This Crohn’s and Colitis Awareness Week we’re joined by Keyla Caba, who lives with Crohn's disease and ulcerative colitis, and is the Founder of the nonprofit Connecting Pieces. Keyla shares her patient journey, talks about the common misconceptions people have about inflammatory bowel disease (IBD), and why awareness and community is important.

Among the highlights in this episode:

00:58: Keyla shares about her journey of living with IBD for over 12 years, her delayed diagnosis, and her experience as a caregiver to her child with ulcerative colitis

02:32: Keyla explains the challenges of living with an invisible illness and the importance of raising awareness for IBD

03:35: Keyla reflects on the progress in IBD treatments and the vital need for increased visibility and resources for patients

05:09: Keyla describes her early days as a newly diagnosed patient, highlighting the importance of tracking symptoms, finding community support, and effective communication with health care providers

06:11: Zoe Rothblatt, Director of Community Outreach at GHLF, asks Keyla about common misconceptions regarding Crohn’s disease and ostomies, sparking a discussion about stigma and myths

07:39: Keyla describes what a good day looks like versus a bad day, emphasizing her gratitude for even small victories

09:33: Keyla dives into how her relationship with food has evolved, including the challenges of managing an ostomy and adapting her diet through trial and error

11:45: Keyla discusses how she stays positive during flare-ups and the role of self-care, journaling, and social media in managing her mental health

13:16: Keyla shares how her personal experiences led her to advocate for better health care access and improved insurance policies for IBD patients

14:46: Keyla details her advocacy work, including lobbying legislators to improve insurance coverage for ostomy supplies and raising awareness through state and federal initiatives

17:17: Keyla introduces her nonprofit, Connecting Pieces, and its services, including free ostomy supplies and virtual support programs for patients and caregivers. To learn more about Connecting Pieces, visit: https://www.connectingpcs.org/

18:11: Keyla’s message of hope encourages listeners to reach out to the IBD community and embrace available support

Contact Our Hosts

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

Zoe Rothblatt, Director of Community Outreach at GHLF: zrothblatt@ghlf.org

A podcast episode produced by Ben Blanc, Associate Director, Digital Production and Engagement at GHLF.

We want to hear what you think. Send your comments in the form of an email, video, or audio clip of yourself to podcasts@ghlf.org

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

See omnystudio.com/listener for privacy information.