Commentary
Beyond the Bowel: Understanding Pain Experiences of Children with Inflammatory Bowel Disease in School Settings
Catherine Wilkinson and Jenna Rice
Pain is a common and often debilitating feature of Inflammatory Bowel Disease (IBD) (Bielefeldt et al., 2009), yet its impact is frequently overlooked within both clinical and educational settings, with Zeitz et al. (2016, p.1) describing pain in IBD patients as “very frequent and frequently insufficiently taken into account”. Although IBD is typically understood through gastrointestinal symptoms such as urgency, diarrhea, fatigue and abdominal pain, young people also experience pain that extends ‘beyond the bowel’, including musculoskeletal and joint pain (Crohn’s and Colitis UK, 2023), shaping their participation in everyday life.
School is a key setting in which young people with IBD experience, negotiate and manage IBD symptoms (Rice and Wilkinson, 2025; 2026), including pain. Drawing on findings from a qualitative study using virtual multi-stage participatory interviews with seven young people aged 5-16 years with IBD in the UK, this commentary foregrounds young people’s accounts of abdominal and joint pain within school settings and offers recommendations to support healthcare practitioners in recognizing and responding to the impact of IBD-related pain on young people’s school lives. The names of all young people included in this commentary are pseudonyms.
Pain is not confined to the gut: IBD pain is a whole-body experience
Our research found that young people’s experiences of IBD-related pain extend beyond abdominal symptoms to include musculoskeletal pain, mobility difficulties, and reduced concentration, affecting many aspects of school life. Participants described hip and back pain that influenced their ability to sit comfortably, attend lessons and complete examinations. For instance, Sienna (aged 15) explained:
“When I flare up, my hips flare up. It’s mainly on my left side…I have like a curve on my right side, and then on my left side it kind of just goes straight down.”
Sienna also described how pain disrupted her cognition: “the pain sometimes can like take over my thinking and it can decrease my thinking rates”, linking this to her request for extra time in examinations. This account illustrates how pain can intersect with concentration and cognitive demands during the school day.
Invisible pain creates a burden of explanation and disbelief
Some of the young people in our study also reported concealing symptoms to avoid stigma, highlighting that pain cannot be understood through disease activity alone. Others described the burden of having to explain and legitimize their pain to others. Thomas (aged 13), reflecting on the invisible nature of severe pain, stated: “I wish they could just understand how painful it is.” He also challenged misconceptions that pain related to his Crohn’s disease is temporary or easily resolved: “It isn’t just after a couple of medications, it’s gone.”
Overall, limited awareness of IBD and its diverse symptoms among school staff and peers compounded young people’s experiences of pain by leaving them feeling misunderstood, needing to justify their symptoms and navigating disbelief.
Pain is unpredictable and requires flexible responses from schools
Our research found that the fluctuating nature of IBD means young people require support that can adapt in real time. Sienna (aged 15) described how symptoms changed rapidly throughout the day: “I’ll wake up and I’ll feel fine, and then I’ve had to come home early because of how I feel”. Similarly, Thomas (aged 13) explained: “after a couple of hours, the pain might have got some worse to the point where, you know, I’m crying my eyes out”. He also highlighted how the school environment could exacerbate pain-related symptoms: “Sometimes it might be all spicy foods [in the school canteen] and you know. It’s just with the Crohn’s, you know, spicy doesn’t really help with pains.”
Lucy (aged 12) described the tension between managing pain and remaining engaged in activities that mattered to her:
“Especially Dance, you don’t want to miss a week because next week when they’re doing the whole choreography, you’ve missed the whole thing…When you’re actually dancing, you’re not necessarily thinking about it or unless you’re in absolute crippling pain. Then I just dance, bent over like you got to do what you gotta do sometimes.”
These accounts demonstrate that the young people often pushed through pain to avoid missing learning and valued activities, meaning schools should not rely on visible signs of illness when determining whether support is needed.
Small changes, meaningful impact
Meaningful support for pupils living with pain often lies in small, practical adjustments that acknowledge the realities of everyday school life. One example was access to a time-out pass, which enabled Sienna (aged 15) to access support when needed: “So if I am in a lot of pain and I’ve had a flare up, I can sit in student support and they help me and support me with that”. She also described how relatively simple adaptations improved comfort during long examinations:
“I also have a cushion on my chair to support my pains that I get in my hips and my back. Because some of my exams are about two hours long, so sitting down for that long can be really difficult. So having the cushion helps and I also have allowable rest breaks.”
