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Living with an Ostomy: A Personal Journey

Summary & Participants

A young woman with inflammatory bowel disease describes her life after having an ostomy.

Medically Reviewed On: July 23, 2008

Webcast Transcript

ANNOUNCER: Alexis S., Lexie to her friends, is a 24-year-old nursing student in New York City. She's known her way around hospitals and clinics and doctors offices for a long time. She's had inflammatory bowel disease since she was four.

ALEXIS S.: It was the summer of '87 and I was just running to the bathroom all the time. I don't remember it, really, but my mom and aunt said that they just couldn't get over how I'd go, and then twenty minutes later, I'd say, "I have to go again." And then it got more watery and more frequent and bloodier, so my mom finally took me to the doctor.

ANNOUNCER: Alexis was diagnosed with ulcerative colitis. Standard therapy with immunomodulators never fully controlled her flare-ups.

ALEXIS S.: Bloody diarrhea continued more and more, as the years went on, and I stopped gained weight, and I stopped growing. So they kept adding more medications. I was put on steroids a few times and antibiotics and lots of different vitamins and stuff because I was becoming anemic. I knew every bathroom on the road from my apartment on 75th Street all the way up to Riverdale where I went to school. I could tell you where the bathrooms were. School was weird; kids would ask me why I was always going to the bathroom, and why I could go without permission and they would always have to raise their hand.

ANNOUNCER: Finally, doctors told Lexie's parents she needed surgery. Her parents sought second and third opinions. They were all the same.

THOMAS A. ULLMAN, MD: Surgery is oftentimes required really to get that durable remission that's needed. Kids lose too much time from school with multiple hospitalizations, with side effects of therapy, even with doctor visits as well. And, oftentimes, surgery is really a meaningful therapy and has to be used.

ALEXIS S.: I visited with my doctor and he told me that I was going to have a bag and the only thing that I thought of was like a Ziploc bag or a sandwich bag; I had no idea what that meant.

THOMAS A. ULLMAN, MD: So the surgery that Alexis underwent is something called a subtotal colectomy with the placement of an ileostomy. What that really means is that the colon, to the extent that it can be removed, usually with a little bit of rectum left behind, is removed from the patient, and a loop of or a segment of small intestine is brought out across the abdominal wall and what's called a stoma is then created. And then the fecal flow is then across this area on the abdominal wall and captured by an appliance.

ALEXIS S.: I remember looking at my ostomy for the first time, and more than the stoma or anything, I noticed like the railroad tracks from the staples, looked like railroad tracks to me. And then there were sutures around my stoma. I wasn't afraid to look at it. An ostomy nurse helped me change it the first few times there.

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