Fifth-grader learns to live with colitis

My name is Josh and I'm 11 years old. I'm in fifth grade and I play the trombone and piano, Pokémon, video games and hockey.

Right before my ninth birthday I got sick — very sick. It took doctors and two different hospitals five months to figure out that I have indeterminate colitis.

During that five-month period, I lost over 10 percent of my body weight and was hospitalized with dehydration. Once we got a diagnosis, I started taking medicine and I started to feel much better.

Seven months later, I got sick again; my first flare since diagnosis. During the flare we realized that I'm steroid resistant and I ended up in the hospital. I was in the hospital for three-and-a-half-weeks this time and had Remicade to get me out of the flare and out of the hospital. During my third Remicade treatment, I had an allergic reaction and we had to find a new medicine.

I am now on Humira and have been in remission since January 2014. I have been on many different types of medicine since getting sick. Many of these medicines compromise your immune system so I'm not allowed to be around sick people. I have to be careful around the kids at school and my brother and sisters if they are sick, too.

Last summer I went to Camp Oasis for the first time and it was awesome! It was great to meet other kids that have the same problems as I do. I can't wait to go back again and for someday to be a counselor there.

It's not fun having this disease, but I don't let it tell me who I am. I still get to be a kid and have fun. I hope there is a cure someday and that I never have another flare again.