Hi Stevebeme and others! Back in 2008, when I was considering having a J-pouch, I went to the top team of J-pouch colorectal surgeons in Canada that I could find -- at Mt Sinai Hospital in Toronto. I had an excellent, but very arrogant, female surgeon, who shattered my dreams when she simply stated that I did not qualify for a J-pouch. She didn't explain why, except that she said I was " too old and too fat" . (I was 57 at the time and 200 lbs.) She took the decision making away from me. It wasn't her style to explain all the complications of the J-pouch to me. After being very upset for weeks, I did much research on the Internet, talking with many j-pouch recipients in England, the USA and Australia via Internet. I also found out that my surgeon had written over 60 articles about the complications with living with a J-pouch, based of 20 years of follow- up of her own patients.
So I went ahead and agreed to the permanent ileostomy operation in Sept. of 2008. As part of the post-op program at Mt Sinai, recovering patients and a social worker would meet several times a week in a group to talk about our fears and concerns. The group consisted of people with J-pouches and ileostomies, both experienced (who came to the hospital just to attend the meeting) and recently operated patients from my floor, like me. After asking many questions from the experienced J-pouch people and experienced ostomates with ileostomies, I began to realize that, in my opinion, getting a J-pouch, was like playing Russian Roulette: it worked great for some people and not at all for others (who had many infections and/or leakage.) I came to my own conclusion that if I had chosen to get a J-pouch, I would have been taking a big gamble. The social worker, the dietician, and even my hospital room mate comforted me in telling me that an permanent ileostomy had been a good choice, even if it was the doctor who had decided on my behalf. In fact, my room mate said that she had had 5 different operations in several different hospitals to correct her J-pouch, and now, at Mt Sinai, she was finally getting a permanent ileostomy.
That was back in 2008. Nine years later, I can say that my doctor made a terrific decision for me. I am free of running to the bathroom forever. Five months of the year, I go to Florida. I'm a water baby who spends hours and hours in the ocean snorkelling; and whether in the ocean or in the pool, I never worry about my bag. Last winter, I skied for the first time in 18 years; last month I ziplined the highest zipline in the province of Quebec. Although I have issues with my knees, I have never had issues with my stoma or ileostomy. Right from the start and by talking to several ostomy nurses, I found the right products to use .....so over the past 9 years, I have manged NOT to have any irritations at all. My late husband was very supportive of me getting a permanent ileostomy (he didn't want me to have any more operations) and we had no issues, or problems having enjoyable sex . (I wore a kind of tube top around my stomach to hold everything in place.) I am living life to the fullest after having suffered with UC on and off for 33 years prior to 2008. If I had a choice right now to convert to a J-pouch, I would not switch. Life is too good, just the way it is, with my pouch. Best of luck, Julie.