A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”
“Probably,” says the man in the road.
“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”
I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.
The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.
It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:
Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.
Getting married is a joyful time in one’s life. Until you have to bring your IBD along when you shop for your wedding dress, that is. Learn how Crohn’s disease affected Jaime’s perceptions about body image throughout her life and how it all culminated in a trip to a bridal shop that left her angry and frustrated. Plus, we share our best tips for making the dress shopping, and eventual wedding day dress wearing, go more smoothly if IBD decides to make make an appearance.
Are you unique? Do you represent most patients with IBD? Christy Stone of Crohnie Bologna tells the story of her disease journey, how she feels that she’s not unique as an inflammatory bowel disease patient, why she chooses kindness, and why these things make her a better advocate.
Welcome to the year-end wrap up show! I put together clips from my first 14 shows that drop the heaviest knowledge bombs about how life with IBD affects us, our careers, our relationships, and our stress levels.
What are your goals? Are you taking steps each day to move towards those goals? Brian Greenberg, endurance athlete and president of Chronically Better You, tells us how he moved from goals after surgery—getting out of bed and making his own lunch—to training for an Ironman in 2018. People with IBD know the value of structure and Brian explains how he has learned to manage his life with Crohn’s disease and an ostomy through careful planning and setting goals. Continue reading →