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Confessions of a Crohn's Patient

The fundamental cause of Crohn's disease is unknown. Evidence suggests that a genetic predisposition leads to an unregulated intestinal immune response to an environmental, dietary, or infectious agent. However, no inciting antigen has been identified.




Chronic diarrhea with abdominal pain, fever, anorexia, weight loss, and a right lower quadrant mass or fullness are the most common presenting features.




Back to the Beginning




around the age of fourteen, i began having abdominal pain during meals. immediately after eating, i would have to rush to the bathroom where i spent 30 minutes doubled over with cramps, and having diarrhea. initially, my mother thought it was a ploy to get out of doing the dishes. but as the weeks went by with the same symptoms, she finally decided i was indeed sick. it's not easy as a teenage girl to admit to having diarrhea. little did i know just how bad things would get.



first my mother took me to an internist. he spent thirty minutes asking me questions then barely poked around on my stomach for less than two. i had always had trouble with my periods, cramping so hard i would nearly pass out. my diarrhea episodes seemed to be worse around my menstrual cycle. the doctor in all his wisdom informed my mom this was all normal for a girl my age.



so off to our regular physician i went. he'd just taken in an internist as his new partner and insisted i see him. next thing i know, i'm on my hands and knees on the examining room table with a cold metal rod stuck up my rear end. it was painful to say the least.



he suggested i see a gastrointerologist, a GI doctor. when i went to the specialist, he set up my first of many colonoscopies i would have. the prep was horrible. a gallon of the fowlest tasting stuff, and several enemas. painful and embarrassing for a young girl.



not only that, but i was placed on a table, unmedicated and a long tube was inserted. during the course, the doctor pumps air into the colon, causing a cramping sensation that rivals the worst menstral cramps i'd ever had.



as if it wasn't bad enough that i had to endure this with him, with the tube still up my butt and cramps nawing at me, he leaves the room and gets his partner. i felt like it was some sort of open house. why not bring in a few more doctors and nurses to have a look at my backside. hey, the more the merrier. i felt like not one doctor knew what my face looked like, but if i pulled down my pants they'd say, "oh hi, laurie, nice to see you again."



the next day i was admitted to the hospital. the initial diagnoses was ulcerative colitis. ulcerative colitis is similar to crohn's in appearance and symptoms, the only exception being that uc is limited only to the large intestine. unlike crohn's there is a cure for uc...the complete removal of the colon



it of course is ironic that for the first time in my life i had lost weight and weighed less than i had in years. but then i was started on iv therapy, given a drug that automatically causes 20 lbs of weight gain, mostly water. it caused my face to swell, called moonface, though i called it chipmunk cheeks. i started noticing bruising on my extremities because of the prednisone thinning my blood and causing me to bleed easily. my hair, which had always been thick and lusterous, began falling out and i lost half of it. when i complained to the doctor, he told me to be glad because he had one patient, who was a hairdresser, who'd lost all of her hair. this i suppose, was going to make me feel better. i began having hot flashes, and an insatiable appetite and was eating everything that wasn't tied down, especially chocolate. my pharmacist, who was fast becoming my best friend, said prednisone had the nickname of the sweettooth drug.



once released from the hospital, i took 25 pills a day. the side effects of the prednisone was horrible. my mother became very upset and called the doctor telling him she was going to pull me off. he informed her that if she did, i would likely end up in a coma. prednisone is produced naturally in the body. when adding external doses, the body cuts back on it's own production of the hormonal steroid. if the external dose is suddenly stopped, the body goes into shock. so we just had to ride it out



now i'd be lying if i didn't say that this, at that time, made me feel a little special. my mother, who was distant both physically and emotionally, was suddenly concerned and showing me more attention. i was also given special allowances at school, able to go to the bathroom whenever i need to.



after gaining all the weight back i'd lost, and then some, it did seem to help my symptoms and the doctor began slowingly cutting me back off the drug.



the biggest dread was all the colonoscopies i was having. i hated them. they were painful and demeaning. finally one day he said he wanted to do another one. i told him i refused unless he medicated me beforehand. "oh sure, that's not a problem." my mother and i were both pretty pissed knowing that i could have been comfortable all that time, but he made me suffer until i asked.



i was eventually weaned off the drug. i continued taking some of the other supplimental pills for awhile. and was able to go quite awhile before having to see him again.



but that's the thing about this illness. you'll be cruising along just fine and the symptoms begin to sneak up on you very slowly until one day you're in a full fledged flare-up.



i once again began losing weight. in my senior year i lost 25 lbs. funny, but no one i went to school with noticed. after graduation, i went to stay with my sister in california for a month and a half. while there, i was having a lot of pain. my sister was dealing with her own problems. her husband, who defected from hungary in the sixties, when they were still considered "behind the iron curtain" had been given permission to visit his homeland, the first time since his defection. he took their oldest daughter, who was around six at the time. my sister was pregnant with her second child and she was stressed, wondering if the hungarian government would be true to their word in letting giora come and go without punishment. she ended up in the hospital herself, during my visit.


cindy and i usually got along fine. but between her stress and my not feeling well, we were both fighting. my illness was flaring and i lost another 10 lbs while there.



upon returning back home, all of a sudden everyone noticed my weight loss. one former classmate asked my best friend if i had anorexia. i mean i was skinny folks, weighing in at about 125 lbs. i worked in a bookstore at the time and people would come in and ask me how i lost so much weight. "i did it the hard way, with a digestive disease" i'd tell them.



and suddenly, all those boys from school, who'd have nothing to do with me when i was overweight, were suddenly interested. this pissed me off to no end. i mean, i was still the same person i'd been all through school. the only difference was the weight.



and my best friend was now getting jealous. she'd been the "pretty one" the one that all the boys had flocked to. but now i was getting all the attention and it burned her up inside.



and then, i met wiley...and my life and my disease brought the world crashing down around me...



to be continued...







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