I’m 55 years old, first diagnosed with Ulcerative Colitis at the age of 17. After 10 years of pain, prednisone, and poops, I opted for an S pouch, the 155th person to receive one. After going through the surgeries, the temp illiosomy and all, I was told that the surgery was done in error and that I actually had Crohn’s. Several fistulas, blockages, and opinions later, the experts changed their minds again, deciding that I had UC but encountered some complications because of the “new” surgery.
Jump forward a few decades. It is 2010 and I still have my S pouch. I get blockages and pouchitis periodically, leakage occasionally, and have made the necessary adjustments to live a productive life with altered plumbing.
Last year I developed ulcers in my pouch, spent 5 days in the hospital, and received a blood transfusion. Yesterday my Gi doc told me that he thinks I may indeed have Crohn’s Disease. Why else would I have gramulomas in a pouch made of small bowel tissue?
Does a change of diagnosis matter after all these years? I don’t think so, although I have to admit a bout of depression has taken hold. I hope to continue sharing my experiences with others, regardless of their diagnosis. We can often learn more from each other than from any so-called experts.
Not currently on any daily meds. I do take Flagyl for pouchitis. There is a rarely seen side effect of Flagyl that I am unlucky enough to have — permanent numbness in my pinky fingers. Weird, huh?
-This story was written by Sondra
I was diagnosed with UC 39 years ago, I have an S pouch, and NOW they want to change my diagnosis.