Hi all!
I have been diagnosed with Crohn's for eleven years this past December. I, as well as my family, think I have had it longer than that as I struggled for most of my junior high and high school with bowel and stomach problems. When I was half way through my grade 12 year I got so sick with what presented as flu like symptoms (fever of 103F while taking Tylenol, fever blsiters, red eyes from coughing, bloody stool, diarhea, ect) that I went to a couple doctors. The first told me it was the flu and to go home. I came back a few days later, to the hospital at this point, and he admitted me. They did an ultrasound and were so scared by my enflamed spleen that they rushed me to the Cross Cancer Institute in Edmonton Alberta, an hour and a half drive from my hometown. Once I got there, the doctor examined me, found my spleen was not as enlarged as they first suspected and then assumed it was Crohns because my dad had it. They put me on Salofalk and sent me home.
A year later I was in college in Camrose Alberta and the same thing happened. Friends rushed me up the U of A hospital, fear of what was going on. I met my specialist and the most amazing research nurse on the face of the planet. I remember the very first conversation we had as if it were yesterday. She told me my insides looked like hamburger meat and she was soory on behalf of the medical profession that they did not catch this condition sooner. They put me on my first dose of Prednisone and sent me back to college in a few days.
Those of you who have been or are on Predisone know what happens for most of us on that junk. It saves you from the pain, heals you but there sure are a truckload of side effects, right? Bloody noses, sensitivity to light, overemotional behavior, depression, weight gain and increased appetite, lack of concentration, athralgia, the list goes on and on. I hated it most of the time and swore I would never go on it again.
Through my second, third and fourth year of school i struggled and had a few hospital trips but NONE would top the trip I would have in the summer of 2008.
Now, I was luck until then, I would usually only get sick in what I was told were Crohn's disease 'low cycles' Oct-Feb. When its colder, the sun is out less, less Vitamin D, less activity, fruit isnt as fresh, lotsa reasons why its easier to get sick then. I got cocky in the summer. I was in denial. I didnt need meds, I could keep myself healthy. My disease wasn't THAT bad, right??
WRONG!!!! I was working 12 days straight, 12 hour shifts, no friends in Edmonton (where I had moved to go to school full time), and was struggling with how I was going to explain to my parents that I didnt want to do what I had wanted to do all my life as a career. Then, one of the teens I used to work with oeverdosed on my watch. I was a wreck. I beld for three weeks before I called my research nurse (who was on vacation at the time). She told me to go to the hospital so I did. They admitted me and I stayed there for three days, thought I was getting better until the third day. I was feeling tightness in my chest and called the nurse in. She took my blood pressure, left and the next thing I knew, 12 people were standing around my bed ripping off my gown, putting things on me and talking to me. They shipped me to ICU, I passed out on the way.
I woke up five days later with the same tightness in my chest. I started to cough and realized there was a tube down my throat. A man came running in and told me to help him take it out by coughing on his count. I was in the Intensive Care Unit at the University of Alberta. My parents arrived an hour later and we visited. They told me they were surprised I was talking as it usually takes a few hours to a few days after the tube is taken out (what can I say, Im a talker). I didnt realize how sick I was even at this point, I guess I was in a fog of the disease. It hurt to sit up, I felt nauseous but they made me. They made me get out of bed and pushed me to learn to rewalk (my legs had atrophied so bad I got severe leg cramps). My dad pushed and pushed me to pass every 'test' they put me through so I could leave the ICU. It took me five hard, long days to get out of ICU.
They put me on a regular wing of the hospital for a few more days. Thats when it kinda slipped from a family member that I just about died from my disease. The first night I was there, they told my parents I had a 10-15% chance of living through the first night. They also didnt know why this was happening and it took may tests to find out. They originally thought I had a heart attack but found out through many tests that an ulcer had perferrated my bowel wall and sent infection through my bloodstream and it evenutally attacked my heart. It was the first case of this that the doctors working on me had ever seen and some of them had been doctors for 25 years. I was basically septic and was told I was lucky I was already in the hospital cause if I would have waited any longer or been in another hospital where they did not have a Medical Emergency Team (MET) I would not have made it most likely. They thought I was going to have permanent heart damage and were baffled once again when the damage repaired itself somehow.
Over the next few years, the guilt slowly bubbled and boiled an eventually I became suicidal even off prednisone because of the guilt of what I put my family through. I decided three years after the incident happened that I should seek counselling (that was on a good day cause on a bad day I wouldda just ended it). I went to counselling for six months and went on anti depressants. Things got better, I quit blaming myself and quit asking "Why did I survive" with negative connotations and asked that in a positive light instead. Why did I survive this awful ordeal when the odds were so against me?? I still dont fully know or claim to understand but I am way more spiritual now than I have ever been. I am thankful I did make it and I make my life count.
This disease made me spend my seventeenth birthday in the hopsital, has taken away job opportunities, family members, and almost claimed my life. But despite all of that, it has taught me SO much and changed who I am SO prfoundly that I cannot imagine my life another way. I am not saying by any means this is a gift of some kind but there are positives strewn in between the negatives. It has taught me to say no, to let go of what doesn't really matter and has taught me what does. It has taught me how weak I am and how strong I truly am. My body amazes me almost everday. I hope my story can help someone else see the positive in their struggle too. Thank you for allowing me to share with you.
