M
Menking914
Guest
:sign0144:
Well I can say that I love everything about this website. Not only is it helpful, informative, and pretty funny...it is also touching and truly a wonderful thing.
I hope this doesn't take too long but my case of CD (Yea, I picked up on the slang already, sweet!) is a little bit different than most of the cases I have read about today and I have read a bunch
I have had symptoms since I was 14, most specifically an anal fissure which has never healed, not by any medication or by surgery or anything. It continues to bleed today which is just something I have learned to deal with. I guess I didn't know what to think, nor did my parents, so we didn't think much of it.
I passed along just fine, no cramping, abnormal bowels, or anything truly significant until March of 2007, my junior year in high school. All of a sudden I collapsed in pain in the middle of my school's hallway. Not knowing what was wrong I refused help, crawled into one of my teacher's rooms who let me lie down and kept other kids from entering the room, and called my parents and went to the doctor.
After a bunch of different tests, many of which failed entirely to do anything...my parents sat me down and told me that it was possible that I had lymphoma because on my scans there was a mass the size of a golf ball where a lymph node once was. I went to my GI doctor, and he was as grave as anyone I have ever seen. It was a dark period in my life for sure.
Life continued as best it could, I used sports to cope, focused in school, and had great friendships and a relationship here and there. But when I went home at night I would break down sometimes either from tears or severe pain. After trips to Sinai in NYC, countless radiation tests, biopsies, a colonoscopy, and many consultations with a child chemo doc, an oncologist, a bowel surgeon, my pediatric doctor, and my GI doctor we determined that it was not in fact lymphoma and it was indeed crohn's, though the cancer thing will come back later.
I was in major pain from the crohn's. But, I never had weight loss like anyone here unless it was during one of my hospital visits, one of my friends on my baseball team contracted crohn's and he lost tons of weight, had all the bowel problems people on here had, and was a shadow of his former self. But me? Never. I didn't lose weight, my bowel movements were/are generally normal. I never have to rush to the bathroom, never have to experience the shame of not being able to control myself in that regard. That is a problem that I can never understand...I really wish everyone struggling with it the best because the mental aspect of battling CD is almost as important as the physical one in my opinion.
All I did have was pain of epic proportions and I had it a lot. Often I would have just eaten and i would explode in pain, sometimes i didn't eat for days in an attempt to not be in pain and that would fail miserably. I ran the gambit of drugs, entrecort, prednisone, pentasa, cipro, then more prednisone, then humira (the prednisone in two weeks gave me stretch marks all over my body which would shock octomom, a devastating side-effect for a 17 year old kid). Then one day about a year after my first major bout with CD, I couldn't get any food down. I was in extreme pain and went to the hospital and promptly passed out from dehydration. I was in the hospital for 7 days that time and luckily for me they blasted it through with steroids. They later told me that I was so blocked up that my body had formed another passageway to get stuff through my intestines and that the humira blocked that new passageway up.
Anyway, I went back to the hospital on june 20th of 08 and had surgery. I was told they would attempt it laparoscopically but they couldn't do it. I found out when I was in extreme pain and since I was still 17 and in the children's wing they had to be cautious about pain meds. Here I am a 6'5" 250 pound guy and I am getting treated like some baby. On top of that three days later some trainees came in at 6 am while I was groggy on pain meds and benadryl (without my doctor's knowledge), told me that i could drink so they took me off my IV, and within two hours I puked so hard that one of the staples that held my wound together popped out. That was the worst pain I ever experienced. But by the end of the night I was laughing it off with ice-packs, comedy central, and some really nice drugs
though it did keep me in the hospital for around 8 days.:ybatty:
Surgery was a success, had a great summer (mostly) and worried about normal kid stuff like my girlfriend's parents being jerks :lol:. Anyway i hoped my crohn's wouldn’t come back. But oh it did and in a major way. October of 08, less than 6 months after my surgery, during my first semester in college, right back into the hospital for 5 more days with a blockage. Two months ago, another hospital stint for 4 days with another blockage. My crohn's is back and kicking.
Here is the best part. I am pre-lymphomic, because of the epstein-bar virus (which everyone has) and my dumb lymph nodes if I take immuno-suppressant drugs, I will get cancer, its that simple. And if I get cancer I am missing a protein in my cells that a new drug would bind to, so I would have to go straight to chemo.
So here I sit, juggling my way between long-term flagyl doses which have already caused partial nerve damage, my crohn's coming back due to inability to treat my symptoms, and cancer if I go on steroids or higher lever drugs like humira, remicade, or 6mp. I can't get too many more scans either because I have had over 30, which at my age concerns my doctors immensely. Its tough, but I have more important things to do that worry about CD stopping me from living my life. I have a positive outlook, prepare for the worst and hope for the best, and I dont ever intend to let any medical issues I may have get in the way of my life...ever.
I sincerely apologize about the atrociously long nature of this post. I hope to post more often and use fewer words. Best of luck to all of you. And if you read this, you are a champion, seriously. I am sure there is stuff I have forgotten about my experience with crohn's, but to be honest I am just wondering if anyone else has had a similar experience or can relate. I have been called an "interesting consult" by three doctors, so I hope no one can relate too much!!:awe:
Well I can say that I love everything about this website. Not only is it helpful, informative, and pretty funny...it is also touching and truly a wonderful thing.
