The Impact of Inflammatory Bowel Disease on Intimacy: A Multimethod Examination of Patients’ Sexual Lives and Associated Healthcare Experiences

Abstract

Background

Inflammatory bowel disease (IBD) can negatively impact sexual well-being, and some patients desire healthcare for these issues. Research capturing the lived experiences of patients in these areas is lacking. The present study investigated the sexual well-being impacts of IBD (objective 1) and patients’ experiences accessing support for these concerns in the healthcare system (objective 2) through multimethod analyses.

Methods

A total of 480 adults with IBD were recruited for an online survey study. Reflexive thematic analysis was used to analyze responses to 2 open-ended questions (ie, qualitative data; question 1, n = 326, question 2, n = 309). Frequency analyses and contingency tables were used to analyze quantitative data (n = 436).

Results

Thematic analysis (objective 1) generated 8 themes highlighting the negative impacts of IBD on patients’ sexual/intimate lives (eg, sexual activity, intimate relationships) and the influence of broader psychosocial experiences (eg, self-perception, mental health) on patients’ sexual well-being. Quantitative analyses (objective 2) indicated that 39.2% of participants wanted sexual health information from a healthcare provider, but only 5.7% of our sample reported both wanting and receiving this information. Thematic analysis generated 5 themes highlighting the lack of support and information available for sexuality concerns in IBD healthcare and detailed patients’ perceived barriers to obtaining support in this area.

Conclusions

IBD has myriad impacts on patients’ sexual lives. However, patients who want healthcare in this area rarely receive satisfactory support.

Key Messages.

What is already known?

Inflammatory bowel disease (IBD) negatively impacts sexual well-being. However, sexuality is rarely adequately addressed in healthcare settings.

What is new here?

Qualitative responses reflected patients’ lived experiences, exemplifying IBD’s impact on sexual well-being and the psychosocial consequences of sexual difficulties. Participants qualitatively recounted healthcare experiences in this area, furthering evidence of the lack of satisfactory care.

How can this study help patient care?

Results illustrated the complex impacts of IBD on sexual well-being, highlighting to healthcare providers the importance of sexuality in IBD patient care. These findings indicate the need for improved quality and accessibility of healthcare for sexual difficulties among those with IBD.

Introduction

Inflammatory bowel disease (IBD) is a chronic gastrointestinal condition that affects well-being (eg, physical, psychological, social) for those living with the disease.¹ In a recent epidemiological report from Canada, the psychosocial impact of IBD on patient quality of life was highlighted in addition to disease-related factors.² As such, a biopsychosocial approach has been empirically supported in the conceptualization³ and management of IBD.⁴ Much of the biopsychosocial research on IBD has been focused on mental health concerns such as depression and anxiety.⁵ Although important, there has been less research and subsequent clinical attention paid to other areas of well-being.

One such area is sexual well-being. Sexuality “encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy and reproduction.”⁶ Although difficulties related to sexuality can affect any of these areas, they are often studied as they pertain to the physical aspects of sexual activity and the emotional aspects of intimacy.⁷

There have been calls for more comprehensive research on sexuality and intimacy in IBD.⁸ Of the work done, sexual difficulties seem to be elevated among IBD patients compared with control subjects.⁹ The prevalence rates of sexual difficulties vary by sample and measure used; however, patterns suggest that sexual concerns are not a rare occurrence in IBD (eg, 18%-75%).¹⁰ The presence and extent of sexual difficulties in IBD patients tend to remain consistent over time, with longitudinal studies reporting nonsignificant changes over multiyear study periods.^11,12

Like the conceptualization of IBD, sexual difficulties arise from a complex interaction of biopsychosocial factors. Sexual difficulties in IBD have been linked to biological (eg, disease activity, medications, surgery)^8,13 and psychosocial outcomes (eg, depression, anxiety, body image concerns).^9,13 However, the field of sexuality and IBD has several research and clinical gaps, such as a limited scope of biopsychosocial variables examined, a lack of multimethod studies (ie, those that incorporate quantitative and qualitative elements), and little clinical attention paid to sexual health concerns in disease management.

To illustrate, when surveying the latest practice guidelines from leading IBD organizations,^14-17 sexual difficulties are rarely discussed. Because IBD patients often view their gastroenterologist as their primary provider of care,⁴ and physicians often use medical guidelines as a leading source of evidence-based information on disease management, it is not surprising that routine IBD care rarely addresses the topic of sexuality with patients. Although general IBD practice guidelines have seldom addressed sexuality concerns, there are newly published guidelines specifically on the topics of sexuality, fertility, pregnancy, and lactation.¹⁸ However, their emphasis on the physical aspects of sexual health does not address the psychosocial impacts of sexuality on patient well-being.

For decades, patients have reported that sexual health concerns are rarely addressed in IBD clinical care,¹⁹ with recent publications continuing to highlight this pattern.^9,20 This pattern is problematic given that participants across studies generally report that they desire or expect to receive information and help related to sexuality. For example, over half of a French tertiary care sample of adults with IBD reported that they would expect to discuss the impact of IBD on their sexual functioning with their physician.²¹

Qualitative research illustrates how patients perceive this gap in IBD patient care. In a recent study, the authors conducted a thematic analysis of patients’ narrative accounts of their experiences discussing sexuality concerns in healthcare settings.²² The overarching theme identified was that conversations about sexual health were not happening in IBD patient care despite the importance of the topic to patients. Four main themes illustrated the reasons why such discussions were not taking place. The themes touched on patient barriers (eg, feeling that providers do not care about sexuality, lack of time, or finding it uncomfortable to discuss), accessibility and quality of clinical care (eg, desiring a holistic approach to care and access to information on sexuality in healthcare settings), the need to have meaningful discussions (eg, making time to discuss intimacy issues with patients with sufficient background knowledge), and poorly handled discussions (eg, patients reporting that the few conversations that they had with providers about sexual health went poorly).²² These findings suggest that the healthcare needs of IBD patients surrounding sexuality are not being met. Moreover, these findings demonstrate the power of qualitative methodologies to capture the lived experiences of patients.

