Medicine is a huge reminder that I have a chronic illness, because even though I’ve been really lucky and am not that sick, I still take eleven pills a day. And as you get to be older, you realize medicine costs money and you’re always getting letters about this and that from the insurance company and they’re switching you around. And sometimes the pharmacy messes up one type of medicine. I always go to pick them all up and they say, “Oh, we only have two of these left; you’re going to have to come back.” It’s little things like that that remind you that you’re sick. It’s like big red blaring sign that says, “You have Crohn’s disease — it’s in your life, you can’t get rid of it, and it’s going to interfere.” That’s the part of my medicines that I don’t like.
Most of the pills that you are going to have to take for your stomach you will have to swallow. When I was taking my pills, most of them were capsules, and I had to take three at a time. Now I could probably take all of my pills in one gulp. But I’ve gotten used to it over the last ten months. Last year I could not swallow pills; I was so afraid of swallowing pills. But I got into a routine where I would take a piece of bread, start chewing it, and before swallowing, pop the pill in, and then swallow.
Taking my medications was hard sometimes. It was a lot for me. Sometimes I didn’t want to take them at all. I wanted them to leave me alone, but they forced me, and there wasn’t really much I could do about it. But it was also better. There were definitely times when it was hard, but I had a lot of support, so I got through it.
I’ve been on Prednisone a lot. It has many great uses and can be really helpful, but I have a strong hatred for it. I don’t like the extreme ups and downs of it. It was especially hard when I was little, because kids feel things so acutely, so quickly and so deeply. When you’re little, you can go from extremely happy to extremely sad really quickly anyway, and with Prednisone, it’s magnified a thousand times. It was really hard, and I remember getting frustrated with things because they weren’t going right, or I was feeling really bad, or I was happy and I couldn’t express that well. Then as I got older, the other more bodily side effects were hard, like being hungry all the time and getting the moon face. No matter what, even if you limit your intake, you’ll still get a moon face, and that was hard because I was in high school. I’m not a big person, so it was hard going onto prednisone and ballooning up and then coming off of it and coming down; the extreme ups and downs were a little difficult. My friends and family were great, so that wasn’t a part of it. High school is such a defining period that, with all these things going on, it was a little difficult. But it wasn’t so bad, and it was worth it to be feeling good.
Effects of Prednisone
I hated Prednisone. I don’t really know anyone who doesn’t. I’ve always been a pretty typical size, maybe a little bit chubby. I was the skinniest I’d ever been when I got really sick. Then I gained weight on Prednisone and at the same time I started a wheat, sugar, and dairy free diet, which pretty much cuts out everything. I was really excited; I thought I was going to lose all this weight. But of course I was on Prednisone, so I managed to find stuff to eat and eat tons of it. I got really bad acne. I had really bad mood swings. There was one time at the gym when I really wanted to use this one cross trainer. I was on it and got up to get a drink of water. Somebody else got on it, and I started sobbing– I cried for like two and half hours straight. That was pretty bad.
I’m on Remicade; I used to take many pills. I took Prednisone to get my weight back up. I took something called Flagyl— some of these I have no idea what they’re for. I take calcium and vitamins. I take a 6MP pill, and a couple more that I don’t remember right now. They all ended up helping me, and they stopped the inflammation. I ended up feeling better soon after using them, so they ended up being good. I never had any side effects that I didn’t like. Since I’ve started using the Remicaid, about a year ago, I’ve grown, my weight has gone up, and I’ve had more energy, which has been really helpful. Overall, it’s great now; everything is fine, and I have no more pain. The treatment has been really successful; it’s improved how I feel and everything I do. It has helped out a lot. I want to tell other kids that even if there is no real cure for Crohn’s, if you take the medication that the doctors give you, the pain should go away, and you’ll feel much better in the future. Sometimes, I forget that I actually have Crohn’s disease until someone reminds me. Other than that, nothing has really changed. Everything is wonderful, I have no pain, and I’m able to do all the activities and sports that I want to do. It’s just great right now.
I tried a multitude of medicines. I tried Asacol, Sulfasalazine, Cipro, Flagyl, 6 MP, and all kinds of suppositories, enemas, and finally steroids. Cipro and Flagyl work for most colitis patients, but not for me, and so of all the meds I tried, steroids were the only things that cured me of my symptoms. During bad flare ups I’d go on up to as much as 40mg of steroids a day, and the side effects were awful. I had terrible mood swings, my cheeks were puffy, my growth was stunted, and I was always hungry. We were constantly trying to wean me off of the steroids, and we’d get as close as 2.5mg every other day. Then I’d just flare up again and it was back to 40mg.