Symptom management needs of patients with irritable bowel syndrome and concurrent anxiety and/or depression: A qualitative study

Abstract

Aims:

To understand the experiences and needs of symptom management among individuals with irritable bowel syndrome and concurrent symptoms of anxiety and/or depression.

Design:

This study used a qualitative descriptive research design.

Methods:

Individuals with a diagnosis of irritable bowel syndrome and concurrent symptoms of anxiety and/or depression participated were recruited through an online ResearchMatch and a listserv. Semi-structured interviews focused on symptoms and experiences with symptom management interventions conducted from June to August 2020. Interviews were transcribed and data were analysed based on thematic analysis.

Results:

Twelve individuals participated in this study; all reported current irritable bowel syndrome and anxiety/depression symptoms. The data analysis cumulated with three themes related to symptom management: (a) irritable bowel syndrome negatively impacts physical and mental well-being; (b) a trial and error approach to symptom management; and (c) challenges with healthcare professionals supporting symptom management including negative interactions with healthcare professionals and lack of nutritional expertize and support.

Conclusion:

There is a need for individualized approaches which consider patients’ current symptoms of anxiety and depression, previous experiences with the trial-and-error process and consideration for intervention delivery methods.

Impact:

There is a limited qualitative research focusing on the experiences of individuals with irritable bowel syndrome and concurrent symptoms of anxiety and/or depression. This research highlights the need for individualized approaches to enhance symptom management that acknowledges patients’ psychological state and past negative experiences with providers and prior dietary regimens.

1 |. INTRODUCTION

Irritable bowel syndrome (IBS) is a disorder of gut–brain interaction in which diagnostic criteria include experiencing abdominal pain and changes in bowel patterns (Vasant et al., 2021). The impact of IBS includes poorer quality of life and disability, as well as missed work and school absenteeism and presenteeism (Buono et al., 2017). IBS commonly co-occurs with anxiety and depression, with up to 50% of patients with IBS reporting anxiety or depression (Grinsvall et al., 2018; Hu et al., 2021; Turkiewicz et al., 2021). The gut–brain axis refers to the close connection that occurs between the brain and the gut, commonly through neurotransmitters such as serotonin, metabolites of bacteria and through the afferent sensory fibres of the vagus nerve (Lee et al., 2017). Additionally, the brain communicates with the gut through the central and autonomic nervous systems, using efferent pathways targeting the intestinal wall, as well as signalling via the hypothalamic–pituitary–adrenal (HPA) axis (Carabotti et al., 2015). As such, previous research may have overlooked the unique needs of those with concurrent anxiety and/or depression and bowel symptoms. Nurses are the most common healthcare providers worldwide and have the potential to address the experiences and needs of individuals with IBS and concurrent anxiety and/or depression. Therefore, it is important to understand the subjective experiences and symptom management strategies used by patients with IBS who also experience symptoms of anxiety and/or depression to inform ways to enhance self-management of symptoms.

2 |. BACKGROUND

Adults with IBS have greater levels of anxiety and depression than the general population (Arasteh et al., 2018; Lee et al., 2017; Mykletun et al., 2010). Individuals who have IBS and symptoms of anxiety and/or depression experience additional burden of disease as they have greater IBS symptom severity, reduced quality of life and greater healthcare utilization compared with individuals with IBS alone (Cho et al., 2011; Goodoory et al., 2021; Kopczynska et al., 2018; Midenfjord et al., 2019). Effective symptom management interventions are needed to consider the overlap of anxiety, depression and chronic gastrointestinal symptoms in this population.

A variety of effective interventions have been designed to reduce symptoms for individuals with IBS (Black & Ford, 2021; Chen, Zhang, et al., 2022; Cong et al., 2018; Vasant et al., 2021). The two most widely used interventions are the low fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP) diet and cognitive behavioural therapy (CBT), yet little is known regarding experiences using these symptom management interventions among individuals with IBS and concurrent symptoms of anxiety and/or depression. Current evidence supports the low FODMAP diet as superior to medication (e.g. spasmolytics) in reducing IBS symptoms (Carbone et al., 2022; Liu et al., 2020). Some research indicates that although the low FODMAP diet is effective in reducing gastrointestinal symptoms, it may be less effective in reducing symptoms of anxiety and depression (Chan et al., 2022; Kortlever et al., 2019). CBT targets cognitions and behaviours associated with IBS symptoms, and can include relaxation strategies and psychoeducation (Sugaya et al., 2021). However, a recent meta-analysis indicated that patients with comorbid anxiety or depression were less likely to benefit from CBT (Sarter et al., 2021) and few, if any, studies have focused on the unique symptom management experiences and needs of patients with IBS who have concurrent symptoms of anxiety and/or depression.

One approach to understanding the symptom management needs of patients with IBS and concurrent symptoms of anxiety and/or depression is to conduct a qualitative study of their perspectives. Previous qualitative studies of the lived experiences and needs of those with IBS (Molinder et al., 2015; Parlar Kılıc et al., 2020; Skrastins & Fletcher, 2018) and a recently published systematic review of qualitative studies identified four themes of living with IBS: (1) physical, psychological and social consequences (which included anxiety and depression); (2) impact of IBS on working adults; (3) dealing with IBS and (4) sources of support and support needs (Shorey et al., 2021). However, it is not clear from the review or the studies themselves how many participants had concurrent symptoms of anxiety and/or depression as this information was not reported (Shorey et al., 2021). Thus, this study sought to address this gap by specifically focusing on experiences of symptom management among individuals with IBS and concurrent symptoms of anxiety and/or depression. Furthermore, since the current leading interventions may be insufficient for those with symptoms of anxiety and/or depression, it is important to understand the experiences and needs for symptom management among individuals with IBS, anxiety and depression.

