If Remicade had been available I probably would have tried it because I was desperate for remission and willing to try anything. I really did not want surgery. In hindsight I am grateful that Remicade wasn't available. It would have been too new of a drug to fully understand the long term effects. As it was I was worried about the long term effects of both prednisone and 6mp (6mp has since been proven safe).
It's now 7 years later and I have never looked back nor ever regretted my decision. I honestly have no idea what my frequency is, it does not seem to get in the way of my life. I am a long distance hiker (100-200) miles and don't seem to take bathroom breaks more than my peers. Most of the time I use the restroom it's because I have to urinate. However, often times the pouch empties at the same time. With a pouch there is no pain, no urgency, and no prolonged restroom visits. To empty a pouch is as quick as to urinate and most often there is no odor. I may go more often then I did with UC but I spend less time overall in the bathroom. I am also healthy!
As with any major surgery there are risks. As for this surgery the recovery is long, about one year. That's not one year of doing nothing, I returned to work 3 weeks post surgery and continued to get back to hiking. But I was fatigued in that year, had severe joint pain from pred use, and had the pouch adaption to go through. Life is not perfect with a j-pouch, or ostomy, or k-pouch, but life is so much better than living with chronic disease. If you are thinking of surgery I would recommend you get a consult from a top knotch CR surgeon who has lots of experience. Ask to speak to several of his/her pouch patients. Honestly it wasn't until I met my surgeon that I could comfortably make a decision.
Looking back, if I had known what I know today, I would have opted for surgery after the first year of my refractive flare. I sometimes get angry that I lost 2.5 years of my life being sick and taking 22 pills per day. Since surgery I have not seen my GI, or been ill. It's really amazing to be healthy.
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