How Important is the Right Diagnosis for Ulcerative Colitis

by Symptom Advice on February 26, 2011

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.

Medications:

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

Sondra’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! you can Join too, click here for details

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