Although there has been little qualitative work explicitly examining sexual health among individuals with IBD, the broader qualitative literature on IBD can provide insights into this area of patient well-being. In a recent meta-synthesis of qualitative studies on the impact of IBD, the authors aimed to illustrate the main challenges reported by patients, how these challenges impacted their lives, and how they managed them.²³ Although the scope of the thematic analysis was broad, 2 of the 3 themes identified, and their associated subthemes, touched on issues relating to sexuality. They reported that patients endorsed concerns regarding unpredictability when navigating their sexual life and relationships and emotional turmoil regarding psychosocial issues such as body image and sexual well-being.²³ The quantitative and qualitative research reviewed previously indicates that sexuality concerns IBD patients, but that healthcare in this area is lacking. However, this literature has several gaps, which provided the impetus for the current study.

This study aimed to address these gaps, while replicating and extending existing findings, using a novel, multimethod approach. We sought to capture the lived experiences of a large, diverse sample of individuals with IBD regarding the impacts of their disease on their sexual and intimate lives (objective 1) and associated healthcare experiences for such issues (objective 2). For objective 1, no directional hypotheses were made because a data-driven approach was used to analyze the qualitative responses from participants regarding the impacts of IBD on their sexual and intimate lives. For objective 2, a quantitative approach was used to determine participants’ sexual health information-seeking behavior, particularly the proportion of participants who reported wanting, receiving, and asking for sexual functioning information from healthcare providers (HCPs). Based on past research, it was expected that approximately half of the sample would report wanting this kind of information from HCPs²¹ but less would ultimately receive it.²⁴ It was also expected that those asking for information would not always be the ones who receive it.²⁵ To elucidate patients’ experiences obtaining help for their sexual and intimate lives in the healthcare system, a similar data-driven qualitative approach was used to that in objective 1. There were no directional hypotheses for the latter part of objective 2.

Methods

Participants

Participants were recruited internationally through a variety of methods, including social media (n = 360), online IBD support groups (n = 82), online postings (eg, websites, email) through IBD organizations (n = 11), and other avenues (n = 5). To be eligible for participation, participants had to have been diagnosed with IBD by a specialist, be 18 years of age or older, and be fluent in English. Individuals diagnosed with a major psychiatric disorder (eg, psychosis) or a neurocognitive condition (eg, dementia) that might interfere with their ability to answer the study questions were ineligible. Enrollment in the study occurred between February 2020 and November 2020 as part of a larger, multimethod longitudinal study. However, qualitative data collection only occurred at time 1. A total of 480 participants consented to and completed some part of the time 1 survey. Only 470 provided useable and eligible data. A total of 342 participants responded to the first open-ended question in our survey, with 326 of these responses being codable. A total of 333 participants responded to the second open-ended question, with 309 of these responses being codable. Participant responses were deemed not codable if they were nonsensical or did not provide sufficient information to be coded (eg, “no comment”). The average age of the sample was 34.82 ± 10.80 years. Additional demographic information for participants can be seen in Table 1. Disease characteristics data can be seen in Table 2.

Table 1.

Demographic information for participants.

Ethnicity
Aboriginal	5 (1.1)
Asian	26 (5.5)
Black/African	3 (0.6)
Caucasian/White	421 (89.6)
Hispanic/Latinx	11 (2.3)
Other	21 (4.5)
Country of residence
Canada	371 (78.9)
United Kingdom	12 (2.6)
United States	77 (16.4)
Other	10 (2.1)
Gender identity
Man	66 (13.8)
Nonbinary	2 (0.4)
Woman	397 (82.7)
Do not know	1 (0.2)
Missing	4 (0.9)
Sex assigned at birth
Female	398 (85.4)
Male	68 (14.2)
Missing	4 (0.9)
Transgender
Yes	4 (0.8)
No	458 (95.4)
Do not know	1 (0.2)
Missing	7 (1.5)
Sexual orientation
Asexual	7 (1.5)
Bisexual	35 (7.3)
Gay/lesbian	16 (3.3)
Heterosexual	404 (84.2)
Other	2 (0.4)
Missing	6 (1.3)
Relationship status
Single	125 (26.0)
Married/common law/engaged/committed relationship	335 (69.8)
Divorced	9 (1.9)
Widowed	2 (0.4)
Other	1 (0.2)
Missing	8 (1.7)
Education
Less than high school	2 (0.4)
High school or GED	31 (6.6)
Some college/university	89 (18.3)
Graduate from college/university	214 (45.5)
Some graduate or professional school after college/university	32 (6.8)
Graduate from graduate or professional school after college/university	105 (22.3)
Employment
Employed	331 (70.4)
Unemployed	49 (10.4)
Retired	17 (3.6)
Disabled	40 (8.5)
Student	64 (13.6)

Values are n (%). Some questions were phrased as “select all that apply”; as such, several total percentage values surpass 100%.

Table 2.

Disease characteristics for participants.

IBD diagnosis type
Crohn’s disease	253 (53.8)
Ulcerative colitis	169 (36.0)
Both	44 (9.4)
Missing	4 (0.9)
IBD length
Months	125.75 ± 116.79
Years	10.48 ± 9.73
IBD treatment setting
Primary care	128 (27.2)
Tertiary care	421 (89.6)
Other	38 (8.1)
IBD interventions
Medication	456 (97.0)
Colostomy	16 (3.4)
Ileostomy	56 (11.9)
J-pouch	24 (5.1)
Bowel resection	54 (11.5)
Other	25 (5.3)

Values are n (%) or mean ± SD. Some questions were phrased as “select all that apply”; as such, several total percentage values surpass 100%.

Abbreviation: IBD, inflammatory bowel disease.

