Charlene 
Charlene's Story
Charlene, Age 11
On May 15th, 2008, I was diagnosed with Crohn's disease. This story is about my life as a Crohnie and how my treatments are going. Stuff like that...read all about me!!
My story began a few months ago, before I even realized I was sick. Very slowly, I began to experience the symptoms of Crohn's disease. They came on slowly but I found ways to deal with them pretty much so they didn't really seem like a big deal. I was using the bathroom a lot and I was in there for a long time, and I wasn't eating enough and I was losing weight. Between November of last year and May of this year I lost fifteen pounds, and I really started to look way too thin.
It wasn't until I almost fainted at school one Monday that we realized I was sick. My mom took me to the doctor and we told her that I was losing weight and wasn't eating. We thought I had an eating disorder, but my mom also told the doctor that we weren't sure. My mom also thought that maybe I had something wrong with my intestinal tract and that maybe that's why I wasn't eating. She told the doctor that I would sometimes cry out in my sleep from my stomach cramps and run to the bathroom half asleep and in a hurry. So, my doctor ordered some blood work and other lab tests. The blood work showed that I was anemic (my number was like an 8 and it was supposed to be like an eleven). I started to take iron supplements. Then, when my mom tried to collect a stool sample for the lab, all that she saw in the container was blood. That's when she knew for sure that I was really sick. So, my mom got on the phone and my doctor called up to Albany Medical Center and two days later I saw Dr. Betzhold and he admitted me right away to the Pediatrics unit at the Children's Hospital.
When I was admitted to the hospital I was really sick. I had a fever and I was throwing up and I was SO tired. First I had to have a colonoscopy and an endoscopy. They are tests where they look inside your body and take pictures. That's how they found out I had Crohn's disease. The next thing I had was a blood transfusion, since I'd lost too much blood. It wasn't my fault, they kept coming and taking blood out of me. I mean, c'mon people. They put me on medicine and all I could eat was clear liquids and we waited for the bleeding to stop. But it didn't, no matter how much food I did or didn't eat. My fever went away, and I stopped vomiting and began to feel less liking sleeping all the time, and I got my appetite back, but the bleeding kept happening. So, then they tried a new medicine, Remicade. That's where we are now. I hope it works, I want to go home.
I went home on June 2nd, finally! I graduated from fifth grade at the end of June. I was absent from school for 27 days out of a possible 46 the last quarter of school. Wow.
On August 17 and I started having my first flare up. I was not feeling well. So, we called the doctor and I had a dose of Remicade earlier than I was supposed to...the doctor is hoped to turn things around. We saw the doctor a couple of days later to see how my lab results were. I wasn't eating much and was losing weight again. And I was bleeding again, too. My blood count was going down. I just didn't want to end up in the hospital again.
September 1st! School starts in two days. I ended up having a colonoscopy after my last dose of Remicade because I really wasn't getting much better, so the doctor wanted to take a look. He didn't really like what he saw and said I had some pretty big ulcers on my colon. So, he I had another dose of Remicade to double it up, and now I'll be having a double dose of Remicade (10 mg/per kilogram of body weight) every 6 weeks, instead of 8. I feel a lot better...no rectal bleeding or diarrhea. We went to my school and met with the principal, the vice principal, and my guidance counselor a couple of weeks ago. I have an "any time" bathroom pass and if I'm not feeling up to it, I don't have to take gym. I got to see where all the bathrooms are, since this is a new building to me, and now all of the adults in the office know me. I'm glad school is starting. It'll be fun. I wonder if I'll miss school much this year.