Team #ALLin was in Chicago on June 11 with the Intouch Airstream for CCFA’s Take Steps for Crohn’s and Colitis fundraising walk at Horner Park. More than 50 Intouch employees and their friends and family members participated in the event. We met a lot of inspiring people and listened to their stories about living with inflammatory bowel disease (IBD), ulcerative colitis (UC) and Crohn’s disease.
“It’s that sense of community … that it’s okay to talk about it. You don’t need to suffer in silence,” said Heidi Merritt, the walk director for CCFA’s Illinois chapter. She said the event can have a positive emotional impact on people living with Crohn’s and UC. And the people we interviewed proved Heidi right when they opened up about their experiences.
Samantha was diagnosed with Crohn’s right after her 18th birthday. She explained how she felt at that moment: “The biggest feeling I had was relief, honestly. Because it had been such a long few years of not knowing what was wrong.”
Samantha went on to tell us about how her symptoms affect her every day. “It’s a toll on your social life, and it’s a toll on your mental health,” she said. “When I’m in a flare, I pretty much go to work, come home, eat, go to sleep.” She said she’s also nervous about scheduling vacations, but the Take Steps walk “gives patients something to look forward to when they’re not doing a lot socially.”
Gina, a mother of three living with UC and a first-time Take Steps participant, told us that she’s comforted by other people’s stories. When Gina learned that UC is a lifelong disease, she was devastated. But finding others online who were going through the same experiences “kind of normalizes everything.” Gina’s story is different from many others who have IBD. She underwent an ileostomy — a surgical procedure to remove her colon — while she was pregnant. “My whole world changed,” she said.
Gina knows that patients need to feel like they’re not alone and that “what they’re going through is not so crazy, so isolating.” She hopes that, in the future, there’ll be even better ways to connect with others who are also fighting IBD. “I don’t know what I would do if I had to go through this alone.”
Alice and Anna are sisters who provide each other with constant support. Alice has been diagnosed with UC, and Anna is living with Crohn’s. Together, they advocate for awareness of IBD. In terms of the difference between Crohn’s and UC, Alice said, “I would have to say that the awareness of Crohn’s is greater. But I think people tend to lump all IBDs together.”
“However,” Anna added, “I would say that most people don’t understand when the term IBD is used. They don’t even understand that the ‘I’ stands for ‘inflammatory,’ not ‘irritable.’” They did agree that both diseases are complicated and aren’t completely understood by many people. “The whole ‘invisible disease’ thing is very real,” said Anna. “I have plenty of workmates that don’t understand. … They think that it’s my own eating habits that are going to set me off. They don’t understand what it’s going to take to get me back to better.”
When it comes to Crohn’s and UC, Heidi said, “The one thing that I wish is for people to speak up more about it.” And at Intouch, we want them to be heard. That’s why we’re #ALLin to attend these events. We want patients and caregivers to have a voice and play a key role in helping us solve their health challenges. We’re so grateful for the people we met and the stories we heard at the Take Steps for Crohn’s and Colitis walk, and we’re eager to put their insights into action through what we do at Intouch.