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This study explored the lived experiences of children and young people with inflammatory bowel disease (IBD) in UK schools. Using a qualitative design, semi-structured online interviews and participatory design interviews were conducted with seven children and young people aged 5–16 years living with IBD or a related bowel condition. Two overarching themes are discussed in this report: managing IBD in the school environment; and supportive and unsupportive school practices.

Key findings include:

• Pupils continually negotiated medication routines, dietary restrictions, toilet access, hospital appointments and participation in physical education (PE).

• Although practical adjustments such as toilet passes, access plans and safe spaces were highly valued, support was often inconsistently implemented and dependent on individual staff members.

• Participants described challenges associated with less-known symptoms, including fatigue and brain fog, which were frequently misunderstood by school staff.

• While supportive teachers, peers and flexible accommodations enhanced inclusion and wellbeing, experiences of stigma, exclusion and inadequate understanding remained.

Implications for policy and practice include:

• Teacher training should be implemented in schools and should emphasise the unpredictable and often invisible nature of IBD.

• Academic continuity during medical absences should be supported through accessible online materials.

• PE should adopt flexible participation models, including adapted activities or alternative roles.

• Schools should address the wider social environment by implementing peer awareness initiatives to reduce stigma and by providing safe spaces and pastoral support.