- Joined
- Apr 2, 2009
- Messages
- 365
Since I've been around for a little bit now, I figured I'd share my story. I was first diagnosed with Crohn's almost a decade ago, and I was only nine years old at the time, so I could be remembering things a little wrong or out of order. Also sorry I made it so long. I hope that doesn't deter readers. But anyway, the story goes something like this:
In the late winter or early spring of 1999, I came down with strep throat. My pediatrician just gives me some antibiotics, and things should be good, right? But for some reason the stupid infection kept coming back. Funnily enough, no one could guess why the strep throat was making my stomach bother me more than my throat; I was plagued more with stomach pain and nausea than I was with a sore throat. Anyway, we must have tried five different antibiotics. It got to a point that my pediatrician said, "One more chance. If you come back to me with strep again, your tonsils are coming out."
My stomach was still bothering me though, so I was obviously expecting the worst when I made my return trip to the doctor. Surprisingly enough, I tested negative for strep this time though. My stomach problems must just be from the antibiotics. Once I finished those, I was to be all better, said the doctor.
But even after I was finished with the antibiotics, I continued to get worse. Very frequent bathroom trips and abdominal pain. The symptoms always got worse at night. I remember one night, my parents were watching Tim Burton's Sleepy Hollow. I woke up in the middle of it and just randomly barfed. Must have ruined the film for them. I felt even worse though, this one time when I barfed in the movie theater. Just randomly. Without warning. My mom took me to see The X-Files: Fight the Future with her. She was a fan of the show, and she must have been so excited to go see the movie. And then I ruined it for her, haha.
I had my share of embarrassing situations before I learned to better control my body's urges, but I won't get into the rest of them.
Anyway, my parents were rather baffled by the continuing symptoms. We went back to my pediatrician at least once a week, I think. And he just didn't know what to think either. He ordered tons of blood work all the time. I remember them just taking tube after tube of my blood. I'm surprised I never passed out. Some of his diagnostic suggestions were pretty scary. I mean, he suggested cystic fibrosis, all kinds of weird stuff. Looking back now, this must have been as scary an experience for my parents as it was for me.
Anyway, the months were rolling along, and I just kept getting worse. Joint pain. No appetite. Waking up with the chills in the middle of the night. Running a constant fever. Bathroom 20 times a day. I remember staying home from school and playing the original Super Smash Bros. on my N64, as well as The Legend of Zelda: The Ocarina of Time. I missed like, months of school by this point.
Anyway, I don't really know why my pediatrician waited for me to get so bad before referring me to a GI. He kept trying diagnosis after diagnosis, but none of them fit. By the time I finally started seeing an actual GI, I was just wasting away. I didn't really eat anymore, and I would just like, randomly vomit up bile. I remember them trying some outpatient diagnostic imaging, like a barium swallow. That stuff was gross. Anyway, it must have been pretty inconclusive, because I couldn't down the barium gunk. I also recall my GI doing the lubed finger up my butt test, and being like, "blood lol" and I'm like, "duh lol, I'm in pain" So here it is, like June, and they finally decide to admit me to the hospital, at least so I can get some IV nutrition.
Since I was in the hospital, my doctor decided to do a colonoscopy and an upper endoscopy. The preparation was gross. I swear Fleet Phospho soda is just Dead Sea water or something. Bleh. Anyway, we finally got our answer after that. My GI said that the inflammation was really extensive -- all throughout my esophagus and stomach all the way through to my anus. With a diagnosis in hand, I could finally start treatment.
At this point in my life, I couldn't swallow pills yet. That made things fun. I opened up Pentasa capsules and put the contents on top of jello so that I could take them. The liquid pepcid tasted like soap. I started off on sixty mg of pred, which didn't actually taste that bad. But of course, the pred gave me the worst moon face, and I gained a lot of weight, all right before starting a new school for the fourth grade, which made the transition quite difficult.
But at least I'm feeling better, right? At some point in the year that followed, after I finally learned to swallow pills, they put me on 6MP to try and maintain my remission. I also started to take remicade when I was ~ 10 or 11.
I didn't really have another bad flare up until I was in eighth grade. Now I'm 14 years old. I don't recall this flare being as painful for me physically, as it was emotionally and psychologically. Kids in middle school are a-holes. I got made fun of a lot for gaining weight from the pred, and my best friends just kinda abandoned me. Kind of scarred me psychologically I think, because now I'm really shy and I have a difficult time making friends.
Left me entering high school alone and depressed. Freshman year, I ditched a lot of school just because I was so lonely and it was depressing. I started taking antidepressants though, and that helped things a bit. It never actually got easier for me to make friends though, and even as a senior in high school now, I still find things a bit lonely; I've missed a lot of school, which I think has alienated me from my peers a bit. I'm that kid who's always absent. But getting involved in things like the track team and getting a part time job definitely helped a little. I definitely learned that the key to depression is to get out there and do something -- anything really. It's that unhealthy, lazy, "I don't feel like doing anything" feeling that you need to fight in order to win against depression.
