Patient story: My lived experience with IBD
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In episode of the #FerringPod, host Zoya Mabuto-Mokoditoa is joined by Sister Frances, an experienced IBD nurse, along with guests Harelle and Byron, who share their lived experiences with Inflammatory Bowel Disease (IBD). The episode explores the personal and medical realities of living with a chronic condition that is often invisible to others. Sister Frances offers valuable insights into what IBD is, how it differs from other digestive conditions, and the importance of personalised treatment. Harelle and Byron reflect on their journeys, from the early signs and challenges to the emotional impact, lifestyle adjustments, and navigating the stigma. Together, they highlight the importance of support systems, mental wellbeing, and public awareness.
Chapters
- 00:05 Introductions and Overview of IBD
- 01:55 Sister Fances' role and experience with IBD patients
- 03:59 Harelle's introduction and journey with Crohn's disease
- 04:50 Byron's introduction and approach to managing Crohn's
- 06:45 Defining Inflammatory Bowel Disease (IBD)
- 08:20 Differentiating IBD from Irritable Bowel Syndrome (IBS)
- 11:10 Causes and Contributing Factors to IBD
- 14:44 Harelle's experience with misdiagnosis and eventual diagnosis of Crohn's
- 17:25 Byron's experience with diagnosis of Crohn's
- 19:07 Frustrations with initial medical assistance and the diagnostic process
- 22:52 Tools and Tests for Diagnosing IBD
- 27:13 Harelle's early experiences with limited treatment options
- 32:49 The role of IBD nurses and comprehensive patient care
- 35:10 The importance of support and perspective in government facilities
- 36:35 Byron's experience with evolving treatment options and the importance of informed decisions
- 41:07 Practical Tips for doctor consultations and support networks
- 43:58 The importance of support networks and open communication
- 49:05 Maintaining mental health and coping with the burden of IBD
- 54:15 Harelle's Facebook support group for IBD patients
- 56:17 Additional support resources and the importance of accurate information
- 01:01:07 Treatment and management of IBD: diet, lifestyle, and medical approaches
- 01:04:10 The importance of individualised treatment and patient advocacy
- 01:07:29 Lifestyle changes and modifications for managing IBD
- 01:12:06 Messages of support and advice for those living with IBD
- 01:13:38 Navigating IBD in the workplace and the importance of open communication
- 01:16:01 Maintaining mental stimulation and a sense of worth while managing IBD
- 01:18:22 Final advice and encouragement for patients and their support teams