3 |. THE STUDY

3.1 |. Aims

The aim of this study was to understand the experiences and needs of symptom management among individuals with IBS who also experience symptoms of anxiety and/or depression. Understanding this lived experience and needs can inform the development and/or personalization of symptom management interventions.

3.2 |. Design

We used a qualitative descriptive research design to collect data on the patients’ perspective of their symptoms, symptom management experiences and needs (Sandelowski, 2000, 2010; Vaismoradi et al., 2013). A qualitative descriptive design enabled a comprehensive summary using everyday language and the ability to stay closer to the data (Sandelowski, 2000, 2010). An inductive thematic analysis approach was selected to enable interpretation of the patient’s experiences and needs related to symptom management.

3.3 |. Sample/participants

Participants were recruited online through ResearchMatch, a national health volunteer registry support by the US National Institutes of Health and through the University of Washington Institute of Translational Health Sciences website. Potential participants completed online screening; data on the screening process has already been published (Kamp et al., 2021). Purposive sampling was used to obtain a diversity of age, gender and race. The inclusion criteria were ages 18–70, met Rome-IV IBS criteria, have a diagnosis of IBS from a healthcare provider, report at least moderate anxiety and/or depression (Generalized Anxiety Disorder-7 > 10; GAD-7 [Spitzer et al., 2006]; Patient Health Questionnaire-9 > 10; PHQ-9 [Kroenke et al., 2001]), and able to read and write in English. The exclusion criteria were: having a first degree relative with colorectal cancer before the age of 60 or multiple ‘Red Flag’ symptoms (i.e. loss of 10 pounds without trying, blood in stool and anaemia) as these may indicate organic causes of gastrointestinal symptoms.

3.4 |. Data collection

Data were obtained through semi-structured interviews conducted between June and August 2020. A semi-structured interview guide was developed by the research team which included backgrounds in nursing, social work, human-centred design and usability. The interview guide included questions about gastrointestinal and psychological symptoms and experiences with previous symptom management approaches. Participants completed the virtual interview from a location that was comfortable and convenient to them with a female nurse scientist who has experience conducting interviews and focus groups (KK). Data collection continued until there was sufficient data for understanding the experiences and needs of symptom management, which occurred after 12 participant interviews. Interviews lasted between 32 min and 1 h and 11 min (mean 47 min) and participants received a $50 gift card. To describe participants and consider the impact of IBS, participants also completed demographic and clinical questionnaires. Demographic questions included age and gender. Clinical questionnaires included the IBS quality of life and Sheehan Disability Scale. The IBS quality of life questionnaire includes nine subscales emotional, mental health, sleep, energy, physical functioning, diet, social role, physical role and sexual relations (Hahn et al., 1997). The Sheehan Disability Scale evaluates functioning in work/school, social life/leisure activities and family life/home responsibilities as well as absenteeism and presenteeism (Leon et al., 1997; Sheehan et al., 1996).

3.5 |. Ethical considerations

Ethics approval was obtained from the University of Washington Institutional Review Board prior to recruitment. Verbal informed consent was obtained prior to conducting the interview. Participants were informed about the purpose of the interview and that they could stop participating at any time. If participants became uncomfortable or anxious, a list of resources was available, although this was not needed in this study.

3.6 |. Data analysis

Audio recordings were transcribed. The data were analysed using thematic analysis based on Braun and Clarke (2006, 2019). The authors began the process of immersion by reading all the transcripts multiple times without notating or tracking codes. After the authors were fully immersed in the content, they went through each transcript to generate initial codes, and met to discuss codes. The codes were then sorted and grouped into themes. The codes and themes were presented to the entire authorship team who provided feedback and discussed any necessary changes. The Consolidated Criteria for Reporting Qualitative (COREQ) studies checklist guided this manuscript (Tong et al., 2007).

3.7 |. Rigour

The Standards for Reporting Qualitative Research (SRQR) guided our approach. To enhance rigour, we used Lincoln and Guba’s evaluative criteria of credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985). Credibility was enhanced by peer debriefing to compare codes and themes and examining the personal values and preconceptions of the researchers. The researchers spanned a multidisciplinary background of nursing, social work and human-centred design. The data analysis was conducted by three authors (KK, HM and LY) who are each registered nurses and also conduct research. KK and LY conduct research in gastrointestinal disorders and HM conducts research in eating disorders. Throughout the process of data analysis, we met regularly to discuss the findings as well as our assumptions which could influence the findings. Transferability, the extent to which findings are applicable in other contexts, was enhanced by providing participant demographics as well as clear study descriptions and research findings. Confirmability and dependability were established through an audit trail.

