IBD key

purple_IBD_Crohns While I was in the hospital, I felt like I was the only person in the whole, entire world who had Crohn’s disease. And like I was the only person in the whole, entire world who Crohn’s disease had wreaked havoc on. I remember feeling alone, but I’m not, at all.


purple_IBD_Crohns Eating in the Hospital
I was in the hospital after they did surgery on a pocket of puss that I had on my perirectal abscess, just for a couple of days. I had two, the second one a couple of weeks later, and I was hospitalized again, but never for a long period of time. The abscess was what first got me diagnosed, and then the second one came not in the same place but very close. It was painful, very uncomfortable, but I had to live with it. I had trouble just doing things in the hospital. The whole time that I was there I didn’t feel good; I felt like I did before I had the surgery, but it turns out that is how I was supposed to feel. I regained my appetite, but I’d want to eat more than I could. I’d think that I could eat something, but then I’d have it all in front of me, and I’d only eat about half or a third of it.


purple_IBD_Crohns Goals While in the Hospital
It was good to have schoolwork to do in the hospital. I didn’t have to do my schoolwork while I was in the hospital. I could have waited until I got out to work on it, but it was nice having something else to focus on, a bigger goal with a bigger payoff to work toward. I also did crafts. I’m big into crafts, so my mom would bring stuff to do. We would make bookmarks, and she also does stuff with stained glass. We’d twist silver and make bracelets and stuff. It sounds really funny, but it was nice.


purple_IBD_Crohns Reminds Me I’m Sick
I know the hospital a lot better now. I didn’t like the idea of feeling sick at all; I always hated doctors and hospitals. I hated getting my blood taken, and I still do. But I think that for me, coming to the hospital has been positive and I think that’s because of my doctors. I also have a really good friend who has kidney disease, so he’s always been treated here his whole life. He’s obviously a lot sicker than I am, but it was interesting to talk with him as well, because he’s been one of the people who has been the most sensitive about my illness. I think that is because he understands what it’s like to have an illness and to have to go to the hospital and see a doctor there. But every time I come here I get upset still. It’s the frustration of just knowing it’s something I have to deal with. Coming to the hospital reminds me that I’m sick.


purple_IBD_Crohns Visitors
At Children’s, there is a room on the tenth floor some kind of game room. They had video games, stuff you could draw on, and there was this artist who came in and drew a picture of me. I definitely spent a lot of time in there, and it helped me out a lot. I also had a lot of visitors. I think that every person in my family came to visit me at one point or another, and I got a lot of visits from my friends. I got a lot of cards and gifts that was good. It made me feel good that everyone cared and was thinking about me. My uncle who lives in Boston used to visit me a lot during that time. He always tried to make me laugh and distract me. He was pretty good; it actually worked. After the surgery, my grandparents from Florida came to visit me, and I rarely get to see them. It was a great surprise when I saw them come in, so that really cheered me up.


purple_IBD_Crohns I guess it’s kind of cool that when you’re in the hospital, you don’t ever know what time of day it is. You can sleep through the middle of the afternoon or at night. The nurses are here all night; there are always people here to help you at any time. There are also activity rooms, which are fun they have Nintendo and computers. It’s nice to get visits by people, and my mother or father sleeps here, so that makes it more comfortable. I can also bring things from home, like a CD player. There are negatives to it, but there are positives too.


green_IBD_uc List of Foods
This is the first time I’ve been in the hospital since I had a colonoscopy and got diagnosed. And they starved me of food! I haven’t eaten in over three weeks. That’s been sort of tough. I made a list of foods that I miss, and I have it on the door of my room. Where I live they have really good bagels, so I put bagels, pasta, brownies, stuff like that on my list. And cheeseburgers– I really like cheeseburgers. Eggs, pizza, apple pie… All the stuff I just want. Usually I can eat whatever I want. I don’t know when they’ll let me eat again yet. So eat food before you come in stock up! I made a scrapbook too, which was kind of cool. It’s of things I want to do when I come out of here. So have fun in ways you can while you’re here.
[This is by a girl who was staying in the hospital after having surgery on her colon.]


green_IBD_uc My surgeries
For a period of about four years I was stuck in an endless cycle. I’d go in to see my doctor and she’d ask me the same question: “Blood?” “Yep.” Rarely would the answer be no. Finally, the September of my eighth grade year, we went to talk to a surgeon. I wasn’t scared at all; frankly I wondered why we hadn’t thought about an operation before. When I asked my parents, they said they wanted to make sure we tried all of the other options first; they had wanted surgery to be the last resort. I still didn’t understand why we couldn’t have gone directly to the operation and why we had to try out so many medicines that didn’t work first. Now I know why: if I had had to go through those operations before the age of thirteen I wouldn’t have been able to handle them. My surgeon was a very funny, sweet guy, which made the whole idea of having operations much easier to grasp.

During my first operation, my brother was with me right until I went into the operating room. After the first couple of days spent in medicated la la land after the surgery, I finally came out of it and saw my mom, dad and brother, and also my sister, who had flown in from Canada to be there with me. Not only did she make me a care package filled with cool color changing nail polish, but she also took me trick or treating around the hospital on Halloween. Trick or treating at a hospital would have been totally sweet apart from the fact that nobody hands out candy since the trick or treaters can’t eat it. So I dressed up as a mouse, which allowed me to stay in my pajamas, and walked around the hospital receiving some lovely pencils and stickers. Hospitals are pretty boring the rest of the time, but luckily my family was around to play games with me and keep me company.

During the first operation they made what’s called a J pouch out of a part of my small intestine, and removed the whole colon. To allow all of the stitches inside to heal required my small intestine to lead out of my hip through a stoma, which I named Freddie. Now comes the worst part. The things that came out of this stoma went into a bag attached to my hip, and this bag had to be emptied. Not only that, but I had to figure out how to keep the bag a secret from all of my classmates for three months. My mom and I went out and bought baggy clothes to help hide it, and every day I prayed that no one would bump into me or notice it somehow. I was also petrified that the bag would leak or rip somehow, especially during gym, despite the reassurances I got from the nurses. At the time I didn’t tell any of my friends about the pouch. I probably should have, because I imagine it would have made things a lot easier. In any case, I managed to get through it and, as promised, those three months of my life are now just a faint memory.

My second surgery wasn’t nearly as enjoyable as my first one because now that I knew what to expect from an operation I didn’t want to go through it again. They connected me nonetheless, but my recovery wasn’t nearly as quick as after the first operation. However, there was a bonus: I now had two scars on my stomach, one of which goes around my belly button and is named Harry Potter. I’d like to say that that’s the end of my story and that Harry and I lived medicine and colitis free for the rest of our days, but that would be a lie. I soon got colitis symptoms once again, only now they are termed pouchitis since I don’t have a colon. I was put back on meds, and even retried ones that we had long since established had no effect on me. I am now in 10th grade, still have pouchitis, and– big surprise– am on the only medication that works for me: steroids. Sometimes I get extremely frustrated and it feels like I went through those operations for nothing, but that’s not true and I am much better off because of my surgeries.