Hi there, I'm a new member too, and have a permanent ileostomy. The top surgeon for J pouches in Canada said that I was at risk for J pouch, but never really disclosed why in detail. She has a reputation for being a non-communicator and very arrogant -- but an outstanding surgeon! She said I was "too old and too fat". That's all as explanation. I was about 200 lbs and 57 years old and extremely upset that she refused to do a J-pouch on me. I had spent the past 3 years communicating with people around the world with J-pouches and was convinced that I wanted one.
After the bad news, my husband and I found, online, 72 published articles written by my doctor, an expert on J pouches, about "Post Op complications of the J-pouch," based on her 20-year follow-up study on all the patients she had created J pouches for in her career. We could not access these articles, as they were written for other doctors. Although we didn't know what the risks would be, my husband convinced me to listen to this expert's advice. "She has to know what she's talking about," he said. Plus, my husband said he couldn't stand going through another operation with me. (Each time I went into surgery for something, the docs had trouble bringing me back to my normal levels -- thus I would spend an excessive amount of time in the recovery room. My husband was terrified during each past surgery that I wouldn't wake up.) So I consented to a permanent ileostomy.
As part of the recovery at Mt. Sinai Hosp. in Toronto, you meet up for discussion groups with a social worker and current and former ostomates and J-pouch people. After having had several discussion sessions over the 11-day period of my recovery at the hospital, I realized....and this is only MY opinion........... that getting a J-pouch is like playing Russian Roulette. There was a middle-aged lady who had 100% success with her J-pouch. But there was also a 22-year-old man, who was so shy and introverted and said that he had to room alone at college because he had to wear a diaper at night and didn't want anyone on campus knowing about that. He believed that he'd had a diaper for life. My roommate was someone who had had a J-pouch, tons of infections, and after 5 corrective operations was finally put back on a permanent ileostomy. She kept saying, "You should be grateful to your doctor....she saved you 5 operations, and lots of complications!"
So my bottom line is: 1.) Ask your surgeon about the risks. He/she should disclose, 100%, all your risks, so that you can make an informed decision. 2.) There is at least 1 or 2 forums for people with permanent and temporary ileostomies on Facebook. Reversals, their successes and complications are all discussed in detail there! Many people in the group are like you, trying to decide what to do. And those who are thrilled with their reversals and those not so thrilled, all talk about their experiences on those Facebook forums.
Between your doctor, these forums, and your family, you should be able to make the most educated decision. Best of luck. Julie
