99: The Hirschsprung’s Hour with Tom Richard - Episode 9999: The Hirschsprung’s Hour with Tom Richard - Episode 99
UK Health Radio Podcast
Rachel shares 55 years of living with Hirschsprung’s disease, from experimental surgery as a baby to chronic pain, multiple operations and a successful career. She reflects on faith, family support and the importance of giving herself grace while encouraging others with chronic illness to share their stories and seek validation.
42:46•13 Oct 2026
Living 55 Years with Hirschsprung’s: Rachel’s Story of Pain, Faith and Grit
Episode Overview
- Early Hirschsprung’s surgeries were highly experimental, with long anaesthetic times and significant risks, yet paved the way for today’s safer procedures.
- Chronic pain and adhesions can last decades, and patients may need to persist until they find a doctor who genuinely listens and validates their experience.
- Hirschsprung’s-related surgery can affect fertility, especially for women, making honest conversations about long-term consequences essential.
- A strong support system, including family, partners and understanding friends, helps balance independence with empathy for bad health days.
- On difficult days, resting, cancelling plans without guilt and “giving yourself grace” can make living with chronic illness more manageable.
“Give yourself grace. Let yourself rest. If you need to just have a little pity party for a day, let yourself do it. And then brighter days are ahead.”
What remarkable journeys have people faced head-on against chronic illness? This conversation on The Hirschsprung’s Hour brings a powerful example, as Rachel shares 55 years of living with Hirschsprung’s disease and everything it has thrown at her. From a tiny baby in 1960s Wisconsin undergoing what was then experimental surgery, to a high-achieving professional running her own social media marketing business, Rachel’s story shows just how far medicine has moved on – and how far it still has to go.
You’ll hear about her early pull-through surgery, months in intensive care, and the emotional blow of being told as a teenager that she would never have children because of surgical complications. Tom keeps things relaxed and gently humorous, letting Rachel talk openly about daily pain, repeated surgeries, adhesions, and being dismissed by doctors for years.
There’s a raw honesty in how she describes the relief of finally finding a pain specialist who simply believed her, and how much that validation meant.
She also talks about faith, family support, a tough first marriage, and the moment she decided her life had to change because “God didn’t save me to be living like this.” Parents of Hirschsprung’s children will find reassurance in how modern surgery and earlier diagnosis have improved outcomes, while adults with chronic bowel conditions will likely see themselves in Rachel’s bad tummy days, cancelled plans and constant calculation around food and toilets. Despite everything, the tone stays hopeful.
Rachel focuses on gratitude, small joys, and practical coping – from working flexibly around pain to building a close-knit support network. Her message to others with Hirschsprung’s or chronic illness? Share your story, ask to be invited, cancel when you need to, and most of all, “give yourself grace.” If you or someone you love is living with long-term health issues, this conversation may leave you asking: how could you show yourself a little more kindness on the hard days?
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