Tag Archives: colitis

How Propel a Cure is Transforming Crohn’s Disease Research – About IBD Podcast Episode 180

Grassroots organizations are an important part of the IBD landscape, helping fill in the many gaps in our underserved community. Amber talks with Angela Clark, president and CEO of Propel a Cure, a grassroots nonprofit that funds research projects looking for the causes of Crohn’s disease. They discuss the challenges of finding cures for IBD and the importance of supporting innovative, early-stage research. Angela explains their grant selection process, highlights current research they fund, and shares how the organization communicates complex science to the IBD community.

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From Privacy to Advocacy: Balancing Faith and Chronic Illness Featuring Hindy (Tauber) Klein – About IBD Podcast Episode 179

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Amber speaks with Hindy Klein, a member of the Orthodox Jewish community living with Crohn’s colitis. Hindy shares how she manages IBD while observing Jewish laws, discussing challenges with diet, fasting, and hospital care during Shabbat and holidays. She also talks about overcoming stigma, the importance of community support, and how her faith helps her cope. The episode highlights the need for cultural sensitivity in healthcare and the value of sharing personal stories to support others with chronic illness.

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This Is Not A Gift Guide: An IBD Community Poll

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At the end of the year, we see the gift guides come out. There’s one for every type of person, usually focused on age and gender, but also based on hobbies or interests. Or, even, based on chronic illness such as inflammatory bowel disease (IBD).

There’s no doubt, gift guides are helpful. For someone like me, who doesn’t go out shopping a lot, it’s useful to know what’s out there. Learning about the latest in cookware or video games can be helpful. To me, the funniest ones are the gift guides for teens or college students. Even I know they just want cash.

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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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About IBD Episode 109 – Colitis Conversations: Treating to Target

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Setting goals is an important part of managing IBD. But after controlling symptoms: what other goals do patients have? They can be anything from being able to go up and down the stairs, to cooking a meal, to going back to an exercise program.

Treating to target is a concept that helps in goal-setting. But patients might not be using this method with their clinicians. Dr Neilanjan Nandi, Associate Professor of Clinical Medicine and IBD specialist at the University of Pennsylvania, Perelman School of Medicine and Jacklyn Green, ulcerative colitis patient, writer, and IBDMom, dig deeper into the idea of treat to target from both sides of the equation.

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About IBD Episode 108 – Colitis Conversations: The Impact of Ulcerative Colitis

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Inflammatory bowel disease (IBD) affects our quality of life. What that means, however, is going to be different for each person. It may depend on many factors including disease severity, access to care, and support structure.

The symptoms of ulcerative colitis such as diarrhea can prevent people from taking part in activities that aren’t near a bathroom. Bleeding can cause anemia, leaving people feeling tired and unable to go about regular activities. Not to mention the effects on mental health, relationships, and finances.

Danielle Gulden, ulcerative patient, ileostomate, and co-founder of Double Baggin’ It and Dr Nana Bernasko, IBD Nurse Practitioner and Assistant Professor of Medicine in the Division of Gastroenterology and Hepatology at Penn State Health, discuss how to manage the effects of IBD on everyday life.

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Do You Have a Roadmap for Your Ulcerative Colitis?

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One of the biggest hurdles in getting a diagnosis of inflammatory bowel disease (IBD) is first in understanding that the symptoms aren’t normal. They’re not from a virus or a parasitic infection — they go on for too long for it to be from those causes.

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About IBD Podcast Episode 107 – Colitis Conversations: Getting an Accurate Diagnosis

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Once people understand that symptoms like ongoing diarrhea and bloody stools are not normal, they need a way to overcome embarrassment and talk their symptoms over with a health care provider. Having an open and honest conversation will help ensure a quicker diagnosis of ulcerative colitis and getting the right treatment.

On this episode, Rasheed Clarke, ulcerative colitis and j-pouch patient and author of Three Tablets Twice Daily and Dr Christina Ha, an IBDologist at the IBD Center at Cedars Sinai, provide support and guidance to patients with IBD symptoms, newly diagnosed patients, and anyone who is looking for a new way to speak with their health care providers about IBD treatments.

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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 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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