Burke

In the fall of 1990, at age 16, I started experiencing symptoms of Crohn’s Disease while attending a ski academy in Vermont. I was a teenager working out four hours a day, and initially thought my symptoms: stomach pain and night sweats were not out of the norm. It was not until spring of 1991, when I started experiencing intense pain and weakness that I realized something was not right. To complicate matters further, I was living four hours from my parents. On spring break while home, I went to see my primary care who initially did not think my symptoms were anything more than the stomach flu. Upon returning to school, I suffered an intense bout of pain that caused me to double over in pain. I was immediately sent for a series of tests at the local hospital in Vermont. Over the next few weeks, I drove back and forth to the hospital to undergo tests without an adult present. The doctor initially thought it was gallstones and surgery was scheduled. After one last test, the doctor determined that the symptoms were Crohn’s disease. Once home my parents immediately took me to a gastroenterologist who confirmed after an endoscopy that in was in fact Crohn’s disease.

The summer after my diagnosis was difficult and challenging, as the only medication available was prednisone. Every day was a battle to be able to eat without pain.  I needed to get my strength back and was determined to get back to Vermont for my senior year. The next six months were challenging, but decided to return to ski academy and push through my symptoms in order to return to the hill and compete in the winter.  

Over the next five years, I was able to keep my symptoms under control and live a relatively normal life in prep school and college. I played sports and spent a semester abroad in Australia. Unfortunately, my symptoms reemerged in law school. As I approached graduation, I once again faced intense symptoms. I pushed myself to study for the bar, but ultimately on the morning of the exam, was violently ill. I decided to take the exam, but knew it was unlikely that I would pass.  My first hospitalization was shortly after the exam. It took me three years to be able to finally successfully pass the bar exam. 

In the summer of 2002, while flaring, working, and studying to take two bar exams, I contracted Listeria. Listeria attacked my weakened body and formed abscesses on the motor strip of my brain. I started experiencing difficulties with speech and loss of motor skills.  After eleven hours in the emergency room, I was admitted to the hospital for the first of two stays. During the first admittance, I spent my days in the intensive rehab unit undergoing daily speech, physical and occupational therapy. Once deemed healthy enough to be released, I left the hospital with a pic line to administer four daily doses of antibiotics. I hoped to be able to move forward and never have to step inside a hospital again. Unfortunately, my recovery did not go as smoothly as I hoped. As part of here post hospital routine, I drew blood from the pic line for testing and monitoring. One day, while at work my mom received a phone call from my doctor instructing my mom to get me to the emergency room as soon as possible. My platelet count dropped to a critical level, and I was within hours of bleeding to death. Thankfully, they were able to administer a blood transfusion and stabilize my platelet count. The next four months were a low point in my life, as I was forced to live with many restrictions in addition to constant tests and therapy.  My personal and professional life suffered, but I was determined to get back on my feet. 

In 2005, after months of consulting with specialists, and both my gastroenterologist and I fighting with the insurance company, I started taking Humira. Since that time, my Crohn’s disease has been under control, but I have contracted many challenging illnesses such as shingles, mono, and c-difficile. 

Since 2006, I have participated in Take Steps, Race in Orange and Team Challenge. Each year my support has only grown, which fuels my desire to keep challenging myself physically.  Team Challenge is an amazing and supportive community of patients and caregivers. Over the years, I am blessed to have family and friends join me on walks and bike adventures. In honor of my 50^th birthday, I am committed to riding my first century (100 miles) while participating the Spellbound Century in late July with the support of my friends. Our small team comprised of patients and family are going to power through the event, while raising money for Crohn’s and Colitis. 

Marathon #78 – Recap