For Rachel Stackiewicz, enjoying most meals is a temporary pleasure at best.

Stackiewicz, 20, of Murrysville, has been living since age 11 with Crohn’s disease, a chronic inflammation of the gastrointestinal tract. Along with ulcerative colitis, it is one of two illnesses classified as inflammatory bowel disease, or IBD. “Every day, I eat five small, IBD-friendly meals, my belly usually hurts and I have to go to the bathroom,” Stackiewicz said. “This is followed by extreme belly pain and happens every time I eat a meal.”

Living with Crohn’s — there is no cure — requires her to receive monthly at-home medical infusions, forces her to miss classes at the University of Pittsburgh, and even forced her to stop marching with the school’s band.

Stackiewicz is in regular contact with friends also living with IBD, and has been so active with the Crohn’s & Colitis Foundation of Pennsylvania & West Virginia she was appointed to its National Council of College Leaders, where she and 19 colleagues will share their stories with lawmakers and lobby for support of bills to improve care and outcomes for IBD patients.

She helped develop a junior counselor program at Camp Oasis, the foundation’s summer camp for children with IBD, she is the girls’ lead counselor at her local camp, and serves on the planning committees for two foundation fundraisers.

“So many people helped me when I was first diagnosed, and I hope to be able to do the same for others,” she said.

Stackiewicz will be recognized for her ongoing advocacy at the foundation’s annual Night of Steel in October, and spoke with the Trib about spreading awareness of IBD.

This interview has been edited for length.

Q: One of the non-medical challenges of Crohn’s Disease is that many patients do not outwardly appear sick — but what does day-to-day life look like for someone living with Crohn’s?

A: I do my schoolwork, I work remotely for my job as the marketing manager at Blaze Pizza, and then I text my friends with IBD to talk about our days and the issues we are currently having to get advice and support from each other. I try to keep my body moving and exercise once a day either by swimming laps, doing water aerobics or walking. I receive my treatment in the form of an at-home infusion once a month, and I am constantly explaining to peers and teachers why I cannot come to class, even when it is virtual, and why sometimes I am unable to eat when they do. I used to participate in the marching band at Pitt but, unfortunately, Crohn’s disease does not just affect my GI tract, and I was unable to be on my feet for so long every day, and it eventually caused my ankles and knees to swell so significantly that I had to quit. Instead, I decided to find something else I loved, and I rehearse with the Women’s Choral Ensemble at Pitt every day.

Q: What have been your biggest challenges in managing Crohn’s Disease, and how do you work to overcome them?

A: My biggest challenge with Crohn’s disease is not knowing when I am going to have to sprint to a bathroom. I usually have to make sure I can locate bathrooms before I go anywhere, and it is always one of the first questions I ask at a new place. It was hard to get outside to exercise like everyone else at the start of the pandemic because many public restrooms had been closed. I could not stray far from my house and this inaccessibility had a huge impact on me and my need for going outside and staying active.

Q: How did you come to be an advocate through the C&CF, and how did that lead to this position with the foundation’s National Council of College Leaders?

A: I began going to Camp Oasis, a summer camp for kids with IBD created by the foundation, when I was 13 and, when I graduated high school, I wanted to keep going back as a counselor. When I got to college, the education, support and advocacy manager of the CC&F’s Western Pennsylvania & West Virginia chapter encouraged me to apply for the council based on how much I enjoyed being a leader at camp, and my passion for advocating for other young people with IBD.

Q: What is the council currently working on?

A: Our biggest project is the planning of Day on the Hill, where we all go to Washington, D.C., and share our stories and journeys with legislators, encouraging them to support the bills that will help us have a better quality of life and a more sustainable future with IBD.

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