Procedure

The study received ethics approval through the Health Sciences and Affiliated Teaching Hospitals Research Ethics Board at Queen’s University. Participants accessed the survey by clicking a link to an online survey platform. Participants read through the letter of information before deciding whether to consent to the study. After participants began the survey, they could provide their email address to enter a draw for a $50 (CAD) gift card. Participants were told that they could discontinue participation in the survey at any time with no consequences. Participants were provided with a debriefing form after survey completion.

Measures

Although the survey was part of a larger project and included validated, quantitative measures of physical, mental, and sexual health, only the measures pertinent to the current article will be discussed. For the qualitative questions, 2 open-ended prompts were used to gather information from participants about the impacts that they perceived IBD to have on their sexual and intimate lives (objective 1) and the healthcare that they received for these experiences (objective 2). As the qualitative literature on IBD and sexuality is sparse, our study was a preliminary analysis designed to broadly assess patients’ lived experiences. As such, focus groups were deemed unnecessary for question generation at this early stage. Instead, we consulted the literature regarding evidence-based practices for qualitative research in sexuality. First, definitions of relevant terms (eg, sexual activity, sexual challenges) were provided to participants in the questionnaire. For the qualitative prompts, participants were asked to tell us about or describe their experiences to facilitate obtaining broad yet rich responses.^26,27 Open-ended questions where individuals describe their experiences are particularly beneficial for qualitative sexuality research.²⁸ Specificity was added to each prompt, given that follow-up with participants is not possible in online studies.²⁹ Narrative responses as opposed to interviews were chosen for qualitative data collection, as self-administered questions are considered useful in sexuality research.^30,31

Participants responded to the following prompts: (1) “Describe any impacts you have experienced in your sexual/intimate life as a result of your IBD”; and (2) “Tell us about your experience in the healthcare system accessing information and/or help related to your sexual/intimate life.”

The quantitative questions used for objective 2 to supplement participants’ open-ended responses asked participants to indicate (using yes/no options) whether they wanted, received, and specifically asked for information on sexual functioning from an HCP. These questions were adapted from a measure used with prostate cancer patients.²⁵

Data Analysis

Qualitative analyses were completed using NVivo 12 (QSR International). Participants’ responses were analyzed using Braun and Clarke’s³² reflexive thematic analysis methodology. An inductive (ie, data-driven) approach to reflexive thematic analysis was chosen to capture participants’ unique, lived experiences.³² The authors followed the 6 recommended steps outlined by Braun and Clarke.³² After reading through responses for initial dataset familiarization, one author generated an initial coding scheme and coded participant responses (K.E.H.). Responses were coded using a semantic approach, which codes for the explicit, surface-level meanings of participant responses.³² In the spirit of reflexivity, the authors (K.E.H., K.M.F.) met to discuss the coding process, complex responses to code, and any alterations that needed to be made to the coding scheme.³² The authors grouped the codes into potential themes and subthemes and reviewed the themes to ensure that there was shared meaning between all codes and data extracts within each theme.³² Both authors then defined and named the codes. Proportions of theme endorsement were calculated to supplement these findings. Quantitative data were analyzed using frequencies and contingency tables in SPSS version 27 (IBM Corporation).

Results

Objective 1: The Impacts of IBD on Sexual/Intimate Life

Reflexive thematic analysis was used in objective 1 to analyze participant responses about the impacts of IBD on their sexual and intimate lives. Eight themes were identified within the data, 4 of which had subthemes. A summary of themes is shown in Table 3, with proportions of theme endorsement displayed in Table 4. A visual depiction representing themes and subthemes is shown in Figure 1.

Table 3.

Summary of objective 1 theme descriptions.

Theme	Definition
Impacts on sexual activity	Defined by participants expressing negative impacts on sexual responding and sexual activity experiences.
Disease-related impacts	Defined by participants indicating the deleterious effects of IBD symptoms, treatment, and flares on their sexual lives and fertility.
Impacts on dating and relationships	Defined by participant reports of concerns with dating and relationships, as well as the potential for negative reactions and difficult discussions with others related to sex and IBD.
Impacts on self-perception	Defined by participants indicating the ways in which IBD has impacted their views of their body, attractiveness, self-esteem, and selves as a sexual being.
Anxiety about sexual life	Defined by participants’ anxieties about the impact of IBD on their sexual lives, as well as concerns about the impact of sexual activity on their IBD.
Mental health impacts	Defined by mental health symptoms such as depression, anxiety, and trauma related to IBD and their effect on participants’ sexuality.
Coping with sexual difficulties	Defined by the various ways in which participants flexibly adapted their sexual activities and associated preparations for their IBD.
Lack of impact on sexual life	Defined by responses of participants who felt that their IBD did not significantly impact their sexual lives.

Abbreviation: IBD, inflammatory bowel disease.

Table 4.

Objective 1 theme and subtheme frequencies.

Anxiety about sexual life	108 (10.79)
Coping with sexual difficulties	16 (1.60)
Disease-related impacts	396 (39.56)
Fertility impacts	6 (0.60)
Impacts from treatment	59 (5.89)
Impacts from symptoms	290 (28.97)
Exacerbation by flares	41 (4.10)
Impacts on dating and relationships	94 (9.39)
Dating impacts	25 (2.50)
Partner reactions	35 (3.50)
Relationship impacts	25 (2.50)
Difficulty discussing with others	9 (0.90)
Impacts on self-perception	115 (11.49)
Impact on sexual being identity	5 (0.50)
Low self-esteem	31 (3.10)
Perceptions of the body	79 (7.89)
Impacts on sexual activity	229 (22.88)
Frequency of sexual activity	47 (4.70)
Lack of sexual desire	112 (11.19)
Limits sexual variety	12 (1.20)
General harms to sexual life	30 (3.00)
Orgasm difficulties	4 (0.40)
Lack of enjoyment	14 (1.40)
Sexual activity interruptions	10 (1.0)
Lack of impact on sexual life	35 (3.50)
Mental health impacts	8 (0.80)

Values are n (%). Proportions are based on the total number of individual codes in the dataset for this question (n = 1001).

