Phil has taken part in a study to better understand the condition. ‘The most debilitating symptom is fatigue. It’s not just tiredness, it’s a profound draining from within.’
Phil Jones, of Relubbus near Penzance, has taken part in a Crohn’s Disease study and opened up about what it does to your life, health, mental health and sex life too(Image: Phil Jones)
A dad has opened up about the impact Crohn’s disease has had not just on his health and mental health but also on his sex life.
Phil Jones wanted to share his story in the hope of helping others. He is now contributing to research to improve sexual health care for men with inflammatory bowel disease.
Phil, 46, was diagnosed with Crohn’s disease when he was just 20. At the time, he was severely ill and malnourished.
“I went through a few years of back and forth with different drugs and steroids,” he said. “I’d have short periods of remission, but the disease was always rearing its head.”
Crohn’s disease is a type of inflammatory bowel disease (IBD) that causes chronic inflammation of the digestive system. There is no cure, but treatments can help control symptoms, which include severe stomach pain and diarrhoea.
Phil, who has two teenage children with his wife Alison, said: “I describe the symptoms as having your digestive system’s volume turned up, a constant, low-level pain you become numb to. But the most debilitating symptom is fatigue. It’s not just tiredness, it’s a profound draining from within.”
Phil began taking biologic medicines which gave him longer periods of stability. Biologic medicines are treatments that block particular proteins or chemical pathways involved in inflammation.
They can help get Crohn’s or Colitis under control and keep them under control. But they also alter your immune system, so you might not fight off infections as well as other people.
Five years ago Phil needed major surgery to reroute part of his digestive system. He said that managing family life alongside Crohn’s has been challenging at times. While the physical symptoms are difficult, Phil says the impact on mental and sexual health is often overlooked.
“When I was first diagnosed, the priority was saving my life. Mental health, let alone sexual health, just wasn’t discussed,” he said.
Research shows that IBD can significantly affect sexual wellbeing and relationships, yet men say these issues are rarely addressed in NHS appointments, and specialist support is lacking.
When Phil, of Relubbus near Penzance, saw an opportunity to take part in the MenSH-IBD study, which aims to develop better support for nurses assessing and addressing the sexual health needs of men with IBD, he signed up immediately.
The study is being delivered with support from the NIHR Research Delivery Network, which helps make research accessible to people across England.
The free online service matches people to studies from across the UK, making it easier than ever to take part in vital health and care research.
Phil Jones, of Relubbus near Penzance, has taken part in a Crohn’s Disease study and opened up about what it does to your life, health, mental health and sex life too(Image: Phil Jones)
“Absolutely happy to help,” Phil said. “There’s only so many of us and Crohn’s is different for everyone. The more voices included in research, the better.”
Phil completed an anonymous online questionnaire about his condition and impact on his sexual health. He was later invited to take part in a one-to-one interview with a research nurse.
He added: “The interview was incredibly empathetic,” he said. “Answering the questions was surprisingly cathartic. It made me reflect on my symptoms, think about how I treat myself, and start really valuable conversations with my wife about how Crohn’s affects our relationship.”
“It gave us both a chance to reflect, and we’ve agreed to check in with each other more often.”
Phil says the experience has also helped him think differently about his mental health.
“I’ve always focused on the physical side of Crohn’s like medication, diet, supplements. This made me think about how important it is to look after myself mentally too.”
Dr Sara Ma, a researcher on the MenSH-IBD study, said: “We’d be lost without people like Phil giving us their time and their expertise to improve the lives of others.”
People can sign up to be contacted about studies that are right for them by creating a free Be Part of Research account at bepartofresearch.uk.
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