B
boneyboy
Guest
Hello all, after my first post, it was suggested that I write up a My Story post. I'm breaking this into separate parts as I have 20 years to detail here and it'll probably log me out before I can get it all written (if you noticed the tongue in cheek-ness there, you get a cookie).
Anyway. Started to have minor issues at age 5. Knees would blow up like balloons. Sucked cuz I was a very active kid. Fruit started giving me diarhea (big surprise). No weight loss or cramps though thank god.
This got slightly worse of the next couple of years. When I was 8, I started losing weight in about, oh, August of 1986. I finally dropped to 42 pounds and they sent me to a gastro ped. He knew I had crohn's the minute he saw me and heard my story. Thus started my love-hate relationship with the Bryn Mawr Hospital Pediatric Dept/Floor. Admitted me for 2 weeks. Let me out on Azulfadine and uh...I think that's it. This was January of 1987 that they finally figured this out.
Later that year, around May, I went back in for another 2-3 weeks. Jammed me up on prednisone that time, a love affair which lasted fairly consistently until I was about, oh, 24 or so. Little known to me at the time, but this would classify as a very unhealthy love affair in the long term. In the short term though, it was great! I could eat again!!
For the next few years I struggled going in and out of the hospital. Problem times of the year were November/December and April/May. Clockwork each year I'd be admitted sometime in the Spring. They put me on Imuran. Then switched me to Asacol. Then Pentasa. Then back to Asacol. Etc. You know the drill.
I tore tendons in my right ankle when I was 11, and that ended my soccer career. It was due to the prednisone weakening the connective tissues in my joints. They forgot to tell me to watch out for that little ditty there. Oops.
Fast forward several years to age 16, and I needed surgery. My ileum narrowed down to about 2 mm. I could barely drink a glass of water without throwing up. It was wonderful fun. Oddly I hadn't lost any weight though. They took out one foot of my small intestine and one third of my large intestine.
9 months later, full blown flareup. This is when I started taking up smoking full time. Parental stress flared at that time. Met a girl named Sarah, started dating her. We dated for about 1.25 years. She'd visit me in the hospital.
Graduation day. Oops gonna backtrack here a bit. At 17 I had my worst flareup ever. The crohn's crept up into my stomach, esophagus, and mouth, as well as my intestines. I had full blown crohn's everywhere. At 5'4", I dropped to 72 pounds. Nobody put 2 and 2 together on the sores in my mouth, not even me and my parents. I couldn't drink a glass of water without crying out in pain. It was horrid.
Senior year, April of 1996. Dump me into the hospital, perfect how to put PICC lines in pediatrics. By that time I was 18 but still in the peds ward. Two docs had an idea of how to get a picc line in little kids without having to use the huge feeder needle but they needed a test subject. I volunteered. It worked nicely. I got a tiny bit of morphine out of it, which was cool. Oh yeah, the morphine after my surgery back at 16, highly recommended. It was great, i had my own little pump.
They released me with a PICC line in my arm and on home TPN care cuz I still couldn't eat. That night I went to my friend's Junior prom as her date. Then the next week I had my senior prom. Still with the PICC line in my arm. Then I graduated, totally lost it when they called up my friend's family who had just died. He wrapped his 78 Corolla around a telephone pole. There wasn't much room for him in the car after that. They could have saved him but he would have been a vegetable, so his family opted not to do that. I couldn't even attend his funeral. I graduated in the top 7% of my class taking honors/AP/gifted classes. Highly involved in the music dept. I was Mr. Music in school all the way through. I play violin and bass guitar as well as sing.
Off to college. Me and Sarah had broken up. I was single for awhile, about 1.5 years. Hated my first school. Transferred to West Chester University, ended up majoring in Computer Science. Met a girl named Tanya at age 19. She kinda turned me around in regards to the crohn's. Helped me chill, let things slide off my back, not bother me as much. Take some time to smell the roses so to speak, something that my parents had been unable to teach me to do with all the medical/behavioral issues due to teh crohn's and prednisone over the years.
I was with Tanya for 4 years, pretty much for the remainder of college. The crohn's seemed to be a non-issue from age 20-24. I started having probs at age 24, and they threw me on Remicade. Unfortunately my body built up antibodies to it and it became totally ineffective.
Dated Caroline then from age 24-26. We were engaged. Things fell apart in epic proportions. Pretty much she proved in a blaze of fire and glory that the crohn's was not something she could deal with, she had too many of her own problems. I was suffering from peri-anal fistulas at the time. Multiple surgeries. I have a seton in still, it gets replaced once every 6 months or so. Mental note: call surgeon today to have it replaced.
They swapped me from pred to Entocort around age 25. World of difference. Behavioral moodiness went away after I got off the pred. Thank god.
I'm now 28. Bouncin around in the lady dept, just can't seem to find one that interests me enough to date seriously. Have a decent job, probly buying a house soon. Living with an old high school friend of mine. Keepin tabs on the music scene. Camping, traveling as much as possible. Currently having issues with fistulas (still) and some horrendous D, so I keep tabs on all bathroom locations
Beyond that, just livin life day to day.
