Marathon #30 – 26.2 for Natasha
My name is Natasha and I have Crohn’s Disease. Anytime I write or say that I feel like I’m confessing a big secret, but the truth is, it’s not a secret…in fact, it’s just a big part of my life and has been since I was diagnosed at 11 years old.
Crohn’s did not start suddenly; it was not like a light switch was turned on or my body decided to become sick one day, instead my symptoms developed over time. We would learn as I got older that my symptoms started when I was somewhere between an infant and a toddler, however my most aggressive symptoms began after the family moved to New York at age 10.
I remember our first year in this new state, I didn’t feel good but I couldn’t explain why, and yet that was nothing compared to my first year in junior high. Sixth grade was a nightmare. I was in a brand-new school, trying to make new friends and constantly in the nurse’s office trying to explain this stomachache that had me doubled over in pain. As the school year progressed, my skin developed a green hue as I slowly stopped eating. My mom took me to three pediatricians who suggested useless remedies and pointless ailments – one even thought I had Montezuma’s Revenge. After a family snowboarding trip to Park City, Utah where I was too weak and sick to do my favorite activity, my mom knew something was wrong.
She took matters into her own hands and started calling pediatric gastroenterologists throughout Westchester County and New York City. The top doctor at Mt Sinai hospital in NYC had an opening at the end of April, and my mom knew I was too sick to wait for that appointment. Luckily, she found a doctor at a different hospital who was able to see me the following week. My mom had sworn off driving in NYC, but as soon as my health and life was in jeopardy, none of that mattered. She picked me up from school and rushed me into the hospital.
That whole day and week was a whirlwind. The GI had us schedule my first set of scopes for the following Monday and threw a lot of medical jargon at us that overwhelmed me. He then had to draw blood that I was not pleased with him for.
The following Monday, my mom and I took the train into the city. I remember collapsing in Grand Central Terminal from being malnourished and fatigued and a kind stranger helping my mom carry me up the stairs so we could catch a cab. At the hospital, with a nervous stomach, the nurses let me my mom stay with me until I fell asleep. Sometime later, I woke in a haze to the words “you have Crohn’s Disease.” This was March 29th, 2004 and my mother’s birthday.
At 11 years old, I could not begin to imagine what this diagnosis would mean for me; I barely understood what a chronic disease was at the time. But that is what I have, a chronic disease.
Being an adolescent with Crohn’s was by no means easy. Being a teenager with severe Crohn’s was a lot worse. By the time I was 15 I had failed every Crohn’s medicine I was eligible for. I had already begun medicine trials – meaning I was put on medicines being researched as a possible treatment for those like me and was on my second GI. Shortly into my sophomore year of high school, my doctor sat me down and told me I was out of options and it was time to discuss surgery.
Surgery is its own can of worms. There is always a chance once you have surgery, you could need more. But that was not something I could think about as my doctor needed the diseased GI tract removed quickly, before I got worse.
In November of 2007, I had my first surgery and learned a lot about what strength and resilience means.
Having a chronic disease, like Crohn’s, can limit you if you let it. Since my first surgery I have had 9 more – with 3 being in the last year, and have even received a permanent ileostomy name Ziggy stoma. Constantly having surgery is a different type of draining on the body, it’s emotionally draining and physically draining. The fatigue becomes cyclical as you finally heal just to go into the operating room again. Yet, that is why I continue to live.
When I’m in chronic pain or dealing with chronic fatigue, it is easy to let it consume you and hide from the world. However, with a chronic disease, we also learn how to appreciate the little things in life and how fleeting life is.
During that first surgery I learned of a new endurance program the Crohn’s and Colitis Foundation was creating called Team Challenge. For me, it began with half marathons and has evolved into much more. I started participating in these programs to prove to my body and myself that while I can be in pain, pain is temporary and I am the only one who sets my limits.
Team Challenge is where I was lucky enough to meet Coach Marc. We have lost track with how many events we have participated in together and I am so proud of his 26.2 For You initiative. I can’t wait to run alongside him one day soon and complete my first 26.2.
Running 26.2 for Natasha!
Marathon 30 – Recap