Pain experience of people with inflammatory bowel disease: a qualitative study

BACKGROUND: Patients with inflammatory bowel disease (IBD) have higher rates of psychiatric comorbidity which can impact adherence to treatment plans, medical response, and overall quality of life. Integrated behavioral management within an IBD-specific medical home (MH) shows promise in improving clinical outcomes. Effective behavioral interventions may differ depending on source of symptoms (active vs inactive disease). Study aims are to: 1) characterize behavioral complexity in adults with moderate to severe IBD symptoms at the time of enrollment in the IBD MH; and 2) evaluate the relationship between use of behavioral services and medical and behavioral self-reported measures over a 6-month period. METHODS: The sample consisted of adults with moderate to severe IBD symptoms, enrolled in the IBD MH from 2018 to 2019 with at least two office visits over a 6-month period. Clinical data from the electronic health records were included. Patient-reported depression (PHQ9), generalized anxiety disorder 7 (GAD-7), quality of life (QoL; SIBDQ), and IBD severity (HBI/UCAI) were recorded at baseline and subsequent office visits. These scores were used to calculate the IBD Biopsychosocial Complexity Grid, a tool which organizes this health information into biological, psychological, and nutritional domains and serves as the basis for algorithm-driven treatment planning within the IBD MH. Psychiatric diagnoses and patient engagement in behavioral services within the IBD MH were recorded. RESULTS: 62 IBD patients with high baseline IBD symptoms were examined. All but one of these patients had at least one psychiatric diagnosis and 13 had ≥3 psychiatric diagnoses. All but 2 patients engaged in at least one encounter with behavioral providers within the MH. Approximately half (n = 30) of the 62 patients had active inflammation noted on colonoscopy at baseline. Of these 30 patients, 47% (n = 14) had significant improvement of their IBD inflammation, symptoms, and behavioral outcomes over the 6-month period. While 53% (n = 16) of patients with persistent active inflammation, also showed significant improvement in IBD symptoms and behavioral scores. All 30 patients engaged with behavioral providers. Another 30 patients had no active inflammation noted at their first and second visits yet reported high levels of IBD symptoms. These patients with more functional GI symptoms had more comorbid psychiatric diagnoses and even though they utilized behavioral services, showed less improvement in depression/anxiety scores compared to those with high baseline IBD inflammation. IBD patients with high baseline and continued active inflammation noted on colonoscopy all utilized behavioral health services at high rates and had improvement in PHQ9, GAD7, SIBDQ, and HBI/UCAI scores. None of the sample had a surgical intervention during the study period. CONCLUSION(S): IBD patients with moderate-severe reported symptoms had significant psychiatric comorbidity and utilized behavioral health providers in the IBD MH at equally high rates, regardless of symptom source (active inflammation or functional symptoms). Patients with active inflammation showed improvement in psychosocial functioning despite no disease improvement, suggesting that an integrated approach benefits patients with active disease even when disease markers do not improve. Patients with functional symptoms had more psychiatric complexity, and distress persisted despite behavioral interventions, suggesting patients with functional symptoms may benefit from different and possibly more intensive psychosocial care.

BACKGROUND AND AIMS Women with inflammatory bowel disease (IBD) report that their IBD symptoms change due to menses and hormonal contraception. However, research is limited on the impacts of menopause, which is the absence of menstrual periods and decline of reproductive hormones, on symptom severity and disease progression in women with IBD. The purpose of this article was to systematically review the existing literature to describe the impact of menopause, menopause transition, and hormone replacement therapy (HRT) on disease activity, symptoms severity, and disease progression among individuals with IBD. METHODS A search strategy was developed in collaboration with a university research librarian to include terms related to menopause and IBD. The following databases were searched: PubMed, CINAHL, PsycINFO, Embase, and Web of Science. Two reviewers screened all records. Findings were reported using narrative synthesis. RESULTS Out of 1568 identified records, we reviewed 107 full text reports and included 14 studies (5 cohort, 3 case-control, 6 cross-sectional). The sample sizes of IBD participants in these studies ranged from 37 to 1367. Five studies examined the relationship between menopause and IBD disease activity. Four of the five studies reported no relationship between menopause/menopause symptoms and disease activity, and one study reported more bothersome menopause symptoms in women with active IBD, compared to those in remission. Seven studies examined the impact of HRT on IBD risk or IBD symptoms, with mixed results: HRT is associated with increased risk of IBD (n=2), HRT does not change IBD symptoms (n= 3), and HRT improves IBD symptoms (n=2). Five studies examined menopause onset age for IBD patients. Four of the five studies report earlier menopause onset in those with IBD compared to age-matched controls, and one study reports no difference in menopause onset in those with IBD compared to age-matched controls. CONCLUSIONS Few studies have examined menopause, menopause transition, or HRT among women with IBD. Results on the relationship between menopause and IBD disease activity and the impact of HRT on IBD were inconclusive. Some evidence suggests that women with IBD may have an earlier onset of menopause compared to controls. However, there is a need for continued research on the relationship between IBD disease activity and menopause symptoms to create tailored interventions to improve women’s health in IBD across the lifespan.

