Tag Archives: crohns

About IBD Podcast Episode 128 – CDPATH: A Prognostic Tool for Crohn’s Disease

Are we getting close to predicting how Crohn’s disease might change over time? Dr. Corey Siegel, co-director of the Inflammatory Bowel Disease Center at the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and Jessica Caron, a patient key opinion leader who lives with Crohn’s, discuss a prognostic tool called CDPATH. This tool may help patient and healthcare providers understand how the disease may change over the next few years, and better inform a discussion of treatment options.

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About IBD Episode Episode 123 – Understanding Resilience With Mara Shapiro

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Does living with Crohn’s disease or ulcerative colitis make a person more resilient? And is resilience something that should be a part of management plan for people with inflammatory bowel disease (IBD) or other chronic illnesses? Mara Shapiro, healthcare journalist and Crohn’s disease patient, has had no other choice but to find a way towards resilience in her life, having lived through grief and loss early in life, followed by the diagnosis of several chronic illnesses. She provides deep insight on coping mechanisms and resilience, including the various ways we can look at these ideas to fit our own needs.

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About IBD Podcast Episode 122 – Serving in the Navy With Crohn’s Disease, With Daniel Rausa, DO

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When it comes to people with Crohn’s disease or ulcerative colitis serving in the military, the usual policy is that the two things are incompatible. The reason being that people living with an inflammatory bowel disease (IBD) need care and treatments that are incompatible with being deployed. However, sometimes there are other considerations, as Dr Daniel Rausa describes. Dr Rausa was diagnosed with Crohn’s disease while serving in the Navy, and he has advice for people who live with an IBD and want to serve or who want to pursue a medical career. He also describes why it’s so important to follow up and stay on top of transition of care when leaving military service.

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About IBD Podcast Episode 119 – The Restroom Access Act

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Have you ever been out in public and needed a toilet — but there wasn’t one available?

This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn’s disease or ulcerative colitis), which is why so many of us have “bathroom accident” stories. Needing to use the bathroom is a basic human need, but it’s treated like an afterthought. That’s where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.

There is no such law currently in California. That’s hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.

Send your letters of support for AB 1632 to Assemblymember Weber’s Legislative Assistant, Raymond G. Contreras: raymond.contreras@asm.ca.gov

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Do You Know How to Hit Your Target?

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We all have goals in life. Inflammatory bowel disease (IBD) can sometimes get in the way. It’s not ideal, but that’s the reality.

However, the goal of treatment should be to get us back to doing what we love to do, and minimize the effects of Crohn’s disease or ulcerative colitis on our lives. Our doctors also have goals for us. These goals might be different, but they’re all important in getting symptoms and inflammation minimized and living life on our terms again.

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Who Is the Base of Your Pillar?

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In the spring of my junior year in high school, I met with my senior year Advanced Placement English teacher. I don’t remember much of that meeting, such as what we talked about, or even its purpose.

What I do remember is the store room she took me into.

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About IBD Podcast Episode 97 – Wine, Biscuits, and Drinking Water With Author Kathleen Nicholls

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Life with inflammatory bowel disease (IBD) brings challenges and many life changes but it can also sometimes bring unexpected opportunities.

Kathleen Nicholls, author of “Go Your Crohn Way: A Gutsy Guide to Living with Crohn’s Disease” and “My Flare Lady: a handbook for today’s (diseased) dame” was diagnosed with Crohn’s disease in her 20s. She started a blog as a way to process her disease journey. She was stunned when people started reading it and when publishers became interested. Two books later, she shares the lessons she learned along the way.

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About IBD Podcast Episode 93 – Motherhood Unplugged With Natalie Hayden

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It’s one thing to talk to your physicians about becoming pregnant when you live with ulcerative colitis or Crohn’s disease. But what about getting the benefit of experiences from the mothers who have been through a pregnancy, birth, and breastfeeding journey? Former news anchor and current blogger and Crohn’s patient Natalie Hayden gives her experiences with pregnancy and receiving biologics, as well as how she has participated in research during her pregnancies and the benefits it offers her family.

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About IBD Podcast Episode 91 – Derek Mari of Crohnie: It’s Not Impossible

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Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative?

My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn’s disease and his IBD journey inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled “Crohnie,” which was positively received at several film festivals (before the pandemic shut everything down).

Derek’s next project is a full-length feature film with a main character who lives with Crohn’s disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success. Learn more about Derek and his Crohn’s story, as well as how you can get involved in the crowdfunding program to get this film made.

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About IBD Podcast Episode 85 – Dr David Rubin Answers COVID-19 Vaccine Questions

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From the beginning of the COVID-19 pandemic, people with inflammatory bowel disease (IBD) have had many questions. Now that vaccines against the virus are becoming available, people living with Crohn’s disease or ulcerative colitis need even more information in order to make decisions. I asked Dr David Rubin, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine to answer some of these initial questions about the first COVID-19 vaccines (manufactured by Pfizer and Moderna). Topics discussed on this episode include:

How vaccines work
How mRNA works
How IBD medications affect the immune system
IBD medications and their potential effect on COVID-19 vaccination
When we’ll have more information about COVID-19 vaccines and IBD
Why side effects with vaccines are expected and what they mean

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