Cara

Throughout my twenties, I would experience terrible episodes of stomach pain that doctors told me were caused by stress. When I was 27 and studying for the bar exam, I was really sick, and I saw a GI for the first time. They suspected Crohn’s Disease, but I didn’t have health insurance and couldn’t afford a colonoscopy. My symptoms improved, so I assumed it was the stress of the exam, just as I’d been told over the years. 

Eight years later, I was weaning my first baby and ended up in the ER with what I assumed was appendicitis. A resident surgeon told me it was a small bowel obstruction probably caused by Crohn’s disease and I would spend the rest of my life getting surgeries. Two weeks later, the diagnosis was confirmed and I was terrified. It was difficult to find a gastroenterologist with availability or to schedule my first Remicade infusion in Northern Vermont where I was living due to a lack of providers. I kept going back to the ER vomiting and in pain, so I started driving three hours to Boston for treatment. (Thank you MGH!) These drives were long and lonely as I left my appointments and I had to confront my own ableism and the false idea that anything less than “perfect” health is bad or somehow your fault. 

I tried so many restrictive diets, and I gained and lost 20 pounds twice over two years – in a way I was trying to punish myself for causing my disease and I was caving to pressure from others who don’t understand Crohn’s at all. Between the prednisone and raising a young child, I was exhausted and felt like I was living in a shell of myself.  My family moved to Maine, which has been a fresh start. Meanwhile, my liver signs went downhill on the Remicade, so I had to stop.  

Stelara worked okay until last April, when I went back to the ER with another small bowel obstruction. These episodes come out of nowhere for me, with sometimes only joint pain to clue me in that something is wrong. As a mom, I often feel guilty about being gone for appointments or needing to rest. I don’t want my daughter to worry about me. The last year has been more trial and error with medication, lots of pain and tiredness and frustration, but working with CCF helps put my disease in perspective too. I’m fortunate to not have had any surgeries but I’m not afraid of them anymore. 

On October 25, 2023, I was at our statewide prosecution conference when we received the call that dozens of people had been shot and many killed in Lewiston. I coordinate our statewide victim advocacy program and arrived there 12 hours later. I was in the midst of an uncontrolled flare and overwhelmed on so many levels. For three weeks straight working 16-hour days, I lived on liquid nutrition, knowing that no matter how inflamed my intestines might become under the stress, if I didn’t eat solid food, I couldn’t get sidelined by an obstruction. Five days after the shooting, I had to take a break to get my first infusion of Skyrizi. On the way there, I stopped to swim in the cold ocean with my friend and cried.

My story is still being written, but reflecting in this moment, I can say that I am transformed and a better person because of my disease. I am resilient, and I know how to sit with grief and disappointment and loss. I know that I can do hard things (like running Falmouth in 80-degree heat!), and I am setting an example for my daughter. And I have determined not to allow some of the harsh waves that come with Crohn’s prevent me from experiencing all that life has to offer, the good and the bad. There is so much my body can do— even if it needs more rest or can’t digest raw vegetables sometimes. 

Marathon #74 – Recap