The hardest part was when I felt all this pain and I couldn’t do anything about it. When I felt more pain, I couldn’t lie down, and I had to take baths for it to go away. The first couple of doctors that I saw over a month’s time all said that nothing was wrong with me, basically. They had no idea how bad a problem it was. I felt the worst I’d felt in my whole life, but everyone told me nothing was wrong. Even both of my brothers said that it was in my head and I was making it up, which made me mad.
I was diagnosed towards the end of my sixth grade year. Before I was diagnosed, I’d frequently feel stomach pain and sickness. I really lost my appetite, and I had some pain when I was sitting down and when I was moving, but that’s about it. At one point I was in so much pain that I was unable to really move. When we went to the emergency room, the doctors said that I had nothing wrong with me. We went to a couple of doctors. Finally, they did surgery on what was wrong, and they found out that I had IBD. I was a little stressed out and unhappy about it when I found out, but then I realized that it wasn’t such a big thing. At first, I had no idea what it was, and it sounded like a terrible thing. But after the doctors explained it to me, and I read a couple of things printed out online, it seemed a lot easier. It wasn’t as bad as I thought it would be.
I found out about a year and a half ago that I had Crohn’s. I was at school; I was sick and weak and couldn’t really do anything. I went to have blood tests and stuff and they came out like nothing was happening, but one day we did a colonoscopy and then I found out I had Crohn’s. The liquid I had to drink before the colonoscopy was horrible. I had to drink it the whole day before. The actual procedure was fine. I was glad that they found something, because then they could take care of it. Then I was on a lot of medicine, but it wasn’t that bad. I was away at boarding school, so I had to go to the doctor there. I took Prednisone, and I gained a lot of weight, because I was down to like 70 pounds. I gained enough weight to make that better. When I was first diagnosed I couldn’t do sports because I thought, “If I push myself, it’s going to hurt.” So it took me a while before I could do that, but I’m fine doing sports now, and everything else I want to do. I can’t do as much as I wanted to do like sometimes during basketball season when people are doing suicides I can’t run the whole thing without taking breaks. So it’s kind of good in some ways, but legitimate.
At first, before I went for the diagnostic tests, my symptoms were that I lost a lot of weight, I wasn’t growing, I had constant diarrhea, and anything I ate went directly through my system. And I was tired; I slept the majority of the day away. I remember thinking that the most mundane tasks were virtually impossible for me. Like how I was going to get to school, which was a couple of blocks away. How was I going to muster up the energy to walk there? I think one of the telltale signs for me, was that I have a sister who is three years younger than I am and I put on her bathing suit one summer, accidentally, because we have basically the same bathing suit. I put hers on thinking “Oh my gosh, I must have gained weight because I don’t fit into my bathing suit anymore.” I didn’t realize that I was wearing her bathing suit. So I was thirteen and she would have been nine and a half or ten. When I realized that I was wearing her bathing suit I was like, “Oh my gosh, I can fit into her bathing suit… We’re the same size!”
At first, they told me that I had appendicitis, and I was actually relieved because they told me that they could do surgery and I’d be fine. Later on, they told me that it was Crohn’s, and I was kind of shocked by that. I had heard about it before, and I was actually pretty concerned that I would get really sick and a lot worse. I was really worried. My uncle has IBD; he doesn’t have Crohn’s, but he told me about it. He’s had three operations. From the stories he’s told me, I knew what it was. It was kind of scary actually, because I was younger, and it was my first time being sick like this. There were all these doctors who were seeing me, and all of this serious stuff; it was a lot to take in. I got used to it, but at first it was a shock.
I was a little scared at first, but I’m glad it wasn’t something worse. I guess it was tough to hear that it was a chronic disease, but there could still be a cure. It was different because I’ve always been a pretty healthy kid.
How Much of My Life Will this Be?
One of the hardest parts after being diagnosed was realizing that it wasn’t going to be that easy and that I would have to go back to the doctor all the time and I would have to carefully monitor everything that I did and see if anything wasn’t working. After I was diagnosed it was really hard for me to decide how much of my life this would be. I didn’t want to define myself as being the kid with Crohn’s disease. So I would sort of just ignore it and pretend that it wasn’t really part of life at all. But at the same time it was really hard for me to recognize that I did have limits that not everyone else in my class or anyone else I knew had. Just to sort of pull back and think about myself for a minute was one of the hardest things; to make the distinction between not letting it rule my life and making sure that I still thought about it.
When I First Got Sick
When I first got really sick, it was my freshman year in high school. I felt like my stomach hurt but I went to school anyway. When I came home after school I threw up all day. I’d never been that sick– it was so bad. I had that for about a day and then all of a sudden I was fine. But then for the next month or so I was still getting stomachaches. For a while we thought, “Oh, it must be that virus I’m getting over.” I was playing lacrosse at the time, so I was really busy. But the stomachaches got worse and worse. I was at a point where I was trying to eat and ended up bending over the table with really bad cramps. So that was my experience with cramps and loss of appetite. For me it was a big deal because I love to eat, but all of a sudden I just want some mashed potatoes and bread and nothing else.
Flu that Never Got Better
I was first diagnosed with colitis in fourth grade, after about a year of having symptoms. It started out with what we thought was stomach flu, and I was put on medication. The flu never got better, but I got so used to the symptoms that I never told my mom. After a couple of months my mom saw blood in the toilet and I confessed that I had never gotten better. Whoops. We went in to the hospital to get it checked out, thus beginning my new life as a colitis patient.
In a quest to figure out why I had bloody diarrhea, cramping, and weight loss in addition to other symptoms, I went through a bunch of colonoscopies and other fun tests and met a bunch of nurses and doctors. We concluded that I had colitis, and soon after one of the doctors became my permanent gastroenterologist, who I then went in to see once a month.
Reaction to Diagnosis
Before I was diagnosed, I wasn’t feeling well for a whole week, and I didn’t really know what was going on. The next couple of weeks were when I was diagnosed and sort of figured out what was going on. It was hard at first because I didn’t really know what it meant or what would happen. It’s that uncertainty of, “Why is this happening? I’m not feeling well all the time,” and “How are they going to fix it?” It’s a strange feeling. Especially when you’re at that age when you’re normally doing everything all over the place all at once, and all of a sudden you can’t. I found out what it was, and the explanation was sort of clear to me, but it’s the shock of, “Okay, I have this disease that you can’t do anything about, really you can’t cure.” That is sort of a big issue to learn when you’re young: “Okay, so I’m going to have this forever is that what you’re telling me?” You realize what it is; they tell you what it is and what the disease means, which is great because it lets you understand it, but it doesn’t really help in telling you what your life is going to be like with it. Initially, the big fear is, “Okay, so I’m going to have this forever. What can you do for me?”