Well, it started mid-March of 2011. I was 25, going to school full time to be a medical assistant, and working part-time as a nanny, while living at home with my parents after a nasty break-up and was just starting a new relationship. My stomach was in a constant state of pain, I had a fever, and I had diarrhea. My health insurance didn't go into effect until April 5th, so I was hoping it would go away on it's own, or I could put off seeing anyone about it for a couple of weeks. March 19th, I finally couldn't do it anymore, I went to the emergency room. My doctor took a CT scan, didn't diagnose me, and said "well, IF you had insurance, we would admit you." I was sent home with a bottle of Flagyl and a bottle of vicodin. I called my family doctor to follow-up with him a few days later. I didn't react to the medications at all, I wasn't eating, and my stomach had started extending. In a week's time I looked 9 months pregnant. I went back to the emergency room, only at a different hospital. I was admitted, and I tested positive for C-Diff. I was given IV fluids, Flagyl, and Percocet. They ran another CT scan. They did blood work. They sent me home after 3 days. No change. Went back to my doctor, who ordered another CT scan, and gave me more Percocet.
April 5th, my GP called my mom and said that if I had ANY change of symptoms to go to the emergency room. Well on top of the pain, the fever, the diarrhea, and the all-around fatigue, I started to vomit. "Off to the E.R. again" I thought, maybe morphine would make me feel better, and I could get some more fluids, it was basketball season in Indiana, and one of our colleges was in the top of the NCAA Championship, at least the tv would be good. They put an NG tube down my throat, hooked up an IV, and that's the last thing I remember. Then I woke up-10 days later.
From what I have been told, the emergency doctor who saw me, told me and my family that I had to have emergency surgery set for April 6th. They got an amazing colo-rectal surgeon to come in, and as she was operating on me, my colon was literally falling apart in her hands. She removed all but 6 inches of colon, and my appendix. While she was operating on me, I aspirated (threw up) into my lungs, and went septic. April 7th, I went into septic shock, placed into a coma, my fever was 105.2 degrees, they had to bring a special bed into the ICU to rotate me, I swelled up to twice my normal size, and then back down again, and I was hooked up to 13 different IVs. My mom was told to start calling family members and friends to say good bye. I was on the ventilator for 10 days, I don't remember most of it. I remember trying to rip it off whenever I tried to talk because it made an awful noise. I remember a select few people coming in and crying and holding my hand. I "woke up" on the 17th. I was told about the surgery, and about how I almost died. My first words were "I love you mom" followed by "cell phone please" I thought I was in another city, I made a phone call and had no idea what was going on, or where I was, apparently it was pretty humorous.
Then about 20 minutes later, a nurse walked in and said the words that I will forever hate her for: "Hi, my name is _____ and I am your ostomy nurse." No one told me that I had to have an ileostomy placed. No one told me that under all those bandages, was a bag of my own feces resting on my newly-scarred and stapled stomach. I wanted to punch her. I cried. I was in shock. I couldn't move. Why couldn't I move?! My muscles had atrophied during the course of the coma, and lifting my arm made me tired. I couldn't walk, I couldn't stand up. I was completely dependent on a nurse's call button and my mother. I was in the hospital for five weeks.
By the time I left I was 40 lbs lighter, I had somewhat come to terms with the fact that I had an ileostomy bag, that my surgeon had PROMISED to reverse it in a few months, and I could walk with a walker, after MANY hours of physical and occupational therapy. 8 days later, I was back in the hospital for dehydration and pneumonia, after 3 days I was sent home. I became stronger, and could walk without the walker, then I could do stairs. I had a nurse come to my house twice a week to monitor everything. I was told that no one had any idea what caused all this, except that it was toxic mega-colon, caused by C. Diff. They sent tissue samples to Mayo, Cleveland and a few other clinics and hospitals, no one knew. "Undetermined" became a word that I loathed more than anything.
In August of 2011 I finally had the ileostomy reversal surgery. Almost a year later, I still sleep with my hand on my right side of my stomach, where the scar is, out of habit of fear that it would start leaking. Flex sigmoidoscopies showed that everything was "fine" and it was just a freak occurrence. I very cautiously started to live my life again. I started going back to school in October, my diet was completely changed, but regular, I started to venture out of the house without my pajamas on, and go other places besides doctor's offices and my boyfriend's house. With the exception of some kidney stones and urinary tract infections, I had 8 months of normal.
