After 3 Crohn’s Disease Surgeries, I’m Finally in Remission

As a child, I had stomachaches that were so bad I couldnt move. I spent months in pain while doctors tried to figure out what was wrong. First they told me I had the stomach flu and then lactose intolerance. My brother grew up with epilepsy, so my parents knew what it was like to have a sick child, but I was supposed to be the healthy one. Now I was lying down all the time, screaming in pain, and no one could figure out the reason why.

I spent a long time watching my diet—certain foods would really bother me—and trying different medications. Finally, a pediatric gastroenterologist performed a colonoscopy, which confirmed that I had Crohns disease. I was 11 years old.

Afterward, I took medication and continued to watch what I ate, but I still couldnt gain weight, no matter what I did. In middle school I started to get much worse, probably due to stress; at the time, my brother was undergoing brain surgery. I couldnt eat much and I would sleep all the time.

A perforated colon

Then in my freshman year of high school, on April 25, 2005, I woke up in the morning screaming in pain. Somehow I managed to get myself under control, and my mother called a gastroenterologist. Every bump in the road on the way to the doctors office made me scream.

When I got there, the doctor pushed on my stomach and I almost fell off the table because of the unbearable pain. It turned out I had a perforated colon and needed emergency surgery.

They told me I had a gallon of waste floating in my body, and it was poisoning my internal organs. I had to get a temporary colostomy because my intestine was so diseased it was the only way to save my life since I was so near death. The doctors knew at that point that I did not have a mild case of Crohns disease.

I got back to school weeks later, when there was only a month left of my freshman year. Because of the corticosteroids and water retention, I looked completely different—even my friends didnt recognize me. The same kids who had called me an anorexic when I was underweight now called me “chipmunk cheeks.”

I realized then that I had worked so hard to get back to normal, but that Crohns had a major effect on what my “normal” would be.

My weight changes made things difficult in other ways. My mom had to keep buying me new clothes and get the old ones tailored as my weight fluctuated. At one point, the cleaner asked my mother how many daughters she had because we had so many clothes altered.

I felt older than my peers
During my sophomore year, I had surgery a second time. It went well, but a few days after I left the hospital I started getting high fevers and sleeping a lot. My parents took me back to the hospital and it turned out that I had multiple infections in my blood and colon. I was in the hospital for 32 days.

After I recovered, I had to redefine my friendships and catch up with my schoolwork all over again. I felt like I had to grow up more quickly than my peers. They worried about having a cold or the flu, while I had survived intestinal surgery and life-threatening infections.

During the summer before my freshman year of high school in 2004, I was denied restroom access at a retail store in Chicago. That experience prompted my mother and I to help write legislation with State Representative Kathy Ryg. The legislation, which was called Allys Law, was passed in 2005 and offers public restroom access for anyone with a medical emergency. That same year, I had surgery a third time to remove part of my colon due to scar tissue from the second surgery.

Since then, I have been in remission. Now that I am in remission, I enjoy every day as it comes. I have to because I dont know when the Crohns will become active again. Remission is the greatest gift you can get, but you always wonder when the disease will reappear and it will be taken away from you.

I know when I am sick I cant do as much, so I sometimes tend to go overboard in pursuing my goals when I am feeling well. However, I realized early on that I had to be my own advocate; my parents are loving and supportive, but they cant always be there. Now, Im politically active, speaking publicly about the issues that affect people with inflammatory bowel disease, and Im part of the Crohns and Colitis Foundation of Americas Leadership Council. Im also trying to start a support group for people with digestive issues at my school, Lake Forest College, in Lake Forest, Ill.

So many people with Crohns disease dont talk about it—because of the symptoms and what it does to you, many people choose to be silent. But if you dont discuss it, you cant get help. By meeting others who have it, I hope I can encourage students to open up about it and get the support they need.