Surviving summer with IBD

I have always loved the summer months. I looked forward to summer camp, sitting by my pool, eating watermelon in the sunshine, and walking along the beach on Long Beach Island. But my Crohn’s disease forced me into a love-hate relationship with the summer. The sun makes me tired and outdoor venues often do not have bathrooms. At the same time, some of my favorite memories are laughing outside with my best friends from camp, going for long walks at the park, and gliding down water slides at the pool.

I was diagnosed with Crohn’s disease when I was 7 years old. My disease was severe my whole childhood, so that meant passing on the ice cream truck, only going to beaches with nearby public restrooms, and planning family vacations around how I was feeling at the time, which was fine one minute and horrible the next. In middle and high school, I skipped out on trips to amusement parks, beach houses, and pool parties because I did not want to feel different from everyone else. Scars from abdominal surgeries made me feel self-conscious to wear a bathing suit around peers. I knew I would not be able to eat the cookies and pizza everyone indulged in during those summer get-togethers, and I feared wanting to leave an event while everyone else was still having fun.

But when I did feel well enough to enjoy the warmer months, I made the effort to appreciate those moments with sand between my toes and sunshine on my face. As I have gotten older, I am much more open about my Crohn’s disease with my friends, which eases a lot of worries when making plans in the summer. I express my needs: access to a restroom, ability to have water and snacks with me, etc. I am accepting of my limitations and know that I get easily dehydrated in the sun since I had my colon removed when I was 12. I have found coconut water to be a great source of natural hydration for me. I know when I need to step into air conditioning and am not afraid to do what is best for me, because this allows me to have more freedom to enjoy the rest of the day. I make sure to have plenty of fluids and a hydrating snack after spending hours outdoors. 

The last two summers, I lived away from home at my college apartment to complete internships near my university. My parents have always been a great source of support, and they make sure I am taking care of myself. I knew this newfound independence also meant I had to hold myself accountable. I brought my reusable water bottle everywhere, wore a cute baseball cap or floppy hat to protect myself from the sun, and piled on the SPF. If I felt nervous about where I was going, I looked up the venue online ahead of time to see where the restrooms were. I knew these summers would be full of activities and plans with friends every weekend, so I was determined to have the best experience possible. Looking back, I enjoyed dinners and shopping outside, hours at the pool, live musical performances, trips to Washington D.C. monuments and the zoo, baseball games, and more. 

This summer, despite the coronavirus pandemic, I am looking forward to coming up with creative ways to stay busy and have fun. Thankfully, with the warmer weather, it is easier to spend time with my friends and family while socially distanced out in the backyard or on the beach. As someone on an immunosuppressant, I am relieved to have a wide range of outdoor options available to me so I can still safely engage in social situations. I like having friends come over to my backyard with their own meals for socially distanced dinners. Also, my family members have brought lawn chairs to lounge in while we catch up and share some laughs – much needed after spending so much time indoors during the colder months!

I have also been loving going on long walks in my local park, along my street, and on campus when I am at school. I am spending more time outside than ever before, which I have actually found to be quite relaxing and a nice change of pace. For the days when it is too hot for me to stay outside for hours, watching TV, yoga, and video chatting friends and family has kept me occupied. 

Everyone wants to make the most of their summer. There is nothing quite like the sight of waves crashing at the beach or the feeling of the sun warming your whole body as you melt into your chair. With some extra care and planning, I am now confident I can make the most of the warmer months despite my Crohn’s disease. Bring on the hot temperatures, pool days, and sunsets!

Rachel Gerstenfeld is a Crohn's disease patient from New Jersey and a member of the Foundation's National Council of College Leaders.