Jennifer's Story
Jennifer, Age 15
Hi, I am Jennifer and I am fifteen years old. I was just diagnosed with Crohn's Disease this year from a colonoscopy. I have had four surgeries in all. My first surgery was just a year ago when I just turned fourteen. I knew something was wrong, because I felt pain in my bottom, and was getting a fever or two. So, we consulted my primary doctor, and he said it's most likely a pulled muscle ( I dance so he thought I pulled it during that ), and to put bengay on it. So, I did this is, but it was getting worse to the point where it was hurting me to sit.
I remember it very well, because I was actually going to cancel my fourteenth birthday party. Center stage came out -I am a ballet fanatic, and wanted to see it so I went on with the party. I went on for a week with the fever on and off, and the bengay. It was getting worse so my Mom took me to the emergency room the last day of school. The doctor there looked up the sheet and said ," Yea it's a pulled muscle". So, I went to school that day and I couldn't sit at all. I just about made it through the day. A week went buy the pain came and went and so did the fevers. My Mom finally said," We need to go back to the Emergency Room this is not right. We did, and I had to lean myself over a chair for two hours. Finally I got called in and this time the doctor requested a rectal exam. This isn't a fun exam at all. So, they performed one and he said," I believe she has an abscess". He said," You should take these antibiotics and consult the surgeon just In case it doesn't go away." We went
home and I took the horrible crushed up pills until I got to the point where I couldn't eat without it coming up.
It was the day to see the surgeon and I was so sick I didn't want to go. I was dragged out of the house barely able to move. The surgeon said I needed emergency surgery, and that I had a peri-rectal abscess the size of a lemon. An abscess is a pocket full of bacteria. One more day and the abscess would have burst and then I would really be in trouble. The pain got so unbearable that they gave me the morphine and started the IV in the emergency room. I was scared about the surgery, and didn't know if I was going to live or die! It was time now they said as they wheeled me down. The tears started to run down my face as they injected the the stuff that makes you sleep into my arm. Then they said the words breath in with the mask over my face. When I woke up I felt better, but still in some pain. A day went by as they told me they had to remove my packing. This is the worst thing that has ever happened to me it's like they're pulling fire out of you. Once that was done I was sore for a while, but went home three days later. I was put on liquid medications and recovered. I started to get very loose bowels every day, but ignored it. I finally got worried after it didn't go away for two weeks and decided to tell my Mom. She said she would talk to the surgeon about it when we went to my appointment that day. He recommended us to the only GI doctor where I live. So, we went and he recommended I get a bunch of tests. Well, needless to say I refused. BIG MISTAKE!
So, a couple of months past I started ninth grade had a pretty normal life again until I saw some blood in my stools. I freaked and so did my Mom. We called the surgeon and he said if it didn't go away in a couple of days then come back to see him. It did go away, and I didn't go back to see him. In April I started to get the pain back in dance. I waited awhile to see if it was a pulled muscle, but it didn't go away. So, we went to the surgeon and he said indeed I had two rectal abscess and they needed draining. So, there again I got that done this time I was there for just the day, and stayed on some medication some more. The surgeon recommendedI go back to the Pediatric GI so we did. He said I really needed a colonoscopy ASAP to see why I am feeling this way and getting these abscesses. So, I did and he said I had Crohn's Disease and inflammation in my ileum and all through my intestines. He put me on Pentasa 12 pills a day. Well, two days later the pain came back again, and this time we didn't wait we called the GI doctor and he said I should get a cat-scan of my pelvis. Two abscesses and one fistula was found. Again, he said I needed surgery so again I had it. This time they hooked me on a morphine pump and I OD on it and got very sick. My eyes were rolling in the back of my head and I was out of it. They finally got me back to somewhat a normal person, and I went home. The pain went for a few days but came back. The doctor gave me Tylenol with codeine for it.
This got old real soon. My parents were having doubts with this doctor and they didn't understand why I was getting these things. Needless to say neither did my doctor. My dad contacted Duke University, and asked who is the best doctor in Florida. They directed us right to Jackson Memorial in Miami which is an hour and a half away. So, we went down there and the doctor changed my medications. He said," that I should be on antibiotics and not pentasa". So, I went on the medications, but was not getting any better. I had a really bad flare up. The doctor recommended that I was to come down there and be admitted. They started me on steroids which I was totally against and still am, but they said it's the fastest so I took it. They also gave me bunches of antibiotics IV except my veins were blowing left and right. Fourteen IV's in ten days, and they also tried two picklines. My Mom insists I take the pills crushed, but at that stage I was in a mood where no one could help. So, finally she said I would go home if I took it. I wanted to leave. So, I took the medication that night and went home the next day. Right now I am trying to get in remission, but still getting constant flare ups every now and then. I take prednisone. As well as I am on imuran, and zantac 75 and some others. I really want people to get to know this disease and help out kids with IBD- CROHN'S and ULCERATIVE COLITIS! We really need a cure and need to live normal lives.
Written by Jen, Sept. 2001

Jennifer