Investigating the experiences of LGBTQI+ individuals with IBD

A new study by researchers from City St George’s, University of London will investigate the experiences of LGBTQI+ individuals who have recently been diagnosed with Inflammatory Bowel Disease (IBD), aiming to address the lack of understanding of the impact of the condition on their sense of identity and lived experience.

IBD, which includes conditions like Crohn’s Disease and Ulcerative Colitis, affects over 500,000 people in the UK and millions globally. This incurable condition causes long-term inflammation in the digestive system, leading to symptoms like stomach cramps, fatigue and diarrhoea. In some cases, gastrointestinal surgery may be required. Many people with IBD also worry constantly about incontinence and the location of restrooms when they leave home.

World IBD Day, which is observed annually on 19 May, aims to raise awareness of the challenges faced by individuals living with IBD.

Impact of IBD

Research indicates that over 40% of individuals with inflammatory bowel disease (IBD) experience sexual problems, which can significantly impact their sexual function and quality of life.

IBD researcher and psychotherapist Dr Alan Priest, a Visiting Lecturer in Counselling Psychology at City St George’s, University of London, has previously highlighted this little-understood area of research.

“Currently there is a lack of understanding of LGBTQI+ individuals’ experiences of living with IBD, especially those recently diagnosed,” said Dr Priest. “Their voices have historically been under-represented in clinical research, arguably leading to poorer outcomes, including stigma related to both their IBD and sexual orientation.”

Addressing research gaps

To bridge this gap, Kushal Parekh, a doctoral research student on the DPsych course at City St George's, is currently conducting research to further explore the experiences of LGBTQI+ individuals who have been recently diagnosed with IBD.

What is known is that those in the LGBTQI+ community often report difficulties in engaging in preferred sexual practices. Many also struggle to discuss sexual health issues with healthcare professionals, yet research from the heteronormative community suggests that integrating IBD into one’s identity enhances psychological well-being and improves quality of life. However, for LGBTQI+ individuals, these identity transformations are currently not well researched, potentially worsening their psychological and emotional difficulties.

The study aligns with the themes of World IBD Day: awareness, inclusion, and addressing the research gaps affecting marginalised communities. By giving LGBTQI+ individuals the opportunity to share their experiences, the study aims to improve treatment methods, enhance patient care, and develop more effective or novel therapies.

Kushal said: “Recognising people’s identities is crucial in providing inclusive healthcare, especially in talking therapies, where tailored support can make a significant impact. By sharing their experiences in this study, participants will illuminate the hidden challenges faced by LGBTQI+ individuals with IBD, contributing to more inclusive and compassionate healthcare for everyone.”

LGBTQI+ individuals with IBD who are interested in sharing their experiences anonymously and confidentially are encouraged to participate in the study by contacting: Kushal Parekh at kushal.parekh[at]citystgeorges.ac.uk.