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What happens when a future mental health nurse spends 17 years searching for answers before finally being diagnosed with Crohn's disease?
In Episode 42 of Wrestling the Octopus IBD, Rachel and Nigel speak with Hakeem, a London-based mental health nurse living with Crohn's disease, about his long and difficult journey to diagnosis, major surgery, life with a temporary stoma, and the lasting psychological impact of living with inflammatory bowel disease (IBD).
Hakeem shares how symptoms that began in childhood were repeatedly dismissed as anxiety, leaving him to navigate years of pain, abscesses and worsening illness before finally receiving a diagnosis. He explains the concept of diagnostic overshadowing, where existing mental health labels can influence how healthcare professionals interpret physical symptoms.
The conversation explores a life-changing surgical experience, including emergency complications, blood transfusions, an unexpected ileostomy and the challenges of adjusting to life with a stoma. Hakeem speaks candidly about recovery, trauma and the importance of specialist stoma support.
Drawing on his professional experience as a mental health nurse, Hakeem also reflects on the often-overlooked relationship between gut health and mental wellbeing. He argues that IBDcare should take a more holistic approach, paying greater attention to the emotional impact of living with a chronic condition such as Crohn's disease or ulcerative colitis.
The episode also covers career choices, workplace adjustments, patient advocacy and the importance of maintaining an identity beyond illness. Through honest patient reflections and deeply personal patient stories, Hakeem highlights the challenges faced not only by patients but also by their families and loved ones.
Whether you live with IBD, Crohn's, Crohn's disease, ulcerative colitis, have undergone surgery, are considering a stoma, or simply want to better understand the emotional realities of chronic illness, this episode offers valuable insight, empathy and hope.
In this episode:
- A 17-year journey to a Crohn's diagnosis
- Diagnostic overshadowing and delayed diagnosis
- Emergency bowel surgery and recovery
- Living with a temporary stoma
- Trauma, PTSD and mental health after surgery
- Bile acid malabsorption following bowel surgery
- Becoming a mental health nurse while living with IBD
- Why mental health support should be embedded within gastroenterology services
- Supporting families affected by long-term illness
- Finding balance beyond inflammatory bowel disease
Follow Rachel at @bottomlineibd
Follow Nigel at @crohnoid