4 |. FINDINGS

The group consisted of 12 individuals. For IBS subtypes, five had IBS-diarrhoea, five had IBS-mixed and two had IBS-constipation. Nine participants were female and 3 were male. Table 1 presents data on quality of life and disability to further describe the impact of disease, with the majority of participants reporting low quality of life and moderate disability.

TABLE 1.

Participants demographics

Characteristics	Mean (SD)
Age	36.8 (12.2)
Anxiety score	14.1 (5.7)
Depression score	15.0 (6.7)
Quality of life
Emotional	29.7 (32.0)
Mental	65.8 (22.0)
Sleep	72.2 (30.0)
Energy	44.8 (26.9)
Physical	61.8 (29.2)
Food	47.2 (23.5)
Social	53.7 (31.4)
Physical role	33.3 (34.3)
Sex	45.8 (24.0)
Sheehan disability scale
Work/school	6.9 (3.2)
Social life/leisure	6.8 (3.3)
Family life/home	7.0 (2.7)
Missing school, work or being unable to carry out Normal daily activities (days)	2.1 (1.9)
Reduced productivity due to symptoms (days)	3.3 (2.2)

Note: Key: Anxiety range: 0 to 21 (higher indicates greater anxiety); Depression range: 0 to 27 (higher indicates greater depression); Quality of Life range: 0 to 100 (higher indicates greater quality of life); Sheehan Disability Scale range: 0 to 10 (higher indicates greater symptom disruption).

The data analysis cumulated in three themes, with sub-themes, which outline the experiences and needs of managing IBS and concurrent symptoms of anxiety and/or depression: (a) IBS negatively impacts physical and mental well-being; (b) a trial and error approach to symptom management; and (c) challenges with healthcare professionals supporting symptom management. Table 2 provides an overview of the themes and sub-themes.

TABLE 2.

Overview of themes and sub-themes

Themes	Sub-themes
IBS negatively impacts physical and mental well-being	Shared experiences with distressing physical symptoms Relationship between IBS symptoms and anxiety/depression IBS symptoms impact normal activities of daily living Interpersonal relationships and symptom perception
Trial and error approach to symptom management	Identifying strategies for managing symptoms Impractical and ineffective interventions ‘What haven’t I tried?’ - Trying multiple interventions
Challenges with healthcare professionals supporting symptom management	Negative interactions with healthcare professionals Lack of nutritional expertize and support

Abbreviation: IBS, Irritable bowel syndrome.

4.1 |. IBS negatively impacts physical and mental well-being

Participants in this study provided salient insight to their individual experiences with IBS, including the symptoms (both psychological and physical) that they endure. In the unique population studied (individuals who had both IBS and symptoms of anxiety and/or depression), the impact of the mental and physical symptoms was often described as cyclical in nature and fed into one another. Sub-themes related to the impact of IBS on the participants’ holistic well-being involved recurring distressing physical symptoms, the impact of those symptoms both internally and externally, and how those symptoms disrupt their daily lives.

4.1.1 |. Shared experiences with distressing physical symptoms

Significant physical symptoms related to IBS were an almost ubiquitous experience among those interviewed. Many of these symptoms had negative impacts on the individual’s physical well-being, with the most frequently reported symptoms being abdominal pain, faecal urgency, diarrhoea, constipation and bloating. These symptoms not only caused physical distress but often resulted in psychological stress as well, with some describing a sense of ‘losing control’ over their bowel habits.

I get really bad diarrhea and I get bloated… It’s not uncommon for me to have six or seven bowel movements a day…The urgency is the one that I think is the worst.

(Participant 2, female, mild anxiety, moderately severe depression)

Stomach cramps are really the most stressful part of actually having IBS for me, because it’s constant and it’s not something that can really be controlled.

(Participant 8, male, severe anxiety, moderately severe depression)

It became horrible, just excruciating pain all the time, uncontrollable changes in bowel frequency, consistency, anything I ate was uncomfortable.

(Participant 1, female, severe anxiety, severe depression)

Another physical symptom brought up by several participants was fatigue. Participants stated that sleep issues, both in falling asleep and staying asleep, were troublesome and a source of discomfort. However, symptoms of fatigue and poor sleep were not always in the context of a participant discussing their IBS symptoms, but instead their anxiety or depressive symptoms. For those whose fatigue was tied to their IBS symptoms, gastrointestinal discomfort or pain were the primary reasons for inadequate sleep. And while not explicitly defined as fatigue, Participant 11 discussed situations in which their stomach pain would leave them ‘wiped out,’ colloquially referring to fatigue or exhaustion. Additionally, for these participants, frequent or severe gastrointestinal symptoms can result in physical symptoms of fatigue, even when not directly related to sleep disturbances.

I would say the hardest thing is definitely the stomach pain. Even though I don’t experience it as often as I used to, it wipes me out. It wasn’t really an issue when I was in high school, but I think it was two summers ago. I was on vacation in just a little cabin with my family. And for the entire vacation, after every time I would eat, I would just not be able to do anything. I would just sit on the couch in pain, just watching TV. And it was the most miserable time.

(Participant 11, female, moderate anxiety, mild depression)

4.1.2 |. Relationship between IBS symptoms and anxiety/depression

Many participants expressed that their mental health was negatively affected by their experiences with IBS and vice versa, in that a worsening of one would often result in the worsening of the other. Participants noted the negative physical impact of IBS on their bodies as a source of depressive and anxiety symptoms, often due to disruptions in their normal social or work routines.

