My Crohn's story
They say that most people diagnosed with Crohn’s are older, not kids. I wonder how many of us there are that were diagnosed as children.
I was eleven when I was officially diagnosed but had issues my entire life. I have a home video from when I was one and my mother was tending to me, noting that I had been sick. I spent my childhood missing school and staying at home because of my symptoms. I was so underweight that my mother described me as a stegosaurus, you could see each nodule of my spine through my skin. In the second grade, the doctors thought I had Pancreatitis.
The main symptom that I had other than loose, bloody bowel movements was that I refused to eat. (But I always thought it was because of a stomach ache. Maybe it was but it was also out of fear, I realized. I bet if I didn’t have this disease I’d not have such severe anxiety.) When I get sick or feel as though my Crohn’s symptoms are active, I go through these weird procedures to make myself comfortable and not afraid. If I couldn’t get it under control I would shake so bad that I’d make myself throw up.
We had spent my childhood dealing with doctors who would refuse to do tests because they thought it was unnecessary. I spent a lot of time sleeping and dealing with fevers, not eating, and gripping the bottom of my school desk out of abdominal pain. I honestly didn’t think anything of it. I thought that every kid got this sick this often.
One day, April 1, 2008, to be exact, my parents had enough. We were eating dinner and I was refusing to eat again. I weighed only 55 pounds at eleven years old. My mom rushed out of her chair angrily, packed an overnight bag just in case, and drove me to Children’s Hospital. I went through the usual registration for the ER, but the only reason I got admitted was for a 104-degree fever and nothing else. Through further testing, they found out that I also had a severe infection throughout my body.
On April 2, 2008, I had my first colonoscopy. I was very scared and postponed the feeding tube as long as I could. Since I refused to ingest anything, they had to put that tube down my nose. I remember not being able to talk because it tickled.
On the fourth, I was finally diagnosed and by a doctor who also had the disease! I didn’t know what any of it meant. All I knew was that I was happy to be getting on the right track.
I ended up spending two weeks in the hospital for testing. In that time I didn’t eat a single crumb of food save for one or two jellos. I also never slept. I’d watch Disney all night and pretend to be asleep when the nurses came to check on me. They’d turn the TV off and I’d turn it right back on after they left. Because of this, I can’t watch the Buzz Lightyear, Timon/Pumbaa, Brandy & Mr. Whiskers shows without hospital flashbacks!
They’d ask me what I’d want for my meals and when it’d come I’d nearly puke at the sight of food. I got a barium test done. It was awful. I couldn’t keep the contrast down so I had to keep drinking and drinking. I feel for the janitors of hospitals, for sure. I also remember using a scale with arm supports and when I went to stand, I nearly passed out. I also received a bone density test and before leaving I got a PICC Line. I had to take Prednisone, Asacol, and a few other pills, too.
When I returned to school, all the kids were curious and creeped out by my PICC. I got my fluids at night, so we’d cover it with cute socks that we cut to fit my arm through. Every time I taste saline I remember sitting in the nurse’s office every Friday to get it cleaned. The minute it came out, after three months, I waved my arms around like crazy. I was happy to be free. I also felt hungry for the first time and finished my first meal ever in my life at Eat ‘n Park.
I was able to be a Make A Wish kids a year later. I went to Disney.
Since I was diagnosed, I’d go in for regular testing. I didn’t achieve remission until I was 21. And it only lasted a year. I’m back in a flare and no medicine I try works. I don’t really know what’s next other than to up my dose some more. I moved from Asacol to Lialda a few years after I was diagnosed and that subdued symptoms for a while. Then, because I couldn’t take pills regularly, I was moved onto Humira at 18 years old. I just switched to Stelara this past June. It worked great after my infusion but waiting 8 weeks for each shot just isn’t doing it.
I’ve been pretty lucky. I haven’t had any surgeries or obstructions. I bet I’ll have one eventually.
I don’t know what the future holds, but, to be honest, I’m proud of how far I’ve come.
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