How do you think about your connection with your gastroenterologist? The patient/physician relationship is important in managing inflammatory bowel disease. I talk with Dr. Aline Charabaty, Associate Professor of Medicine, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital, and winner of the 2019 Healio Gastroenterology Social Media Influencer Award, about how patients and doctors can better understand one another and better communicate about managing your disease. Find out how doctors can help patients in addition to finding the appropriate treatment for them, including what kinds of questions both groups should be asking, and how we can all move beyond “how many bowel movements” to discuss other issues important in Crohn’s disease and ulcerative colitis.
Crohn’s disease and ulcerative colitis are diseases of young people. Women are often diagnosed during their childbearing years, which means that inflammatory bowel disease (IBD) enters into the equation when considering becoming pregnant. I talk with Beth Kiernan, a Teratogen Information Specialist at MotherToBaby about how women can learn more about how to manage IBD medications before conception, during pregnancy, and while breastfeeding.
I’ve never before considered contacting a health coach. I’m fortunate to have a robust support network and as an experienced patient, it seemed to me that perhaps a health coach wouldn’t have much to offer me. My mind was changed, however, when I got in contact with Pack Health.
Being diagnosed with ulcerative colitis as a child and undergoing j-pouch surgery in high school hasn’t slowed Sneha Dave down at all. In fact, it spurred her to found two groups that are focused on bringing young people into the patient advocacy space: the Crohn’s and Colitis Young Adults Network (CCYA) and the Health Advocacy Summit (HAS). Learn how Sneha grew the CCYA from its humble start as a newsletter, the opportunities that CCYA and HAS offer to young patients, and her secret to managing a work/life balance.
Living with a permanent ileostomy as a result of Crohn’s disease hasn’t stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan’s story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber’s unfiltered thoughts on the competitiveness of the triathlon community.
A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam competitively through high school and college and was sidelined by Crohn’s just after falling in love with triathlon. He’s worked his way back twice from devastating flare-ups to get back to swim, bike, run, and now to the ultimate race: the IRONMAN. Come with us as we relive the IRONMAN Triathlon in Madison, Wisconsin and discuss how Ryan prepared and competed while living with IBD and a permanent ostomy.
Living with inflammatory bowel disease (IBD) can mean it may be difficult to travel at times. There are many reasons why traveling could be challenging but one of the major problems is the lack of easy access to bathrooms. Public transportation tends to be notorious for not having restrooms and this can give people with IBD some anxiety. That’s why having a travel kit stocked and ready will help people living with Crohn’s disease or ulcerative colitis to have more confidence when making travel plans.
Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.
People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen McGregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility.
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.