April 20th, 2012, I had just gotten finished with my 160 hour internship at the VA hospital that afternoon. I was officially DONE with school. I knew that stress could affect my GI tract, so I decided that the stomach pain and the diarrhea that I'd been feeling for the last few weeks were justifiable, and I should probably rest up. I also rationalized the recent over-night stay that I had in the hospital to just over-stress and dehydration. I didn't move from my bed, except to go to the bathroom, for three days. I was in pain. I finally went to my GP, and without even looking at me, just at my vital signs (my blood pressure was 80/50, my temperature was 101.0, and I had lost 15 lbs in 3 weeks) he sent me to the hospital. I expected another round of fluids, maybe some antibiotics, a CT scan, some blood work, and a two-day stay. After 9 days, a flex-sigmoidoscopy, a biopsy of my arm because I had an odd-lesion appear there, as well as a few bumps that seemed to appear overnight on my shins, my doctor looked at me and said "we are transferring you to another hospital. We don't know if it's infectious or inflammatory, and we don't want to give you the wrong meds." I spent another 13 days at IU hospital, a teaching hospital that is supposedly one of the best GI hospitals in the country. It was the worst 13 days of my life due to conditions within the hospital, tests that kept getting cancelled or moved, they took me off all my pain meds for 10 hours to test if my blood pressure would go up, (it didn't) the fact that I couldn't eat anything for the tests, I couldn't trust the nurses, and the room was the size of a postage stamp, and I had to share it. With crazy people. I had another sigmoidoscopy, an endoscopy, a capsule-camera, an MRI, and was stuck more times than I could ever count for blood work. Finally, the day I am about to go home, my team of GI specialists come in and tells me "Well, we know its IBD, but we don't know which it is. Here's some steroids, you have an appointment with an IBD specialist in a week." Great. Thanks.
My IBD specialist is amazing. May 23rd, I went to see her with some hesitation. I didn't want another doctor telling me "undetermined". She looked at the picture of the first flex sigmoid I had from the first hospital and says after 30 seconds, "Oh so you have SEVERE Crohns Disease" Oh. She spent over an hour with me, going over everything. She explained I probably had the predisposition to Crohn's, and last year's toxic mega colon brought it to surface. Right now, it's just in what's left of my colon. I know now the biopsy they took of my arm was for an extraintestinal manifestation of Crohn's that was weirdly enough on my arm. I kept getting kidney stones because of Crohn's. It just fell into place. She put me on Imuran, and told me to wean off Prednisone, and I am going to start Remicade infusions within the next week or so. I've noticed that since I've now weaned myself down to 20 mg of Prednisone a day, that my symptoms are coming back within the last few days. I didn't realize that the joint pain from Imuran was going to be so severe, until I couldn't move out of bed for two days. I'm more concerned with the side effects of the Imuran than anything, especially mixing it with the Remicade. I've also developed anemia, so I'm getting B12 injections on a weekly basis. I missed my graduation because I was in the hospital, which was actually more for my step-dad than for me, as he was just diagnosed with terminal cancer in March, and it was something that he wanted to see me complete. So now I'm an unemployed medical assistant, and I can't be around any live vaccines while on Imuran. This poses a problem with my career choice. Any suggestions?
April 5th, my GP called my mom and said that if I had ANY change of symptoms to go to the emergency room. Well on top of the pain, the fever, the diarrhea, and the all-around fatigue, I started to vomit. "Off to the E.R. again" I thought, maybe morphine would make me feel better, and I could get some more fluids, it was basketball season in Indiana, and one of our colleges was in the top of the NCAA Championship, at least the tv would be good. They put an NG tube down my throat, hooked up an IV, and that's the last thing I remember. Then I woke up-10 days later.
From what I have been told, the emergency doctor who saw me, told me and my family that I had to have emergency surgery set for April 6th. They got an amazing colo-rectal surgeon to come in, and as she was operating on me, my colon was literally falling apart in her hands. She removed all but 6 inches of colon, and my appendix. While she was operating on me, I aspirated (threw up) into my lungs, and went septic. April 7th, I went into septic shock, placed into a coma, my fever was 105.2 degrees, they had to bring a special bed into the ICU to rotate me, I swelled up to twice my normal size, and then back down again, and I was hooked up to 13 different IVs. My mom was told to start calling family members and friends to say good bye. I was on the ventilator for 10 days, I don't remember most of it. I remember trying to rip it off whenever I tried to talk because it made an awful noise. I remember a select few people coming in and crying and holding my hand. I "woke up" on the 17th. I was told about the surgery, and about how I almost died. My first words were "I love you mom" followed by "cell phone please" I thought I was in another city, I made a phone call and had no idea what was going on, or where I was, apparently it was pretty humorous.
Then about 20 minutes later, a nurse walked in and said the words that I will forever hate her for: "Hi, my name is _____ and I am your ostomy nurse." No one told me that I had to have an ileostomy placed. No one told me that under all those bandages, was a bag of my own feces resting on my newly-scarred and stapled stomach. I wanted to punch her. I cried. I was in shock. I couldn't move. Why couldn't I move?! My muscles had atrophied during the course of the coma, and lifting my arm made me tired. I couldn't walk, I couldn't stand up. I was completely dependent on a nurse's call button and my mother. I was in the hospital for five weeks.
