I wrote this on my facebook the other day.
I never really wrote out my complete experience with Crohn's disease before. Some of you have known me long enough to know how good and bad I have had it. Some of you met me while in remission and never really knew I had a problem till recently. I need to write this out because I have so much going through my head right now.
I was about 17 years old when I started having some symptoms here and there. I noticed that certain foods did not agree with me. For as long as I remember I have always had somekind of abdominal pain so I just thought it was normal. When I was about 17 I started noticed blood when I went to the bathroom. Again I didnt really think anything of it. It wasnt until I started waking up drenched in sweat from pain that I realized that something must be wrong. So I went to the doctor. He wanted me to collect a stool sample and I was totally pissed. I almost threw the sample kit in the garbage because I was distgusted at the thought of it. lol. When that test came back positive for blood but negative for parasites they wanted to send me for another test. "YOU WANT TO PUT A CAMERA WHERE!?!" I stormed off. I kept the appointment but hoped I would magically get better in the mean time.(I must have thought beer and cigarettes were the cure) In this province it takes about 3 months to get a colonoscopy. I did not make it to that appointment. I checked myself into emergency because I could not sleep through the pain and I was losing a lot of blood. When I was done the scope, the nurse came in and said "I am sorry but you have crohn's disease." I felt relieved to have a diagnosis and I didnt understand why she was sorry.
I saw a specialist. He put me on some mild meds and sent me on my way. I was 18 at this point and felt really cheated. In Alberta 18 is legal age and I just wanted to party with my friends. So I did what any mature smart 18 year old would do. I partied my ass off. I went on like that for about 5 years. In that time I never really achieved remission. I just toughed out the symptoms and smoked a lot of weed and had a lot of "fun". I was hospitalized for flares here and there. I would feel better for a couple months, go back to my wicked ways and flare again. I just thought there was no point in trying because crohn's is forever after all. I may as well have fun because at the end of the day I still have this disease and there is no cure.
Fast forward to my "Final" year of college. I was 22 at the time. It was about 8 weeks before graduation during reading week. I had felt really cold. Like really cold. My mouth was covered in sores and I felt really weak and I was bleeding a lot. I felt cold because I had a fever. I had an infection in my bowel. I went to the emergency room and they checked me in. They did a scope and a CT scan. I was severely flaring. They pumped me full of IV steroids and antibiotics. I was supposed to go back to class in a few days and by the end of the week they let me go home. It was just in time to return to school and I was relieved because it meant I could finish my program and graduate. I returned to class. I was feeling bloated and swollen from the steroids they had pumped into me. I was still a little sore but I had some labs that had to be done so I could graduate so I was working hard to finish. I felt this weird pop in my abdomen. It hurt a little but I didnt think anything of it and I went home. I get home and they pain is getting worse and worse. I figure if I can just sleep through the pain I will feel better by morning. So I popped a couple ativan and laid down. The pain is too bad and I cant sleep. All of the sudden I rush to the bathroom. I am sitting on the toilet and puking in the tub. When I was done I felt this chill overcome me. It was the worst chill I have ever felt. So i hopped in the bathtub and ran the hottest bath I could possibly run with out burning myself. I make it to the couch and I am shaking and vomiting and I cant move. At this point my brother comes home. He realizes I am burning up and calls me an ambulance because I just could not move.
I get to the ER and by this time I am writhing in pain. I cant help but scream and scream. They give me some painkillers and they do NOTHING. I called the nurse some terrible names and called her a liar. I did not believe they gave me anything for pain because it did not even take the edge off. I am screaming and screaming and I want to die. They get me into a CT scan but they cant really get a good picture because I cant stay still enough. Finally they can see what happened. My bowel has absessed and perforated. Feces and toxins have spilled out into my abdominal cavity. The nurse tells me if I am lucky I can keep my rectum. "Are you effing serious?! What the hell is that supposed to mean?!" The surgeon comes in to quickly consult with me. He tells me I need an emergency colostomy. I tell him that I would rather die. I am so desparate to end the pain at this point that when they put me out I breathe as deep as I can and hope that I never wake up again.
I wake up in the recovery room with a nurse telling me to breathe deeper or she will have to intubate me. Damn it, I think, I made it. I have tubes coming out of everywhere and I mean everywhere. I also have my best friend, a little morphine machine that lets me give myself morphine every 7 minutes with the push of a button. They roll me into my room and I cant even talk because I have a tube going up my nose and down the back of my throat. Its to suck the bile out of my stomach which I could see in this lovely bucket beside my bed. I have a catheter and some IVs. A nurse comes in to check on my incision. I have about 50 staples going down the middle of my belly and a bump that looks like the inside of my mouth. She explains that its my ostomy and I now have a "bummy on my tummy". Oh god I am in hell. For 8 days all I could have was ice chips. No glucose because it would make my digestive system work, just saline and medication. My body ate itself in those 8 days. I was a skeleton when it was all over. I was so weak if I dropped something, when i went to the floor to pick it up I could not stand back up. After 2 weeks in the hospital I was allowed to go home with the assistance of homecare nurses. I now have this bag of poop hanging off my abdomen that I have to learn how to change and take care of. I wanted to die and thought about ending it often. I have no control over that bodily function anymore. All kinds of lovely noises came from the bag and I did my best to muffle them but it was embarassing. In 6 months I would find out if I was well enough to have the ostomy reversed. I now understand why I was lucky to still have my rectum. The reversal was just as hard as the first surgery. Just as many tubes, just as much pain.
As you can imagine, I didnt get to graduate. I had to go back and do the entire semester all over again. I needed a job to be able to finish school. I graduate but I have one more flare shortly after. It was so bad that I almost need surgery AGAIN. After the last surgery I had resolved to take better care of myself but I was still smoking if you can believe it. I just did not want to let that go. Typical smoker logic as my husband likes to called. After this flare I decide to quit smoking for good. I am 24 years old at this time. I started eating healthy. I weaned myself off all my meds and I meet my husband. I am in remission and I feel great. No pain. I never knew what that was like. I thought daily pain was normal at this point. It was so liberating to feel no pain. I had a couple minor hiccups along the way but that remission lasted me 4 years. I had met my husband, had a baby got married and bought a home. I went off and learned to snowboard, started hiking and rollerblading and had many good times.
Last August I turned 28 and I started noticing not feeling so well. I had kept my crohns at bay naturally for this long I thought I could help myself if I just tried enough things. In spite of my efforts I am flaring badly. I had a scope last week and my crohns is severe and fistulating. This is not what I wanted to hear. My GI specialist thinks my only hope right now is Remicade. Its expensive and risky but my only other option is surgery, which I never want to experience again. So hear I am taking prednisone, Immuran and waiting for my first remicade infusion. This sucks because I have to put my life on hold. I really wanted to have another baby. Now I dont know what the future holds and I am scared. I am not dealing with this very gracefully. I feel like I am mourning and the steroids dont help the mood. Sometimes I have the drug commercial fantasy of being able to hike and camp and move on with my life after the infusion and sometimes I wonder if I will die. Extreme maybe but I almost died a couple times before. If you have read this I commend you for hanging in there, because it was long and full of fear and loathing. I just keep telling myself "I can do this." but sometimes it feels like a lie.
