About a year ago, I began to notice a significant change in my daily routine. I became fatigued, my visits to the bathroom were more frequent, and I had daily abdominal pain.  Every day I visited the school nurse’s office with these problems. One day, I developed intestinal bleeding and my parents immediately scheduled an appointment with a specialist. This began the difficult journey that I will have to endure for the rest of my life.

            Dr. Andrew Grossman, my wonderful GI doctor from CHOP, ordered a barrage of increasingly invasive diagnostic tests. These included MRI enterography, blood tests, and eventually a combined colonoscopy-upper endoscopy. In early December 2010, as I lay in my very first hospital bed, he told me that I have Crohn’s disease involving my large and small intestine. At the time, I didn’t really know what Crohn’s disease was, nor do many people I have met since my diagnosis.

            My name is Julie. I am 13 years old and I live in South Jersey. An excellent  student, I enjoy pottery, drawing, painting, and playing the clarinet. I also love my two 16-year old cats. I have had to make many adjustments to my life since I was diagnosed with Crohn’s disease.

            For the first few months, I was put on a medication called Pentasa. I had never taken any medication before, so at first I was a little excited. As weeks droned on, I became less consistent with taking my medicine; I felt that if I did not take my medicine, I wouldn’t be sick. My defiance made me even sicker than I was before, so I was prescribed enteral therapy in addition to the Pentasa.  Starting in February, I inserted a tube through my nose into my stomach and I tried to take it out before school.  For a month I was late to school every day! I didn’t want to do this every day; I couldn’t handle it. Finally, after two days of staying home from school,  I went to school with my tube in my nose. My best friend convinced me that people won’t really care if you have a tube in your nose because your health is more important.

            I went to school – without being late – for a month until it was time for spring break. I took my tube out, and I didn’t put it back in. I could barely eat regular food because of belly pain and I didn’t take my medicine; I just wanted to be normal!  A rapid loss of 12 pounds landed me in the hospital for 8 days. In the hospital, I was put on antibiotics and steroids . My friends and family visited me, and they put a giant smile on my face! When I finally returned home, I felt good. People told me the color returned to my face! I feel stronger having conquered my first flare, and I know that I will have to deal with having a chronic disease. Now I’m on Flagyl and enteral therapy for 16 hrs a day. I have been very good with taking my medicine and I feel much more responsible.  I hope that I can continue to improve so that I can achieve remission.

If you want to send Julie and  Isabelle your well wishes please email them to swilson@ccfa.org