Two mothers with inflammatory bowel disease have much in common. But what makes them different is what also makes them so powerful as the “IBD Moms.” In the second of a two-part episode, Brooke Abbott and Amber Tresca talk about how racial disparities impact access to IBD diagnoses and treatment, and why building community is crucial to getting much-needed information into the hands of people living with IBD.

“We can help one another in this,” says Amber. “Let's figure out what we need to do to make sure that we're the best moms that we can be. We just found so much joy and so much friendship in one another.”

Among the highlights in this episode:

2:41: Brooke describes the health inequities based on stereotypes that exist for Black women

3:14: “I was told that I had everything except for inflammatory bowel disease,” reveals Brooke

3:59: Brooke’s poor medical care continued even after she was diagnosed 

6:35: Our co-host Melodie describes shutting down and feeling “disqualified, not heard, not seen” by her doctor

7:19: Amber realizes so many people are going through their IBD journeys alone

8:05: Planning is key for people living with IBD

10:09: “The pandemic has shown us that we are creatures who need a community, who need people, who need support,” says Brooke

11:42: “Nine times out of 10, patients are just trying to be patients,” believes Melodie. “They don't even know there's validity in what they've just experienced.”

13:15: Amber shares the most challenging aspects of living with IBD from the IBD community?

15:11: Access to information is important

Learn more about IBD Moms 

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org

Melodie Narain-Blackwell, President and Founder of The Color of Crohn's and Chronic Illness: melodie@cocci.org

Catch up on all our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

A hotel bar is an unlikely place to start a support group for Inflammatory bowel disease. But that’s where Brooke Abbott and Amber Tresca found a special magic to form the group, "IBD Moms." In the first of a two-part episode, get to know Brooke and Amber and how they manage life as mothers living with IBD.

“We both realized that going through your journey… you don't just meet people in the wild who are like, ‘Yeah, I have IBD as well,’" says Amber. ”We just found so much joy and so much friendship in one another.”

Among the highlights in this episode:

2:24: Amber describes being diagnosed at 16 with ulcerative colitis

3:27: Brooke talks about first having symptoms in college

5:06: How Amber and Brooke started IBD Moms

7:51: How IDB impacts Brooke’s life as a single mother

9:36: Amber describes her motherhood journey having IBD

10:29: IBD forced Amber to stop volunteering as a Cub Scout and Girl Scout leader

11:59: Most people don’t understand the ups and downs of having IBD

10:24: ”You can have an “A” day or a “D” day within 30 seconds,” says Melodie

Learn more about IBD Moms 

Contact Our Hosts

Steven Newmark, Director of Policy at GHLF: snewmark@ghlf.org

Melodie Narain-Blackwell, President and Founder of The Color of Crohn's and Chronic Illness: melodie@cocci.org

Catch up on all of our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

If you’re part of an ethnic community, you know how difficult it is to get diagnosed and treated for inflammatory bowel disease, or IBD. In this episode we hear from gastroenterologist Dr. Florence Odufalu, and why she treats patients in ethnically diverse and underserved communities. We also talk with ulcerative colitis patient Joshua Benton, who has been managing his disease for more than 17 years.

“It's an incredible challenge for all IBD patients to navigate the health care system. Especially in patients of color, I kind of hear sometimes the same thing that, ‘I didn't really know where to turn. Nobody was really believing my symptoms,’” says Dr. Odufalu.

Among the highlights in this episode:

1:13: Gut Culture focuses on building a community for people of color and their IBD journeys

2:19: Dr. Florence Odufalu discusses how she started in IBD care

2:56: “I didn't see that there was a focus in understanding the disease course in people of color,” says Dr. Odufalu

4:38: Joshua Benton describes his journey as an ulcerative colitis patient

5:43: “There wasn't a lot of documentation or any type of valuable information really, for me to relate to, not just specifically being black, but even just being an American with this condition,” says Joshua.

6:10: Joshua describes navigating the health care system

7:30: Melodie remembers when she was first diagnosed - “People had found me and they were telling me, I'm the first black person to be diagnosed with this disease."

8:28: Dr. Odufalu discusses treating patients of color

10:20: IBD is a global disease and affects all colors

10:57: Joshua shares what an IBD patient should look for in a doctor

12:21: Dr. Odufalu shares what patients should look for in a doctor

13:58: How has community helped Joshua

14:14: Dealing with mental health and anxiety of being diagnosed with IBD

15:58: Common misperceptions of IBD is that it “doesn't affect or rarely affects black and brown people,” says Dr. Odufalu

16:42: “The overwhelming majority of my friends just legitimately don't understand it,” says Joshua

19:47: The intersection of IBD with colorectal cancer (CRC)

20:48: Joshua discusses his ulcerative colitis journey

24:40: Diet and IBD

26:48: March is Colorectal Cancer Awareness Month. Melodie reminds us that it’s “a disease that's preventable, beatable, and treatable. Please, please, please get your screenings”

Contact Our Hosts

Steven Newmark- Director of Policy at GHLF: snewmark@ghlf.org

Melodie Narain-Blackwell, President and Founder of The Color of Crohn's and Chronic Illness: melodie@cocci.org

Catch up on all of our episodes on our website or on your favorite podcast channel.

See omnystudio.com/listener for privacy information.

Welcome to the debut of Gut Culture, a podcast that gut checks assumptions about IBD (Inflammatory Bowel Disease) through real conversations with two healthcare leaders.  In this episode, Melodie and Steven discuss the challenges of living with IBD, and how those challenges are magnified for patients of color. Melodie and Steven share personal stories and speak directly to patients as they bring together years of knowledge of two incredible patient organizations.

“Statistically, we know that if you are a black patient coming into the emergency room going to your doctor's offices, it's a 91% chance that you won't even get an IBD workup. There needs to be a space like this, where our community members can come and hear the truth,” says Melodie Narain-Blackwell, President and Founder of The Color of Crohn's and Chronic Illness.

Among the highlights in this episode:

1:25- Getting to know Melodie

1:54- Getting to know Steven

3:15- Defining inflammatory bowel disease

3:25- “IBD actually means sometimes false imprisonment”

3:30- How IBD controlled Melodie’s life

4:41- How IBD is mentally and physically oppressive

5:22- The racial disparity in treating IBD

8:12- How TV commercials oversimplify IBD

10:08- How IBD impacts your work life

11:13- The often-ignored other symptoms of IBD

Contact Our Hosts

Steven Newmark- Director of Policy at GHLF. snewmark@ghlf.org

Melodie Narain-Blackwell, President and Founder of The Color of Crohn's and Chronic Illness. melodie@cocci.org

See omnystudio.com/listener for privacy information.