Gotta run now, I have some servers that need to be slapped around here at the office. I'll address any questions/exclamations/etc in a separate thread sometime. Have a good one all, keep on keepin on
Dave
Anyway. Started to have minor issues at age 5. Knees would blow up like balloons. Sucked cuz I was a very active kid. Fruit started giving me diarhea (big surprise). No weight loss or cramps though thank god.
This got slightly worse of the next couple of years. When I was 8, I started losing weight in about, oh, August of 1986. I finally dropped to 42 pounds and they sent me to a gastro ped. He knew I had crohn's the minute he saw me and heard my story. Thus started my love-hate relationship with the Bryn Mawr Hospital Pediatric Dept/Floor. Admitted me for 2 weeks. Let me out on Azulfadine and uh...I think that's it. This was January of 1987 that they finally figured this out.
Later that year, around May, I went back in for another 2-3 weeks. Jammed me up on prednisone that time, a love affair which lasted fairly consistently until I was about, oh, 24 or so. Little known to me at the time, but this would classify as a very unhealthy love affair in the long term. In the short term though, it was great! I could eat again!!
For the next few years I struggled going in and out of the hospital. Problem times of the year were November/December and April/May. Clockwork each year I'd be admitted sometime in the Spring. They put me on Imuran. Then switched me to Asacol. Then Pentasa. Then back to Asacol. Etc. You know the drill.
I tore tendons in my right ankle when I was 11, and that ended my soccer career. It was due to the prednisone weakening the connective tissues in my joints. They forgot to tell me to watch out for that little ditty there. Oops.
Fast forward several years to age 16, and I needed surgery. My ileum narrowed down to about 2 mm. I could barely drink a glass of water without throwing up. It was wonderful fun. Oddly I hadn't lost any weight though. They took out one foot of my small intestine and one third of my large intestine.
9 months later, full blown flareup. This is when I started taking up smoking full time. Parental stress flared at that time. Met a girl named Sarah, started dating her. We dated for about 1.25 years. She'd visit me in the hospital.
Graduation day. Oops gonna backtrack here a bit. At 17 I had my worst flareup ever. The crohn's crept up into my stomach, esophagus, and mouth, as well as my intestines. I had full blown crohn's everywhere. At 5'4", I dropped to 72 pounds. Nobody put 2 and 2 together on the sores in my mouth, not even me and my parents. I couldn't drink a glass of water without crying out in pain. It was horrid.
Senior year, April of 1996. Dump me into the hospital, perfect how to put PICC lines in pediatrics. By that time I was 18 but still in the peds ward. Two docs had an idea of how to get a picc line in little kids without having to use the huge feeder needle but they needed a test subject. I volunteered. It worked nicely. I got a tiny bit of morphine out of it, which was cool. Oh yeah, the morphine after my surgery back at 16, highly recommended. It was great, i had my own little pump.
They released me with a PICC line in my arm and on home TPN care cuz I still couldn't eat. That night I went to my friend's Junior prom as her date. Then the next week I had my senior prom. Still with the PICC line in my arm. Then I graduated, totally lost it when they called up my friend's family who had just died. He wrapped his 78 Corolla around a telephone pole. There wasn't much room for him in the car after that. They could have saved him but he would have been a vegetable, so his family opted not to do that. I couldn't even attend his funeral. I graduated in the top 7% of my class taking honors/AP/gifted classes. Highly involved in the music dept. I was Mr. Music in school all the way through. I play violin and bass guitar as well as sing.
Off to college. Me and Sarah had broken up. I was single for awhile, about 1.5 years. Hated my first school. Transferred to West Chester University, ended up majoring in Computer Science. Met a girl named Tanya at age 19. She kinda turned me around in regards to the crohn's. Helped me chill, let things slide off my back, not bother me as much. Take some time to smell the roses so to speak, something that my parents had been unable to teach me to do with all the medical/behavioral issues due to teh crohn's and prednisone over the years.
I was with Tanya for 4 years, pretty much for the remainder of college. The crohn's seemed to be a non-issue from age 20-24. I started having probs at age 24, and they threw me on Remicade. Unfortunately my body built up antibodies to it and it became totally ineffective.
Dated Caroline then from age 24-26. We were engaged. Things fell apart in epic proportions. Pretty much she proved in a blaze of fire and glory that the crohn's was not something she could deal with, she had too many of her own problems. I was suffering from peri-anal fistulas at the time. Multiple surgeries. I have a seton in still, it gets replaced once every 6 months or so. Mental note: call surgeon today to have it replaced.
They swapped me from pred to Entocort around age 25. World of difference. Behavioral moodiness went away after I got off the pred. Thank god.
I'm now 28. Bouncin around in the lady dept, just can't seem to find one that interests me enough to date seriously. Have a decent job, probly buying a house soon. Living with an old high school friend of mine. Keepin tabs on the music scene. Camping, traveling as much as possible. Currently having issues with fistulas (still) and some horrendous D, so I keep tabs on all bathroom locations
Beyond that, just livin life day to day.Gotta run now, I have some servers that need to be slapped around here at the office. I'll address any questions/exclamations/etc in a separate thread sometime. Have a good one all, keep on keepin on
Dave
