Now I am getting to the best part of my story, when I went into remission. After the “prednisone saga,” my doctor eventually started me on Imuran, with the plan on soon starting me on Remicade. I didn’t know anything about Remicade, except that I had to get it through a needle in my arm. I was about nine years old at this time, and the idea of an infusion was a very scary thing, but my mom and my doctor told me it would make me better.
I remember my first Remicade infusion. I was so nervous. Remicade wasn’t actually approved for children at this time and I was my nurse’s youngest patient. The results from the Remicade were amazing. I have always said and will always say that Remicade changed my life.
About a month into my treatments, I went on a beach trip with my family and friends. I had been counting my bowel movements regularly, as Crohn’s patients often do, and I realized that on that day I had only been to the bathroom twice! This may sound a little disgusting to some of you but for me, it was my miracle. Since my Crohn’s symptoms had presented themselves, I had not been to the bathroom less than four or five times a day and it was usually more like seven or eight. After about two years on the medication, I had a huge growth spurt. This was an amazing thing as some children with Crohn’s disease have their growth stunted because they are so ill.
Around this same time, I believe, news came out that the combination of Imuran and Remicade could cause T-cell lymphoma. It was a very small chance, but my doctor, like many others, decided to take me off of Imuran and continue treatment with Remicade as a mono therapy. To this day, I believe that this was a huge mistake. It is now believed that the combination may actually reduce the risk of the patient producing antibodies to Remicade, and because the chance of T-cell lymphoma is so small, most doctors have gone back to Remicade and Imuran as a combination therapy.
Remicade saved six years of my life, but after those six years were up, I began to produce antibodies. Sometimes, patients are able to continue treatment even with the antibodies. I was not. I was still very lucky to have been able to stay on Remicade for so long. I lived six, healthy, almost-normal years.
After my diagnosis, my doctor started me on Pentasa. The Pentasa didn’t seem to make a difference in my symptoms and I was continuing to lose weight and get more and more sick. Soon after, my doctor started me on Prednisone. And so the Prednisone saga began. I gained around twenty pounds that year and of course I also decided to cut my hair off into a short bob. My face was huge, which was a big difference from the skinny/sick look I had been sporting for the last few months. Basically, I looked like a chunk.
It wasn’t long before I began to be teased about the weight I had gained. After school all of the kids who were “car-riders” would sit in the hallway and wait for their moms and dads. I was one of these kids. One day, sitting in the hallway like this, all of the kids were looking at yearbooks. We had just been given our yearbooks that day so it was a pretty big deal. A boy in my class, who I have now known for years, started laughing at my picture in the yearbook. The picture was taken right in the middle of the Prednisone saga and it was only of my giant moon face. I asked the boy why he was laughing at my picture. He told me I looked like I had “chipmunk cheeks.” Of course, he was only a little kid and he didn’t know what I was going through. Nevertheless, I was devastated. I had never been made fun of for my weight before.
Not long after that day, I begged my doctor to take me off of Prednisone. I didn’t care if that meant being sick. I was not having anymore of the “chipmunk cheeks.” Little did I know, this would be the jumpstart my doctor needed to get me on the right medical track.
Everything started a long time ago when I had pneumonia over Christmas break. I was a very sick little girl and after the pneumonia I just couldn’t seem to get better. A few months down the road, I began to have symptoms similar to a stomach virus. I remember not telling my mom at first about the symptoms because I didn’t want to miss any more school. I remember the first time that I had to have blood drawn. I was so scared! My mom bought numbing cream from CVS for me to use beforehand. As it turned out, I didn’t need the numbing cream at all. It is funny now to think back on how scared I was because I have had my blood drawn hundreds of times now.
I remember my doctor telling me that I couldn’t eat bread for a while. They took me off of a lot of different foods, thinking that one of them could be the problem. Nothing was helping and it was obvious that there was a bigger problem at hand. Eventually, my doctor decided that I needed a colonoscopy. This decision actually came much quicker for me than it does for most people because my dad has Crohn’s disease so I was high risk. I was diagnosed with Crohn’s disease eleven years ago. I was seven years old and I was in the second grade. I didn’t really know what this meant for me, other than that I needed to take medicine to get better. I didn’t know how much it was going to affect my life.