Darcy Swope, a Crohn’s and Colitis Foundation board member, has witnessed first-hand the impact inflammatory bowel disease (IBD) can have on someone’s life.
Her son, Riley, first experienced symptoms in high school but wasn’t officially diagnosed with ulcerative colitis until his freshman year of college. According to the Mayo Clinic, ulcerative colitis is an IBD that causes inflammation and ulcers in your digestive tract.
“When Riley was diagnosed with ulcerative colitis, our care manager at the Midwest Gastrointestinal Associates office introduced us to the Crohn’s and Colitis Foundation,” Darcy said. “The foundation helped us get connected to other patients. In 2021, I became a board member of the Nebraska and Iowa chapter.”
The Crohn’s and Colitis Foundation dedicates time to finding a cure for children and adults impacted by IBD. Through her role on the board, Darcy helps organize events and encourages others, including her coworkers at Blue Cross and Blue Shield of Nebraska (BCBSNE), to come out and support the foundation’s mission.
“As a board member, one of my goals is to raise awareness of this chronic illness,” Darcy said. “Riley most likely had ulcerative colitis when he was 16, but we didn’t have an official diagnosis until he was 18. Because of his symptoms, Riley’s doctors originally misdiagnosed him with the flu or a virus before his liver enzymes dropped low enough to get a colonoscopy.”
Darcy explained that about 3 million people are impacted by Crohn’s and colitis today, most of whom are diagnosed before they turn 18, like Riley.
The Crohn’s and Colitis Foundation offers a variety of resources for patients. After Riley’s diagnosis, he joined a support group through the foundation. Darcy said the support group was life-changing for their family.
“Just to have him in a room with other people battling the same conditions and going through the same treatment helped us cope,” Darcy said. “As a mother, I was trying to find the right resources to help my son manage this condition and live his life.”
Now 27, Riley’s ulcerative colitis is stable with treatment. Darcy said her son is “thriving, living his best life.”
“He does a great job working out and managing his symptoms,” Darcy said. “I feel blessed that there’s a foundation supporting these patients and companies like Blue Cross providing space and resources for them to continue fundraising, researching and educating on this disease.”
Each year, Darcy captains a team of BCBSNE employees during the Crohn’s and Colitis Foundation’s Take Steps event, which raises awareness, funds research and honors the journeys of those living with IBD. BCBSNE is a proud sponsor of the event, which was held on Saturday, June 24 this year.
“BCBSNE does a lot to ensure the IBD community is supported at the Take Steps event and beyond,” Darcy said. “They donate meeting space for physician education and set up tables at events to show support and interact with patients and caregivers. Knowing my employer cares about me and my family’s health makes all the difference.”
Darcy explained companies might be surprised how many of their own employees benefit from Take Steps or other events hosted by the Crohn’s and Colitis Foundation.
“Chronic illnesses are often invisible,” Darcy said. “Most companies probably employ someone who has been impacted by IBD.”
For Darcy and Riley, the Crohn’s and Colitis Foundation has meant a support network and resources during a difficult diagnosis and treatment process.
“Treatments and education for these types of conditions hasn’t been as easily accessible in the past,” Darcy said. “We feel lucky Riley has found this support network, and by sharing our story, we hope other families who might be struggling with a chronic illness can find theirs.”