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.

Living with Inflammatory Bowel Disease: A review of qualitative research studies.

BACKGROUND: Inflammatory Bowel Disease is a chronic, untreatable condition represented by two illnesses, Crohn's and Ulcerative Colitis. Despite high incidence in well-developed industrialised countries, and the significant impact of symptoms on patient's quality of life, little is known about living with Inflammatory Bowel Disease. AIM: To explore the patients' experiences of living with Inflammatory Bowel Disease. DESIGN: A qualitative systematic review. DATA SOURCES: CINAHL, Medline, British Nursing Index and PsycINFO were searched using the following keywords: Inflammatory Bowel Disease AND experiences. We have limited the search to studies published in English from 2000 to 2017. REVIEW METHOD: Thematic synthesis. RESULTS: Data from 23 studies, identified that fatigue, incontinence and uncertainty about future, body image, and lack of information from healthcare professionals dominated the experiences of those living with Inflammatory Bowel Disease. Also, patients living with Inflammatory Bowel Disease were reluctant to disclose their illness due to lack of public awareness and stigma surrounding symptoms. From these, an overarching theme has been identified: Living in isolation and exclusion. CONCLUSION: Patients with Inflammatory Bowel Disease face a variety of problems, often their priorities and those of healthcare professionals differ greatly. Healthcare professionals have little evidence needed to provide adequate, holistic care to this group. With a rise in the Inflammatory Bowel Disease population in newly industrialised countries it is estimated that the condition is turning into a global disease, potentially making long term care unsustainable. More evidence is needed to understand the concerns of this group.

Sacral neuromodulation for faecal incontinence: is the outcome compromised in patients with high-grade internal rectal prolapse?

BACKGROUND: High-grade internal rectal prolapse appears to be one of the contributing factors in the multifactorial origin of faecal incontinence. Whether it affects the outcome of sacral neuromodulation is unknown. We compared the functional results of sacral neuromodulation for faecal incontinence in patients with and without a high-grade internal rectal prolapse. METHOD: One hundred six consecutive patients suffering from faecal incontinence, who were eligible for sacral neuromodulation between 2009 and 2012, were identified from a prospective database. All patients underwent preoperative defaecating proctography, anorectal manometry and ultrasound. Symptoms were assessed preoperatively and at 12 months after operation using a standardized questionnaire incorporating the Faecal Incontinence Severity Index (FISI range = 0-61) and the Gastrointestinal Quality of Life Index (GIQLI). Success was defined as a decrease in the FISI score of 50 % or more. RESULTS: High-grade internal rectal prolapse (HIRP) was found in 36 patients (34%). The patient characteristics were similar in both groups. Temporary test stimulation was successful in 60 patients without HIRP (86%) and in 25 patients with HIRP (69 %) (p = 0.03). A permanent pulse generator was then implanted on these patients. After 1-year follow-up, the median FISI was reduced in patients without HIRP from 37 to 23 (p < 0.01). No significant change in FISI score was observed in patients with a HIRP (FISI, 38 to 34; p = 0.16). Quality of life (GIQLI) was only improved in patients without HIRP. A successful outcome per protocol was achieved in 31 patients without HIRP (52%) versus 4 patients with HIRP (16%) (p < 0.01). CONCLUSION: The presence of a high-grade internal rectal prolapse has a detrimental effect on sacral neuromodulation for faecal incontinence.