aboutme

I am currently 15 years old with a very confusing diagnosis. Here is my story:

In August of 1998, I was diagnosed with Ulcerative Colitis. I spent 2 months in the hospital, not able to eat or drink anything. I was on TPN, and IV prednisone and even required several blood transfusions as my blood levels were very low.

After almost 2 months of trying to get the colitis into remission, things were getting worse. It got to the point where surgery was no longer an elective thing. So on September 25, I had my very first surgery. It went well and my whole colon was removed. Biopsies came back negative for crohns disease which was great. I spent only a week in the hospital after that surgery and in that week, i was taught how to look after my new bag, which i named "bunky."

Bunky took some getting used to which is very normal but within a couple weeks, it became a part of me. Things were great for the year that I had the ileostomy for.

In august of 1999, I decided to go for the J-pouch surgery. I had it and things seemed good for the first few days except that I was in a lot of pain which is normal, after all, it's a huge surgery.

But shortly after that, we realized i was having some problems. I was very nauseated all the time and therefor, did not want to eat or drink. However, when I drank even a few sips, things went through me and into my bag (I had a loop ileostomy) within minutes. I could not come off of the IV because even being off it for 3 hours made me dehydrated.

I had a picc line inserted and was given TPN daily for nutrition. It was then discovered, that I also had a narrowing in my bowel which was causing all the nausea.

After 7 long weeks, just enough time had went by for me to have the hookup surgery so that I would no longer need the bag. The doctors decided that instead of doing it through the stoma incision, they would open up my original incision just so they could see why I was still in so much pain. They then cut out the piece of narrowed bowel, but also discovered some kind of mass. This was biopsied and 2 weeks later, I was still in hospital with problems with the NG tube draining too much and me throwing up.

The biopsies came back inconclusive. It was either something called "Inflammatory myofibroblastic pseudotumor", or scar tissue. If it was the pseudotumor, It would need to be removed. We waited it out and had a CT scan every week to check on it and for some reason, after 3 weeks, It was so small you could barely see it. I got better and the NG tube stopped draining over 3000cc's a day.

I finally went home after 3 long months in the hospital but this did not by any means turn out to be the end of my long jouney...