Hi,
My name is Jeannie & I've had Crohn's & colitis since I was 7. I ha been symptomatic since I was about 5. I don't remember life without Crohn's. Truthfully normal to me was pain, no hunger, headaches, nausea, and being tired all the time. I never wanted to play. I took about 25 pills a day, had a feeding tube, growth hormone shots, random blood testing & that was normal to me. I'm now 30 and met a wonderful person, who happens to be a firefighter/paramedic, & he takes care of me like I never believed anyone would want to. Before I met Tony, I had just endured what o thought was hell on earth.
It started Christmas eve of '06, a pain that shot from my head to toes & had me curled over grasping my tummy, moaning & crying from the pain. I was scared if I stood up, something would rip or fall out! My family recognized right away this was not like every other day. They called the paramedics and I was admitted for the first time due to my Crohn's. I had tests, catscans, X-rays but nothing showed. After 5 weeks, they called a specialist who I'll call "Barney Rubble" since his resolution was caveman like. He said, " we'll cut everything out & give you a bag, you'll never have these pains again." even in my drugged state, I demanded to be transferred for another opinion. I went to Cleveland clinic in Florida and they decided to do lapriscopic surgery to "explore"... I was reassured if anything needed to be removed I'd have no major scarring. I only remember waking up in a stretcher screaming from the intense pain. My intestine, about 11 ft had completely collapsed so they had to cut me from my sternum to my pelvis. The doctors "snow balled" me I guess to keep me quiet & I remember my parents holding my hand & stroking my hair reassuring me everything would be fine.
The next morning the nurse on shift woke me and asked me to roll on my side to take my vitals. Turns out I had bled out. I remember panic, shouting and then waking up 3 days later hooked up to an IV in my neck giving me blood. I felt my stomach and discovered i had a bag hanging off my right side. They had to go back in for emergency surgery to stop the bleeding & when the doctors did, they perforated my colon. They had to remove 4 ft of my colon, which had strictures.
My recovery was slow & due to many complications, 3 pulmonary embolisms, erratic heart beats, magnesium & potassium levels at 1.9 & 2.6, fevers, and another 3 ft resection of my small intestines. The care in the hospital was awful. I had to beg for medication multiple times. They'd not come in to check on me for hours. My IV sites weren't cared for & resulted in infiltrated iv lines which they'd still try to put meds thru bc they didn't want to try to start a new iv. Some nurses pushed the meds so fast they'd blow my veins.
After 6 months of being locked up in the hospital, the doctors finally released me after I begged them to let me go. They told me I was lucky & should be "leaving in a box!" I lived with a bag that conemned me to my home. I was totally dependent on my parents, I couldn't work bc my body didn't metabolize with the ileostomy. I couldn't drive bc I was blacking out & fainting. For 3 yrs I was a prisoner in my own body.
After a long wait, and regular hospitalizations every 4-6 wks for those years, I had the ileostomy reversed. I'm just recently starting to feel normal again. I'm still not used to seeing the thick scars all over my stomach. I miss not having a belly button.
I'm grateful I'm alive, especially now that I'll be getting married in march, but I strongly suggest taking very good care of your crohn's. Do research about the doctors & hospitals around just in case something like this ever happened. I wish I had more of a plan or knowledge. I take prednisone 40 mg, , azathioprine, librax, flagyl. I am allergic to Remicade & humira. My medical costs are thru the roof bc my insurance dropped me. Either way, I'm still fighting to be here and hopefully help others. Since survey, I've raised over $30 thousand dollars for the CCFA.
I try to stay busy and am in a contest to win wedding videography for our day. I need votes on our engagement photo on facebook. If you'd like to help or have questions I can maybe help you with, please write. :sign0085: I'm here to hopefully give fellow Crohns patients some advice or perspective from someone who was not ready to give up.
Much hope & health!
My name is Jeannie & I've had Crohn's & colitis since I was 7. I ha been symptomatic since I was about 5. I don't remember life without Crohn's. Truthfully normal to me was pain, no hunger, headaches, nausea, and being tired all the time. I never wanted to play. I took about 25 pills a day, had a feeding tube, growth hormone shots, random blood testing & that was normal to me. I'm now 30 and met a wonderful person, who happens to be a firefighter/paramedic, & he takes care of me like I never believed anyone would want to. Before I met Tony, I had just endured what o thought was hell on earth.
It started Christmas eve of '06, a pain that shot from my head to toes & had me curled over grasping my tummy, moaning & crying from the pain. I was scared if I stood up, something would rip or fall out! My family recognized right away this was not like every other day. They called the paramedics and I was admitted for the first time due to my Crohn's. I had tests, catscans, X-rays but nothing showed. After 5 weeks, they called a specialist who I'll call "Barney Rubble" since his resolution was caveman like. He said, " we'll cut everything out & give you a bag, you'll never have these pains again." even in my drugged state, I demanded to be transferred for another opinion. I went to Cleveland clinic in Florida and they decided to do lapriscopic surgery to "explore"... I was reassured if anything needed to be removed I'd have no major scarring. I only remember waking up in a stretcher screaming from the intense pain. My intestine, about 11 ft had completely collapsed so they had to cut me from my sternum to my pelvis. The doctors "snow balled" me I guess to keep me quiet & I remember my parents holding my hand & stroking my hair reassuring me everything would be fine.
The next morning the nurse on shift woke me and asked me to roll on my side to take my vitals. Turns out I had bled out. I remember panic, shouting and then waking up 3 days later hooked up to an IV in my neck giving me blood. I felt my stomach and discovered i had a bag hanging off my right side. They had to go back in for emergency surgery to stop the bleeding & when the doctors did, they perforated my colon. They had to remove 4 ft of my colon, which had strictures.
My recovery was slow & due to many complications, 3 pulmonary embolisms, erratic heart beats, magnesium & potassium levels at 1.9 & 2.6, fevers, and another 3 ft resection of my small intestines. The care in the hospital was awful. I had to beg for medication multiple times. They'd not come in to check on me for hours. My IV sites weren't cared for & resulted in infiltrated iv lines which they'd still try to put meds thru bc they didn't want to try to start a new iv. Some nurses pushed the meds so fast they'd blow my veins.
After 6 months of being locked up in the hospital, the doctors finally released me after I begged them to let me go. They told me I was lucky & should be "leaving in a box!" I lived with a bag that conemned me to my home. I was totally dependent on my parents, I couldn't work bc my body didn't metabolize with the ileostomy. I couldn't drive bc I was blacking out & fainting. For 3 yrs I was a prisoner in my own body.
After a long wait, and regular hospitalizations every 4-6 wks for those years, I had the ileostomy reversed. I'm just recently starting to feel normal again. I'm still not used to seeing the thick scars all over my stomach. I miss not having a belly button.
I'm grateful I'm alive, especially now that I'll be getting married in march, but I strongly suggest taking very good care of your crohn's. Do research about the doctors & hospitals around just in case something like this ever happened. I wish I had more of a plan or knowledge. I take prednisone 40 mg, , azathioprine, librax, flagyl. I am allergic to Remicade & humira. My medical costs are thru the roof bc my insurance dropped me. Either way, I'm still fighting to be here and hopefully help others. Since survey, I've raised over $30 thousand dollars for the CCFA.
I try to stay busy and am in a contest to win wedding videography for our day. I need votes on our engagement photo on facebook. If you'd like to help or have questions I can maybe help you with, please write. :sign0085: I'm here to hopefully give fellow Crohns patients some advice or perspective from someone who was not ready to give up.
Much hope & health!