Bladder, Bowel & Stoma Resources
Adolescent and Adult Care of Congenital Urogenital Conditions (Video)
https://www.youtube.com/watch?v=_KKmamOEZ58
Educational resource on lifelong care and transition to adult services.
Association of Stoma Care Nurses UK (ASCN UK): https://ascnuk.org/
Professional organisation providing support, guidance, and education on stoma care.
Bladder & Bowel UK: https://www.bbuk.org.uk/
Provides information, support, and advice for people living with bladder and bowel conditions, their families, and healthcare professionals.
Coloplast: https://www.coloplast.com/products/
Provides medical products and support services for people living with stomas, continence conditions, and urological needs.
Colostomy UK - Active Ostomates: https://www.colostomyuk.org/active-ostomates/
ERIC – Children’s Bowel and Bladder Charity: https://eric.org.uk/
Offers support, information, and resources for children and families living with continence difficulties.
Mitrofanoff Support: https://www.mitrofanoffsupport.org.uk/
Offers peer support, information, and shared experiences for people living with a Mitrofanoff.
Onein5000foundation: http://onein5000foundation.org/about
Support for those born with Anorectal Malformation
Ostique Connect App: https://apps.apple.com/gb/app/ostique-connect/id6463715231
A peer-to-peer support app connecting people living with an ostomy.
Paediatric Stoma Nurses Group: https://www.psng.co.uk/
Provides specialist support and resources for healthcare professionals and families caring for children with stomas.
Sacral Nerve Stimulation Support: htps://www.facebook.com/group
Sexual Support – ARM and Hirschsprung’s Disease: https://sexuality-arm-hd.com/
Provides information and support regarding relationships, sexuality, and intimacy.
Personal stories:
“Mr Magic Toilet” https://www.bbc.com/news/av/uk-england-tees-64749519
A personal story highlighting lived experience and advocacy.
Rare & Resilient ONE in 5000 Podcast:
https://rareandresilientonein5000podcast.podbean.com/e/episode-39-interview-with-joe-32-year-old-iaarm-adult-from-durham-county-england/
Podcast sharing real experiences of living with rare condition