Mostly the depression, just because if I don’t feel good, I don’t want to go out, and a lot of times, my energy level or willingness to do something active really, really correlates to how I feel physically, and most of that correlates with my stomach.”

(Participant 1, female, severe anxiety, severe depression)

Conversely, participants described circumstantial stressors (e.g. life changes, financial concerns and housing instability) preceding discomforting GI symptoms, which in turn added more stress to the participants’ subjective experiences.

I think it was a combination of a lot of stuff that was going on in my life. I was going through some things that were not … There was a lot of uncertainty about where I was going to live and work and all that stuff. But also, managing that and going out and talking to people, I would be like, “Okay, I really want to go and talk to my husband about this situation,” and I noticed that it was always coinciding with a really bad attack, a bad stomachache. So, it came together. So, maybe I was stressed out about things outside, but then it made my stomach hurt, which made it more difficult for me to deal with the situation, which made me hurt more.

(Participant 9, female, mild anxiety, moderately severe depression)

I can kind of trace it back to enormous amounts of circumstantial stress, but then the stress on my stomach and my digestion got so bad that it felt like that was the real stress and it was so distracting from the other conditional things that I’ve been dealing with. It was sort of like a chicken or the egg situation.

(Participant 10, female, severe anxiety, severe depression)

4.1.3 |. IBS symptoms impact normal activities of daily living

Participants discussed how their IBS and other GI symptoms disrupted their normal schedules, work activities and personal relationships. This included having to structure their schedules and outings around bathroom accessibility. Without access to bathrooms, participants noted a significant uptick in their anxiety.

I mean, a really hard time, I mean, having to rush to get to the bathroom. I mean, I’ve had to have many times, but I’ve never not made it to the bathroom. But I got to go, and I got to get there, and I’ve got to get to where I’m going or find a place to stop. That’s the most irritating of all.

(Participant 5, male, moderate anxiety, mild depression)

In many ways, these lifestyle disruptions were perceived as more frustrating than the physical symptoms of IBS itself due to the many potential consequences it could have on their long-term personal and professional relationships, academics and careers.

Oh, the leakage … I do a lot of functions work-wise and you’d be out and after maybe a couple of drinks you think you would want to pass winds and the next thing you have a leak and that’s the hardest of that. That’s the one that gets you down, you know?

(Participant 3, male, severe anxiety, moderately severe depression)

I don’t have a lot of flexibility in my schedule. And so, if I’m not feeling well, either I have to sacrifice like my health and be in a lot of discomfort throughout the day, or I have to cancel on a client, which is also very frustrating.

(Participant 7, female, severe anxiety, mild depression)

Overall, participants described distressing physical symptoms, which resulted in situations that made conducting their daily routines difficult, as a primary concern.

4.1.4 |. Interpersonal relationships and symptom perception

Participants’ perceptions of how others viewed them was impacted by their IBS symptoms. Many experienced heightening feelings of self-consciousness. For instance, participants commonly experienced feelings of embarrassment, anxiety and self-doubt, especially in social situations where the individual felt their symptoms—or steps they take to manage those symptoms—caused others to view them negatively:

The uncertainty, the uncertainty of when it’s actually going to hit me, fear of me being out, maybe at the office or even in public, running errands or something, and it hits me, that’s a huge fear of mine, because it has happened and it’s really embarrassing.

(Participant 8, male, severe anxiety, moderately severe depression)

So, being around people eating is excruciating. I hate it. I absolutely hate being around people eating, (…) Because they look at me and then they think that I have an eating problem when it’s really, I’m avoiding things that will make me feel bad.

(Participant 1, female, severe anxiety, severe depression)

Participants also brought up intimate personal relationships, including long-term partners or spouses, as an important part of their experiences. One participant noted their symptoms were severe and pervasive enough to cause sexual dysfunction and embarrassment regarding intercourse in their marriage.

I think pain and the looseness of the stools can just create this exhaustion. And that pain also bleeds into my marriage life, and that I noticed on the handouts that you gave, it’s like the sexual symptoms are pretty… they’re becoming more and more significant, I feel like as I get older.

(Participant 12, female, severe anxiety, moderate depression)

However, these relationships could also be sources of social support that positively affected an individual’s resilience.

I think it’s really important that my husband’s really supportive and he doesn’t judge or overthink it…the really important thing is sort of having that support.

(Participant 9, female, mild anxiety, moderately severe depression)

4.2 |. A trial-and-error approach to symptom management

Participants with IBS and symptoms of anxiety and/or depression identified a variety of bothersome symptoms which interfered with their daily life, as indicated above. This led to a trial-and-error approach to symptom management comprised of three sub-themes: identifying strategies used for managing symptoms, impractical and ineffective interventions and ‘What haven’t I tried?’—trying multiple interventions.

4.2.1 |. Identifying strategies for managing symptoms

Identifying strategies to manage symptoms was a priority for participants. The most commonly identified strategy was the management of symptoms through dietary approaches, primarily by identifying trigger foods and maintaining the low FODMAP diet. Over half of the participants discussed trying the low FODMAP diet. Common trigger foods (i.e. foods associated with increased IBS symptoms) included dairy, raw leafy greens and spicy foods. Identifying trigger foods was viewed as a method to avoid or reduce symptom severity.

