One of the biggest setbacks of the Crohn’s rollercoaster is hospital roulette. Crohn’s disease complications are typically dehydration, blockages, hernias, and bleeding.
After my first hospitalization life changed dramatically. Life turned into a rollercoaster ride and my stomach was stuck on the Tiltawhirl. Unfortunately, the medical system has a major problem which I discovered only after obtaining my medical records years afterward.
From my first hospitalization in October of 1999 until the following fall my life was unbearable. Constantly in pain, I was in the emergency room regularly. Every time it was the same thing. They’d give me IV fluids and Vicodin and send me home. I’d make an appointment with my doctor, the doctor would give me some different medicine, and send me home.
They gave me all kinds of crazy medicines. I remember thinking why in the world are they giving me medicine for kidney transplant patients? It was like my doctor was throwing everything but the kitchen sink at me. At that time, I had no idea about “drug seekers” yet I was being treated as one.
My medical records from that time would read “patient appears more debilitated that test results show” yet they had only done one CT in October of 1998 and that was the test to which they were referencing. From October 1998 until August 1999 they did not do any tests, no CT’s or MRI’s. I got sicker and sicker, repeatedly visiting the emergency room only to be given IV fluids a few Vicodin and then released to follow up with the doctor; without ever having any new tests.
Finally, two weeks after I turned 21 I was at my wits end. After being released yet again on a Friday, spending Saturday lying in bed feeling like I was dying, and then Sunday crying for my mom take me back to the emergency room I was ready to fight for my life.
This time I demanded new doctors and new tests the moment I was wheeled into the emergency room. Within ten days they did surgery to completely remove my colon. Many complications followed because my colon was so severely damaged part of it was dying when they finally did the surgery.
I was released from the hospital after my first surgery, the next morning, I had to call my mother out of work to rush me back to the emergency room. I was actually dying on the table from dehydration. I remember my mom was trying to keep me talking. She could see my blood pressure was 60/40 and my heart rate was extremely high. It took three E.R. doctors to get a port into an artery in my chest.
It wasn’t the first time and it wouldn’t be the last time that my life was in jeopardy because of my illness. I grew accustomed to hospital roulette. Even driving myself and taking friends with me to sit and keep me company while they loaded me up with I.V. fluids before sending me on my way.
Not once during those years did I think, maybe there’s a better way to handle this, research was limited.