It has been 34 years since my life-changing ileostomy surgery. I know that keeping a positive attitude helped me through the darkest days of my life. As my mom always said, “someone else has it worse than you”.
In the Fall of 1963, I was diagnosed with ulcerative colitis at age 11. At the time of my diagnosis, not many people or healthcare professionals knew much about ulcerative colitis. After spending 5 weeks in Children's Hospital of Philadelphia, I came home to deal with my new life post-diagnosis. I missed the first half of my 6th grade year, home schooled since I was still too sick to go back to classes. How was I going to go back to school and worry about the bathroom situation?
During this time, I put on a lot of weight and was very frightened of my future. Instead of becoming more independent as I got older, I became very dependent on my parents. I lived in fear of ending up back in the hospital. I found myself back in the hospital at age 16 for another stay.
In my 20's, I was very fortunate and lived a pretty normal life for someone with ulcerative colitis. I got married and had 2 miscarriages. I was taking a variety of medications and learned I was allergic to a specific ulcerative colitis medication; I did not have any other options to keep my flare ups under control.
In the Spring of 1984, I had a bad flare up precipitated by many months of stress. Despite medications and treatments, I continued to lose weight and had to take medical leave from work. After being out of work for 5 weeks, I ended up in the hospital again, this time for 3 weeks. There was no alternative but to have ileostomy surgery.
Even though I was told, I would be out of pain, I would not be running to the bathroom multiple times a day and there would be no more bleeding, I was very concerned about the outcome. I was 31 years old and married to my second husband for 2 years.
The support I received made all the difference. My husband was amazing and had my back through it all. My ostomy nurse became my dear friend. I was fitted with Convatec products and still wear them today. Following one more miscarriage, I was blessed with the most beautiful baby girl, Lauren. My dear husband passed away 17 years ago and Lauren and I had some very tough years but we made it. I enjoy speaking at hospitals through the years telling my whole story. I always felt if telling my story could encourage one person, then I made a difference.