FBI hopeful hopes others learn to manage mega ‘tummy troubles’

Danielle Meyer and her boyfriend visit a fall Champaign hotspot free from the worries of Crohn's disease.Danielle Meyer didn’t like it, but she was getting used to feeling tired all the time and like her stomach was on fire much of the time.

She’s getting used to something else now—relief from Crohn’s disease, a chronic gastrointestinal condition many sufferers prefer not to talk about.

A Kankakee Community College student studying criminal justice, Meyer did speak up during the Iroquois County fair last year. The pageant contestant used the opportunity to focus on how she is more than her disease.

“I didn’t want to talk with anyone at first, but I eventually talked with a friend who had it. He helped me get through it,” she said. “I made my one-minute speech about how when we see sick people, we need to see that they are still a person, not what makes them sick.”

People with Crohn’s or ulcerative colitis—and the people who care for them—learned more at at The New Developments in IBD event that featured Carle Digestive Health staff Eugene Greenberg, MD; Simon Crass, MD; Nancy Bollero, NP; and Erin Scarpetta, RN.

“Crohn’s disease may affect as many as 780,000 Americans. Men and women are equally likely to be affected, and while the disease can occur at any age, Crohn's is more prevalent among adolescents and young adults between the ages of 15 and 35,” according to the Crohn’s and Colitis Foundation.

Danielle's Crohn's disease is managed with the help of a Carle nurse navigator.Meyer learned she had Crohn’s when she was 19. Like many, she knew next to nothing about the disease.

And like others, she manages her condition with the help of the Carle Digestive Health Institute, in part by working regularly with the program’s nurse navigator, Julie Amen, RN.

Amen calls autoimmune diseases like Crohn’s and ulcerative colitis “vicious.”

With regular care, though, even when patients aren’t experiencing symptoms, something amazing happens.

“It is amazing. I’m feeling so much better. No more stomachaches, and I can sit through a whole movie,” Meyer said about avoiding theaters because she’d have to use the bathroom several times.

Right before Halloween, she enjoyed every minute of the gruesome thriller “Jigsaw.”

“It used to be harder to go out with friends. They didn’t know what I could do or what I could eat, even though I just wanted to be like them and do normal things,” Meyer said.

Danielle at top celebrates with friendsCarle’s Amen works with a lot of college students and young adults like Meyer. She usually meets them when they’re hospitalized during a flare-up and then serves as their main contact and ongoing connection to managing their condition when they go home.

“We work to keep them out of the hospital. I’m always just a phone call away, and I can go to appointments with patients to help them understand how to be their most healthy,” Amen said, adding she helps make sense of lab results and medications and highly recommends MyCarle.com, the secure online patient portal.

“I believe that knowledge is power, and that’s part of how we treat the whole person, not just the disease—connecting patients to the information they need.”

Getting information makes happy and healthy Meyer giggle.

“When I was first diagnosed, my mom did a ton of research about Crohn’s. She Googled like crazy and scared the bejeepers out of herself,” Meyers said.

Since then, she’s done plenty of her own research, with some unexpected results.

“I’m a huge fan of Jake Diekman. I’m always reading about what’s going on, and I follow him on social media,” she said of the Texas Rangers relief pitcher who shares open and honest information about living with ulcerative colitis.

“It’s crazy because I didn’t expect other people to be going through this. I finally realized I’m not the only one.”