The patient advocacy space is lacking the voices of men and especially men of color. The result is that the IBD community is not diverse enough to provide the kind of support that they need.
Jordan McConnell, the founder of Crohn’s Veteran, is looking to change the dynamics of the online IBD space. Jordan served in the military and was eventually discharged due to his Crohn’s disease. It was a shock and changed his career plans unexpectedly. His disease journey showed him that he needed to be the change and he developed his podcast and his brand to support men and the larger IBD community.
In December 2019 I went to Advances in IBD, which is a medical meeting that’s focused entirely on Crohn’s disease and ulcerative colitis. The understanding that IBD is more than a “bathroom disease” has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy.
With the turn of every new year, there’s a predictable pattern. People start making their New Year’s Resolutions and plan to begin their new activities (or stop the old ones) at the turn of the year on January 1st. Many of the resolutions center around losing weight, eating better, stopping smoking, or exercising more. However, are these the things that people with inflammatory bowel disease (IBD) are most concerned with? Better health for those that live with Crohn’s disease or ulcerative colitis might include resolutions that go beyond the focus of what healthy people consider at the start of a new year. I have some suggestions for those that live with IBD who are looking to make resolutions for themselves this year.
Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.