Background:Many patients with quiescent inflammatory bowel disease (IBD) suffer from irritable bowel syndrome (IBS)-like symptoms. Although these symptoms cause significant reductions in quality of life, evidence-based treatments are lacking as risk factors and pathophysiology of these symptoms are not clearly defined. We aimed to identify risk factors for development of IBS-like symptoms in IBD patients with quiescent disease.Methods:We performed a single-center retrospective cohort study of adults with IBD from 2015 to 2021. Quiescent IBD was defined by a fecal calprotectin level <250 μg/g of stool or endoscopic evidence of quiescent disease. Cox regression was performed to identify variables that were independently associated with the incident development of IBS-like symptoms in IBD patients.Key Results:A total of 368 IBD patients were included for analysis, including 278 patients with UC and 88 with Crohn’s disease. 15.5% of quiescent IBD patients developed IBS symptoms, with an incidence rate of (95% CI 48.0–82.0) 63.3 per 1000 person-years. In the multivariate model, mood disorders (including anxiety and depression) and Crohn’s disease were associated with increased risk for developing IBS symptoms. Male sex and higher iron levels conferred lower risk for developing IBS symptoms. Results from the multivariable model were similar in sensitivity analysis with quiescent IBD defined by fecal calprotectin level <150 mcg/g.Conclusions & Inferences:Mood disorder and Crohn’s disease were positively associated with IBS-like symptoms in quiescent IBD, whereas male sex and iron levels were protective. Our results were robust to different fecal calprotectin levels, arguing against inflammation as a mechanism for IBS-like symptoms. This data suggests non-inflammatory mechanisms may be important in the pathogenesis of IBS-like symptoms in quiescent IBD. Future work may address whether modifying these risk factors may alter disease course.

Inflammatory bowel disease in children and adolescents: Working Group Report of the First World Congress of Pediatric Gastroenterology, Hepatology, and Nutrition.

Chicken or Egg, Mental Health Disorders in Inflammatory Bowel Disease: Does It Matter?

Inflammatory bowel disease (IBD) affects over 3million Americans and has a relapsing and remitting course with up to 30% of patients experiencing exacerbations each year despite the availability of immune targeted therapies. An urgent need exists to develop adjunctive treatment approaches to better manage IBD symptoms and disease activity. Circadian disruption is associated with increased disease activity and may be an important modifiable treatment target for IBD. Morning light treatment, which advances and stabilizes circadian timing, may have the potential to improve IBD symptoms and disease activity, but no studies have explored these potential therapeutic benefits in IBD. Therefore, in this study, we aim to test the effectiveness of morning light treatment for patients with IBD. We will recruit sixty-eight individuals with biopsy-proven IBD and clinical symptoms and randomize them to 4-weeks of morning light treatment or 4-weeks of treatment as usual (TAU), with equivalent study contact. Patient-reported outcomes (IBD-related quality of life, mood, sleep), clinician-rated disease severity, and a biomarker of gastrointestinal inflammation (fecal calprotectin) will be assessed before and after treatment. Our primary objective will be to test the effect of morning light treatment versus TAU on IBD-related quality of life and our secondary objectives will be to test the effects on clinician-rated disease activity, depression, and sleep quality. We will also explore the effect of morning light treatment versus TAU on a biomarker of gastrointestinal inflammation (fecal calprotectin), and the potential moderating effects of steroid use, restless leg syndrome, and biological sex. Morning light treatment may be an acceptable, feasible, and effective adjunctive treatment for individuals with active IBD suffering from impaired health-related quality of life. The study protocol was registered on ClinicalTrials.gov as NCT06094608 on October 23, 2023, before recruitment began on February 1, 2024.

Fatigue is a frequent and debilitating symptom of inflammatory bowel disease (IBD) and can include mental and physical exhaustion, tiredness, or weakness. Modifiable psychosocial factors, such as depression and anxiety, are associated with fatigue in IBD, and provide insight into potential treatment targets. However, little is known about distinct ways in which psychosocial factors relate to subtypes of fatigue. The current study examined associations between psychosocial factors and 5 fatigue subtypes: general, physical, mental, reduced motivation, and reduced activity. Patients 18 and above from Dartmouth-Hitchcock’s IBD Center with Crohn’s disease or ulcerative colitis were invited to participate in a survey via an electronic medical record system message. Measures included the Patient Reported Outcomes-3, Multidimensional Fatigue Inventory, Pain Catastrophizing Scale, Generalized Anxiety Disorder-7, Patient Health Questionnaire-9, Insomnia Severity Index, and Brief Pain Inventory. Five forward linear regressions were performed with step 1 including disease activity, step 2 including covariates (age, gender, IBD diagnosis) and step 3 allowing for the inclusion of insomnia, pain severity, depression, anxiety, and pain catastrophizing. Participants were 312 individuals above the age of 18 (M=48.62, SD=16.10). Participants were 66.3% women and 96.5% White. 60.9% were diagnosed with Crohn’s disease and 39.1% with ulcerative colitis. 54.8% were categorized as having active disease based on self-reported symptoms. For all five subtypes of fatigue, depression emerged as the most influential psychosocial predictor. Depression accounted for 21% of the variance in general fatigue, 14% in physical fatigue, 18% in activity avoidance, 19% in reduced motivation, and 29% in mental fatigue. Regarding differences among subtypes, insomnia was only significant in the model predicting general fatigue, accounting for an additional 2% of the variance, and anxiety was only significant in the model predicting activity avoidance, accounting for an additional 3% of the variance. In comparison, self-reported disease activity accounted for 23% of the variance in general fatigue, 7% in physical fatigue, 8% in activity avoidance, 12% in reduced motivation, and 10% in mental fatigue. Depression is a notable factor associated with all subtypes of fatigue in IBD, especially mental fatigue. There are differences in how psychosocial factors relate to fatigue subtypes such that anxiety is uniquely associated with activity avoidance and severity of insomnia is uniquely associated with general fatigue. Results suggest that assessment of fatigue in IBD should also include assessment of depression as standard of care. Additionally, helping patients engage in behavioral interventions to reduce depression, anxiety, and insomnia may be critical for managing fatigue. Results of forward regressions predicting fatigue subtypes

Pain is a widely experienced symptom of inflammatory bowel disease (IBD), which has significant psychological and functional impacts on patients. Understanding the aetiology and management of chronic pain is a poorly understood area of IBD research. This qualitative study aimed to explore the experiences of individuals with IBD and pain, the pain management strategies they use and any needs for future pain management interventions. In all, 14 individuals with IBD were purposively recruited and interviewed (face-to-face or telephone) using a topic guide. Interviews were transcribed and analysed using inductive thematic analysis. Themes identified were 'vicious cycles', 'findings solutions' and 'attitudes'. The experience and impact of pain were rarely viewed in isolation, but rather within the context of a cycle of IBD symptoms. Other 'vicious cycles' identified included anxiety, avoidance and inactivity, and poor understanding and communication. Pain management included short- and long-term strategies. Searching for a solution for pain had an emotional impact on individuals. There were contrasting attitudes from participants, including defeat, tolerance and acceptance. This study provides an understanding of the experience of pain in IBD. The interaction of pain with accompanying IBD symptoms has an emotional and physical impact on individuals, and creates a barrier to adequate assessment, understanding and treatment of pain. Patients rely on their own experiences, and a trial and error approach to apply helpful strategies. Adjuvant behavioural therapies may be beneficial for patients experiencing pain and psychological distress, and to facilitate self-management.

Background Fatigue is a frequently reported symptom of inflammatory bowel disease (IBD), experienced by patients with active disease and in remission. Fatigue related to chronic conditions plays a significant negative role in Health-Related Quality of Life (HRQoL), but patients’ experience of this have not been researched in IBD. We aimed to explore experience of IBD fatigue and its impact on HRQoL in adults diagnosed with IBD. Methods Qualitative, semi-structured in-depth interviews were conducted with adults with IBD in remission, recruited from out-patient clinics in the UK. Eligibility and medical history were confirmed at recruitment. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was employed to analyse the data using NVivo 12 software. Results Fourteen participants (eight female, average age 37.3 years old, range 21–64) were interviewed. All identified as ‘White British’, average length of living with IBD fatigue was 10.9 years (range 9 months–17 years). Twelve participants reported constant fatigue and two reported intermittent fatigue. There were three key themes reflecting patient experiences: (1) ‘The new normal’ established through attempts to adapt daily life and acceptance of IBD fatigue impact on daily life and HRQoL. HRQoL is negatively impacted by lack of feelings of fulfilment, not being able to continue on as before the onset of IBD fatigue and a negative perception of self in comparison to others without IBD fatigue; (2) ‘Energy as a resource’ describes participants attempts to better manage fatigue on a daily basis through planning and prioritising tasks, often prioritising employment or education over social or leisure activities; (3) ‘Keeping healthy’ encompasses participants beliefs that good nutrition, good general health and keeping active allow them to generate energy more easily allowing some situational control where they have little control over IBD symptoms, subsequently improving HRQoL. Participants reported a mix of physical activities that improved HRQoL; however, none reported a specific programme of exercise. Conclusion Adults with IBD fatigue try to establish a sense of ‘new’ normality, through maintaining the same or similar, level of activities related to employment or education. However, this is often at the expense of personal, social and leisure activities. The study also indicates that perceptions of conservation of energy through planning and prioritising tasks and high levels of social support were associated with better self-reported HRQoL. Further research is required to explore physical activity-based intervention in relation to IBD fatigue, with use of validated fatigue and HRQoL measures.

Baseline Disease Activity and Steroid Therapy Stratify Risk of COVID-19 in Patients With Inflammatory Bowel Disease

It is unknown whether cannabis users self-medicating their inflammatory bowel disease (IBD) symptoms are more likely to have comorbid mental health or personality risk factors associated with an increased potential for substance misuse compared with recreational cannabis users. We surveyed individuals with IBD about their cannabis use, their mental health symptoms, and personality risk factors associated with substance misuse. We compared risk factors for substance misuse between individuals using cannabis to manage IBD symptoms and those using cannabis recreationally. Of 201 persons with IBD who completed the questionnaire, 108 reported lifetime cannabis use. Of those, a larger proportion of Crohn's disease patients used cannabis to manage IBD symptoms (53% [34/64] vs 28% [12/43]; P = 0.010). Individuals self-medicating with cannabis were more likely to use cannabis for coping reasons (P = 0.016) and demonstrated higher levels of impulsivity (P = 0.004) and depressive symptoms (P = 0.012) when compared with individuals using cannabis recreationally. Logistic regression revealed that cannabis was 4.1 times (P = 0.05) and 3.7 times (P = 0.05) more likely to be used for IBD symptoms by smokers and individuals with moderate-severe depressive symptoms, respectively. Individuals high in impulsivity were 4.1 times more likely to use cannabis for their IBD symptoms than those low in impulsivity (P = 0.005). Persons with IBD self-medicating with cannabis have characteristics associated with increased vulnerability to substance misuse when compared with those using cannabis recreationally. Screening for mental health comorbidities and vulnerability to substance misuse should be undertaken if cannabis is to be used to treat IBD symptoms.

There is clear evidence that loneliness and social isolation have profound health consequences. Documenting the associations of loneliness and social isolation with inflammatory bowel disease (IBD) symptoms, disease severity, and treatment outcomes could meaningfully improve health and quality of life in patients with IBD. The purpose of this narrative review was to synthesize the empirical evidence on the associations of loneliness and social isolation with IBD symptoms, disease severity, and treatment outcomes. Articles were identified through systematic database searches. Quantitative studies that enrolled patients with IBD were included if they examined one of the following outcomes: (a) loneliness or social isolation or (b) IBD-related symptoms, disease severity, or treatment outcomes. We identified 1,816 articles after removing duplicates. Of the 18 studies that met the inclusion criteria, 15 were cross-sectional and 3 were longitudinal. Overall, studies found that loneliness was associated with greater disease activity, functional gastrointestinal symptoms, IBD illness stigma, depressive symptoms, daily IBD symptom burden, reduced resilience, and poorer quality of life. Social isolation was associated with higher prevalence of IBD hospitalizations, premature mortality, and depression. Findings suggest that loneliness and social isolation are associated with poorer health and quality of life in patients with IBD. Prospective cohort studies examining the biobehavioral mechanisms accounting for the associations of loneliness and social isolation with IBD-related outcomes are needed to guide the development of psychological interventions for individuals living with IBD.

Introduction Food intolerances and food avoidance are common in inflammatory bowel disease (IBD). This cross-sectional study explored the prevalence of food intolerance patterns in IBD and assessed the food related quality of life (FR-QoL) and vitamin D and calcium intake in IBD patients. Methods An online questionnaire with detailed questions relating to food groups commonly avoided, food related quality of life tool and calcium and vitamin D intake was displayed on the Crohn’s and Colitis UK website. Disease activity was assessed by the Minnesota IBD activity index, which is a validated, patient-defined tool that relates to the patient’s perception of IBD activity over the last six months. FR-QoL was assessed by a validated questionnaire (FR-QoL-29) which comprises of 29 statements encompassing different psychosocial aspects surrounding food and eating from an IBD symptoms perspective. Details of the type of IBD, duration of disease, previous surgery and disease activity were collected. Fishers’ exact test and Pearson correlation were used for statistical analysis. Results 67 respondents (40 Crohn’s, 23 ulcerative colitis, 2 unclassified and 2 microscopic colitis) participated in the survey. Food avoidance was seen in 65 (97%) patients, with mean number of foods avoided at 6. Vegetables were avoided in 60% of the patients, followed by wheat-based products in 56% of patients. 82% of patients reported that their IBD was active. Food related quality of life was poor in inflammatory bowel disease patients and disease activity significantly correlated with 16 out of the 29 statements. 60% reported that food has association with disease activity. 89% were apprehensive of eating a particular food with the fear that it might trigger their IBD symptoms. Calcium and vitamin D intake from the diet was low, with a mean of 581.8 mg/day (recommended intake 1000 mg/day) and 282.9 IU/day (recommended intake 400 IU/day) respectively. 55% of patients with low calcium intake and 57% of those with a low vitamin D intake were not on supplements. Conclusions This study highlights the high prevalence of food intolerances in the IBD community, resulting in high rate of food restrictions and less intake of foods rich in calcium and vitamin D. FR-QoL in IBD was poor. Food avoidances in IBD pose an important risk factor for poor nutrition, and majority of patients experience a low food related quality of life. Proactive assessment of food intolerances, FR-QoL and dietary intake of calcium and vitamin D is essential to identify and rectify underlying insufficiencies. References . Hughes, L. D., King, L., Morgan, M., Ayis, S., Direkze, N., Lomer, M. C., Whelan, K. (2015). Food-related quality of life in inflammatory bowel disease: development and validation of a questionnaire. Journal of Crohn’s and Colitis, 10(2), 194–201.

Background Fatigue is a common and burdensome symptom of inflammatory bowel disease (IBD). Although many symptoms of IBD can be debilitating, fatigue is reported by people with IBD as the most difficult symptom to live with. It is experienced by up to 86% of people in active disease and 41–48% of people with IBD in remission, and impacts greatly on all aspects of people’s lives. Fatigue is a complex and invisible symptom and therefore can often be overlooked by those caring for people with IBD. Since it is invisible, it can only be made known to healthcare professionals if patients seek help for it. The experience of people who seek help for IBD fatigue is unknown, as are the reasons some choose to seek help and others do not. This study aims to explore the determinants of help-seeking behaviour for fatigue in IBD and examine why some people with IBD fatigue are more likely to seek help than others. Methods An exploratory qualitative method was employed, underpinned by the Theory of Planned Behaviour. A voluntary sample of 12 people with a diagnosis of IBD was recruited from the Irish Society of Crohn’s and Colitis. The sample included people who had and who had not sought help for IBD fatigue in the past. Semi-structured interviews were conducted using an interview guide. Themes were uncovered using content analysis. Results Themes uncovered included symptom perception, impact of IBD fatigue and knowledge of and access to sources of help. Most commonly, people did not seek help if they could continue life with relative normalcy in spite of IBD fatigue. Access and availability of help was perceived as good. Barriers, such as time and cost, were identified as making help-seeking more difficult at times, however these did not prevent seeking help. Poor knowledge of the sources of help, IBD fatigue being regarded as an inferior symptom to other symptoms and the perceived lack of interventions to manage the complex symptom emerged as important factors influencing help-seeking behaviour. Conclusion The Theory of Planned Behaviour was found to be a useful framework to predict help-seeking behaviour for IBD fatigue. Symptom perception, impact of IBD fatigue and knowledge of and access to sources of help are the most influential aspects of help-seeking behaviour. IBD fatigue appears to lack the legitimacy of other IBD symptoms. Therefore, there is a need for healthcare professionals to fully acknowledge and routinely assess fatigue as part of the clinical management of IBD. Further research aimed at specifically managing fatigue as a major IBD burden is warranted, in particular multidimensional, holistic interventions to help people cope with the impact of IBD fatigue.

Introduction: In the SARS-CoV2 mRNA vaccine trials, post-vaccination gastrointestinal (GI) symptoms were reported in 10-20% of participants. These symptoms could be perceived as inflammatory bowel disease (IBD) flare which could lead to patient anxiety, and unnecessary tests or treatment. We aimed to assess GI symptoms after SARS-CoV2 mRNA vaccination in patients with IBD relative to non-IBD healthcare workers (HCW). Methods: We assessed GI symptoms in adults with IBD and HCW at baseline and after each dose of a SARS-CoV-2 mRNA vaccine. We analyzed patient-reported IBD-specific disease activity (PRO2) after each dose (stool frequency (SF) and rectal bleeding for ulcerative colitis (UC), SF and abdominal pain for Crohn's disease (CD)). We also compared the frequency, severity, and duration of postvaccination GI symptoms in IBD patients compared to HCW. Severity was defined by impact on daily activities (mild, did not interfere;moderate, some interference;severe, prevented routine activity;extreme, required hospitalization). Severe and extreme were combined and designated as severe+. Duration was classified as 7 days. Results: Post-vaccination GI symptoms were assessed after dose 1 (D1) (1391 IBD, 933 HCW) and dose 2 (D2) (1271 IBD, 884 HCW) (Table). About 60% of IBD and>99% of HCW received the BNT162b vaccine (Pfizer);the remainder received mRNA-1273 (Moderna). New GI symptoms after D1 were more frequent among IBD than HCW (6.0% vs 2.9%, p=0.001) but not after D2 (12.1% vs 12.7%, p=NS). Relative to HCW, IBD patients reported more diarrhea (3.8% vs. 1% (p<0.001) after D1 and 7.5% vs 4.2% (p=0.003) after D2) and abdominal pain (2.2% vs. 0.4% (p=0.001) after D1 and 6.2% vs 3% (p=0.002) after D2). Severe1 symptoms were noted in 1.5% IBD and 0.3% HCW (p=NS) after D1 and in 3.3% IBD and 0.1% HCW (p<0.001) after D2 (Figure 1). Longer GI symptom duration was more common in IBD than HCW after D1 (2.1% vs 0.5%, p=0.002) and D2 (5.4% vs. 2.1%, p<0.001). Among 423 CD and 300 UC patients with PRO2 data, 71%, 68%, and 65% of CD and 86%, 86%, and 83% of UC were in clinical remission at baseline, after D1, and after D2, respectively. Conclusion: The frequency of GI symptoms in IBD was greater than HCW after D1, but similar after D2. More severe and longer duration of GI symptoms were noted in a small number of IBD patients. Reassuringly, the mRNA vaccines do not seem to increase the risk of a disease flare in the vast majority of IBD patients.