Watching things that I eat, it’s a huge help to avoid the symptoms being as severe.

(Participant 8, male, severe anxiety)

Participants also discussed a variety of complementary strategies to manage symptoms, including stress management, relaxation, mindfulness, acupuncture and journaling. Medications were used to address bowel symptoms as well as symptoms of anxiety and depression. Some participants also used supplements, herbs and probiotics.

4.2.2 |. Impractical and ineffective interventions

Many of the strategies that participants tried did not consider their unique backgrounds and were considered impractical techniques. Several participants discussed how commonly used strategies required focusing on and evaluating their symptoms. For some, this practice of tracking symptoms led to unhealthy rumination on the symptom experience. Likewise, participants noted similar challenges in interventions containing mindfulness, yoga and relaxation.

Mindfulness does not help. I’ll think about it walking outside. My mind will just … it’s a record player, just go over, and over, and over again, so I have to be very distracted. Thinking about it makes it worse. So, I tried the mindfulness or the deep breathing, but then I think about everything that hurts in the body when I do that.

(Participant 1, female, severe anxiety and depression)

All participants who had tried the low FODMAP diet discussed it being an ineffective diet for them. Despite identifying the low FODMAP diet as ineffective, some found the low FODMAP diet allowed them to identify trigger foods, such as garlic and onion, or found that continuing the gluten-free bread and lactose-free milk were beneficial. Overall, participants expressed disappointment in the low FODMAP diet’s ineffective treatment of their symptoms, discussing its burdensome and complex restrictive nature as significant barriers to adherence.

I’ve done the low FODMAP diet and the only thing I’ve stuck to since on the Low FODMAP diet is the gluten-free bread and the lactose-free milk because I just felt they assaulted me, you know? … And when I did the reversal, it didn’t make any difference either, you know? I was no better and I was no worse by doing it. I just wanted to because actually, I thought that was going to be the solution.

(Participant 3, male, severe anxiety, moderately severe depression)

Another challenge was interventions that did not seem to be designed for participants’ routines, preferences and constraints. Interventions and strategies that required tracking in the moment were difficult for those who did not have phones or paper nearby throughout the day. One participant discussed how doing breathing exercises every hour was challenging while working in a retail environment.

“Well, at the time I was working retail and it’d be like, every hour stop and do this…And then throughout the day it had different things to do throughout the day and it just wasn’t realistic for my life at that time. It just wouldn’t have worked. And then it said stretch or walk around every hour or something. I’m like, I couldn’t do that.”

(Participant 2, female, mild anxiety, moderately severe depression)

4.2.3 |. ‘What haven’t I tried?’—Trying multiple interventions

Impractical and/or ineffective interventions coupled with continued symptoms led participants to try multiple interventions. Thus, there was no one-size-fits-all approach to management for participants with IBS and symptoms of anxiety and/or depression since no strategy was effective for all people. Almost all participants reported trying and failing multiple interventions to find something efficacious for them. Many participants independently identified strategies by seeking out information on the Internet without medical oversight.

Just Google and all those blogs that tell you one thing and the other. I just fumbled around in the dark for a long time. I think I did have one of those, “Is this FODMAP safe?” apps and things. I don’t know. It’s just a really slippery slope. You can just open your phone or Instagram or the internet and there are a million people with a million different stories and suggestions. I just followed their advice instead of trained professionals.

(Participant 10, female, severe anxiety and depression)

Some participants felt alone in the trial-and-error process and became frustrated when things were not working. In response to being asked about what other strategies a participant had used to manage symptoms, participant 10 stated: ‘It’s like “what haven’t I tried?”‘ Several participants discussed feeling there was no solution to successfully managing their IBS symptoms. For some, this indicated a sense of acceptance of their disorder, whereas for others, it was a sense of resignation.

I just crossed my fingers most of the time, to be honest with you. I never really know.

(Participant 6, female, mild anxiety, moderate depression)

Through the process of trying multiple interventions, participants did identify a few interventions such as monitoring trigger food and physical therapy that were described as effective in managing symptoms. Participants were able to integrate these strategies into their life by creating rules for which foods they could eat or integrating exercises during periods of higher pain. In other words, participants developed individualized approaches to integrating strategies into their daily lives.

4.3 |. Challenges with healthcare professionals supporting symptom management

Many participants had challenges in receiving a diagnosis, guidance and treatment to address their IBS. Rather than receiving support from healthcare professionals, participants mentioned being confused and receiving blanket advice that was not tailored to their life (e.g. a yoga teacher being advised to get more exercise to manage their IBS). Despite healthcare professionals providing food-related education (i.e. trigger foods, low FODMAP diet), participants sought effective and accommodating food-related interventions supervised by a dietitian. Especially for individuals with a current or history of disordered eating attitudes and behaviours, restrictive diets as well as food tracking, without the supervision of a dietician, resulted in exacerbation of disordered eating symptoms. Findings related to disordered eating attitudes and behaviours were emergent from the data as some participants disclosed a history of eating disorders. We developed two sub-themes regarding negative interactions with healthcare professionals and a lack of nutritional expertize and support.

