Haley’s Story

I was 13 years old when I was diagnosed with severe Crohn’s disease. Back then I didn’t know too much about it and it was something that was very scary to think about. My doctor started treating me by using a steroid, prednisone. If you haven’t heard that name before, be grateful. That steroid had many physical and mental side effects that no kid should have to endure. Not only did it lower my self-esteem with the moon face, it gave me anxiety and depression. Being a 7th grader at the time, this was all a lot to handle. Along with the prednisone, my doctor put me on a few other medications, but the most important was a biologic medication given via IV. The normal dosage amount is getting infusions every 8 weeks at 5mg/kg, but with my disease, the only thing that will keep me stable is 10mg/kg every 4 weeks. Three months after my diagnosis, I was admitted into the hospital with severe symptoms. The good part was that I loved the hospital food! The doctors had me do a few more colonoscopies and endoscopies and my team finally found a few treatments that would get me through my flare along with the infliximab. Being on such a high dosage of medicine, I fear that many things can happen. The dangers of the medicine and developing antibodies is a fear I face daily. I now get my infusion (which we call my happy juice) every 4 weeks and take a few more medications to help me even more.

Having Crohn’s disease is something that is hard to go through as a teenager for many reasons. At 16 years old, I can gladly say I am in remission, but that doesn’t mean I am totally healthy. I am involved in many activities at school such as dance team and show choir, and I take some very hard AP classes, which can be very hard with a disease like mine. The difference between me and my friends at school is that they don’t have a disease fighting them every day. I am doing really well as of now, but I still face many school absences and lateness due to my disease. I have to restrict activities and classes I take at school because if I get stressed, I can easily go into a flare. My friends ask me all the time why I am always tired, or missing school, and no one understands because Crohn’s disease isn’t something you can see on the outside. Even though Crohn’s wants to stop me from being a normal teenager, I won’t let it. I still go out with friends on the weekends, and have 6 A.M dance practices every day because I refuse to let Crohn’s Disease define me. I am so grateful for the experiences I have had because of my disease, with Camp Oasis (a camp for kids with IBD) and the Take Steps walk, and I hope to experience even more. Even though I have had some amazing experiences, I don’t want any other kid to have to go through having this disease.