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Abstract Background Inflammatory Bowel Disease is a chronic, untreatable condition represented by two illnesses, Crohn's and Ulcerative Colitis. Despite high incidence in well-developed industrialised countries, and the significant impact of symptoms on patient's quality of life, little is known about living with Inflammatory Bowel Disease. Aim To explore the patients' experiences of living with Inflammatory Bowel Disease. Design A qualitative systematic review. Data sources CINAHL, Medline, British Nursing Index and PsycINFO were searched using the following keywords: Inflammatory Bowel Disease AND experiences. We have limited the search to studies published in English from 2000 to 2017. Review method Thematic synthesis. Results Data from 23 studies, identified that fatigue, incontinence and uncertainty about future, body image, and lack of information from healthcare professionals dominated the experiences of those living with Inflammatory Bowel Disease. Also, patients living with Inflammatory Bowel Disease were reluctant to disclose their illness due to lack of public awareness and stigma surrounding symptoms. From these, an overarching theme has been identified: Living in isolation and exclusion. Conclusion Patients with Inflammatory Bowel Disease face a variety of problems, often their priorities and those of healthcare professionals differ greatly. Healthcare professionals have little evidence needed to provide adequate, holistic care to this group. With a rise in the Inflammatory Bowel Disease population in newly industrialised countries it is estimated that the condition is turning into a global disease, potentially making long term care unsustainable. More evidence is needed to understand the concerns of this group. [ABSTRACT FROM AUTHOR]