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Procyon's Story

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. :)
Thanks for sharing your story, Procyon. Doesn't it feel better just to get it all off your chest???

I'm glad that you found the forum and a bunch of other people that can sympathise with how you feel. There are a bunch of people in your age range around here, so I'm sure they'll be able to offer you lots of support and advice!

Best of luck!
omg pro, that nearly left me in tears!
reason being, that could have been MY story. seriously!
only difference is it all happened to me like one year earlier (dx in jan '99 for me and u about a year later? and im 19 nowand youre 18!) and even HOW we got dx, except for me it was like- bronchitis, ear infection, bronchitis= antibiotics antibiotics ANTIBIOTICS! right?? and it allllll kept goin from there.
again--i did fourth grade with a moon face and VERY heavy for my size. thank you pred. and that year was the one that "scarred my life" per se. i mean im over it now, but i cant even explain how hard it was. but i dont need to, you know already. kids are absolute assholes about things they dont understand and us being the oddball weird looking kids- well, thats just great.
and i ALSO entered high school healthy! this is so weird! are you sure youre not me?!?!
know exactly where youre coming from with the staying home 13409813 days, doing all your work from home, STILL getting top grades, and dealing with the pissy teachers. even to the point that senior year, my english teacher issued me an ULTIMATUM (sp?). i had to attend at least 30 days of class between then end of sprink break and the last day of school in order to pass. wtf?! she was mad cause i had missed so much and had gone on the competition trip to FL with my colorguard when is "shouldve been working". my parents and i tried to fight this, but in the end i just had to suck it up and go, despite pooping for only 3 hours every morning. they just dont get it do they?
i also miss work :( was never able to handle working during school, so props to you for that! but got a job after school ended and havent been there since Nov. i find it sad when my friends complain about working. like, i WANT to go!
and you totally nailed it on the whole depression thing. "get out there and DO something." thats exactly what it is. i was really sad thru high school about the alienation feeling too. its so hard, you do get labeled as being the one whos always sick. it makes it really hard to have fun working relationships with your classmates and you end up missing out on so many social things. you know like school field trips are where you can actually have FUN and see everyones true personalitys instead of just sitting in a room together. and same for group projects and stuff. thats the stuff that im sad i missed the most.

well so sorry if i just plopped my own story on your thread here, but i just wanted to relate all this to you! we've both been there.

heres a couple thoughts:
did you and/or your parents have meetings with your high school guidance team about your school struggles? its a bit late now,youre almost done, but theres a program called the "504" where you are classified with a disability and then you can dictate what services you need from the school. extra time for assignments, tutors, ability to complete in class work AT HOME. this way the teachers cannot resist it, its coming from their superiors that they must do this for you.

also you mentioned a couple times that you ruined the movies for your parents because you threw up in the middle. hey! they are your parents and im sure the care much more about the fact that you are sick and feeling so awful than the movie! dont feel bad, i know i do that too, but i believe them when they want to put me first, you know?

annnndd super smash bros. on N64 is an AWESOME game :D

and please, i know its hard, but try to throw away your social paranoia here ok? post whatever is on your mind anywhere! joining this community is one of the best things that has ever happened in my life. there is now this network of people who totally understand, and by being able to be SO open and honest here, it made me do so in the real world! i totally "came out" to my close friends and told them all the details about my disease. we are even closer now and laugh about my butt and poop stories just like we do on here :)
and that has inspired me to be more open with everyone. a couple days ago i just described to my aunt that when i eat hash browns, little potato bits end up in my ostomy pouch. lol what?! i NEVER talked to my extended family about things before. but hey, who cares?
it feels very good to not have to hide. really
Shadycat: Actually, it did feel pretty good to write all of that down for the first time. I never really shared all that with anyone outside my family, but they got to watch the story unfold for themselves, I suppose.

Kello: Gotta say, pretty uncanny. I might be your boyclone or something. Also, I think I could have been mistaken in my math. I was diagnosed in '99 too, so I was actually eHight rather than nine -- I turned nine that October. Maybe. I dunno. My memory plays tricks on me.

I kinda wonder now if there's any correlation between a history of persistent infections, or other signs of a not-quite-functioning immune system, and the diagnosis of Crohn's in pediatric patients. Pretty weird.

But seriously. Your side of things just sounds so similar to mine. I just know exactly where you're coming from.

Anyway, my parents have had several meetings with my school's guidance department concerning a 504 plan. However, you wouldn't believe how dysfunctional my entire high school is. The place is a friggin' zoo. In spite of the meetings with my parents, my teachers as well as the school's administration really never cut me much slack. We're in April now, and my guidance counselor is still completely clueless. I'm pretty glad I'm almost done with high school though. I'm ready to move on to bigger and better things.

It's pretty funny. I still apologize to my mom to this day about ruining the X-Files for her, and she gets mad at me for apologizing, because she knows how sick I was. My parents have been pretty awesome and supportive for me. It's funny though -- now I always associate Fight the Future and Sleepy Hollow with Crohn's flares. lol.

And I'm gonna try my best to get rid of my weird social problems. You're right -- they're totally unfounded, and they're just preventing me from enjoying myself in the end. I lol'd at what you described to your aunt. I hope that I can learn to be more open like you.
Procyon said:
Also, I think I could have been mistaken in my math. I was diagnosed in '99 too, so I was actually eHight rather than nine -- I turned nine that October. Maybe. I dunno. My memory plays tricks on me.
hahah we are even twins in that aspect...for the longest time i thought i was 8 when i was dx (in january of 98), then i found some piece of paper or record or something and it was actually january of 99 when i had just turned 9. LOL!
boyclone?! lmao!

i wonder about the correlation too. since theres so much talk, especially recently, about the role that bacterial balance plays in crohns, i wonder if it was the 3 straight months of antibiotcs that did it, you know? (those 3 monts sent me into a full fledged c-diff infection, it was only after that was taken care of that they realized there was something else that had to be wrong with me).
but if thats true...then why did i have tummyaches even when i waqs little? according to mom and dad they started when i was 3-4 yrs or so and never stopped.
especially with all that talk of that strain of bacteria in milk (cant remember atm, theres a thread here somehwere....) that is thought to play a role in crohns, i feel like the antibiotics had to be responsible somehow! maybe i already had crohns, but the bacterial imbalance just sent it spiraling out of control? bah i hope they figure this all out one day, i would love to know what the deal is!

im not sure what unfounded means, but if you mean that the social problems are irrational, i wouldnt agree with that. experience tells us that sharing and being open results in awkward situations, embarrassment and sometimes ridicule. so that makes us close off and it seems easier to just be private. it just takes realizing the fact that its not worth our stress keeping a secret in order to just avoid those situations. those people arent worth it! like you just said---its just preventing you from enjoying things in the end.
not saying its easy not at ALL, im not so good at it still. but is possible!
Pen: My doc hasn't mentioned surgery yet, but you're right -- I don't really know what's left if the Cimzia doesn't work. Sorry Cimzia isn't approved there yet. It must be so frustrating for you...

Also, I have never been entirely open with my teachers or my employer about the disease. I don't really know why. I probably would have been better off being more open.

Kello: Thanks for your encouragement. :)