Marathon #46 – 26.2 for Lydia


Lydia’s Story:

After a procedure to correct sphincter of Oddi dysfunction in my pancreas, I experienced a life-threatening peritoneal abbess that months later led to a diagnosis of Crohn’s disease at 21 years of age. Within a year of diagnosis, I faced numerous abscessed fistulas, hemorrhaging, and severe abdominal pain and found myself in the OR many times a year all while I was finishing my undergraduate degree. I felt my life and my identity slowly slipping away.

I developed an allergy to the only medication that worked to keep the fistulas at bay and by the age of 25, I experienced my first bowel obstruction. I was quickly taken away to the OR and woke up with a temporary ileostomy. This was the beginning of what was almost the end of my life. My immune system went into overdrive, attacking and perforating my intestine anytime I ate food. This led to 106-degree fevers, more surgeries, 2 years of intermittent hospitalizations, living my life mostly in the hospital than out. The decision to reverse the ileostomy was made, but I still had too much inflammation in my gut to allow for a successful reconnection.

After trying any and every medication for Crohn’s and many unconventional treatments, the only treatment left was to not eat. I was deemed NPO (nothing by mouth) and lived on total parental nutrition (TPN) for a number of years. While on TPN, I suffered from pancreatitis, liver toxicity, and many other system malfunctions and resorted to palliative care. Realizing I probably would not see my 28th birthday, I began the process of acceptance. I felt cheated of a life I so very desired to live. I began to let go of my dreams, aspirations, and tenacious motivation to fight the disease.

At my lowest point, came an opportunity that was going to offer me a small chance at remission by hitting the reset button on my immune system through an autologous bone marrow transplantation (ABMT). I met the eligibility criteria by the skin of my teeth and became the 6th person in the world to undergo an ABMT for Crohn’s disease. The ABMT was by no means a walk in the park; it is still to this day, the toughest thing I have gone through in my life. I felt as though there was a war going on in my body. Crohn’s disease was not going to be quietly defeated and the chemotherapy, stem cell harvest, and the qualification tests and procedures substantiated the assault I felt I was under.

On December 23, 2002, I was discharged. I survived the ABMT!  The next 5 years were riddled with really good days and some really bad days as I experienced immune dysfunction, shingles, infections, and various viruses as my body began to rebuild and reprogram itself. Despite the challenges, I found not only my way back to eating food, but my tenacious motivation. Within 6 months of discharge, I had started back to school and in 2005, I returned to work.

My curiosity and adventurous spirit pushed me to pack my things and move from the Midwest to NYC where I pursued a clinical research career and then onto Washington DC where I served as a contractor for the Department of Defense in Navy Medicine. I now reside in Los Angeles where my experiences as a patient have driven me to pursue a career in the health sciences. I obtained my Masters of Health Science in 2010 and am currently pursuing a Doctorate in Health Science.

I am still in awe that I am here today, 18 years post ABMT, to share my story. I am in awe that 8 years ago, I bought a road bike and decided I could cycle a century and that I did. This disease has taught me many things, shown me that I am capable of great things, and most importantly brought so many incredible people into my life.

Marathon 46 – Recap

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