It's the Disease That's Sweeping the Nation!
Well here it is, a lengthy, four-year saga tale of my battle with Crohn's Disease.
Prelude to a Diagnosis
It all began when I was but a sweet 16 year old girl. I had been major stressed out about getting my driver's license, (although I passed in one shot baby). So after some months of stressful driving, I finally got my license in June of 1999. And I began summer school for Algebra soon afterwards. This was just to get ahead, not because I failed. Anyway, during this time I was noticing I wasn't feeling too well. I would have bad stomach pain, going to the bathroom a lot, no energy, sores in my mouth, my fingers were swelling up to the size of hotdogs, and I had a weird itchy rash on my upper legs. Now this sounds like some kind of exotic, tropical venereal disease, doesn't it? So I was freaking out, and this was going on for months! I could barely stand to eat anything. Once my mom had made baked beans, and I was trying to eat them one bean at a time because it was hurting so bad to swallow anything. So naturally when things hurt that much, and it hurts all the way through and you're going to the bathroom 7-8 times a day, you don't feel much like eating. I begain losing weight. I went from 116 to 98 lbs from June to August. By this time I was lying on the couch all day, couldn't muster the energy to do anything, and my abdomen was killing me. Finally it was time to go to a doctor. Well we couldn't get into my regular doctor so we went to someone else in his practice, who determined I was suddenly lactose intolerant and told me to lay off anything with milk. This was in the last week of July I guess since I had band camp the next week. So I shipped off to camp, and the whole week I ate nothing but dry roasted peanuts and wheat things. I didn't have to go to the bathroom much but I wasn't eating hardly anything. Then we decided this doc was a nut because I was not eating any milk and wasn't getting any better at all. I believe then I tried to get an appointment with my regular doctor who said he thought it was be best for me to go to Children's Hospital for a Peds Gastroenterologist. So we got a referral and went up there. First thing I knew I was getting all these tests done, because no one could figure out what was going on. I was freaking out again, I thought I had cancer or something. I mean before this I was the healthiest kid you would ever meet, I rarely got a cold or anything, and now this! I had an endoscopy/colonoscopy, and an upper GI. I swear I thought I was going to die when they were doing the upper GI just because all the techs and my parents looked so serious, I thought they were going to tell me about the cancer in my stomach and how I was going to die on a tuesday. But they just dropped the Crohn's Disease bombshell on me. Of course I had never heard of this disease before, I was still psyched out because I had no clue what was going on or what would happen next.
The Road to Recovery
Well now my problem had a name. This was in late August/early September '99. I had missed the first two days of my junior year of high school, and was a big, skinny, pale skeleton walking around. After the diagnosis, I was put on Flagyl, 6MP, and the giant deadly mantis Prednisone. Prednisone is a wonderfully horrible drug. It is wonderful because it got the disease under control, brought my appetite back, and helped me gain weight and feel physically great. But the downsides were killers: moon face, mood swings, excessive sweating, acne, you name it. And this is not so good for a teenage girl to go through! Kids are mean in high school. I actually came home in tears when a girl said I looked like a chipmunk. I hated going to school and would try to hide my face and be as inconspicuous as possible until the moonface went away, which was well into January at least. But finally it went away and I was healthy again! Hooray!
The Ride hits a Bump
I stayed happy and healthy until May of my senior year, when my doctor decided I needed to cut down my dose of 6MP. So we cut it down and I went into a flare up in August of 2001, three months after the dose cut. I was in Canada on vacation when I finally admitted to myself and my mom that I was getting sick again. What a nightmare to get a perscription in Canada! Lol. Well I made it through and came home, and went through the whole Prednisone thing again. Except it really didn't seem to make a difference. Every time I would taper the dose down I would start feeling bad again. But I managed through and my symptoms were livable until May of 2002.
