Enough already!
And the Beat Goes On
Adam Prestin
Waking up from an operation gives you an idea of feeling how someone with a mental illness feels. You don't really realize you're out of it. But when you reflect on the events later with family or your doctor, you get an idea of how idiotic you must have sounded. After the endoscopy, I woke up extremely gassy, babbling on and on, the doctor talked to both my mother AND father outside of my bed. They told me every half minute I'd fart and burst out in a fit of laughter, and the noise was amplified due to the bedpan. This lasted for almost a half hour! Finally, I went back to my bed, with the IV tube still hanging out of my hand (You get used to it) and the doctor suggested I drink something with a little more energy in it. I got a nice cold pepsi, and within a minute of gulping down the cup, I was ready to leave. I was given my prescription slips and sent downstairs on a wheelchair, even though I could walk fine. We stopped off to get some greasy food from Duchess, and then headed off for my medications. I was on 40 mg prednisone daily, plus 2400mg asacol, iron, and 300mg of Zantac. I took them fine for a week, and then the side effects started, but I'll speak about them later. 

Reaction at school to my disease was mixed. I had always been skinny. I had always been gassy, as I'd mentioned previously. You really find out who is mature, who is becoming mature, and who is just plain childish by speaking about sensitive situations. My closer friends knew where the line was, but some of my newer friends joked about having a camera 'shoved up my ass.' I think they'd see things differently if it happened to them. Some didn't believe it. When I told one of my friends he thought I was joking, and another called it the disease that made me 'crap a lot.' They weren't immature, just uninformed. Others asked about what it was like, and listened when I talked about my experience. I still haven't met another friend who has the disease, though.

Prednisone. That was one thing I could relate with others about. I don't know whether its pollution, or just a natural thing, but there are a LOT of asthmatics in Connecticut. Three people I know had experience with prednisone, including two in school. After Christmas break, some people didn't recognize me, because DURING Christmas break... I ate. And boy did I eat, oatmeal, fruit, burgers, pizza ,(which I never really liked until recently) anything I could find I shoved down my throat. I went up from 100 to 110, then to 115, then finally 118. One of my teachers said the fat face was kind of cool because I didn't look as weak, even though prednisone does kind of make you weaker. My face got fat, and a Sophmore decided to nickname me 'chubby-cheeks.' I dealt with all of this quite well, and I am a sensitive person, so I did most of my crying at home. There was one time though, when I felt like I would burst out into tears in the middle of the school day. It was some time in February, and a couple of kids had been teasing me, my response to which had been to ignore them. The teacher finally asked them to stop, right in front of the class. She went on about how I'd dealt with my illness and reactions to the medication much more maturely then they had been acting. She asked them how they would feel if the same thing had happened to them. They promptly stopped. That kind of hit me hard. 

Meanwhile, school passed well. I liked my new school, and my illness couldn't bring my average down much. In fact, it started at 92 and went up to 96 by the end of winter. I had been issued an all-year hall pass which I barely used. But in the winter, I had some problems. I tried out for indoor track in December, the Thursday of the week of the endoscopy, which was on a Monday. Track is known at our school to get you in shape. It was a mistake. My bones were killing me in the cold air, I accidentally went with the distance runners instead of the sprinters, and I had a mysterious asthma-like hyperventilation fit. That really knocked me down a bit. I told the coach I'd be the team manager, which is basically an overhyped waterboy, but for some reason, I'm never motivated enough to get myself to do anything. The next day, or at least some time around then, I had a panic attack during a math test when my mind drew a complete blank. I even had to retake the test!

Things were going fine. I was being tapered off prednisone in March, and by May I had been dropped down to 2.5mg every other day. I was put on cipro twice for folliculitis, which you should pray you never get. Your scalp turns red, and all the follicles get infected and crust up. Antibiotics treat it well, though. Then, I was put on flagyl for my first fistula, but this didn't help. It gave me diarrhea, which went away after a few weeks. I had always had bad timing with my 'schedule,' and every day I'd go to the bathroom as soon as I arrived home. In late May, shortly before finals, I'd have to go during late study halls, because I didn't think I'd make it through the day. Then, during finals week, I noticed a bump just below my anus, opposite my first fistula. It went up, then down, then up again, and I knew it was going to open within the next few days. I was in pain the night of my Spanish and Algebra finals, too much pain to study. Thank God I did well on the exams anyway, and the fistula got better, at least for the rest of the week. 

But, it would return. And oh Lord did it ever. I called my doctor who suggested she look at it. It got to the point Monday night, the night before clinic, that I didn't get to sleep until 5 AM, and my mother woke me up at 7:30 AM to get ready for the 9:00AM appointment. While I was there, the fistula almost opened itself, but I was sent to a procedure room to have it drained. The surgeon had an assistant freeze my arse with a chemical. Then he cut a clean line in with a scalpel. OWWWWWWWWWWWWWWWWWWWWW!!!!!! I called the doctor a liar, because, he being a doctor, lied about there not being any pain with it frozen. I had to wear gauze pads for 3 days and take hot baths (sitz, they're called) five or six times. The next week it had begun to go down, but then I started having diarrhea, which didn't stop. Then stomach pain started and the stool frequency increased. My doctor put it off for as long as possible, but she finally put me back on prednisone, this time with Imuran. My Asacol was also increased to 3600mg a day. I take about 120 pills a week. 

Today I had a barium x-ray done. I chose flavorless because the flavoring doesn't really help. They gave me lollipops, though, and those WORK! I don't care if you are 25, 35, 45, or 55, the next time you go to get a barium x-ray, ask for lollipops. In two weeks I will be returning to clinic for a checkup and blood tests. And the story will continue... 

Bye for now. Hope that you'll write!
Bye for now 

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated:  October 18, 2004