76: The Hirschsprung’s Hour with Tom Richard - Episode 7676: The Hirschsprung’s Hour with Tom Richard - Episode 76
UK Health Radio Podcast
Tom Richard talks with Shakira about her severe Hirschsprung’s disease, from years of misdiagnosis and countless surgeries to life with an ileostomy. Their conversation highlights the medical, emotional and everyday realities of living with a rare, chronic bowel condition and the importance of valuing the good days.
43:15•7 Apr 2026
Living With Severe Hirschsprung’s: Shakira’s Fight for Answers and Good Days
Episode Overview
- Hirschsprung’s disease can be missed or misunderstood for years, leading to harmful advice such as increasing fibre intake.
- Severe cases may involve repeated blockages, emergency surgeries and eventually removal of the entire large colon.
- Access to knowledgeable specialists can vary hugely by location, forcing some people to travel far for meaningful care.
- Hirschsprung’s often comes with other health issues and long‑term complications, affecting work, finances and daily life.
- On better days, simple activities like walking, dancing or spending time with family can feel precious and worth celebrating.
“"With Hirschsprung's disease, you don't get to peek and choose, like, when today's a good day."”
Experience the emotional and inspiring tales of recovery as Tom Richard sits down with Shakira, a 34‑year‑old living with a particularly severe form of Hirschsprung’s disease. This chat is raw, honest and very down‑to‑earth, aimed at anyone dealing with chronic illness, complex bowel conditions, or supporting someone who is. Shakira walks through years of pain, misdiagnosis and dismissal, describing hospitals as a “second home” and recalling enemas, failed cleanses and endless colonoscopies that never quite worked.
Early on, she was repeatedly told to “just add fibre”, only to later learn this was making things worse. She shares how a doctor casually asked, “How long have you had Hirschsprung’s disease?” – the first time anyone had actually told her she had it, even though she’d already been diagnosed elsewhere.
Her story includes emergency surgery to prevent her bowels rupturing, over a hundred operations, removal of her entire large colon, and now living with an ileostomy and a so‑called “Barbie butt”. She also talks about financial struggles, losing work, fighting for disability support, and travelling out of state just to find a team willing to try to help. Yet this isn’t just medical horror; it’s also about stubborn hope.
Shakira describes her “good days” with real warmth: walking downtown, line dancing at home, watching films with her 15‑year‑old brother and simply not being confined to bed. She stresses that Hirschsprung’s is lifelong, different for everyone, and often comes with other health problems, making understanding within the community vital. Tom keeps the tone compassionate and conversational, giving space for Shakira’s voice while underlining how misunderstood Hirschsprung’s still is.
If you’re living with gut conditions, chronic pain or long‑term complications from early‑life surgery, you’ll likely recognise a lot in this story – and maybe feel a bit less alone. How do you make the most of your own “good days” when your body doesn’t play fair?
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