While friends and family can be very supportive, it can be tremendously helpful to talk to someone who has actually experienced what it's like to live with a stoma. Both sharing your own learnings with others and listening to their experiences can give you a whole new perspective on life and on your stoma.
How do you find others with an ostomy?
You can try asking your healthcare professional for guidance in finding people in situations similar to yours. Often, your nurse will know of local networks or support groups.
You could also look for ostomy forums or networks online. Many have found support in some of the thriving online communities.
A good place to start could be one of the three main support groups in the UK:
- The Ileostomy & Internal Pouch Support Group www.iasupport.org
IA (The Ileostomy & Internal pouch Support Group) is a registered charity which specialises in supporting people living with an ileostomy or an internal pouch, their families, friends and carers.
Established in 1956 by the surgeon who developed the ‘spouted stoma’ – a surgical technique still used today, IA works very closely with the surgical and nursing communities to provide independent support in the form of patient-focussed literature, quarterly magazine, IA’s patient visiting service -putting patient and visitor in touch – and a network of local support throughout the UK and Ireland. IA’s volunteers have themselves undergone surgery so guidance and support comes from personal experience.
Why not get in touch with us today on 0800 0184 724, email firstname.lastname@example.org or online at www.iasupport.org.
- Colostomy UK www.colostomyuk.org
Colostomy UK is a national charity that provides support, reassurance and practical advice to anyone who has or is about to have a colostomy in the UK. We believe that everyone with a stoma should be able to live a full and active life. We are here to help and support you, your family and carers. Our 24/7 helpline offers advice and support and our volunteers, who all have a colostomy, will listen and provide reassurance. Our wide range of informative booklets, quarterly magazine and Facebook group provide support to anyone affected by stoma surgery.
- The Urostomy Association www.urostomyassociation.org.uk
The Urostomy Association provides information and support for people who have, or are about to have a urinary diversion of any kind, including urostomy, continent diversion and bladder reconstruction. We have information leaflets available on many of the issues which will affect patients before and after surgery, along with a DVD and regular magazine. Our local Branches offer a chance to meet people in a similar situation, and our trained volunteers are available to assist on an individual level. Membership is free of charge for the first year, via our website, by post or telephone.