Like any story about illness, they usually begin with a moment in time where life was flipped upside-down. Whether it's a diagnosis, a lab report, or simply the realization that you are no longer yourself; there is a finite moment. While that finite moment may unfold over years, months, or seconds, I will always remember mine as the day I was diagnosed with Crohn's disease: January 15, 2002.
I was 17 years old. One month before I played in an all-city Field Hockey game. One month before, I accepted my offer from Michigan State to attend college there. One month before, I was a 17 year old whom everyone thought was invincible, myself included. But on January 15, thirty pounds lighter than my invincible self, I began the barrage of auto immune-fighting medications; each one producing its trademark side effects; the ones I was warned about, the ones I thought could not possibly be as horrible as anything I felt from Crohn's, the ones that still reverberate through my 30 year old body.
Asacol. Prednisone. Methotrexate. Imuran. Cimzia. Pentasa. Humira. Cimzia. Pentasa. Lomotil. Entocort. Remicade. Remicade. Again. Finally Tysabri. Signing my life over to Tysabri, known for its risk of developing Progressive Multifocal Leukoencephalopathy (PML) in a percentage that caused the FDA to pull the drug, twice, was my last ditch effort. I had reached the end of my rope. In time, only one drug, Remicade, allowed the word "remission" to be written in my health record.
On January 3, 2011 I had my colon and rectum removed and I was given an ileostomy. It was my third ostomy, the previous two formed to allow my bowel to rest after surgery, but this time it was permanent. For the next several years I struggled with leaks and skin irritation, to the point that I had my stoma revised in 2013. Around this time I also began researching the Barnett Continent Intestinal Reservoir.
On June 5, 2015, I had BCIR surgery with Dr. Ernest Rhenke at the Palms of Pasadena Hospital in St. Petersburg, Florida. You will find details of this journey here on my blog.
Ellen, I am so glad you're doing better after removing your surgery. I feel so bad to have not kept up with your journey over the past year or so. I've had a lot going on in my life, but I just want to know that I am so happy and proud of you!
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