Category Archives: Podcast

Episode 47 - Attending a Town Hall Meeting

About IBD Podcast Episode 47 – Attending a Town Hall Meeting

Working with our local elected officials is important to having our voices heard. But attending local town hall meetings held by state or federal congressional representatives is daunting, especially if you’ve never done it before. Shawntel Bethea of Chronically Strong describes her journey from sending an email to asking for support from her Congresswoman at a meeting in her district. She gives her tips on how you can make an impact in your community for people living with IBD.

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Attending Medical Meetings as a Patient

About IBD Podcast Episode 46 – Attending Medical Meetings as a Patient

For this first episode of my limited series, Summer of Activism, I’m answering a question that I hear regularly: how it is that I go to medical meetings such as Digestive Disease Week, Advances in IBD, or Crohn’s and Colitis Congress. I give you the answer as well as tips on how patients, bloggers, podcasters, and vloggers can work towards attending these, and other, scientific meetings. Here’s a spoiler: it takes dedication to improving the lives of people with IBD, commitment to doing the work consistently, and some professional networking.

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Episode 45 - Where Do We Go From Here_

About IBD Podcast Episode 45 – Where Do We Go From Here?

What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.

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Princesses Poop Too

About IBD Podcast 44 – Princesses Poop Too

Does having IBD make you feel like a princess? Crohn’s disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn’t take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia’s disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess.

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We Still Don't Know What Happened

About IBD Podcast 43 – We Still Don’t Know What Happened

Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases.

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Episode 42 - I Just Said Yes

About IBD Podcast 42 – I Just Said Yes

Living with Crohn’s disease or ulcerative colitis may have a significant affect on intimate relationships. The reasons for this are as individual as we are but can include pain, fatigue, medication side effects, and problems with body image. Kait Scalisi, an NYC-based sex educator who founded Passion by Kait, has devoted her professional life to helping women and couples learn to reconnect with themselves and their partner in order to enhance intimacy and reconnect with pleasure. Kait lives with Crohn’s disease and ankylosing spondylitis, and therefore has a deep understanding of how chronic conditions can affect intimate relationships (both with oneself and with a partner). Hear Kait’s Crohn’s disease journey and learn how she helps people find their way back to enjoying their spark, both in the bedroom and outside of it.

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Episode 41 - You Have to Do What’s Best for You

About IBD Podcast 41 – You Have to Do What’s Best for You

Many young people who are undergoing ileostomy surgery to treat Crohn’s disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don’t experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success.

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What Are People Going to Think

About IBD Podcast 40 – What Are People Going to Think?

People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s.

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Help for Parents With Crohn's Disease or Ulcerative Colitis

About IBD Podcast 39 – Help for Parents With Crohn’s Disease or Ulcerative Colitis

How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media.

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Your Body Is Depending on You to Be Assertive

About IBD Podcast 38 – Your Body Is Depending on You to Be Assertive

It’s common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That’s where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017.
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