By Cara Gagne, as told to Hallie Levine
I will never forget that moment over 15 years ago when I learned that I had Crohn’s disease. It hadn't been an easy diagnosis. I was a sophomore in college who'd been sick for 6 months with almost constant diarrhea and nausea. I didn’t understand what was going on with my body. I was young, seemingly healthy, and on my school’s field hockey team.
When my doctor told me, I burst into tears. Was this something I could live with? Would I be able to date, hold a job, get married? I felt so terribly frightened -- and so terribly alone.
I often wish I could go back in time to January 2004 and hug that girl who sat trembling with fear in her doctor’s office. I would tell her that even with Crohn’s disease, you can have a fulfilling career you love, a life partner who adores you, and do plenty of activities that fill you with joy.
I can’t do that, obviously. But I can share with other newly diagnosed Crohn’s patients some of my own life journey, what’s helped, and how, thanks to advances in science, there are so many drugs available to allow you to still achieve many of your goals in life.
Don’t Ever, Ever Lose Hope
It’s easy to say that you have to put on a positive mindset and power through. But truly, when you have Crohn’s disease, there are no other options.
The condition comes with so many uncertainties. There’s no way to tell if you’ll respond to a certain treatment, for example. What worked for the other members of your virtual support group might not do anything for you. Each person’s body reacts so differently to the disease and the various therapeutics available, that you really need to stay focused in your own lane and pay attention to what works for you.
It was so hard for me those first couple years. I was always this bubbly, energetic person, and I just felt so sick and exhausted all the time. I went into a deep, dark place of depression. It just seemed like I’d feel like this for every day for the rest of my life.
What helped was forcing myself to be open to close family and friends. I have an identical twin, Candice, who thankfully does not have Crohn’s disease. But she’s essentially part of me, and I feel so comfortable talking to her about all the embarrassing aspects of the condition that I’d never confess to anyone else.
She, in turn, gives me hope. She works in pharmaceuticals and is always reminding me to have faith in science. There may not be a cure now, but there are drugs that dramatically reduce symptoms. And there are always new treatments on the horizon.
Keep Trying New Options
Speaking of drugs, don’t be discouraged if you have to go through several different treatments before you find the one that’s best for you. Don’t be surprised if a medication initially works, then stops, and you have to switch to a new one. This is all part of what life is like when you have Crohn’s disease.
When I was first diagnosed, I was just given these big steroid horse pills that didn’t do anything. But when I transferred to a new school, I saw a new doctor, who switched me to a biologic. That was a miracle drug for me for a while. Then after a couple years it stopped working. So I switched to another biologic, and then, in January 2020, to a third kind. This last switch changed my life.
I was able to become physically active again. I finally no longer felt like I spent all day, every day running to the bathroom. It’s like going shopping for your wedding dress. You may end up visiting several different stores, and trying on umpteen different styles, before you find the one that fits you to a tee.
Yes, You Can Find Love
I met my husband, Olivier, in 2013, on the rooftop of a Manhattan restaurant while having brunch with my girlfriends. Sounds romantic, right? It was, despite the hesitation I always felt initially when I first started to date someone new.
What I noticed about Olivier right away, which gave me hope, was that he was good at listening and asking questions. Still, I don’t think he understood the seriousness of my Crohn’s disease at first.
It wasn’t until I became quite ill during a flare, and my mom had to come to New York to take care of me, that he realized how life-altering Crohn’s disease really is. But once he did, he threw himself into understanding the condition and all the things we would face in life together. We got married in May 2017.
Olivier is truly a blessing to me. It’s hard to have a partner in this disease. It’s a physically and emotionally draining condition, and you can’t give to others as much as they often give to you. But since day one, Olivier has been there.
Always Think of Your North Star
I was hospitalized in August 2019 after I developed a perforation in my intestine that required emergency surgery. Twenty-eight inches of my small intestine were removed. I physically felt terrible, and I was an emotional wreck.
I was spiraling into a deep cycle of hopelessness, but I was blessed with a wonderful nurse with such a shining, optimistic personality. She told me to close my eyes and envision what a strong Cara would look like. She encouraged me to maintain my North Star, to always keep positive goals in mind to one day achieve.
I kept her words in my head when I left the hospital and started on my current medication. That optimism helped power me through those first couple months of treatment, until I was able to go back to my job as a graphic designer and gradually resume my past activities.
This past summer, I even felt well enough to begin running. I set a goal to run 135 miles in November, and I did it, including a 50-mile challenge for St. Jude’s Hospital and a 10K Turkey Trot for the Crohn’s & Colitis Foundation. Each time I crossed a finish line, an image of strong Cara would pop into my head. This time, she wasn’t just a figment of imagination. She was reality.