IBD Story

Claire, Age 13

My Ulcerative Colitis started in infancy. My parents were frantic to get answers that would save me from death. The medical people dismissed continual illness, not growing, diarrhea and blood in the stool on nervous parenting! I had no life. My parents did their own research and found a GI Doctor to treat me. My condition is an IBD illness called Ulcerative Colitis.

The following three years were very bad. I nearly ended up with an ileostomy and TPN feeding to prevent my malnutrition from getting worse. The UC was out of control. Claire

At the age of five I reached remission from medication, we all know it was a miracle. My memories of these years are thankfully dim. That remission lasted until I was ten years old.

When I was ten years old, the illness returned. We fought for control and calmed the flare, but a colonoscopy was needed in order to assess the damage to my intestine. I had the colonoscopy and we waited a week to hear the results. Ulcerative Colitis patients are at high risk for Colon Cancer. It was just a thought in the back of my parent's minds as a possibility but only remotely. They never pictured it could happen to me. Nevertheless, it did happen to me ....

The doctor told my mom the scope showed that I had Dysplasia, which is the early stage of Colon Cancer. The Dysplasia was growing in two parts of my colon and in my rectum.

My mind was a blur and we were all in shock. I cried a lot. We all did. We began to face the word "Cancer" and that it was in my body. What were the options to save my life?

We were told that I could have the surgery to remove the colon and rectum, or I could continue to buy time by having colonoscopies every six months to track the Dysplasia and keep ahead of cancer progression. I wanted surgery. It was my choice and my parents backed me all the way. Surgery was better than continual tests and the preparation for those tests.

The surgeon removed my colon and revised the rectal lining so we could save my ability to use the toilet normally. I got a J-Pouch, which is made using the small intestine to function as a 'fake colon' for people like me who must have it removed. The J-pouch holds the bowel waste internally and then it can leave the body through normal means with the surgical revisions. I didn't have to have an outer ostomy. Today, at age thirteen, this is what I have.

People get up tight and upset when you say cancer. It's a horrible word and it can mean many things, but the first thing that comes to mind is death. When I think of death, I think of the color black - a dead field of burned grass and circling buzzards. When I say the word cancer now, I think of life. I survived my Ulcerative Colitis illness because of this thing: Cancer.

I could go on about my surgery forever but that's not what I want to say. Unless you've had cancer, you could never understand the pain and panic I've gone through. Not even my mom or dad knows. I'm just paying my way to heaven; everyone must one way or another. However, there are people who have gone through more than I ever will. The sooner you accept what you have, the sooner you find the right treatment, the sooner you will be happy again.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." The Bible

Written by Claire, April 2001

Return From Claire's Story To Home