Tag Archives: ibd

About IBD Episode 61 - Reporting from Advances in IBD 2019: Getting Out of the Bathroom

About IBD Podcast Episode 61 – Reporting from Advances in IBD 2019: Getting Out of the Bathroom

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. 

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Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

Reporting from Advances in IBD 2019: Parenthood Project Consensus Statement

One of the presentations I attended at Advances in Inflammatory Bowel Diseases (AIBD) in Orlando, Florida in December 2019 was regarding the IBD Parenthood Project. The American Gastroenterological Association (AGA) has put together a clinical care pathway for pregnant women who live with IBD. The pathway was created with input from representatives from different specialties that may care for pregnant women with IBD, including gastroenterologists, maternal-fetal medicine specialists, teratologists, lactation specialists, and patients.

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About IBD Episode 57 - I Really Don't Think About My Ostomy Anymore

About IBD Podcast Episode 57 – I Really Don’t Think About My Ostomy Anymore

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.

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About IBD Podcast Episode 52 – Summer of Activism: Connecting the Numbers to a Story

In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy.


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


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IBD Activists You Should Follow on Social Media

Summer of Activism: IBD Advocates You Should Follow on Social Media

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.

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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 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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