Figure 1.

Diagram of objective 1 themes and subthemes.

Theme 1: Impacts on Sexual Activity

The first theme includes participants’ descriptions of IBD negatively impacting various aspects of sexual activity. Participants described difficulties with general aspects of sexual responding (desire, arousal, orgasm) as well as IBD-specific impacts.

Theme 1, subtheme 1 was frequency of sexual activity. Participants reported that their frequency of sexual activity decreased due to a wide variety of IBD impacts, including pain, fatigue, body consciousness, lack of desire, and flares. Some participants reported a lower-than-normal frequency of sexual activity, while others reported stopping or avoiding sexual activity altogether due to the severity of their condition or feeling that IBD made sexual activity impossible.

“In general, I have been less intimate since I was diagnosed with UC.”

Theme 1, subtheme 2 was lack of sexual desire. Many participants mentioned experiencing a decrease in sexual desire due to their IBD. Often, participants saw this lack of desire as occurring due to certain IBD symptoms (eg, nausea, bloating, fatigue) or other disease-related sequelae (eg, negative body image, medication side effects). Some participants indicated a lack of desire without connection to other disease impacts.

“When my disease is active, I don’t want to have sex at all. I feel like my body is gross and I don’t want to tolerate the pain and potential embarrassment. When my disease isn’t active…I still have a very low libido and feel quite anxious about having sex.”

Theme 1, subtheme 3 was limits sexual variety. Participants reported that IBD often rendered them unable to engage in new or varied sexual experiences. Some participants mentioned a general loss of varied sexual experience, while others mentioned avoiding specific sexual positions or speeds. Anal penetration was commonly avoided due to pain or obstruction by skin tags.

“I have avoided different types of sexual experience[s] due to my IBD.”

Theme 1, subtheme 4 was orgasm difficulties. Some participants mentioned that IBD negatively impacted their ability to reach orgasm, with one participant noting that this was due to surgical treatment. Interestingly, some cited fears of orgasming due to concerns that it might catalyze their bowel symptoms.

“After…surgery there [were] big differences in my physical response to be aroused. This also made climax very difficult.”

Theme 1, subtheme 5 was sex is not enjoyable. Some participants explained that although they engage in sexual activity despite their IBD, these sexual activities are still unenjoyable. Participants characterized sexual activity as unpleasant, uncomfortable, and less satisfying due to various IBD symptoms such as pain, bloating, or fatigue. Participants also reported feeling that partaking in sexual activity does not come as easily to them as it used to.

“I often can’t fully concentrate on the pleasure of intercourse because of my Crohn’s disease.”

Theme 1, subtheme 6 was sexual activity interruptions. Some participants touched on the IBD-specific concern of bowel symptom urgency interrupting sexual activity. Participants mentioned that needing to use the washroom during or after sexual activity due to bowel issues negatively impacted their sexual activity and their ability to get in the headspace for sexual activity. Many participants also expressed anxiety about this symptom occurring.

“Urgency to use the washroom during sex can come up and be very awkward.”

Theme 1, subtheme 7 was general harms to sexual life. While some participants commented on specific interferences of IBD in their sexual lives, others mentioned feeling that IBD had a widespread negative impact on their sexual life overall. Participants in this subtheme noted that their sexual life was nonexistent, ruined, or unsatisfying, pointing to the far-reaching impacts of IBD on an individual’s whole sexuality.

“My sexual/intimate life has been pretty non-existent to be honest.”

Theme 2: Disease-Related Impacts

Responses in theme 2 encompass participant reports that the disease aspects of IBD impacted their sexuality. Participants described how IBD symptoms, flares, and treatment affected their sexual life, including fertility and pregnancy.

Theme 2, subtheme 1 was impacts from symptoms. Many participant responses illuminated how specific IBD symptoms impacted their sexual life. Participants reported that abscesses, fistulas, fissures, and hemorrhoids could cause pain, lowered sexual desire, and increased self-consciousness and sexual avoidance. Bloating was commonly said to cause discomfort, lowered sexual desire, and self-consciousness. Nausea was reported to lower sexual desire as well. Bowel symptoms caused all previously mentioned sexual impacts, as well as anxiety during sexual activity. Fatigue was frequently cited as causing significant impacts on participants’ sexual lives, decreasing sexual desire. Participants also reported that various types of IBD-related pain (full-body pain, abdomen pain, joint pain, etc.) interfered with their sexual life.

“Symptoms of UC cause me to not want to have sex or feel “sexy,” therefore I do not initiate very often.”

Theme 2, subtheme 2 was impacts from treatment. Participants expressed that many IBD treatments negatively impacted their sexual life. Side effects of IBD medication were reported to negatively impact respondents’ interest in engaging in sexual activity and their body confidence. IBD surgery was said to increase pain, lower confidence/increase self-consciousness (eg, due to the presence of medical devices or scars), and cause incontinence during sexual activity. During sexual activity, participants reported that the need to manage their surgical/medical devices caused interruptions. Surgery-related consequences were noted to decrease interest in and frequency of sexual activity in participants.

“Sex with an appliance and an ileostomy was difficult due to [the] appliance itself and because it made me self-conscious.”

Theme 2, subtheme 3 was exacerbation by flares. Participants often cited disease flares as causing or exacerbating negative impacts on their sexual life. Participants reported that their frequency of sexual activity and desire to engage in it decreased during disease exacerbation periods. These responses were contrasted by some participants’ indications that their sexual life was largely unimpacted during remission.

“When my disease is in remission my sexual/intimate life is “my normal,” but when I am having a flare (currently) my UC impacts this part of my life dramatically.”

Theme 2, subtheme 4 was fertility impacts. Some participants in our sample mentioned negative impacts on pregnancy and fertility. Participants in this theme reported that their IBD had caused issues such as irregular menstrual cycles, ovary damage, and inability to conceive.