4.3.1 |. Negative interactions with healthcare professionals

Participants report incidences in which healthcare providers did not take their IBS symptoms seriously. Furthermore, some healthcare providers would inaccurately attribute their symptoms to other health conditions, particularly mental health conditions. Participants felt dismissed and treated as though they were a ‘hypochondriac’ in the eyes of healthcare providers.

Not having people believe me because it’s subjective and any type of objective test they try to take will not prove my symptoms. So, people not believing me or blaming mental health for the cause of it.

(Participant 1, female, severe anxiety and depression)

Many participants recall having their IBS symptoms begin during their mid-teens and young adult years. During their journey to diagnosis, many felt their health concerns were invalidated despite the participants stating that this was not their baseline. At times, there was conflict between the participant’s concerns regarding their IBS symptoms and their perceived wellness by healthcare professionals. For instance, subjective symptom reports by participants did not hold weight against objective medical findings when interacting with healthcare professionals. One participant was told by a healthcare professional that their IBS symptoms were ‘normal’, as a young female.

I told my nurse practitioner about it probably… I see her as my main doctor just because it’s so much harder to get in to see my doctor, and she knows all of my things. And so, she’s the one I regularly see. But I’d mentioned it to her probably at the beginning of my treatment, or maybe a little earlier. And she… it was kind of invalidating because she was like, “Well a lot of young women have these symptoms. It’s just normal.” And I was like, “Are you sure? Okay. I guess this is fine.”

(Participant 11, female, moderate anxiety, mild depression)

For several participants, the message that was given by healthcare professionals lacked empathy and failed to support patients in finding a diagnosis and managing their symptoms. When discussing the messages given by healthcare professionals, participants described providers using phrases such as, ‘It’ll clear up eventually’, ‘I don’t know’ and ‘It’s all in your head’. One participant relayed frustration at healthcare professionals seemingly giving up on identifying the root of the problem, having been told that there was no clear diagnosis, and they should learn to accept their condition as-is.

Then I just got so sick of everyone saying, “We don’t really know what’s wrong. We can’t point this out on a test, so you’re just going to have to live with it.”

(Participant 10, female, severe anxiety and depression)

The inadequacies of healthcare professionals could be a contributor to participants reporting a long delay, even years, before obtaining a diagnosis. Additionally, it can take multiple attempts and overcoming many hurdles to receive healthcare treatment for IBS. A delay in diagnosis for IBS could be due to requiring multiple tests before diagnosis, such as CT scans, upper endoscopies and allergy testing. Not only are these procedures time-intensive and expensive, but they also do not always come back as ‘abnormal’ for persons with IBS.

And so, there was a lot of testing that I had. Oh gosh, they did an upper endoscopy. They did a bunch of tests basically to try to rule out other things. And so finally they said that it was IBS. And so, I’ve gotten some scans and things like that.

(Participant 7, female, severe anxiety, mild depression)

4.3.2 |. Lack of nutritional expertize and support

Many participants reported modifying their diet to manage their IBS symptoms. However, even after their diagnosis with IBS, several participants had difficulty accessing a dietitian and finding dietary guidance to alleviate their symptoms.

I haven’t worked with a dietician. My university has like a dietician at our health center. They’re super booked. So, I haven’t been able to get in to see a dietitian.

(Participant 7, female, severe anxiety, mild depression)

Without a dietitian, some participants relied on the nutritional information they received from healthcare providers who did not provide specialized or tailored nutritional education. Much of this information was left to the individuals to interpret and apply in their daily lives. Two participants navigated the dietary information from physicians on their own, and one participant’s symptoms worsened when attempting to follow the guidance from multiple physicians on fibre intake, whereas another discussed receiving a handout on the low FODMAP diet.

So, in the beginning when I would go to doctors, they’d be like, “Okay, eat more fiber.” And I believe them. I recognize that eating more fiber’s a good thing, but without knowing how much of fiber was in my diet or having any kind of understanding of that, what I ended up doing was overeating fiber, and it became a trigger.

(Participant 9, female, mild anxiety, moderately severe depression)

The dairy limitation was kind of a mixture of the doctor recommending it, but that hasn’t been guided in any way. Like she gave me like a, here’s a sheet on what FODMAPs are kind of thing. So, I was on me to like look up those things. Like fiber, again, there was like a, I don’t know, a handout of like, fiber’s good or whatever, but it wasn’t very helpful or instructional. So other than that, it’s just been me looking up things.

(Participant 7, female, severe anxiety, mild depression)

Participants discussed diet broadly and it was often not clear if the diet was being used to identify trigger foods or for ongoing management after identifying triggers.

Not only is restricting certain foods difficult for individuals on a low FODMAP diet, but also the constant tracking of consumed foods further added to the burden of this diet for individuals with IBS and symptoms of anxiety and/or depression. The need to continuously monitor their food intake resulted in participants being overwhelmed with thoughts of food. An underlying thought process predicated on what foods not to eat and obsessing about food, for some, became all-consuming and translated into negative actions, such as food restriction and avoidance.

Interviewer: What made it [the Low FODMAP diet] difficult? Participant: It’s the constant tracking. For me personally, being like, “Okay, I’m going to eat … Okay, this dish is going to need how many of each of the different types of …” What are they? I forget now. Whatever. But is this going to be for me, or is this too much?

