Ulcerative Colitis Tips


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How Important is the Right Diagnosis?

Hi All!

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




pouchitis, S Pouch

One Response to How Important is the Right Diagnosis?

  1. Linda February 13, 2011 at 6:11 am #

    Hi Sondra, thank you so much for sharing your story. I’m so sorry you had to go through all that, having been told back and forth for over 30 years that you have UC, no wait! we are pretty sure you have Crohn, uh, maybe we are wrong again, you have UC. No no, sorry that you had your body plumming altered dramatically, but we think we might be wrong again! wow, it’s a wonder you have had some depression! thank you again for sharing your story about having an S pouch, the ulcer, infections, etc. you are right, we can definitely learn from one another. when my son’s doctor first brought up surgery to remove his large intestine to us (he is 6 yrs), I had so many questions about him developing infections, pouchitis, etc. She made it sound like it was no big deal and that it would be his “cure” I read so many stories like yours on the internet, and a lot of other people developed these same infections and complications. then, there have been some who only had minor problems. I agree with you, after your personal experience, what is the point of a correct diagnosis right? i can tell you though, my son has UC, and though he has been very sick, and has had his round of flagyl, prednisone,a blood transfusion, etc., he has never developed any fistulas and I have only read and heard of that developing in Crohns. take care Sondra, I wish the best for you. :-) Linda

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