I, too, had j-pouch surgery 5 years ago for ulcerative colitis. I was sick for several years with chronic diarrhea and wouldn't even consider surgery. At one point in my illness I was being hospitalized for 9 days on bed rest and no food. My ninth day there a nurse with a j-pouch came to speak with me about surgery. Everything I had ever heard about this surgery and its outcome contradicted what the nurse told me. Long story short, she looked great, was able to work 10 hour days, runs marathons, and lives a full life. Meeting someone face to face who had suffered as I did and who obviously was healthy convinced me that I needed a surgical consultation. My GI was not in favor of the j-pouch surgery and I was not in favor of a permanent ileostomy. I met my surgeon who convinced me I could have a normal healthy life and I signed on for surgery.
I had the surgery and immediately could tell my UC was gone. Within in a couple months I went camping and 3 months after surgery I traveled through Europe. I did a half marathon at six months and at 2 years I hiked 200 miles across England. I am leaving shortly for a 100 mile hike through the mountains of Scotland. My point is that you will get your life back and begin to experience things that you may not have had an opportunity to since you have struggled with CI for so long. Your surgery will not be as drastic as the j-pouch and you should lead a much improved life. The best advice I can give you is to make a consultation with a CR surgeon and ask him/her if they have any CI patients you can speak with. Talking one on one with patients who have been through this is far more enlightening than any information a doctor can give you. All my best for your improved health.
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free