Marathon #18 – 26.2 for Claire
I was diagnosed with Crohn’s disease on August 23, 2003. I was newly 13, on the cusp of my freshman year of high school, and had just usurped my parent’s attention on what would have been my younger brother’s 10th birthday. He still isn’t pleased that just as he was turning “double digits” I was diagnosed with a chronic autoimmune condition…little brothers never change!
This diagnosis was after a colonoscopy, but also after 2 years of holding steady at 80 pounds, painful cramps, extreme fatigue, 15+ trips to the bathroom/day, and more. The pediatric GI who officially diagnosed me was optimistic that I could treat this through oral medications, diet modifications and some serious steroids. Therefore, a little girl who loved ice cream and cereal had to cut out dairy and sugar, started swallowing 13+ pills/day, and ballooned up like a giant marshmallow on 60 mgs of prednisone/day. Braces, a pumpkin-head and a new disease my friends had mistakenly heard as “Chrome” Disease was not how I envisioned entering the glamorous halls of high school.
After a year of the moon-face, having to quit all sports teams due to my extreme fatigue and lack of bone density (12 months of prednisone + no dairy = shin splints, stress fractures & early onset osteoporosis, who knew?!) and I was finally seen by a more experienced GI. This GI team quickly switched me to a biologic and tapered me off of the steroids and my body deflated.
Over the years I switched from biologic to biologic, as my body “caught on” to what we were doing and “fought back” against the medicine that was trying to save me. I had my first surgery, a bowel resection, the month after I graduated from college. The entire second semester of my senior year I was in agony but told my doctors I WOULD graduate ON TIME and not leave early for a surgery. After this initial resection I was in a pretty solid remission until…I wasn’t. All of a sudden I could only eat the “BRAT” diet. No alcohol, no dairy, no sugar, no red meat, no spices, no veggies…and I had just become a manager at my very intense sales job in tech. The one indulgence I allowed myself was french fries….french fries, bananas, rice, applesauce and toast was my diet for ~9 months until my GI told me I needed to seriously consider having my entire colon removed and living with an ostomy bag. I still remember seeing my best friend in December and updating her on this development. I shook my head and said that an ostomy bag would be “social suicide”. I was 25 and had nooo time for an appliance that would collect waste outside of my body!!! NO THANK YOU!
Well, my colon had other plans and on February 1 I was admitted to the hospital with a 105 degree fever and left 2+ weeks later with no colon (or appendix, they took that out for good measure) and a permanent ostomy bag.
I’ve learned to appreciate and love my ostomy bag. It was NOT EASY, the first 6 months were a hellacious struggle to adapt and learn how to dress, what to eat, how often to change my bag, what to do if there was a leak. Everything that could go wrong, DID. At one point I was flying from NYC to SF with the entire management team from work and my bag leaked, in the air. We almost had to ground the plane because it was such a bad situation. Luckily my coworkers were very understanding and for lack of a better word “cool” about the whole ordeal.
Now, I can go on rafting trips and long car rides without panicking about the closest restroom. I can eat without pain (well, most of the time!). I can actually workout without sprinting to the bathroom 10 minutes in. I wear 99% of the outfits I wore before the surgery, bikinis included! Most importantly, I’ve learned not to be afraid of discussing my bag and have embraced all it’s given back to me. Freedom to roam, freedom to be at a concert and not internally stress about how long the line for the bathroom will be, freedom to have a glass of wine and not worry that it will give me 3+ days of insane pain.
I’m really lucky to now work for the Crohn’s & Colitis Foundation and to mingle with patients every day! It’s so rewarding, and I hope to continue to bring awareness to these painful diseases. My youngest brother (not the one whose birthday I stole, the other one) was diagnosed with Crohn’s 4 months after my full colon removal but is doing SO WELL because he immediately knew to speak up about his pain/frequent trips to the bathroom, and we knew to take it seriously and get him scoped ASAP. 3+ years later and he is in remission and can live the life he really wants, all because we caught it very early.
Hopefully these pictures and this story inspire someone to go see their doctor, speak up about how they’re really feeling, consider a surgery they thought would be “the worst”, and realize that things WILL get better, even if they seem miserable at this exact moment.
Running 26.2 for Claire!
Marathon 18 – Recap