“In the past month my desire and enjoyment has been greatly affected by my infertility.”

Theme 3: Impacts on Dating and Relationships

This theme encompasses participant reports of IBD negatively impacting their experiences with dating and romantic relationships. Participants’ responses underscore the intimacy-related impacts of IBD beyond just sexual activity.

Theme 3, subtheme 1 was dating impacts. Participants reported that IBD negatively impacted their ability to meet new partners and form new romantic relationships. Participants reported feeling embarrassed about experiencing their IBD symptoms in front of others, worried about disclosing IBD, and worried about experiencing pain or bowel symptoms during a date. Due to these challenges, participants reported feeling reluctant to date, with some reporting that they isolated themselves from potential relationships and avoided dating.

“I’ve tried dating after my diagnosis and I have found it to be very difficult. I find it difficult to decide whether to disclose my CD to others.”

Theme 3, subtheme 2 was relationships impacts. Participants explained how IBD harmed their already established romantic relationships. Some participants reported experiencing general difficulties or tension in their relationship due to IBD, while others reported that IBD caused the loss of an established relationship. A few participants mentioned that their partners became frustrated due to their IBD-related sexual difficulties. Participants reported feeling shame or guilt for causing difficulties in their relationships, with some expressing that they believed they were disappointing their partners and that their partners deserved better.

“In the past, my IBD always made me feel guilty when I wasn’t able to have sex when my partner wanted to.”

Theme 3, subtheme 3 was partner reactions. Participants reported both positive and negative partner responses in reaction to the sexual impacts of IBD. Unfortunately, some participants reported a lack of understanding from their partners when it came to grasping the extent and severity of their symptoms and the impact that these symptoms could have on their sexuality. Some participants reported that their partners expressed dissatisfaction with their frequency of sexual activity. A few participants also mentioned that their partners avoided initiating sexual activity due to assuming they were unwell or in pain. Respondents also reported positive partner reactions to IBD difficulties, such as patience, understanding, open communication, and flexibility.

“I’m in pain a lot and my partner interprets [that] as I don’t want to engage sexually.”

Theme 3, subtheme 4 was difficulty discussing with others. Some participants in our sample described difficulty navigating conversations about IBD with romantic partners. They expressed feeling nervous to disclose their diagnoses to new partners. Those with established partners reported that it could be challenging to have conversations about IBD and its impacts within their relationships (eg, discussions with partners about relapse).

“I am often embarrassed or nervous to bring it up due to stereotypes and misconceptions about Crohn’s.”

Theme 4: Impacts on Self-Perception

Participants’ responses in this theme described how IBD altered their sense of self. Participants indicated how IBD had changed their view of themselves as a sexual being, their self-esteem, and their perception of their bodies, which in turn impacted their sexual lives.

Theme 4, subtheme 1 was impact on sexual being identity. Participants described the connections between their IBD and its impact on their identity as sexual beings. Participants reported feeling that their body was the “enemy” or “betraying” them when it negatively impacted their sexual life. Some participants reported feeling unable to separate their sexual selves from their disease.

“It’s hard to feel like a sexual being when your body betrays you.”

Theme 4: subtheme 2 was low self-esteem. Participants expressed that IBD, and its symptoms, decreased their self-esteem or made them self-conscious, negatively impacting their sexual life. Some participants did not indicate a specific cause for low self-esteem, while others tied their low self-esteem to the presence of medical devices (eg, ostomy bags) or their IBD symptoms (eg, incontinence, fistulas).

“It has greatly reduced my confidence.”

Theme 4, subtheme 3 was perceptions of the body. Participants perceived changes in their bodies due to IBD treatment or symptoms, often resulting in changed views on their attractiveness and body image. While some participants commented objectively that their bodies had changed due to IBD, many reported low body confidence due to these changes. Participants expressed that they no longer found their bodies attractive, sexy, or desirable, and worried that their sexual or relationship partners would feel the same way. A few participants also expressed that they had lost trust in their bodies. For example, not trusting their body to bring them pleasure, or not trusting their body to not be incontinent during sexual activity.

“I also have a difficult relationship with my body because I don’t trust it to work. It’s hard to have confidence, which is so important for me if I want to have sex.”

Theme 5: Anxiety About Sexual Life

The responses in this theme capture participants’ anxieties about the potential consequences of engaging in sexual activity while having IBD. Participants expressed anxiety about experiencing bowel-related symptoms (eg, passing gas, incontinence) during sexual activity and nervousness about experiencing pain. Additionally, some respondents reported worrying that sexual activity could cause an exacerbation of their IBD symptoms. Participants reported concerns about the presence of their medical devices during sexual activity and the possibility of exposing their ostomy during sexual activity or leaking accidentally from their bag. Several participants reported anxieties about their hygiene during sexual activity, such as being unclean, malodorous, or “too dirty” to engage in sexual activity. Participants also expressed that their uncertainty surrounding the timing of their IBD symptoms created anxiety in their sexual life. Overall, participants reported that these anxieties could impact their sexual desire and ability to be present and enjoy sexual activity.

“The stress of not knowing how I will feel impacts my sex life.”

Theme 6: Mental Health Impacts

Participants’ responses in this theme mentioned the connections between mental health, IBD, and one’s sexual life. Participants noted that experiencing depression and anxiety due to their IBD could harm their sexual lives, namely their sexual desire. A few participants also mentioned that the trauma that they experienced from living with IBD negatively impacted their sexual lives.

“Symptoms of IBD lead to a depressed mood causing less interest in sex.”

