Cornwall Dad Takes Part in Crohn’s Research to Improve Men’s Care

A web developer from Cornwall is giving back to the Crohn’s community by taking part in research aimed at improving sexual health care for men with inflammatory bowel disease.

Phil Jones, from Relubbus near Penzance, has shared his experience of living with Crohn’s disease after contributing to a research study supported by the National Institute for Health and Care Research.

Living with Crohn’s disease

Phil, 46, was diagnosed with Crohn’s disease at the age of 20. At the time, he was severely ill and malnourished. He spent several years moving between different drugs and steroids, experiencing only short periods of remission.

Crohn’s disease is a form of inflammatory bowel disease that causes long-term inflammation of the digestive system. While there is no cure, treatments can help manage symptoms such as severe stomach pain and diarrhoea.

Phil has described the condition as a constant, low-level pain that becomes hard to distinguish over time, with fatigue being the most debilitating symptom. He later began biologic medicines, which gave him longer periods of stability but also affected his immune system.

Surgery and family life

Five years ago, Phil required major surgery to reroute part of his digestive system. He lives with his wife of ten years, Alison, a teacher, and their two teenage children. Balancing family life with Crohn’s has been challenging, particularly as the impact on mental and sexual health is often overlooked.

Phil says that when he was first diagnosed, the focus was on saving his life, with mental and sexual health not discussed at all.

Taking part in the MenSH-IBD study

After seeing an opportunity to get involved in the MenSH-IBD study, which aims to improve how nurses assess and support the sexual health needs of men with inflammatory bowel disease, Phil signed up straight away.

The study is delivered with support from the NIHR Research Delivery Network and was carried out online through Be Part of Research, a free service that matches people with health and care studies across the UK.

Phil completed an anonymous online questionnaire before taking part in a one-to-one interview with a research nurse. He described the interview as empathetic and said it encouraged meaningful conversations with his wife about how Crohn’s affects their relationship.

He also said the experience helped him reflect more on his mental health, rather than focusing solely on the physical aspects of the condition.

Encouraging others to get involved

Phil has since seen the study move into its next stage and says knowing he played even a small role has been rewarding. He is now encouraging others, particularly men, to consider taking part in health research.

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 Be Part of Research.