24 March, 2015
Set up with a few dozen members in 2009, the Colostomy Association’s closed Facebook group is celebrating reaching 3,000 members this month.
Since its creation, The Colostomy Association’s closed Facebook group has become one of the charity’s most vital resources. The group acts as a safe haven for ostomates and those about to undergo surgery to discuss issues, problems and concerns privately. Carefully moderated, members of the group can feel safe that any advice or information they receive is correct, and that anything they discuss remains confidential.
Understanding that more and more ostomates were looking for information and support online, The Colostomy Association set up the closed Facebook group six years ago in September 2009. Within two years, the group had 500 members and today more than 3,000 ostomates use the group as a source of advice and support.
Although it may be hard to notice, a lot of work goes into managing and moderating the Facebook group. A team of trained Facebook admins ensure that abusive comments are deleted, that advice given is correct and that the group remains a welcoming space. All information provided is based on experience and no medical advice is provided.
Speaking about the success of the group, Facebook admin – Sarah Squire – said: “Facebook is a part of many people,s lives so they are online already and to have a support group readily available makes it easy for people to combine it with the social media they use already. The advice is fast and thorough – people can have answers to problems literally in minutes, and as we have a lot of international members as advice is 24 hours a day.”
The response from members has been overwhelmingly positive – for many members it is an absolutely vital resource. One member said: “I’m in France and searched everywhere for help and support over here. I couldn’t find anything, and as far as I can tell there still isn’t. The CA facebook group quite simply saved my sanity, letting me know that I wasn’t alone, and giving me a true perspective on having a stoma.”
The group has also helped build friendships and help ostomates realise they are not alone. Another group member said: “I have met two other ladies in my area and we have started an ostomy support group. We meet informally for a chat and to share experiences. This wouldn’t have happened without this site.”