5. The fact that I"m proving to be prednisone-dependant. The steroids are very bad on your whole body, so it would benefit me to not have to take the darn stuff anymore. So, now he's referring me to a colo-rectal surgeon that does the surgery laparscopically. I don't know how much of that would apply to you, but I think getting a second or even third opinion would benefit you as well. I am seriously considering getting it done, but still have so much more research to do, and hearing from those that have had it done. I've been visiting the forums listed above as well... I wish you lots of luck on finding the decision thats right for you.
40 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).
Diagnosed with L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05.
Remicade infusions ~ Nov. 2007, 6-MP 100mg daily, Pentasa 500mg twice a day, prednisone taper 20mg daily, Nexium 40mg twice a day, Lantus insulin 45 units daily, Novolog 10 units with sliding scale at meals, Amaryl 2mg daily, multi-vitamin daily, and Calcium daily.