- Joined
- Aug 13, 2011
- Messages
- 5
Hi guys! Words can't describe how happy I am to be here - I find peace in knowing that I'm not alone, even though I wish we all didn't have to deal with this horrible disease.
I'm 18 years old and I'm new to Crohn's, so guess I'll start from the beginning. Three days after Christmas I started having awful stomach pains. Figuring I ate something I shouldn't have, I passed it off as one of those 'lesson learned' moments. I felt pretty sick all night, frequenting the bathroom at least ten times. The next morning after a few hours of sleep I felt better, probably because there wasn't a single thing left in my digestive system - yuck.
Anyways, I felt pretty good. New Years eve came, and I was having a perfectly fine time - that was until I got a sharp pain in my stomach. Suddenly I had an overwhelming urgency to use the bathroom again. After spending an embarrassing half-hour in my friend's bathroom, I apologized and told her I had to go home because I wasn't feeling well. I barely made it home in time to spend my New Year's eve in the bathroom, enjoying a celebratory cocktail of Alka-Seltzer and Pepto Bismal.
Again, I passed it off as the aftermath to something I ate - and vowed for a new diet. For another four months these little 'episodes' continued. I thought it was maybe acid reflux, because I usually had a burning in my abdomen like indigestion and bloating (gas, burping, etc). On top of that I had constant diarrhea, and when I didn't I wasn't going at all. Then the nausea began. I consider this the worst of my symptoms because I have emetophobia ): Just my luck, huh? Anyways, finally it got to the point where I'd spend half my day at school in the bathroom - I couldn't eat, I was barely getting any sleep because my nights were spent on the toilet, and I had lost at least twenty pounds. It was the end of my senior year of high school and I was supposed to be having fun, enjoying the excitements of graduation and completing one chapter of my life.
The first week of April I finally let my parents take me to the E.R. My mom came home from work and I was in a fetal position on the bathroom floor. After they gave me some pain medicine, hooked me up to an I.V, took countless viles of blood, and took me to get an ultrasound - the doctor in the E.R told me that I needed my gallbladder out. I was scared at first, considering the only surgery I'd ever had was my tonsils out at 9 years old. So, within the week I was scheduled for surgery. I was just happy to know that relief would be coming.
I was so wrong.
Two weeks after my surgery (the normal recovery time) I thought I felt fine. I went back to school, hung out with my friends, ate the foods I hadn't had in months! Then, one friday night I got a sharp stabbing pain near my belly button. I thought maybe I had just over done it, that my scars were still fresh - and I needed to take it easy (I had a laparoscopic cholecystectomy). That night all my symptoms returned with a vengeance. I was terrified. I decided not to tell my parents how I was feeling because I felt like a burden. I called my surgeon one day while I was home alone, and he told me that I just needed to take it 'easy' and that my body was still recovering from 'internal trauma'. I took his advice and returned to my normal activities, just at a slower pace.
I took a trip to my primary care doctor two days before my Graduation date because my symptoms hadn't improved, but she was out of town. I decided to see another doctor in her office, hoping he could maybe answer some of my questions. He told me I was feeling awful because I was 'overweight by 20 pounds'. He wouldn't even listen to my concerns, and told me I was 'irresponsible' because I let an Emergency Room doctor refer me to a surgeon - who then took my gallbladder out. A doctor, someone I'm supposed to trust with my health, told me, a shaken 18-year-old, it was my own fault that I was sick. I couldn't believe it!
The night before Graduation I probably felt the worst I ever have. I thought I was dying. I would've rather had my gallbladder out ten times than felt how I felt that night. I hadn't eaten in a few days, and I ended up passing out in my bathroom because of dehydration. I woke up in my dad's SUV, on the way to the emergency room. I barely remember what happened because I was so tired and in so much pain. I ended up being admitted that night - I missed my graduation, my friend's graduation parties, everything. I was devastated.
After six days in the hospital they discharged me without any findings. I must of had a hundred x-rays, a dozen blood tests, and several different antibiotics. I ended up having to have a central port inserted into my chest because my arms looked like pin cushions! By this time I had gone from 5'6 and 183 pounds, to 5'6 and 122 pounds. The nurses said that they thought I had a 'viral infection' - maybe a bad case of the stomach flu, or gastritis. I couldn't believe I had gone through that much and missed my high school graduation for nothing!