Some participants also valued timely access to medication: “they’ve got like, Buscopan [antispasmodic medicine] and stuff at the office, so I can just go and get it when I need it” (Ella, aged 9). Other examples included access to painkillers and heat pads.
Multiple participants identified school uniform as a source of avoidable pain. Sienna (aged 15) explained:
“It’s more like my uniform is a really, really big struggle I have to wear a grey pleated skirt and the waistband is not elasticated so it’s a you zip it and you squish in it and it is really, really tight on my stomach. So I often walk around school with it unbuttoned and when I’m in my lessons I have it completely unzipped because I can feel where it hurts my stomach. And then when I come home it almost feels bruised. And I just, I sort of feel trapped in my uniform.”
This account illustrates how everyday school policies, including uniform requirements, can unintentionally exacerbate abdominal pain. Small adjustments, such as greater flexibility around uniform, alongside other reasonable adjustments, have the potential to improve comfort, participation and well-being.
Recommendations
Supporting young people with IBD-related pain does not always require major changes. Small, practical adjustments and open communication can make a significant difference to comfort, participation and well-being. Such adjustments should be considered within wider commitments to equity and schools’ duties under the Equality Act 2010. Embedding flexible and responsive approaches within school structures may also reduce the burden on individual young people to repeatedly request or justify support.
Healthcare practitioners have an important role in bridging clinical care and young people’s everyday experiences of pain at school. Pain assessment should extend beyond abdominal symptoms and disease activity to explore musculoskeletal and joint pain, concentration, mobility, fatigue and the impact of pain on participation in school life. Asking explicitly about lessons, examinations, PE, uniform, attendance and valued activities can help identify difficulties that may otherwise remain invisible.
Practitioners should also recognize that remaining in school or continuing to participate does not necessarily indicate that pain is mild: young people may conceal or push through significant pain to avoid missing learning, activities or time with peers. Where appropriate, and with the young person’s involvement, healthcare practitioners can help translate clinical needs into practical recommendations for schools, including flexible rest arrangements, appropriate seating, examination breaks, adaptations to physical activity and uniform, and timely access to medication or other pain-management strategies.
Importantly, support should be anticipatory rather than dependent on young people explaining or proving their pain when symptoms escalate. Collaborative planning between young people, families, healthcare practitioners and schools can establish in advance what support is available and how arrangements can adapt when symptoms fluctuate.
Key take-home message
For young people with IBD, pain is an everyday, embodied experience that shapes participation, learning, identity and relationships within school. Effective care must move beyond a bowel-focused understanding of IBD and involve collaboration between young people, families, healthcare practitioners and education practitioners to recognize and respond to pain as both a clinical experience and an everyday challenge.
Catherine Wilkinson, PhD
Reader in Childhood and Youth Studies, School of Education, Liverpool John Moores University
Email: c.wilkinson@ljmu.ac.uk
Jenna Rice, PhD
Lecturer in Psychology, School of Psychology, Manchester Metropolitan University
References
Bielefeldt K, Davis B, Binion DG. Pain and inflammatory bowel disease. Inflamm Bowel Dis. 2009;15:778-788. https://doi.org/10.1002/ibd.20848
Crohn’s & Colitis UK. Joints. 2023. Accessed September 18, 2026. https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/symptoms/joints.
Rice J, Wilkinson C. The everyday school experiences of children and young people with Inflammatory Bowel Disease. Education 3-13. 2025;1-14. https://doi.org/10.1080/03004279.2025.2604110
Rice J, Wilkinson C. School and school-related experiences of children and adolescents with inflammatory bowel disease: A scoping review. Child Care Health Dev. 2026;52(3):e70249. https://doi.org/10.1111/cch.70249
Zeitz J, Ak M, Müller-Mottet S, Scharl S, Biedermann L, Fournier N, Frei P, Pittet V, Scharl M, Fried M, Rogler G, Vavricka S, Swiss IBD Cohort Study Group. Pain in IBD patients: Very frequent and frequently insufficiently taken into account. PLoS One. 2016;11:e0156666. https://doi.org/10.1371/journal.pone.0156666