I was first diagnosed with Crohn’s Disease when I was seven years old. I was sick for a long time before receiving my diagnosis. I was drove all over North Carolina and Georgia, being shaped like rag doll and carried by my family. I was malnourished and at that time, the arthritis was the worst. Then came the Crohn’s symptoms: diarrhea and excruciating pain. I took steroids and aspirin by the handful. I was carried by my teachers during second grade and missed many months of my third grade year. It was impossible for me to go to school so I stayed with my grandma most days. Finally all the meds came together and I was “healthy” again. The one thing I still remember is the delivery of hand made get well cards from my classmates. I’m sure no one in my class remembers those and I’m not sure if Mrs. Sharkey will remember them, but it meant more to me than anyone could have possibly know.
Other things I remember as a child:
- Having to share one bathroom as a family of five (and two brothers). Maybe that’s why I don’t take long in the bathroom these days???
- Having to use a towel in class in third grade to wrap up my legs because they ached so bad.
- Getting to eat french fries anytime I wanted at school because I rarely ate anything at all.
- Colonoscopy preps never got easier. I had to do a prep one day while working with my grandma and I just remember sitting on the golf cart (she worked at a golf course) trying not to puke my brains out.
- During the blizzard of 93 I tried to build a snowman but it ended up being so tiny because my stomach hurt so bad I couldn’t stay outside any longer.
- Figuring out that if I laid on my stomach with a pillow underneath me, the pain wouldn’t be so bad.
I’ve had many small flares since being first diagnosed but there are two major ones that stand out. The first came in college. I was having a really hard time getting around and my sciatic nerve pain was debilitating. I finally went to the doctor and after many xrays and an MRI the diagnosis was “I had the back of a 50 year old woman.” I was 20. That MRI revealed spondylitis, degenerative disc disease, and a partially collapsed disc among other things. I immediately started therapy which helped with the pain but like before, the Crohn’s symptoms appeared. I tried to live with it but the pain became too much to tolerate so I went in for a colonscopy. The doc’s words: “I don’t know how you’re still functioning.” My colon was so bad they couldn’t even get the scope through. I started to wake up part of the way through so they juiced me up and I don’t even remember leaving the hospital. At that point my insurance was terrible (aren’t all college student’s?) and I wasn’t covered for treatment. A doctor found a study at the University of Kentucky and after enrolling I was placed on the study drug, Imuran. It turned out to be a life saver. My immune system was shot but my Crohn’s symptoms disappeared. I had sinus infections after sinus infection and since I went to the doctor every week, they just kept writing prescriptions for antibiotics for me, since I would need them repeatedly.
During the study I was accepted to the University of Hawaii for graduate studies and I was had to leave the study. I clearly didn’t mind since I was moving to Hawaii! The first thing I did when I made it to Oahu was get insurance but because of the pre-existing condition clause I wasn’t covered. It started with small red bumps all over my body which I thought were bed bugs. Then I started to get this weird eye irritation. Then my knees started to ache and my achilles tendons were miserable. Then my back. Then every joint in my body. Then huge welts on my legs. At this point the doctors were dumbfounded and I was depressed. They thought I had some weird disease or infection (from swimming in the Ali Wai Canal, they had a sewage spill). I became bedridden, completely dependent on my then boyfriend (now husband). Finally they gave me steroids and my amazing rheumatologist got me on the right track. There came a turning point when I started to walk again. Then I started to run. But not until months had gone by. The first place we went when I could move well? The zoo.
In 2012 I joined Team Challenge, a fundraising program for the Crohn’s and Colitis Foundation of America. It has become my rock and those people, my fellow teammates, are now my family. I’ve never had a support system before this team and now I can’t imagine my life without them. I’ve become a vocal advocate for IBD patients and I’ll talk about my disease to anyone who will listen. Through word of mouth and advocacy, we can change our own future!