Marathon #41 – 26.2 for Annie
My IBD story is practically my life story because I was diagnosed with Crohn’s Disease in 1999 when I was nine years old. Before being diagnosed, I had a lot of stomach aches and would often get sick to my stomach out of nowhere. I loved school, was very active with sports and after school activities, but remember keeling over in so much pain I had to stop and sit down on my short 10 minute walk home from school. In addition to the pain I started to lose weight and stopped growing at a time when everyone around me was starting to have growth spurts and eventually go through puberty.
After an inconclusive Upper GI and finally a colonoscopy I was diagnosed with Crohn’s Disease in my small bowel. I went down the gamut of medications available at that time, from Flagile to Asacol, 6MP to Methotrexate, several rounds of Prednisone, and I was even in a couple pediatric clinical trials one of which was for Remicade, which I had an allergic reaction to, but I’m happy that it helps so many patients today. None of these medications were working for me, and I continued to lose weight in addition to being diagnosed with osteopenia, most likely because of the steroid use. I will say that throughout the worst of it in middle school I stayed active and involved in my after school activities and even went to multiple overnight summer camps and rarely let my disease get in the way of my activities.
In fact, I always felt my best when I was playing sports and the day before my first colonoscopy when I was fasting while at day camp, I played one of the best ice hockey games of my nine year old season, at least to my recollection. Eventually, after starting high school, a couple hospital trips due to severe pain and still not growing at age fourteen, my doctor decided it was time for surgery.
In August 2004 before going into my sophomore year of high school I had 85 cm of my small intestine removed right around my ileum where the small intestine connects with the large intestine. Before going into surgery I was 4’ 9” and weighed 60lbs. I went on Humira soon after surgery to keep me in remission, and the rest of high school was fairly smooth. I finally started growing when I was sixteen, and continued to grow throughout college (3” to be exact) and every cm I grew and pound I gained was a celebration. To this day I’ve yet to experience the level of abdominal pain I had before surgery.
My disease has always been affected by stress, from being diagnosed when my parents were going through a divorce to getting sick again in college while studying abroad in Costa Rica, after I got mugged at gunpoint (don’t worry, I was not hurt), my disease is always with me and part of my conscious, and most decisions I make revolve around how it is going to impact my stomach. I went to college for architecture, but quickly decided the first week of school that it was not the best decision because the stress of the major could make me sick again. I have no regrets, and know that everything that has happened in my life has made me the person I am today.
I do sometimes think of what my life would have been like if I didn’t take this detour, how I would have excelled at sports, in school, in social situations, but because of my disease I pursue a life that focuses on my mental and physical health and I try to focus on what I can do. I feel as though I’ve gained so much IBD knowledge that it is my duty to share it with others that are just starting on this journey.
I’ve been on just about every approved medication, all the pills, infusions and injections, and I am currently on Stelara every 6 weeks and I’m slowly decreasing my frequency. My last colonoscopy showed minimal inflammation and I’ve seen an incredible change in how I feel over the past year from changing my diet.
Since being a part of Team Challenge and learning so many other stories I feel extremely fortunate to have only needed one surgery and plan on keeping it that way to the best of my ability. I am moved by others I have met and their stories and have never met a stronger group of people. Thank you coach Marc for inspiring us and helping so many of us cross a finish line we could have never dreamt of crossing!
Running 26.2 for Annie!
Marathon 41 – Recap