The Shit Hits the Fan
Welcome to the most horrible summer of my life. Summer 2002, Summer of Hell was upon me. In about late May, I started noticing a little soreness in my nether region. Now I was hoping this was not some kind of genital wart or other std malaise because I didn't want to have to hunt down and kill my ex boyfriend. So anyway this soreness persisted. I foolishly thought it was a torn or pulled muscle and would eventually go away on its own. HahahahahahahahahHAHAHAHAHHA!!! No, this little sucker had big plans for me! The soreness got worse, and worse, and WORSE! I was like having a knife stuck in your "area" all the time. A little too kinky and painful for me, if you know what I mean. Then, it got worse. What's worse than a knife in your vagina, you ask? When the knife brings a baloon to the party. Yeah, it was a little tunnel going from my large intestine frontwards. And anytime I would have a little gas, the damn tunnel would fill up with air. Oh and if you think that didn't hurt!!! Sweet Christ on a bicycle it hurt. And this was happening several times a day. I would have to reach down and use my fingers to push the air back out into my colon where it was goddamn supposed to be in the first place. Oh man. The pain. So this went on for a while, and then, it got worse. The little tunnel was not satisfied being a one door tunnel, and just burrowed itself right through the skin to the other side. Now I have this fantastic ability to fart simultaneously out of my butthole and this new hole, affectionatly dubbed at this point, "Ralph, the butt tube". Now Ralph was making my life a living hell. I laid in bed all day, hand sandwiched betwixt my legs, poised and pressured to keep air the hell out of that tube. I did go to see my doctor, who performed another colonoscopy on me in July, and she said, nothing is there. And sent me the fuck home, and did nothing!!!!!! AHHH THE BITCH! So this thing is down there festering, now not only air is passing through but delightful pus is spewing forth from this tiny hole. I got a pants load of pus everyday to deal with, I got this horrible, stabbing pain, I got a huge, golfball sized goiter on the side of my crotch, and the woman says nothing is there and sends me home. I couldn't even walk right, at work my boss was asking me what was wrong when I was walking around with this ghetto limp. Anyway, so now I am getting a little pissed off. I know there is something not right with this picture. So I finally got into a local surgeon who deals with people with hemorroids and stuff. And I mentioned how sore and horribly painful this thing is just when you're treating it nicely, well, it does not like to be fucked with. At the surgeon's office, of course he has to take a look to see what the hubbuh is, and I just lay there and let him look at my crotch because at this point I have no will to live. And he's just gonna take his finger andOH MY SWEET MOTHER OF GOD I CAN'T BELIEVE THIS IS NOT HAPPENING TO ME THE MAN HAS TAKEN A HOT POKER AND STUCK IT TO MY FLESH THIS IS UNBELIEVABLE I AM GOING TO DIE RIGHT HERE ON THIS TABLE A POOR BROKEN BODY. Well that's what it felt like. And I know he was trying to be gentle, but I was sobbing like a baby from the pain. And I was worse because mom had told me it was not going to hurt going to the office that day. If I had known he was going to do that I might have been able to prepare, but son of a did that hurt. I mean I was sobbing. I bet the people in the waiting room were a little concerned. So finally I come out all red faced and collapse into the car and we go home. The surgeon said to take lots of real hot baths to try to draw out the infection, and take some good antibiotics for it, and here's some tylonol number 3's for the pain. I did all this, and mighty Ralph shrank a little but was not defeated, and after weeks of hot sitz baths every 3 hours or something like that, Ralph was scheduled for release. Not on good behavior mind you. On the day before I was to go under the knife I didn't have much pussy crap as usual, and I decided to take one last little sitz bath for good measure, and I liked to take a mirror down there to check the day's progress on the eating of my flesh, when a barrage of yellowy slime came tumbling out and soured a small spot on the bathroom rug. One last act of defiance from Ralph, who must have known his time had come. And the next day, he was laid to rest, and I woke up with a numb bottom and a great pair of hospital granny underwear. It was a glorious day!
Life after Ralph
So now Ralph was gone and I could go back to life as usual. Still had a little trouble keeping the uberflareup away, and to this day I am still trying. I have since dropped the evil doctor who allowed Ralph to take over my life, and just Tuesday got in to see a new doctor. I like him already. Oh wait, I forgot about the other doctor I saw in the meantime. She was crazy. We went up there in December, and she did some routine bloodwork and found that my liver functions were slightly elevated. SLIGHTLY mind you. So I had to go back up there again, and she is making this huge deal of it, like my liver is in real bad shape, and I had to have weekly bloodwork, and had an appointment with a liver clinic and everything. I am thinking I am going to be on a transplant list here, I mentioned something about abdominal pain and the woman wanted to admit me to the hospital. Oh it was time to get away from this crazy bitch. I had another round of bloodwork which showed my levels had returned to normal anyway. She was overreacting in a big way! Scared me half to death.
So now tomorrow I am going in for a small bowel xray to see if the disease has broken out there. We know it's in my colon, I guess he needs to see where all it is to figure up my medicine. I guess I'm going to be on Remicade now, which is like an iv drug. I will be like a cancer patient! Woo! I don't think all my hair will fall out although there was some mention of mild hair loss. I hate that but you have to loose a lot of hair for it to be noticeable and mine is pretty thick so I think I will be ok there. I think my biggest beef is that my 21st birthday is right around the corner but I can do no drinking on Remicade. I will be stone sober and probably hanging out with my mom on my 21st. Am I going to make a wholesome elementary school teacher or what?
Stay tuned for updates.