Anyway, I was fortunate enough to enter high school with my health back. Sometime during high school, my GI took me off the 6MP because she read some study that said weird things could happen if you took it while on remicade.
And here I am now, a senior in high school. Eighteen years old. And flaring again. A combination of things have made this a pretty long, dragged out flare. I think I first started to notice a lot of symptoms bothering me more than they usually do in October or November. The whole college application process and those damn SAT subject tests really stressed me out. That, in combination with the loss of the 6MP and the dwindling effectiveness of the Remicade all added up. (After all, by this point I've been on remicade for at least seven years. Couldn't last forever, I suppose.)
I somehow managed to juggle my twenty hour work week and all my school work in spite of things. Mind you, I stayed home from school a lot, and just did my school work at home. This infuriated my teachers to no end. I think they were really pissed off that I could pull off good grades without actually being in class. So they just made my grades worse by giving me zeros for the presentations that I missed. Eff you, teachers. <_<
Anyway, I was able to keep that up until around the end of January. Then there were just some really stressful days at work, where I basically had to go in and run the front end of the store by myself because so many people called out from a snow storm. And there were midterms (Which, I aced in spite of things, by the way. Take that, teachers.). Eventually it just came to a point where I was in a lot of pain again, I was losing a lot of weight, and I just couldn't handle it all anymore. I got medical leave from work, and a home tutor for school.
Treatment wise this time, my doctor tried cipro and flagyl first, but they didn't do much. Then she put me on prednisone, which does something, but only in high doses. She did a colonoscopy last week, and she was like "Woah lots of inflammation even though you took pred lol. Guess the remicade isn't doing anything." And I was like, "could have told you that without shoving a camera up my butt" only I didn't actually tell her that because she's nice. So now I'm pretty much at square one -- off the pred, in pain and bleh. And it's been going on for months, so I'm bored. I miss work and my paycheck. I'm due to start Cimzia soon, so hopefully that'll do something, right? Here's to hoping for a remission -- I'm gonna need it, because I'm commuting to school in the fall for my first semester of college. Which I need to buy a car to do, but I can't buy one because I haven't been working for months because I've been sick. I really hope this all works out. =X
Anyway, so here I am. Sorry if this was a drag to read. I complain a lot. I know I could be a lot worse off. And sorry if there's typos. I'm too lazy to go back and reread that monster, especially, since it might make me think twice about posting the thing at all. Sorry I don't post much. I type out replies a lot, but then don't actually hit the submit button because of my stupid social paranoia and neuroses. Glad to be a part of this community with you all.
In the late winter or early spring of 1999, I came down with strep throat. My pediatrician just gives me some antibiotics, and things should be good, right? But for some reason the stupid infection kept coming back. Funnily enough, no one could guess why the strep throat was making my stomach bother me more than my throat; I was plagued more with stomach pain and nausea than I was with a sore throat. Anyway, we must have tried five different antibiotics. It got to a point that my pediatrician said, "One more chance. If you come back to me with strep again, your tonsils are coming out."
My stomach was still bothering me though, so I was obviously expecting the worst when I made my return trip to the doctor. Surprisingly enough, I tested negative for strep this time though. My stomach problems must just be from the antibiotics. Once I finished those, I was to be all better, said the doctor.
But even after I was finished with the antibiotics, I continued to get worse. Very frequent bathroom trips and abdominal pain. The symptoms always got worse at night. I remember one night, my parents were watching Tim Burton's Sleepy Hollow. I woke up in the middle of it and just randomly barfed. Must have ruined the film for them. I felt even worse though, this one time when I barfed in the movie theater. Just randomly. Without warning. My mom took me to see The X-Files: Fight the Future with her. She was a fan of the show, and she must have been so excited to go see the movie. And then I ruined it for her, haha.
I had my share of embarrassing situations before I learned to better control my body's urges, but I won't get into the rest of them.Anyway, my parents were rather baffled by the continuing symptoms. We went back to my pediatrician at least once a week, I think. And he just didn't know what to think either. He ordered tons of blood work all the time. I remember them just taking tube after tube of my blood. I'm surprised I never passed out. Some of his diagnostic suggestions were pretty scary. I mean, he suggested cystic fibrosis, all kinds of weird stuff. Looking back now, this must have been as scary an experience for my parents as it was for me.
Anyway, the months were rolling along, and I just kept getting worse. Joint pain. No appetite. Waking up with the chills in the middle of the night. Running a constant fever. Bathroom 20 times a day. I remember staying home from school and playing the original Super Smash Bros. on my N64, as well as The Legend of Zelda: The Ocarina of Time. I missed like, months of school by this point.
