Navigating ulcerative colitis as a child

As a child, swimming for Marisa Troy was more than just splashing around in the New York summers. Each dip in the water brought images of trophies and swim meets, a future in competitive swimming. At 13-years-old, when life is already starting to become confusing, Troy was dealt a blow that would change those dreams and aspirations. She was diagnosed with ulcerative colitis, an autoimmune disease that causes ulcers and inflammation in the large intestine.

“I was suffering for a few months and couldn’t speak to anyone about it except my parents,” recalls Troy. “I had diarrhea, abdominal pain, and decreased appetite which wasn't like me.”

Her mother, who was a big advocate for her health being her caregiver and parent, quickly got her to a gastroenterologist. At her exam, there was blood which then led to a colonoscopy and a diagnosis, but Troy knows not everyone’s journey to an answer is as quick. “I’m grateful for my parents, but even with their help there were still a lot of unknowns,” says Troy. “Today my relationship with my doctor is different because I understand my body and I’m willing to share more.”

Troy has had 15 abdominal surgeries including the removal of her colon, and now lives with a permanent ostomy. Her IBD sent her life in directions she never imagined. It also led her to find love.

“I had a friend that was going to an IBD event, a fundraiser, and I had never been to one before,” describes Frank Garufi, who at the time was a single father to a son with Crohn’s disease. He made the nearly 4-hour drive where he was drawn to Troy the moment he entered the room, and their connection quickly grew deep.

“Prior to meeting Marisa, there was a point in time where I felt like I was the only person in the world who was going through this,” says Garufi. His son developed IBD symptoms at just 2-months-old. “I kept going from doctor, to doctor, to doctor, trying to figure out what is going on here? What's wrong with my son?”

Garufi says it took more than three years for his son’s diagnosis, but it came when they finally visited gastroenterologists at a prominent IBD center. “We got to a place where they truly understood what this disease was like and were on the forefront of doing research and development into IBD.”

Today the couple are grateful to the scientists who have persevered in researching the chronic disease, applying new learnings to the care for children living with IBD. Along with the gratitude, they help raise awareness of IBD by sharing their experiences. Troy and Garufi both blog about their respective stories as a young person living with ulcerative colitis and a caregiver to a child with Crohn’s disease.

“I told my parents, I vividly remember in the hospital that the only way that any of the horrific things that happened to me would make any sense at all was if I could turn it around and help people,” recalls Troy.

Others in the IBD community have reached out, thankful for sharing and showing them they’re not alone.

“It opened up a whole new world,” says Garufi. “There was a frustration of hopelessness that I had that all of a sudden the more I started talking about this and the more I started trying to connect with other people, that helplessness started to fade away. I started to feel like not only was I helping other people, but other people were helping me which allowed me to be a better caregiver to my son.”