Finally my parents, not wanting to give me the chance to hide how I was feeling, set me up with a G.I doctor. I am so thankful for him. Right off the bat he took a stool sample, and blood cultures. The next week I had an endoscopy, and the week after that a colonoscopy and a barium swallow (the swallow was the worst of them all :yfrown: ). My G.I couldn't believe how inflamed my intestines were. He also couldn't believe that the hospital had missed my inflammation in the x-rays - he was shocked. After reviewing the biopsies he took he finally diagnosed me with Crohn's Disease in July.
Since then, I've had a blood transfusion and an infusion of Remicade. The inflammation was so severe that I was actually losing blood internally - which has caused me to be anemic. Normally Remicade is considered a 'last restort' (at least that's what my G.I told me), but my symptoms were so advanced that he decided it was best. Along with the once-a-month Remicade infusions, I take cipro and azulfidin, along with zofran - because those medications make me pretty nauseous. Eventually I'll have to have my colon removed, but since I'm so young my G.I thinks I might be able to get a few years of remission before that has to happen.
I wanted to post this here because I just want those to know - don't ever give up! I recently got a semi-colon tattoo behind my ear to signify all that I've been through (semi...colon... get it? :ylol: ). More than once I felt completely hopeless, and there were days when I thought there would never be light at the end of this tunnel. People would say 'you don't look sick' or 'it's all in your head'. My dad calls Crohn's 'the invisible disease'.
Next week I move into college, and at the beginning of the summer I thought I'd never be able to go because I was too sick! I was pretty fed-up with the healthcare system by the time I reached my G.I, but once I met him my faith returned. For every ten horrible healthcare employees there will be one good one. I'll be studying biology/pre-med, and I've always wanted to be a forensic pathologist - but I'm considering some gastrointestinal research, who knows - maybe there's a cure on the horizon!
Thanks for reading!
I'm 18 years old and I'm new to Crohn's, so guess I'll start from the beginning. Three days after Christmas I started having awful stomach pains. Figuring I ate something I shouldn't have, I passed it off as one of those 'lesson learned' moments. I felt pretty sick all night, frequenting the bathroom at least ten times. The next morning after a few hours of sleep I felt better, probably because there wasn't a single thing left in my digestive system - yuck.
Anyways, I felt pretty good. New Years eve came, and I was having a perfectly fine time - that was until I got a sharp pain in my stomach. Suddenly I had an overwhelming urgency to use the bathroom again. After spending an embarrassing half-hour in my friend's bathroom, I apologized and told her I had to go home because I wasn't feeling well. I barely made it home in time to spend my New Year's eve in the bathroom, enjoying a celebratory cocktail of Alka-Seltzer and Pepto Bismal.
Again, I passed it off as the aftermath to something I ate - and vowed for a new diet. For another four months these little 'episodes' continued. I thought it was maybe acid reflux, because I usually had a burning in my abdomen like indigestion and bloating (gas, burping, etc). On top of that I had constant diarrhea, and when I didn't I wasn't going at all. Then the nausea began. I consider this the worst of my symptoms because I have emetophobia ): Just my luck, huh? Anyways, finally it got to the point where I'd spend half my day at school in the bathroom - I couldn't eat, I was barely getting any sleep because my nights were spent on the toilet, and I had lost at least twenty pounds. It was the end of my senior year of high school and I was supposed to be having fun, enjoying the excitements of graduation and completing one chapter of my life.
The first week of April I finally let my parents take me to the E.R. My mom came home from work and I was in a fetal position on the bathroom floor. After they gave me some pain medicine, hooked me up to an I.V, took countless viles of blood, and took me to get an ultrasound - the doctor in the E.R told me that I needed my gallbladder out. I was scared at first, considering the only surgery I'd ever had was my tonsils out at 9 years old. So, within the week I was scheduled for surgery. I was just happy to know that relief would be coming.
I was so wrong.
