Lydia

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 28^th 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 6^th 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.