By the time I left I was 40 lbs lighter, I had somewhat come to terms with the fact that I had an ileostomy bag, that my surgeon had PROMISED to reverse it in a few months, and I could walk with a walker, after MANY hours of physical and occupational therapy. 8 days later, I was back in the hospital for dehydration and pneumonia, after 3 days I was sent home. I became stronger, and could walk without the walker, then I could do stairs. I had a nurse come to my house twice a week to monitor everything. I was told that no one had any idea what caused all this, except that it was toxic mega-colon, caused by C. Diff. They sent tissue samples to Mayo, Cleveland and a few other clinics and hospitals, no one knew. "Undetermined" became a word that I loathed more than anything.
In August of 2011 I finally had the ileostomy reversal surgery. Almost a year later, I still sleep with my hand on my right side of my stomach, where the scar is, out of habit of fear that it would start leaking. Flex sigmoidoscopies showed that everything was "fine" and it was just a freak occurrence. I very cautiously started to live my life again. I started going back to school in October, my diet was completely changed, but regular, I started to venture out of the house without my pajamas on, and go other places besides doctor's offices and my boyfriend's house. With the exception of some kidney stones and urinary tract infections, I had 8 months of normal.
April 20th, 2012, I had just gotten finished with my 160 hour internship at the VA hospital that afternoon. I was officially DONE with school. I knew that stress could affect my GI tract, so I decided that the stomach pain and the diarrhea that I'd been feeling for the last few weeks were justifiable, and I should probably rest up. I also rationalized the recent over-night stay that I had in the hospital to just over-stress and dehydration. I didn't move from my bed, except to go to the bathroom, for three days. I was in pain. I finally went to my GP, and without even looking at me, just at my vital signs (my blood pressure was 80/50, my temperature was 101.0, and I had lost 15 lbs in 3 weeks) he sent me to the hospital. I expected another round of fluids, maybe some antibiotics, a CT scan, some blood work, and a two-day stay. After 9 days, a flex-sigmoidoscopy, a biopsy of my arm because I had an odd-lesion appear there, as well as a few bumps that seemed to appear overnight on my shins, my doctor looked at me and said "we are transferring you to another hospital. We don't know if it's infectious or inflammatory, and we don't want to give you the wrong meds." I spent another 13 days at IU hospital, a teaching hospital that is supposedly one of the best GI hospitals in the country. It was the worst 13 days of my life due to conditions within the hospital, tests that kept getting cancelled or moved, they took me off all my pain meds for 10 hours to test if my blood pressure would go up, (it didn't) the fact that I couldn't eat anything for the tests, I couldn't trust the nurses, and the room was the size of a postage stamp, and I had to share it. With crazy people. I had another sigmoidoscopy, an endoscopy, a capsule-camera, an MRI, and was stuck more times than I could ever count for blood work. Finally, the day I am about to go home, my team of GI specialists come in and tells me "Well, we know its IBD, but we don't know which it is. Here's some steroids, you have an appointment with an IBD specialist in a week." Great. Thanks.
My IBD specialist is amazing. May 23rd, I went to see her with some hesitation. I didn't want another doctor telling me "undetermined". She looked at the picture of the first flex sigmoid I had from the first hospital and says after 30 seconds, "Oh so you have SEVERE Crohns Disease" Oh. She spent over an hour with me, going over everything. She explained I probably had the predisposition to Crohn's, and last year's toxic mega colon brought it to surface. Right now, it's just in what's left of my colon. I know now the biopsy they took of my arm was for an extraintestinal manifestation of Crohn's that was weirdly enough on my arm. I kept getting kidney stones because of Crohn's. It just fell into place. She put me on Imuran, and told me to wean off Prednisone, and I am going to start Remicade infusions within the next week or so. I've noticed that since I've now weaned myself down to 20 mg of Prednisone a day, that my symptoms are coming back within the last few days. I didn't realize that the joint pain from Imuran was going to be so severe, until I couldn't move out of bed for two days. I'm more concerned with the side effects of the Imuran than anything, especially mixing it with the Remicade. I've also developed anemia, so I'm getting B12 injections on a weekly basis. I missed my graduation because I was in the hospital, which was actually more for my step-dad than for me, as he was just diagnosed with terminal cancer in March, and it was something that he wanted to see me complete. So now I'm an unemployed medical assistant, and I can't be around any live vaccines while on Imuran. This poses a problem with my career choice. Any suggestions?
