Grieving multiple losses: experiences of intimacy and sexuality of people living with inflammatory bowel disease. A phenomenological study

AIM: To explore patient experiences of intimacy and sexuality in those living with inflammatory bowel disease. DESIGN: An interpretative phenomenological study guided by van Manen's framework. Thematic analysis was conducted through interpretation and reflection on four existential domains: body, relationships, time and space. METHODS: Data were collected during 2019-2021 from 43 participants via face-to-face or telephone interviews, as well as anonymous collection of narratives submitted via Google Forms. RESULTS: Four themes were identified: Sexuality as lived incompleteness was the overarching theme representing the essence of the experiences of intimacy and sexuality. This theme covered the four main themes: Otherness of the body, Interrupted connectedness, Missing out on life fullness and Fragmented openness and each corresponded to an existential domain. Intimacy and sexuality are negatively affected by inflammatory bowel disease, with impact on quality of life. Patients experienced grieving multiple losses, from body image and control, to choice of partners and future opportunities. The four domains were difficult to separate and a close inter-relationship between each domain was acknowledged. CONCLUSIONS: A model was developed to draw new theoretical insights to understanding the relationship between sexual well-being and psycho-emotional distress similar to grief. IMPACT: First qualitative study to explore intimacy and sexuality experiences of those living with inflammatory bowel disease. Illness impact on sexuality has negative psycho-emotional implications as a result of losing the old self and capacity to have the desired relationships/sex life. A theoretical model was developed in an attempt to illustrate the close relationship of intimacy, sexuality and psycho-emotional well-being. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in the study design

A decade of waiting: experiences of women living with vulvar Crohn’s disease and interactions with healthcare professionals related to their sexual well-being: a qualitative study

Background: Vulvar Crohn’s disease is a rare cutaneous manifestation of inflammatory bowel disease and to date, studies have reported on under 300 cases worldwide. The condition has an increased risk of malignancy, and diagnosis is often difficult. Treatment protocols are yet to be developed. This paper aimed to provide the first account of patients’ experience of living with vulvar Crohn’s. Methods: A previous qualitative study exploring experiences of sexual well-being in inflammatory bowel disease and experiences of discussing sexual well-being with healthcare professionals found 3 participants who self-reported vulvar Crohn’s disease. Data from the whole cohort (n = 43) were previously reported. Telephone semi-structured interviews were used for data collection. van Manen’s phenomenology of practice framework informed analysis. Results: Due to significant differences in experiences, this subgroup of 3 women with vulvar Crohn’s warranted separate attention. The common theme of the group was A decade of waiting, describing the major delays experienced in being diagnosed. The symptoms reported appeared to be very severe, and sexual well-being was very negatively affected. Conclusions: Women with vulvar Crohn’s trust in healthcare professionals was eroded as a result of a decade delay in diagnosis, while the quality of life and relationships suffered