Ann 
Ann's Story
Ann, Age 19
I started to get sick when I was eight.
By the time I was diagnosed at ten, I looked and felt like death, and I already had a draining recto-vaginal fistula. That fistula was quite the experience-I had to stay on the couch the night it broke through my skin because my moaning was keeping my sister awake. And finally getting diagnosed was no treat, either. I couldn't keep enough golytely down, so I had to get enemas in the hospital the night before my first colonoscopy.
They didn't have any pediatric-sized tubes, so I had a large, hard plastic tube scraping my severely inflamed rectum while I screamed all night. I still remember a very strong, tangy smell of old blood from being cleaned out. Not fun.
At any rate, the diagnosis was Crohn's disease. Medication kept things under control until I was in high school. Freshman year, the diarrhea and pain started again. I suppose Crohn's did me a favor-an abscessed fistula kept me from embarrassing myself at cheerleading tryouts by landing me in the hospital for IV antibiotics instead.
After losing about fifty-five pounds, sprouting five more new (and infected) r/v fistulae, a rectal stricture, and having the disease spread through my entire colon, severely dehydrating me, I switched back to my original doctor in my junior year. I was hospitalized and put on TPN, IV steroids, and Remicade, and the surgeon who put in my catheter later told me they didn't think I would make it. I missed two months of school recovering.
That summer, the Remicade stopped working and I spent a month either screaming or doped up on percocet due to rectal ulcerations/fistulae before having a temporary ileostomy done.
However, in February of 2000, I had to have a total proctocolectomy (and miss two more months of school) as the ulcerations were worsening and no meds were helping. I've had pyoderma gangrenosum around my stoma ever since that surgery which keeps me from getting a good seal in addition to being quite painful, and before I had my rectal wound repaired, it abscessed with a fistula (it still hasn't healed properly).
So, as it stands right now, I'm in college, and doing pretty well aside from the pyoderma, but then, I'm on pentasa, imuran, and prednisone again. If this is as good as it gets, I'll take it, but I'm still hoping for something better.
Written by Ann May 2001