Theme 7: Coping With Sexual Difficulties

Responses in this theme expressed the variety of ways that participants (alone or with their sexual partners) cope with the negative impacts of IBD on their sexual life. When they were unable to engage in general or specific types of sexual activity due to IBD, participants reported engaging in alternate activities instead (eg, cuddling rather than engaging in sexual activity, oral sex instead of penetrative sex). Respondents also indicated that when certain sexual positions were difficult due to their IBD, they engaged in positions conducive to avoiding pain, discomfort, or pressure on specific body areas. Participants reported engaging in preparation before sexual activity (eg, fasting, using enemas, taking showers, discussing with a partner) to negate potential problems when being sexual. While these strategies highlight participants’ flexible responses to sexual concerns, some individuals indicated that these behaviors harmed their ability to have spontaneous sexual activity, which may be an essential part of some participants’ sexual lives.

“When in a flare sex is not an option, alternative intimate activities like cuddling, hugging, and massage are done.”

Theme 8: Lack of Impact on Sexual Life

Although most participants in our sample reported that IBD negatively impacted their sexual/intimate life in some way, other participants reported their sexual life to be unaffected by IBD. While some respondents simply noted without explanation that their sexual life was unaffected, others attributed this lack of negative impact to successful IBD medication/treatment, support and understanding from their partners, the recency of their IBD diagnosis, or personal reasons such as asexuality or lacking a partner. Some participants reported experiencing mild impacts on their sexual life (eg, occasional pain) that they felt did not harm their sexual life overall. In addition to a lack of impact, a few participants mentioned that sexual activity could have a positive impact, be enjoyable and make them feel better.

“My CD does not impact my sex life because my spouse is supportive.”

Objective 2: Experiences Accessing Information and/or Help Related to Sexual/Intimate Life in the Healthcare System

Before engaging in qualitative analysis for our second open-ended question, we used frequency analyses to quantify the proportion of participants who wanted, received, and asked for information on sexual functioning from HCPs to add context to our qualitative results. Contingency tables were also used to examine the differing proportions of participants who wanted or did not want information and whether participants in these groups received information. These frequencies are displayed in Table 5. A total of 39.2% of participants desired information on the topic of sexual functioning from an HCP. Less than 6% of those who wanted information received it, while 33.5% of those who wanted information never received it. Less than 5% of individuals received information despite not wanting to receive it, and over half of those who did not want information did not receive it.

Table 5.

Participant experiences receiving sexual functioning information from HCPs.

Did you want information on this topic?
Yes	171 (39.2)
No	265 (60.8)
Did you receive information on this topic?
Yes	47 (10.8)
No	389 (89.2)
Did you specifically ask for this information?
Information given without asking	28 (60.9)
Asked for information	18 (39.1)
Wanted information and received information	25 (5.7)
Wanted information but did not receive it	146 (33.5)
Did not want information but received it	22 (4.7)
Did not want information and did not receive it	243 (55.7)

Values are n (%). Only those participants who answered “yes” to having received information on the topic of sexual functioning were posed the question asking whether they specifically asked for the information, hence the significantly smaller number of responses. Percentages in these analyses represent the proportions of participants who were shown the question and endorsed a particular response.

Abbreviation: HCP, healthcare provider.

Reflexive thematic analysis was again used in objective 2 to analyze participant responses about their experiences in the healthcare system accessing information and help related to their sexual and intimate lives. Five themes were identified within the dataset, 3 of which had subthemes. A written summary of themes is shown in Table 6, with proportions displayed in Table 7. A visual depiction representing themes and subthemes is shown in Figure 2.

Table 6.

Summary of objective 2 theme descriptions.

Theme	Definition
Lack of supportive healthcare experiences	Defined by participants expressing a lack of support from both HCPs and the healthcare system itself when seeking help for sexuality/intimacy issues.
Lack of valuable information	Defined by participants reporting a lack of accessible information about IBD and sexuality that is of appropriate relevance and depth for their sexuality concerns.
Patient factors affecting support	Defined by participant reports that they are not seeking support for sexuality and intimacy issues due to personal factors that affect their interest and motivation.
I have to be my own support	Defined by participant reports of using self-reliant strategies to seek support and help for sexuality and intimacy issues, often due to a lack of support from healthcare system.
Support is out there	Defined by participant descriptions of positive experiences of receiving support for sexuality and intimacy issues.

Abbreviation: HCP, healthcare provider.

Table 7.

Objective 2 theme and subtheme frequencies.

Lack of supportive healthcare experiences	121 (17.4)
HCP does not care about sexuality	74 (10.6)
HCP does not understand IBD and sexuality	22 (3.2)
Healthcare system does not support me	25 (3.6)
Lack of valuable information	336 (48.3)
There is no information	261 (37.5)
Lack of holistic information	75 (10.8)
Patient factors affecting support	150 (21.6)
Not everyone is looking for support	121 (17.4)
Patient barriers to accessing support	29 (4.2)
I have to be my own support	33 (4.7)
Support is out there	56 (8.0)

Values are n (%). Proportions are based on the total number of individual codes in the dataset for this question, n = 695.

Abbreviation: HCP, healthcare provider; IBD, inflammatory bowel disease.

Figure 2.

Diagram of objective 2 themes and subthemes. HCP, healthcare provider; IBD, inflammatory bowel disease.

Theme 1: Lack of Supportive Healthcare Experiences

This theme encompasses participant responses that endorse poor and unsupportive experiences with individual HCPs and the healthcare system more broadly when seeking support for sexuality-related issues.

Theme 1, subtheme 1 was HCPs do not care about sexuality. Participants in our sample indicated that they felt their IBD-related sexual concerns were not taken seriously or seen as important by HCPs. Participants noted a lack of discussion about and acknowledgment of topics relating to intimacy or sexuality from their HCPs. Participants reported a lack of initiation of these discussions from HCPs, with some reporting that they had to initiate these conversations themselves. Many participants expressed feeling that the lack of importance attributed to the topic had negatively impacted their care experience.

“I find sexual health, it’s [sic] impact on mental health, and fertility are often forgotten.”

