My Story: “Gutless But Glamorous”
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The summer before I entered high school I started experiencing symptoms such as abdominal pain, diarrhea, and severe weight loss. At a time that is supposed to be new and exciting as a teenager, I was experiencing new feelings of hurt, pain and fear.
I was in fear because as my symptoms started to intensify and there was no getting around the fact that something was definitely wrong and getting worse progressively. I was desperately trying to hold on to being a normal teenager but I knew in the back of my mind that something was terribly wrong.
I knew that my pain was increasing and so severe that I needed something to help me get my life back. Little did I know that was never going to be the case again.
Life After Diagnosis
After a routine diagnostic group of tests I was diagnosed with a severe case of Crohn’s disease. I had no idea what to expect, but in hindsight there was absolutely nothing that the doctors could have told me to prepare me for the journey ahead. After diagnosis I tried my best to maintain a so-called normal life and cope with my new diagnosis.
I was immediately started on an extremely high dose of steroids and stayed on it for years. I started a chemotherapeutic agent and immunosuppressant. I became increasingly immunudeficient from all the medications I was on; I developed the shingles virus twice and I lost all of my hair. I stayed on these medicines for years in hopes that they would miraculously begin to start working and all my pain would disappear.
Each time I tried a different “promising” drug it was in hopes that my misery would subside. And after each drug failed me, my optimism began to fade. After exhausting all options, I had to have surgery.
I went into my first surgery with such high expectations; I was admitted to the hospital in hopes that this surgery would relieve me of my pain and all would be well. That was all but the case. After my first surgery all hell broke loose, I was the sickest I had ever been.
I began stints of constant hospital stays and procedures.
I began to suffer immensely with new symptoms.
I was constantly losing blood, was deathly tired and could barely get out the bed.
Shortly after that I had another surgery. I am not certain if I ever experienced a remission. Severe Crohn’s had become my norm. For over a decade, I adapted my life to live while being in excruciating pain some days and in pain most. I became oblivious to the fact my quality of life was gone.
My latest surgery I had a total proctocolectomy (removal of the colon and rectum) leaving me with a permanent ileostomy (opening in my belly).