Anyway, I don't really know why my pediatrician waited for me to get so bad before referring me to a GI. He kept trying diagnosis after diagnosis, but none of them fit. By the time I finally started seeing an actual GI, I was just wasting away. I didn't really eat anymore, and I would just like, randomly vomit up bile. I remember them trying some outpatient diagnostic imaging, like a barium swallow. That stuff was gross. Anyway, it must have been pretty inconclusive, because I couldn't down the barium gunk. I also recall my GI doing the lubed finger up my butt test, and being like, "blood lol" and I'm like, "duh lol, I'm in pain
" So here it is, like June, and they finally decide to admit me to the hospital, at least so I can get some IV nutrition. Since I was in the hospital, my doctor decided to do a colonoscopy and an upper endoscopy. The preparation was gross. I swear Fleet Phospho soda is just Dead Sea water or something. Bleh. Anyway, we finally got our answer after that. My GI said that the inflammation was really extensive -- all throughout my esophagus and stomach all the way through to my anus. With a diagnosis in hand, I could finally start treatment.
At this point in my life, I couldn't swallow pills yet. That made things fun. I opened up Pentasa capsules and put the contents on top of jello so that I could take them.
The liquid pepcid tasted like soap. I started off on sixty mg of pred, which didn't actually taste that bad. But of course, the pred gave me the worst moon face, and I gained a lot of weight, all right before starting a new school for the fourth grade, which made the transition quite difficult. But at least I'm feeling better, right? At some point in the year that followed, after I finally learned to swallow pills, they put me on 6MP to try and maintain my remission. I also started to take remicade when I was ~ 10 or 11.
I didn't really have another bad flare up until I was in eighth grade. Now I'm 14 years old. I don't recall this flare being as painful for me physically, as it was emotionally and psychologically. Kids in middle school are a-holes. I got made fun of a lot for gaining weight from the pred, and my best friends just kinda abandoned me. Kind of scarred me psychologically I think, because now I'm really shy and I have a difficult time making friends.
Left me entering high school alone and depressed. Freshman year, I ditched a lot of school just because I was so lonely and it was depressing. I started taking antidepressants though, and that helped things a bit. It never actually got easier for me to make friends though, and even as a senior in high school now, I still find things a bit lonely; I've missed a lot of school, which I think has alienated me from my peers a bit. I'm that kid who's always absent. But getting involved in things like the track team and getting a part time job definitely helped a little. I definitely learned that the key to depression is to get out there and do something -- anything really. It's that unhealthy, lazy, "I don't feel like doing anything" feeling that you need to fight in order to win against depression.
Anyway, I was fortunate enough to enter high school with my health back. Sometime during high school, my GI took me off the 6MP because she read some study that said weird things could happen if you took it while on remicade.
And here I am now, a senior in high school. Eighteen years old. And flaring again. A combination of things have made this a pretty long, dragged out flare. I think I first started to notice a lot of symptoms bothering me more than they usually do in October or November. The whole college application process and those damn SAT subject tests really stressed me out. That, in combination with the loss of the 6MP and the dwindling effectiveness of the Remicade all added up. (After all, by this point I've been on remicade for at least seven years. Couldn't last forever, I suppose.)
I somehow managed to juggle my twenty hour work week and all my school work in spite of things. Mind you, I stayed home from school a lot, and just did my school work at home. This infuriated my teachers to no end. I think they were really pissed off that I could pull off good grades without actually being in class. So they just made my grades worse by giving me zeros for the presentations that I missed. Eff you, teachers. <_<
Anyway, I was able to keep that up until around the end of January. Then there were just some really stressful days at work, where I basically had to go in and run the front end of the store by myself because so many people called out from a snow storm. And there were midterms (Which, I aced in spite of things, by the way. Take that, teachers.). Eventually it just came to a point where I was in a lot of pain again, I was losing a lot of weight, and I just couldn't handle it all anymore. I got medical leave from work, and a home tutor for school.
Treatment wise this time, my doctor tried cipro and flagyl first, but they didn't do much. Then she put me on prednisone, which does something, but only in high doses. She did a colonoscopy last week, and she was like "Woah lots of inflammation even though you took pred lol. Guess the remicade isn't doing anything." And I was like, "could have told you that without shoving a camera up my butt" only I didn't actually tell her that because she's nice. So now I'm pretty much at square one -- off the pred, in pain and bleh. And it's been going on for months, so I'm bored. I miss work and my paycheck. I'm due to start Cimzia soon, so hopefully that'll do something, right? Here's to hoping for a remission -- I'm gonna need it, because I'm commuting to school in the fall for my first semester of college. Which I need to buy a car to do, but I can't buy one because I haven't been working for months because I've been sick. I really hope this all works out. =X
Anyway, so here I am. Sorry if this was a drag to read. I complain a lot. I know I could be a lot worse off. And sorry if there's typos. I'm too lazy to go back and reread that monster, especially, since it might make me think twice about posting the thing at all. Sorry I don't post much. I type out replies a lot, but then don't actually hit the submit button because of my stupid social paranoia and neuroses. Glad to be a part of this community with you all.
