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Life After Ileostomy Surgery

My name is Jan Madaffri, and I am 31 years old. I only knew my husband four months before my ileostomy surgery. At that time, I had a J-pouch which was slowly failing since July 1991. In January, 1990, I received my first ileostomy due to ulcerative colitis, then later reversed to the J-pouch. I wasn’t in pain anymore from ulcerative colitis, but I was unable to control my bowel movements. This put a big damper on my social life, being a prisoner to a toilet.

When I met my husband, I only explained to him that I couldn’t control my bowel movements due to a disease when I was younger. I didn’t go into specifics about the ileostomy that I used to have. I didn’t feel it was important. How was I to know that I would again need another ileostomy later down the line? We weren’t able to go out to eat at restaurants or go to movies or clubs because my bowel movements wouldn’t allow me to be away from a toilet very long. So our dates consisted of watching a rented movie at my house so the toilet would be close by. At times, I would be in the bathroom for hours at a time, and by the time I could come back out and join him, he would be asleep on the couch. He didn’t seem to mind, but I hated losing that time to see him.

As I said, four months after we met and started dating, I needed another surgery, this time for a permanent ileostomy. I was ready to have the ostomy back; I was tired of living on the toilet. I spent my 10th through 12th grades in high school in home schooling, and I didn’t want to be a prisoner any longer. When I got home from the surgery, I was scared he would leave me once I told him what the surgery involved. I showed him a brochure that would best explain the surgery and what the ileostomy was and what it looked like. He simply said, “Okay”, and a little over two years later we were married.

He later told me that was when he realized he loved me, that it didn’t matter that I had an ileostomy, he just wanted to be with me. And now, we were able to go out in PUBLIC, and enjoy being with each other and our friends. I swim, go out to clubs to dance, and exercise. Nothing is off limits because I have an ileostomy. In fact, WITHOUT the ileostomy a lot of things WERE off-limits to me.

I DON’T LIKE TO SAY, “I DON’T WISH AN OSTOMY ON ANYONE.” Instead, I don’t wish ulcerative colitis or Crohn’s disease on anyone. Ulcerative colitis was the nightmare for me, and the best thing for me has been my ileostomy. I would still be grateful for my ileostomy even if he had left me because he couldn’t handle it. He has proven to me that there are people out there who will love you for you, and anyone who doesn’t, doesn’t deserve your love anyway.

By: Jan Madaffri, Via: stuartonline & Greater Cincinnati Chapter UOA
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