Theme 1, subtheme 2 was HCPs do not understand IBD and sexuality. Participants expressed that many HCPs did not seem trained to help them with their sexual or intimate lives. Several participants described HCPs as being confused when discussing symptoms of sexual difficulty associated with IBD, with many seeming unsure how to help. Some participants felt that HCPs did not appear to understand the link between IBD and sexual health. This misunderstanding often led participants to not receive adequate care.

“I do feel…that my physician does not understand how much the pain impacts my sex life.”

Theme 1, subtheme 3 was the healthcare system does not support me. Participants reported feeling a lack of support for their sexual concerns from the entire healthcare system that went beyond just a lack of support from individual HCPs. Participants experiencing sexuality issues reported being referred between many HCPs, experiencing long wait times, and having difficulty getting a diagnosis for their sexual concerns, both experiences that compromised their quality of care.

“The health care system does not care that this is a symptom. You will be lucky if it is acknowledged as a problem at all.”

Theme 2: Lack of Valuable Information

Participant responses included in this theme discuss the lack of information available about IBD and sexuality. Participants described types of information they lacked, noting specific missing content and mediums of information delivery.

Theme 2, subtheme 1 was there is no information. Many participants indicated that they had never received information about how IBD might impact their sexual and intimate lives. While some respondents generally commented on this lack of information, others indicated specific healthcare sources from which they did not receive this information (eg, gastroenterologists). Participants provided examples of mediums that lacked information on sexuality. For example, participants noted they had not seen this information on social media. Across responses, participants expressed dissatisfaction with the accessibility and availability of information about IBD and sexuality.

“Unfortunately, I have not been provided any resources from any health professionals about my sex life.”

Theme 2, subtheme 2 was lack of holistic information. Participants who had received information about sexuality and IBD often noted that the information they received was neither holistic nor relevant. Some respondents reported that the information focused only on IBD’s impacts on medical aspects of sexuality, such as medication, surgery, pregnancy, and fertility. Participants noted that this information lacked the breadth to be helpful for their more psychosocial, sexual, or intimate concerns. Respondents spoke of written materials as the common, and often only way, of distributing information about sexuality, rather than through various mediums such as HCP conversations or online. These written materials were said to be vague and to lack information beyond that described previously.

“With doctors (mostly my surgeon), I was only really given information on possible implications surgical options may have on fertility — never on sexual activity.”

Theme 3: Patient Factors Affecting Support

Responses in this third theme describe why some participants in our sample did not actively seek out information or help for their sexual and intimate lives. Both a personal lack of motivation and barriers were said to prevent participants from seeking this information.

Theme 3, subtheme 1 was not everyone is looking for support. While many participants’ responses indicated a wanting for support for their sexuality and intimacy issues, this was not unanimous. Many participants reported that they had never asked for support for sexuality. However, some explicitly noted that support had never been offered to them, suggesting that the lack of discussion initiation from HCPs does not go unnoticed. Other participants stated that they did not seek support in this area because they did not need it. Participants in this category indicated that they did not experience sexual difficulties, lacked sexual activity overall, or felt that any present sexual difficulties did not impact their quality of life or relationship. Thus, these participants did not find it necessary to seek out information on sexuality.

“I have not been offered any information, but I have also not asked my healthcare provider for any information.”

Theme 3, subtheme 2 was patient barriers to accessing support. Several respondents indicated that various barriers prevented them from seeking support for their sexual and intimate concerns from HCPs. Some participants reported feeling embarrassed or uncomfortable bringing up such issues, with some explicitly indicating this was due to an age or gender gap between themselves and their HCP. Other participants felt discomfort initiating discussions because they felt their HCPs were unavailable or lacked time to discuss these concerns. Participants sometimes mentioned that their HCP’s lack of initiation of discussion about sexuality led them to believe that sexuality was not to be discussed. If HCPs had begun a conversation about sexuality, participants noted they would have felt validated to voice their concerns.

“I don’t bring it up out of embarrassment and shame, but I would feel a lot of relief if my doctors shared such information with me, if only to normalize a lot of my feelings and experiences.”

Theme 4: I Have to Be My Own Support

Responses in theme 4 describe the self-reliant strategies participants used to access information and help for their sexual and intimate lives when it was not available from the healthcare system. Participants reported needing to advocate for themselves to receive this information in healthcare settings and needing to have the courage to discuss their sexual concerns with their HCPs. Unfortunately, some respondents reported that even when they requested to discuss sexual concerns with HCPs, they did not receive the support they needed, and instead sought support outside of the healthcare system. Participants reported using Internet research, support groups, and organizations to access information unavailable in the healthcare system.

“Overall, my experience is that I have to be the one to bring up sex, ask questions, and do research to drive my treatment forward.”

Theme 5: Support Is Out There

Some participants in our sample endorsed having positive experiences accessing support for their sexual and intimate lives in the healthcare system. Respondents reported that these positive experiences came from varied health professionals (eg, gastroenterologists, gynecologists) and endorsed the openness and comfort their HCPs provided. Other participants reflected positively on the ease with which they could access information and help on intimacy and sexuality. Some participants noted that while they had not yet brought up sexuality-related topics with their HCPs, they felt comfort and trust in their provider in having such discussions if needed. Outside of the healthcare system, some participants also indicated having positive and supportive experiences navigating sexual health concerns from their romantic partners.

“Before my first surgery, the ostomy nurse covered sex and she did a good job giving me information that I needed. It lessened my anxiety.”

Discussion

This study examined the impact of IBD on individuals’ sexual and intimate lives (objective 1), as well as their experiences accessing information and help for such issues in healthcare settings (objective 2). These objectives were accomplished using a multimethod approach to capture patients’ lived experiences qualitatively and complement these findings with quantitative data.