I hope this doesn't take too long but my case of CD (Yea, I picked up on the slang already, sweet!) is a little bit different than most of the cases I have read about today and I have read a bunch
I have had symptoms since I was 14, most specifically an anal fissure which has never healed, not by any medication or by surgery or anything. It continues to bleed today which is just something I have learned to deal with. I guess I didn't know what to think, nor did my parents, so we didn't think much of it.
I passed along just fine, no cramping, abnormal bowels, or anything truly significant until March of 2007, my junior year in high school. All of a sudden I collapsed in pain in the middle of my school's hallway. Not knowing what was wrong I refused help, crawled into one of my teacher's rooms who let me lie down and kept other kids from entering the room, and called my parents and went to the doctor.
After a bunch of different tests, many of which failed entirely to do anything...my parents sat me down and told me that it was possible that I had lymphoma because on my scans there was a mass the size of a golf ball where a lymph node once was. I went to my GI doctor, and he was as grave as anyone I have ever seen. It was a dark period in my life for sure.
Life continued as best it could, I used sports to cope, focused in school, and had great friendships and a relationship here and there. But when I went home at night I would break down sometimes either from tears or severe pain. After trips to Sinai in NYC, countless radiation tests, biopsies, a colonoscopy, and many consultations with a child chemo doc, an oncologist, a bowel surgeon, my pediatric doctor, and my GI doctor we determined that it was not in fact lymphoma and it was indeed crohn's, though the cancer thing will come back later.
I was in major pain from the crohn's. But, I never had weight loss like anyone here unless it was during one of my hospital visits, one of my friends on my baseball team contracted crohn's and he lost tons of weight, had all the bowel problems people on here had, and was a shadow of his former self. But me? Never. I didn't lose weight, my bowel movements were/are generally normal. I never have to rush to the bathroom, never have to experience the shame of not being able to control myself in that regard. That is a problem that I can never understand...I really wish everyone struggling with it the best because the mental aspect of battling CD is almost as important as the physical one in my opinion.
All I did have was pain of epic proportions and I had it a lot. Often I would have just eaten and i would explode in pain, sometimes i didn't eat for days in an attempt to not be in pain and that would fail miserably. I ran the gambit of drugs, entrecort, prednisone, pentasa, cipro, then more prednisone, then humira (the prednisone in two weeks gave me stretch marks all over my body which would shock octomom, a devastating side-effect for a 17 year old kid). Then one day about a year after my first major bout with CD, I couldn't get any food down. I was in extreme pain and went to the hospital and promptly passed out from dehydration. I was in the hospital for 7 days that time and luckily for me they blasted it through with steroids. They later told me that I was so blocked up that my body had formed another passageway to get stuff through my intestines and that the humira blocked that new passageway up.
Anyway, I went back to the hospital on june 20th of 08 and had surgery. I was told they would attempt it laparoscopically but they couldn't do it. I found out when I was in extreme pain and since I was still 17 and in the children's wing they had to be cautious about pain meds. Here I am a 6'5" 250 pound guy and I am getting treated like some baby. On top of that three days later some trainees came in at 6 am while I was groggy on pain meds and benadryl (without my doctor's knowledge), told me that i could drink so they took me off my IV, and within two hours I puked so hard that one of the staples that held my wound together popped out. That was the worst pain I ever experienced. But by the end of the night I was laughing it off with ice-packs, comedy central, and some really nice drugs
though it did keep me in the hospital for around 8 days.:ybatty: Surgery was a success, had a great summer (mostly) and worried about normal kid stuff like my girlfriend's parents being jerks :lol:. Anyway i hoped my crohn's wouldn’t come back. But oh it did and in a major way. October of 08, less than 6 months after my surgery, during my first semester in college, right back into the hospital for 5 more days with a blockage. Two months ago, another hospital stint for 4 days with another blockage. My crohn's is back and kicking.
Here is the best part. I am pre-lymphomic, because of the epstein-bar virus (which everyone has) and my dumb lymph nodes if I take immuno-suppressant drugs, I will get cancer, its that simple. And if I get cancer I am missing a protein in my cells that a new drug would bind to, so I would have to go straight to chemo.
So here I sit, juggling my way between long-term flagyl doses which have already caused partial nerve damage, my crohn's coming back due to inability to treat my symptoms, and cancer if I go on steroids or higher lever drugs like humira, remicade, or 6mp. I can't get too many more scans either because I have had over 30, which at my age concerns my doctors immensely. Its tough, but I have more important things to do that worry about CD stopping me from living my life. I have a positive outlook, prepare for the worst and hope for the best, and I dont ever intend to let any medical issues I may have get in the way of my life...ever.
I sincerely apologize about the atrociously long nature of this post. I hope to post more often and use fewer words. Best of luck to all of you. And if you read this, you are a champion, seriously. I am sure there is stuff I have forgotten about my experience with crohn's, but to be honest I am just wondering if anyone else has had a similar experience or can relate. I have been called an "interesting consult" by three doctors, so I hope no one can relate too much!!:awe:
