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United States

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@aboutibd

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English

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Episodes

You Have to Take Care of Yourself

10/8/2019
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Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries. Concepts discussed in this...

Duration:00:33:59

I Would Have Missed the Window for a Child

9/24/2019
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People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen Mcgregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility. Find Jen Mcgregor...

Duration:00:25:39

He Would Do the Same for Me

9/10/2019
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Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases. For...

Duration:00:32:41

Summer of Activism: Connecting the Numbers to a Story

8/27/2019
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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...

Duration:00:16:57

Summer of Activism: It's Now or Never

8/19/2019
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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 —...

Duration:00:29:12

Summer of Activism: Have Your Voice Heard on the Hill

8/13/2019
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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...

Duration:00:17:37

Summer of Activism: Attending Day on the Hill

7/30/2019
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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. How to Get...

Duration:00:16:37

Summer of Activism: Getting Kids Involved in Advocacy

7/23/2019
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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. Find Meenakshi Bewtra, MD, MPH...

Duration:00:25:07

Summer of Activism: Attending a Town Hall

7/16/2019
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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. Find...

Duration:00:13:29

Summer of Activism: Going to Medical Meetings

7/9/2019
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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...

Duration:00:11:15

Where Do We Go From Here?

6/24/2019
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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...

Duration:00:25:47

Princesses Poop Too

6/11/2019
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Does having inflammatory bowel disease (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...

Duration:00:38:35

We Still Don't Know What Happened

5/21/2019
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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...

Duration:00:37:03

I Just Said Yes

5/7/2019
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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...

Duration:00:35:53

You Have to Do What’s Best For You

4/23/2019
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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...

Duration:00:45:21

What Are People Going to Think?

4/9/2019
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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...

Duration:00:33:19

Help for Parents With Crohn’s Disease or Ulcerative Colitis

3/26/2019
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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...

Duration:00:51:52

Your Body Is Depending on You to Be Assertive

3/12/2019
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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...

Duration:00:27:25

I Felt a Lot of Guilt

2/26/2019
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What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this...

Duration:00:23:29

We Are Only 1% Human With Dr Sarina Pasricha

2/12/2019
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What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it's pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids. Concepts and ideas discussed in this episode: Christiana Care...

Duration:00:40:10