The findings for objective 1 suggest that issues related to intimacy and sexuality among those with IBD are present and complex. Thematic analysis of participant responses resulted in 8 themes that highlighted the myriad ways that their sexual lives were impacted (eg, sexual activity, dating and relationships) and through what avenues (eg, disease-related impacts, mental health concerns). Although this analysis took an atheoretical approach, the diverse themes touched on each aspect of the biopsychosocial model, lending support for this approach to the conceptualization of IBD and its sequelae.³ The highly prevalent endorsement of themes discussing negative impacts on participants’ sexual lives suggest that such issues are widespread in this patient population, consistent with previous literature.¹⁰ In addition to using a novel methodology to investigate sexuality in IBD, our study adds richness to the literature, as it is the first to highlight the diverse ways in which sexual activity was impacted for patients, how IBD affected their self-perception, and how they coped with such difficulties.

Despite the extensive impact of IBD on individuals’ sexual and intimate lives, the findings for objective 2 illustrate disparities in IBD healthcare. Like previous literature,^21,24 approximately half of the sample reported wanting information on sexual functioning from HCPs, with a much smaller proportion ultimately receiving information. There was also a mismatch between those who stated that they wanted information and those who received it, similar to findings among a prostate cancer sample.²⁵ These results suggest that patients may be hesitant to receive this information from HCPs and that there may be miscommunication occurring between patients and providers.

The qualitative findings for objective 2 may help shed light on why such communication patterns (or lack thereof) may occur and add nuance to the limited existing literature. Thematic analysis of participant responses resulted in 5 themes touching on the personal-level (eg, discomfort), provider-level (eg, perceived lack of care or knowledge of the topic), and system-level (eg, lack of information or appropriate services) factors that affect patient experiences of receiving healthcare for sexual difficulties. A minority of the sample endorsed feeling that healthcare support was available for such difficulties. Findings from our large, diverse sample extended those from a smaller-scale qualitative study (eg, lack of dialogue on sexuality in IBD care, barriers to seeking support, and negative experiences with discussions)²² as well as uncovered novel themes that add to the literature (eg, system-level factors affecting support, ways in which patients have been their own support, not all patients desire support from HCPs, and some have had HCP support).

Clinical Implications

Our findings can inform future clinical practice. Despite IBD patients reporting a desire for information and help related to sexuality, few clinical guidelines address this topic.^1,14-17 HCPs lacking adequate resources to build competency in this area helps to contextualize why sexuality concerns often go unaddressed in healthcare. Participants in this study were perceptive of these gaps and expressed how the lack of discussion and knowledge surrounding the topic of sexuality and IBD negatively impacted their care. The gaps perceived by our participants map onto those reported from the HCP perspective. In past research, HCPs providing healthcare for sexual concerns report a lack of knowledge on the topic, feeling uncomfortable or unconfident discussing sexuality, and perceiving sexuality to be private or not a priority.^33,34 Expanding clinical guidelines on sexuality issues in IBD through knowledge translation may help to bolster HCP competency in this area.

Outside of competency, balancing patients’ desired care needs and the realities of HCP capacity is critical. Our results suggest that simply asking about sexual concerns can be validating and impactful for IBD patients. However, it is important for providers to first ask whether patients want to discuss this topic while also normalizing sexual health concerns in IBD. Our findings also suggest that ideally, sexuality concerns would be asked about holistically (ie, beyond fertility or dysfunction, but also biopsychosocial contributors to sexual well-being). Having resource or referral suggestions in mind could make such discussions feel more feasible for HCPs, given that comprehensively assessing or treating such issues is understandably unrealistic for many. Guidelines support a multidisciplinary approach to sexual healthcare in IBD.¹⁸ From a practical perspective, and based on our findings, asking about sexuality can be done by any member of the team who has the time and capacity (eg, a mental health professional). For HCPs without such team members, providing information (eg, handouts, websites) or a referral (eg, to an HCP with expertise in sexual health) may be useful and valuable for patients.

Limitations

This study has some notable limitations. Our participants were predominantly White, cisgender, heterosexual, highly educated, relatively young, and identified as women. This limited diversity impacts the generalizability of the findings to individuals of other races/ethnicities, sexual orientations, educational and socioeconomic backgrounds, ages, and genders. Additionally, most participants lived in Canada or the United States, each of which has different healthcare systems. Differences based on country of residence may exist within our qualitative results for healthcare experiences. Post hoc comparisons across countries revealed no significant differences in the quantitative findings. Nevertheless, these findings predominantly represent the healthcare experiences of IBD patients in North America and may not generalize to other continents. To mitigate participant bias in our sexuality survey,³⁵ the study was advertised as a well-being in IBD study, rather than a sexuality study. However, the letter of information did note that the survey had an emphasis on mental health and intimacy/sexuality, which may have deterred some groups from participating. The online administration of the survey may have also contributed to bias. All study participants were required to have access to technology to participate in our survey, thus potentially excluding those who do not have access to technology or do not have technological fluency, such as older individuals or those from lower socioeconomic backgrounds.³⁶

Future Directions

This study has laid the groundwork for future research and knowledge translation. Future studies should prioritize the recruitment of diverse IBD patient samples, especially given that sociodemographic factors (eg, race/ethnicity, age) can impact healthcare experiences for sexual difficulties.^37,38 Consulting with diverse patient partners could facilitate research that captures what is most important to people with broad lived experiences. A clear next step for the qualitative literature is to investigate HCP experiences of providing healthcare for sexual concerns to IBD patients.^33,34 There is also a need for evidence-based, IBD-specific resources about sexuality that are accessible to knowledge users. Knowledge translation efforts should be aimed at providing holistic and practical information to patients and providers to help address the widespread impact of IBD on patients’ sexual well-being and the current state of healthcare support for such issues.

Conclusions

The present study’s findings demonstrate that impacts on sexual well-being among IBD patients are present, widespread, and complex. Information and guidance on intimacy and sexuality in healthcare settings are lacking, with many patients appearing to be hesitant to seek care for such issues. This study provides direction for a path forward to address this critical area of patient well-being.

Conflicts of Interest

The authors declare that they have no conflicts of interest.