(Participant 9, female, mild anxiety, moderately severe depression)

Participants had a strong desire to obtain dietary supervision from a dietician but were often unable to find a dietician or obtain an appointment due to their demand. Participants who were able to work with a dietician discussed the benefits of receiving expertize to ensure they were receiving adequate caloric intake and nutrients, as well as worked to create a lifestyle diet that was both feasible and reasonable. Additionally, dieticians were able to provide tailored and individualized support such as holistic guidance on food tracking.

It wasn’t until I entered treatment for my anorexia that I was actually supervised by a proper dietician. She was just like, “This is crazy, what you’re doing. You have to actually eat food. Enough of it and a variety of it. If you don’t, you’ll never feel better in any way.” Yeah. I feel like she was the first doctor who actually suggested that … Who suggested a more reasonable approach to eating that took all of my symptoms into consideration instead of looking at me through a tiny microscope.

(Participant 10, female, severe anxiety and depression)

Several participants disclosed having a history of an eating disorder. The negative impacts of restrictive self-dieting without supervision from a dietitian were exacerbated for participants who had a history of disordered eating behaviours and attitudes. For these participants, navigating diets proposed by providers resulted in a slippery slope to further food restriction and even a relapse of disordered eating behaviours. In the context of disordered eating behaviours and attitudes, the complexities of the low FODMAP diet coupled with a lack of supervision from healthcare providers may have led to a hyper-restrictive version of the low FODMAP diet. This is primarily a risk when patients do not understand the temporary nature of the low FODMAP diet and continue it past its intended use.

It was just a passing recommendation from a … I think it was a GI doctor. It could have just been my GP, but it didn’t help me at all. I didn’t really get the memo that that’s a diagnostic diet. That’s not a lifestyle diet. I just went on and on and on and on, basically eating nothing. It put me in really, really bad shape.

(Participant 10, female, severe anxiety and depression)

Participants with disordered eating behaviours and attitudes also discussed the complex relationship between IBS, anxiety/depression and disordered eating. IBS symptoms are related to the ways participants view their own body and eating in general. For one participant, their body image was the most frustrating part of IBS as bloating changed the way their body looks.

I would say the effect that it has on my body image, which is actually a really interesting thing … it was really difficult because it was like well, I’m trying to feed my body and give it what it needs. But it’s like it doesn’t even want me to… it’s also bloating if I get stomach pain, too. It not only makes it difficult to dance, but it also affects the way your body looks obviously.

(Participant 11, female, moderate anxiety, mild depression)

5 |. DISCUSSION

The purpose of this qualitative study was to understand the experiences and needs of symptom management among individuals with IBS and concurrent symptoms of anxiety and/or depression. Overall, participants discussed how IBS negatively impacted their physical and mental well-being, with a bidirectional relationship between physical symptoms and mental health. Symptom management required a trial-and-error approach, with several barriers impeding effective clinical management including negative interactions with healthcare providers and lack of nutritional expertize. Throughout each of the themes, participants highlighted the necessity of an individualized approach to symptom management.

This study specifically focused on the needs of participants who have IBS and concurrent symptoms of anxiety and/or depression. Most participants discussed a bidirectional relationship between physical symptoms and anxiety/depression and how gastrointestinal and psychological symptoms impacted activities of daily living. A recent report focusing on the relationship between IBS and perceptions of physical and mental health found that among individuals with IBS, mental health but not physical health, interfered with daily activities (Kutschke et al., 2022). Among individuals with IBS, psychosocial and somatic symptoms may have a greater impact on quality of life than IBS symptoms (Addante et al., 2019; Kutschke et al., 2022). Although participants in this study identified that both physical and mental health as well as their combination influence activities of daily living. This supports the need for healthcare providers to not only provide clinical guidance for the management of gastrointestinal symptoms, but to also counsel on the interpersonal and mental health-related impacts through shared decision-making processes.

Management of IBS concurrently with mental health conditions is difficult to do without clear guidance and oversight from healthcare professionals. Despite this, many participants interviewed relayed feeling a lack of support for the management of their IBS symptoms after diagnosis, resorting to independently curating information from the Internet to aid their ability to self-manage their symptoms. The importance of support in the context of symptom management aligns with the social cure perspective which highlights that social groups can promote health but only if people feel a sense of belonging with the group (Wakefield et al., 2022). Although there is no cure for IBS currently, many studies aim at improving quality of life, symptom severity and self-efficacy in managing IBS through interventions designed to support self-management behaviours (Cong et al., 2018). While a plethora of self-management interventions have been developed to address this population (including Internet-based strategies, self-training booklets, individual and groups therapies, cognitive behavioural therapy and exercise-based therapy), it is not clear the level of individualization provided by these interventions (Chen, Kamp, et al., 2022; Cong et al., 2018). Additionally, the process of introducing patients to self-management tools, such as the importance of supportive interactions of providers and nurses in particular including empathy and validating patient experiences, remains relatively unexplored in the literature.