Two weeks after my surgery (the normal recovery time) I thought I felt fine. I went back to school, hung out with my friends, ate the foods I hadn't had in months! Then, one friday night I got a sharp stabbing pain near my belly button. I thought maybe I had just over done it, that my scars were still fresh - and I needed to take it easy (I had a laparoscopic cholecystectomy). That night all my symptoms returned with a vengeance. I was terrified. I decided not to tell my parents how I was feeling because I felt like a burden. I called my surgeon one day while I was home alone, and he told me that I just needed to take it 'easy' and that my body was still recovering from 'internal trauma'. I took his advice and returned to my normal activities, just at a slower pace.
I took a trip to my primary care doctor two days before my Graduation date because my symptoms hadn't improved, but she was out of town. I decided to see another doctor in her office, hoping he could maybe answer some of my questions. He told me I was feeling awful because I was 'overweight by 20 pounds'. He wouldn't even listen to my concerns, and told me I was 'irresponsible' because I let an Emergency Room doctor refer me to a surgeon - who then took my gallbladder out. A doctor, someone I'm supposed to trust with my health, told me, a shaken 18-year-old, it was my own fault that I was sick. I couldn't believe it!
The night before Graduation I probably felt the worst I ever have. I thought I was dying. I would've rather had my gallbladder out ten times than felt how I felt that night. I hadn't eaten in a few days, and I ended up passing out in my bathroom because of dehydration. I woke up in my dad's SUV, on the way to the emergency room. I barely remember what happened because I was so tired and in so much pain. I ended up being admitted that night - I missed my graduation, my friend's graduation parties, everything. I was devastated.
After six days in the hospital they discharged me without any findings. I must of had a hundred x-rays, a dozen blood tests, and several different antibiotics. I ended up having to have a central port inserted into my chest because my arms looked like pin cushions! By this time I had gone from 5'6 and 183 pounds, to 5'6 and 122 pounds. The nurses said that they thought I had a 'viral infection' - maybe a bad case of the stomach flu, or gastritis. I couldn't believe I had gone through that much and missed my high school graduation for nothing!
Finally my parents, not wanting to give me the chance to hide how I was feeling, set me up with a G.I doctor. I am so thankful for him. Right off the bat he took a stool sample, and blood cultures. The next week I had an endoscopy, and the week after that a colonoscopy and a barium swallow (the swallow was the worst of them all :yfrown: ). My G.I couldn't believe how inflamed my intestines were. He also couldn't believe that the hospital had missed my inflammation in the x-rays - he was shocked. After reviewing the biopsies he took he finally diagnosed me with Crohn's Disease in July.
Since then, I've had a blood transfusion and an infusion of Remicade. The inflammation was so severe that I was actually losing blood internally - which has caused me to be anemic. Normally Remicade is considered a 'last restort' (at least that's what my G.I told me), but my symptoms were so advanced that he decided it was best. Along with the once-a-month Remicade infusions, I take cipro and azulfidin, along with zofran - because those medications make me pretty nauseous. Eventually I'll have to have my colon removed, but since I'm so young my G.I thinks I might be able to get a few years of remission before that has to happen.
I wanted to post this here because I just want those to know - don't ever give up! I recently got a semi-colon tattoo behind my ear to signify all that I've been through (semi...colon... get it? :ylol: ). More than once I felt completely hopeless, and there were days when I thought there would never be light at the end of this tunnel. People would say 'you don't look sick' or 'it's all in your head'. My dad calls Crohn's 'the invisible disease'.
Next week I move into college, and at the beginning of the summer I thought I'd never be able to go because I was too sick! I was pretty fed-up with the healthcare system by the time I reached my G.I, but once I met him my faith returned. For every ten horrible healthcare employees there will be one good one. I'll be studying biology/pre-med, and I've always wanted to be a forensic pathologist - but I'm considering some gastrointestinal research, who knows - maybe there's a cure on the horizon!
Thanks for reading!
I'm so glad you found us here and thank you for posting your story. You've certainly been in rough seas, but that you've come out of it so bright and optimistic is a credit to you. Look forward to hearing how you get on.
