I am new to group but have had my ileostomy since December of 2003. Mine was an emergency procedure after finding out that I had thousands of polyps and some that were 9cm. Finally found out why I was having so much back pain from the pressure of those pesky polyps. FAP they said. My large intestine was removed and one foot of small intestine (to form the j-pouch) all at one time. It took about 2 weeks in the hospital and then maybe a month and a half at home. For that time at home while healing, I felt like it didn't want to live like this because there was a lot of pain and wondering about the quality of life in the future. I have had a few more times in the hospital with complications, but have managed to live a pretty normal life. You learn to control what you eat to manage your visits to the bathroom.
Every day is a learning experience and an experiment. I have recently discovered that I am highly sensitive to preservatives, but actually have been all along. I would swell up internally and have to go to ER. I thought it was an obstruction or something but they never saw anything. Now I know that what I ate the day or two before, was the cause of the swelling. Stay away from processed meats, grapes, wine, gelatin and so many foods that could cause your intestines to swell shut.
I want everyone to know that I am greatful for the j-pouch and the extended life that I have had because of it. I had great Doctors and love the life I have. I still work at 65 now and plan to enjoy retirement in a year. Plan to fish, garden and volunteer the rest of my life.