Multiple attempts at various interventions were also reported by participants. These repeated trial-and-error approaches were commonly met with feelings of frustration, confusion and at times hopelessness at the expense of the participant. Refractory IBS, or treatment-resistant IBS, can be a common reason for trying multiple approaches for symptom management and may result in additional emotional burden on the patient throughout this process (Sibelli et al., 2017, 2018). CBT has been identified as an effective method of mitigating the negative psychosocial and somatic impacts of IBS symptoms (Lackner et al., 2018). However, these therapeutic strategies are rarely used in clinical applications despite growing evidence of their utility (Lackner et al., 2018). Various tools or services could be designed to support patients as they navigate the trial-and-error process of symptom management, with a consideration for providing emotional support throughout the process.

Diet is a key element in IBS treatment and symptom management (Chey et al., 2022). The low FODMAP diet is effective at reducing IBS symptoms and improving quality of life and is included as a best practice advice in the American Gastroenterology Association Clinical Practice Guidelines for IBS (Chey et al., 2022; van Lanen et al., 2021). Over half of the participants in this study attempted to identify trigger foods and/or change their diets to mitigate symptoms. However, participants were unable to find a dietitian or obtain appointments. This aligns with previous research where over 50% of individuals with IBS were prescribed a specific diet by a healthcare professional, but only about 5% received a referral to a registered dietitian nutritionist (RDN) (Adams & Broughton, 2019).

Participants identified that the low FODMAP diet was ineffective in managing their long-term symptoms. Yet, participants were able to identify trigger foods through trying the low FODMAP diet. In research studies examining the low FODMAP diet, participants receive access to guidance from nutritionists including personalized and tailored nutrition plans (van Lanen et al., 2021). Whereas, implementation of the low FODMAP diet in clinical practice often involves general information from primary care practitioners and gastroenterologists which is perceived patients as simplistic with little personalization (Trott et al., 2019). For participants in our study, it is not clear if the failure of the low FODMAP diet was due to the diet itself, misunderstanding of the diet or diet phases, anxiety and/or depression leading to hyper-focusing on dietary attributes or to the lack of nutritional support to implement the diet. In particular, some participants were not clear that the low FODMAP diet had several phases—elimination, reintroduction and personalization—which each can present unique challenges for patients and should be individualized by a dietitian (Whelan et al., 2018).

The complexity of the low FODMAP diet can be further exacerbated if individual characteristics are not considered. For instance, adherence to the low FODMAP diet has been associated with a higher education level (Gearry et al., 2009). Thus, when recommending diets for IBS, such as the low FODMAP diet, healthcare providers should consider how the health literacy of the patient as well as food insecurity might limit access to the types of foods available to patients. Practitioners must also consider, prior to prescribing specific regimented diets to IBS patients, such as the low FODMAP, the appropriateness of the patient to be placed on a strict nutritional diet. For instance, it has been suggested that aspects of the low-FODMAP diet lend themselves to increased risk of eating disorder exacerbation, including rumination over food choices, strict tracking of food for identification of triggers, heightened awareness of one’s body (may impact body dysmorphia) and restriction of food options (Burton Murray et al., 2022). Concerningly, while several participants reported a history of eating disorders, none were referred to a nutritional specialist, such as an RDN, on being told to follow a FODMAP diet. One participant stated that it was not until she was seen by a dietitian for her eating disorder that she actually received proper nutritional guidance in addressing her IBS symptoms. While not all individuals who have disordered eating behaviours (e.g. rumination over food choices) develop an eating disorder meeting DSM-V criteria, it is imperative that appropriate individualized treatment plans are developed based on the patient’s health history and, where appropriate, consultations with other providers (e.g. psychologists, RDNs, eating disorder specialists) are included in a patient’s treatment course for their safety (Scarlata et al., 2020).

5.1 |. Limitations

Despite the important findings regarding symptom management of individuals with IBS and symptoms of anxiety and/or depression, there are several limitations that should be addressed. Participants were recruited and interviewed during the COVID-19 pandemic which might influence their perceptions and experiences with symptom management. Additionally, online recruitment was used which might have led to a sample that is not reflective of the general population. It could be that individuals who achieved more effective management of their disease were less likely to participate in this study. All the participants in this study were able to read and write English; thus, their experiences might not include the unique challenges related to language barriers and communication. Lastly, our sample was mostly female (75%) and had IBS for greater than 10 years which might influence the lived experiences with IBS (van Kessel et al., 2021).

6 |. CONCLUSION

This article highlights the trial-and-error approach that patients with IBS and symptoms of anxiety and/or depression experienced to manage their symptoms. Our findings have several important implications for nurses and other healthcare professionals caring for patients with IBS and symptoms of anxiety and/or depression. First, nurses and other healthcare professionals should begin with a comprehensive assessment to evaluate patients’ previous experiences with symptom management interventions as well as important past medical history including symptoms of anxiety and/or depression and current or history of disordered eating attitudes and behaviours. The development of a therapeutic relationship is particularly important as many participants felt overlooked by the healthcare system. As the most common healthcare professional worldwide, nurses are in a unique position to promote therapeutic relationships with patients. Second, when providing information regarding symptom management interventions, particularly dietary interventions, provide participant referrals to a registered dietician nutrition (RDN) or mental health professionals. If providing handouts regarding interventions, use evidence-based teaching methods such as the teach-back method to assess for participant comprehension. Finally, consider each interaction an opportunity to implement a personalized healthcare approach to IBS management, considering the intersectionality of patient identities which may influence their engagement with the healthcare system and symptom management.

DATA AVAILABILITY STATEMENT

Data available on request from the authors.