14 November, 2018
The Colostomy UK Closed Facebook group is amazing! That may sound a rather dramatic statement, but I am astounded on a daily basis by the group and it’s members.
Set up in 2009, we changed the group status in 2012 to ‘closed’, which meant only members of the group could see posts. Let’s face it, we don’t necessarily want all of our Facebook friends reading posts about poo. The added privacy means members can talk openly and freely about any issues they have, safe in the knowledge these conversations stay within the group. It has been quoted that as of early 2018 Facebook had more than 2 billion monthly users – wow! So with so many of us using it in our daily lives anyway it seems sensible to use social media as a form of support too. And what amazing support it is. Our group has grown from 250 members in January 2012 to over 5800 by the end of June 2018. We have members from all over the world and according to group statistics there is not an hour of the day when the group is inactive. As soon as a new member joins, an Admin welcomes them and numerous welcomes follow from members. People may arrive with a specific problem or they may be pre op and terrified. We also have partners, carers and parents of ostomates who join to help their loved ones.
We only offer experience based advice – any medical advice should always come from a health professional but for many of us, to speak to someone who KNOWS, someone who has been there and can offer practical suggestions to problems, is priceless. And social media is fast, very fast. Our members are incredible and can reassure each other within minutes that the problem they are experiencing is common, or they found this or that helped. You can almost feel the relief when someone who joined with a problem has it is solved almost immediately.
I can’t pretend we are all best friends, in a group of over 5000 you will never all get on but I have genuinely made friends for life on the group and disputes are rare. I have been lucky enough to meet some lovely members on days we’ve arranged a get together but also others I’ve never even met feel like an old friend. It’s not all doom and gloom and leaky bags either. By the nature of a support group, people do ask when they are having problems but they are also the first to tell newcomers, especially those pre op that life with a bag can be great. We also encourage off topic posts. It can be very uplifting to have a joke and a laugh and we believe this is an important part of support too, so encourage a mix of posts. We all celebrate and commiserate together. It feels like a family and the members make the group the huge success it is. I am very proud to be a part of it
If you would like to join the Facebook group, search for ‘Colostomy UK Support Group’ on Facebook, choose the group and you will see a tab to click to join. Once you’ve requested to join, one of the Admins will greet you. We look forward to seeing you there!