Sexuality as lived incompleteness: exploring intimacy and sexuality experiences of people living with inflammatory bowel disease

Abstract Background Sexual function in those living with Inflammatory Bowel Disease (IBD) is known to be affected by their condition, with impact on their psychosocial well-being. Little is known about the causality of low sexual functions scores and their contribution to low quality of life reports. The aim of this study was to explore how intimacy and sexuality is experienced in the context of IBD. Methods This was a phenomenological study guided by van Manen’s methodology. Data were collected from 43 participants from interviews and narrative accounts submitted via Google Forms. Reflection on four existential domains (body, relationships, space and time) and thematic analysis were used to interpret the data. Results Four themes were generated from data analysis: Otherness of the sick body, Interrupted connectedness, Missing out on life fullness and Fragmented openness. These led to the overarching theme Sexuality as lived incompleteness, which reflected the essence of the experiences described by participants. Their experiences were deeply embedded in everyday life, and the IBD posed an obstacle to intimacy and sexuality, negatively affecting their life, relationships, family planning and their social position, imposing limitations and isolation. Conclusion IBD has a significant impact on sexual well-being with negative effects on overall quality of life, which may be unknown to healthcare professionals, therefore remain unaddressed. A better understanding of the potential issues could help healthcare professionals identify and address concerns and worries related to sexual well-being, and approach them in a reflective, holistic manner in situations arising in practice.