I have been diagnosed with Crohn's for eleven years this past December. I, as well as my family, think I have had it longer than that as I struggled for most of my junior high and high school with bowel and stomach problems. When I was half way through my grade 12 year I got so sick with what presented as flu like symptoms (fever of 103F while taking Tylenol, fever blsiters, red eyes from coughing, bloody stool, diarhea, ect) that I went to a couple doctors. The first told me it was the flu and to go home. I came back a few days later, to the hospital at this point, and he admitted me. They did an ultrasound and were so scared by my enflamed spleen that they rushed me to the Cross Cancer Institute in Edmonton Alberta, an hour and a half drive from my hometown. Once I got there, the doctor examined me, found my spleen was not as enlarged as they first suspected and then assumed it was Crohns because my dad had it. They put me on Salofalk and sent me home.
A year later I was in college in Camrose Alberta and the same thing happened. Friends rushed me up the U of A hospital, fear of what was going on. I met my specialist and the most amazing research nurse on the face of the planet. I remember the very first conversation we had as if it were yesterday. She told me my insides looked like hamburger meat and she was soory on behalf of the medical profession that they did not catch this condition sooner. They put me on my first dose of Prednisone and sent me back to college in a few days.
Those of you who have been or are on Predisone know what happens for most of us on that junk. It saves you from the pain, heals you but there sure are a truckload of side effects, right? Bloody noses, sensitivity to light, overemotional behavior, depression, weight gain and increased appetite, lack of concentration, athralgia, the list goes on and on. I hated it most of the time and swore I would never go on it again.
Through my second, third and fourth year of school i struggled and had a few hospital trips but NONE would top the trip I would have in the summer of 2008.
Now, I was luck until then, I would usually only get sick in what I was told were Crohn's disease 'low cycles' Oct-Feb. When its colder, the sun is out less, less Vitamin D, less activity, fruit isnt as fresh, lotsa reasons why its easier to get sick then. I got cocky in the summer. I was in denial. I didnt need meds, I could keep myself healthy. My disease wasn't THAT bad, right??
WRONG!!!! I was working 12 days straight, 12 hour shifts, no friends in Edmonton (where I had moved to go to school full time), and was struggling with how I was going to explain to my parents that I didnt want to do what I had wanted to do all my life as a career. Then, one of the teens I used to work with oeverdosed on my watch. I was a wreck. I beld for three weeks before I called my research nurse (who was on vacation at the time). She told me to go to the hospital so I did. They admitted me and I stayed there for three days, thought I was getting better until the third day. I was feeling tightness in my chest and called the nurse in. She took my blood pressure, left and the next thing I knew, 12 people were standing around my bed ripping off my gown, putting things on me and talking to me. They shipped me to ICU, I passed out on the way.
I woke up five days later with the same tightness in my chest. I started to cough and realized there was a tube down my throat. A man came running in and told me to help him take it out by coughing on his count. I was in the Intensive Care Unit at the University of Alberta. My parents arrived an hour later and we visited. They told me they were surprised I was talking as it usually takes a few hours to a few days after the tube is taken out (what can I say, Im a talker). I didnt realize how sick I was even at this point, I guess I was in a fog of the disease. It hurt to sit up, I felt nauseous but they made me. They made me get out of bed and pushed me to learn to rewalk (my legs had atrophied so bad I got severe leg cramps). My dad pushed and pushed me to pass every 'test' they put me through so I could leave the ICU. It took me five hard, long days to get out of ICU.
They put me on a regular wing of the hospital for a few more days. Thats when it kinda slipped from a family member that I just about died from my disease. The first night I was there, they told my parents I had a 10-15% chance of living through the first night. They also didnt know why this was happening and it took may tests to find out. They originally thought I had a heart attack but found out through many tests that an ulcer had perferrated my bowel wall and sent infection through my bloodstream and it evenutally attacked my heart. It was the first case of this that the doctors working on me had ever seen and some of them had been doctors for 25 years. I was basically septic and was told I was lucky I was already in the hospital cause if I would have waited any longer or been in another hospital where they did not have a Medical Emergency Team (MET) I would not have made it most likely. They thought I was going to have permanent heart damage and were baffled once again when the damage repaired itself somehow.
Over the next few years, the guilt slowly bubbled and boiled an eventually I became suicidal even off prednisone because of the guilt of what I put my family through. I decided three years after the incident happened that I should seek counselling (that was on a good day cause on a bad day I wouldda just ended it). I went to counselling for six months and went on anti depressants. Things got better, I quit blaming myself and quit asking "Why did I survive" with negative connotations and asked that in a positive light instead. Why did I survive this awful ordeal when the odds were so against me?? I still dont fully know or claim to understand but I am way more spiritual now than I have ever been. I am thankful I did make it and I make my life count.
This disease made me spend my seventeenth birthday in the hopsital, has taken away job opportunities, family members, and almost claimed my life. But despite all of that, it has taught me SO much and changed who I am SO prfoundly that I cannot imagine my life another way. I am not saying by any means this is a gift of some kind but there are positives strewn in between the negatives. It has taught me to say no, to let go of what doesn't really matter and has taught me what does. It has taught me how weak I am and how strong I truly am. My body amazes me almost everday. I hope my story can help someone else see the positive in their struggle too. Thank you for allowing me to share with you.
Welcome