Category Archives: Podcast

About IBD Podcast Episode 51 – Summer of Activism: It’s Now or Never

If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn’s disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn’s and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist.


IBD Dance Party

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:

http://aibdnewsletter.aboutibd.com/music


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Have Your Voice Heard on the Hill

About IBD Podcast Episode 50 – Summer of Activism: Have Your Voice Heard on the Hill

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.


IBD Dance Party

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:

http://aibdnewsletter.aboutibd.com/music


Continue reading

About IBD Podcast Episode 49 – Summer of Activism: Attending Day on the Hill

How does an IBD patient attend Day on the Hill events and meet with the offices of congressional representatives in Washington DC? What is it like to go to these events? In this episode I describe how I got involved in hill day meetings, why I do it, and what the process is like to attend. I also offer you my tips on how to make the best of the time spent in the capital in order to make the biggest impact on the people who can affect change in the lives of IBD patients.

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Episode 48 - Getting Kids Involved in Activism

About IBD Podcast Episode 48 – Getting Kids Involved in Advocacy

How young is “too young” to get kids involved in activism? Gastroenterologist and activist Dr Meenakshi Bewtra started her kids on their activism journey at birth and continues by bringing them to marches, voter registration events, and postcard writing parties. Dr Bewtra shares her tips on how you can involve your kids in activism, why you should, and how it might make your life as a parent — and activist — a bit easier.

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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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