Jen Rose, IBD patient and mother of a young patient, creates journal for youth living with IBD

“Me (and IBD)” is a colouring journal designed specifically for young people living with inflammatory bowel disease (IBD). Created by Jen Rose, an inflammatory bowel disease (IBD) patient, parent, and patient advocate, this journal helps young patients take their first steps toward becoming informed, confident individuals who can live well with a chronic disease.

Inspired by her own diagnosis with ulcerative colitis and later by her son’s diagnosis with Crohn’s disease, Jen combined her personal journey, patient advocacy work, and creative skills to develop a resource that addresses not only physical health but also the emotional and psychological aspects of living with IBD. Drawing from her voluntary peer support work and close collaboration with the paediatric IBD team at Addenbrooke’s Hospital in Cambridge, Jen transformed her insights into over 120 pages of hand-illustrated content tailored to young patients.

The journal blends creative activities with education, encouraging users to learn about their bodies, record thoughts and questions, and tackle feelings of isolation. It also includes shared patient stories to promote connection and understanding. Carefully co-developed with health and education professionals to ensure accuracy and age-appropriateness, the journal underwent a six-month pilot at Addenbrooke’s Hospital and is now integrated into standard care. With charitable support, it's also available to paediatric IBD patients in Scotland and Ireland.

Currently, Jen is researching the impact of the journal in healthcare settings and is working on new projects, including a mental health-focused journal (Me and my mind), an adult IBD version, and versions for other chronic illnesses.

Adapted from:
For more information: https://www.meandibd.com/
https://nhscep.com/2024/04/10/our-patients-jen-rose/
https://www.youtube.com/watch?v=H9P1oyD9D4w