I had so many tests done: so much blood work, CAT scans, the barium. It was pretty overwhelming. What I did was I’d try to distract myself. When they’d come in and tell me that they were going to do a test, I’d try to get my mind onto something else. That would usually help, but there is not a lot you can do to take all the fear or worry away. I would get on the phone with someone or play a game with my parents. It’s best to distract yourself.
Focus
Crohn’s disease is obviously a very large part of me, but focusing on it isn’t going to change a whole lot. I focus on doing things and hanging out with friends and having a good time. I love life, and it works right now, and it’s really fun. Everything is good.
Adjustment
It’s important not to get stressed out. Stress aggravates IBD a little bit, and it doesn’t help, so it is important to not get too stressed out about things like school or the SATs. I try to keep everyday stresses in the back of my mind. Make sure you’re not pushing yourself too hard. If I had to do it all over again, I would not go to school everyday. Don’t push yourself too hard. Understand, and be knowledgeable, about the disease you have. Even the little things you need to change do make a big difference. In the back of my mind, I always ask, “Do I have my medicine?” or, “Is there going to be a bathroom around in case I have a problem?” It’s definitely an adjustment– it definitely takes adjusting to be able to talk about embarrassing things that you weren’t talking about before.
Stress and Control
I’m a pretty high strung person; I get stressed out really easily and that doesn’t help my Crohn’s. So I made a decision to go to college in Ohio at a really small school where it is not competitive and more laid back than my high school used to be. That’s helped me a lot. In college I have been able to do pretty much everything I wanted to do. I would say Crohn’s didn’t interfere with stuff I was pretty much able usually to do my normal activities. But it has taken away some of my control for example, I can’t always choose what I want to eat. And sometimes you just have bad days. During high school I would always flare up during the spring and lose the control of being able to do as well in school as I’d want or lose my ability to do everything I was able to do before as well as I was able to before. Sometimes you have to take a step back and adjust stuff to make it work, but you can usually make it work if you think hard enough about it.
Stress and Getting Stressed Out
The most stressful part of my Crohn’s was finding out that I had it. At first, I didn’t know what it was, but I knew it probably had to do with my stomach since my stomach really hurt. When your stomach really, really hurts, you just want it to go away. All of the stomach pain was on top of my chronic headaches; at that time my headache was taking priority over everything. But in the background, when the headache started to decrease, I felt this huge flaming, stabbing pain it’s like a mixture of everything in my stomach. Finding out that all of this pain was a certain, known disease, and that it would be there for the rest of my life, was a little stressful, even though I know it’s only there during flare ups and it might only hurt once in a while. But the thing is, there are pills that can help you with it, and you need to have courage, stand up, and try not to get stressed out. You’ll have the stress, but just don’t get stressed out. And when you have pain, do not get stressed. It will go away. That’s pretty much the big thing about this. Because if you get stressed, it will add on to the pain in your stomach. Believe me, I went through that a lot of times. I don’t like admitting it, but it’s pretty much the truth. If you get stressed, it will just make everything worse. Just try to make sure that you’re not stressed out and get your mind off it, either by watching television, which your parents might not like, or by reading a book, which parents usually like. I find television helps. If you’re a parent, try to calm your kid down, and if you’re a kid, don’t get stressed. Maybe even think of your IBD as a good thing. I could probably be a doctor now with all the things I know!
People to Talk To
Act like you’re in control of it. If you saw me on the street you would say I look normal. I look fine; nobody would know that I have Crohn’s disease. Most of the time I try to forget that I have it. But it’s nice to know there are people you can talk to; it’s nice to have a support network. An outlet or a hobby helps too, in terms of being comfortable. A really good technique for me was having people to talk to. But maybe it doesn’t come out as, “This is what happened as a result of Crohn’s disease today;” maybe it comes out as something entirely different.
Psycho-ologists
I got a lot of support from my family, but what I really liked was having a psychiatrist to talk to. I always used to call them ‘psycho ologists’ because I always thought that only mental people went there. But it really helped, actually, to have someone other than my family to talk to. I learned ways to cope and things like that, and I think it really helped. Just try to think of your psychiatrist as a new best friend that you just can talk to openly. And talking to your psychiatrist may help lessen your stress; you might not feel so much like the world might be against you. I had a few of those feelings, but that’s pretty much all from one word: stress.
Crohn’s Community
I think it is absolutely key to reach out to other people who have similar conditions. I have friends who I tell everything, but even my closest friends don’t fully understand my Crohn’s. Occasionally, one of them will see an article and think of me and send it to me, but they can never keep track. There are people I’ve been friends with for six years and will still say, “Here, have a piece of bread.” It’s been four years since I last touched bread. But I’ve met a lot of really wonderful people through the Crohn’s community, both on the web and in person. It’s really good to have people to talk to, because you can really vent to them and they understand. It helps your stress. So try to have other people who understand what you’re going through and with whom who you don’t have to break everything down. You can throw around terms like “upper GI,” “colonoscopy,” “IBD” and the names of medicines and they know what you’re talking about. It’s one of the things that you can get from Crohn’s. Crohn’s takes a lot away from you, but you can also get a lot from it