JOSH volunteer Wendy Hetherington Vivienne Johnson
Bowel function is one of the few subjects that is still taboo and Sue Hale, General Manager of the Colostomy Association wants to change this. One in 500 people have a stoma – a surgically created opening on the abdomen which allows stool or urine to exit the body. Now the Association wants to raise awareness so that the poo taboo can be broken down.
Sue said: “This is not a problem restricted to one part of society. It affects people of all ages and for all sorts of reasons. We want to fight the taboo and make it more aware for members of the public. We want to create an environment where it’s OK to talk about colostomy.”
The operation can result from many different reasons including babies born with problems requiring surgery, accidents or cancer.
“People are starting to realise that having a colostomy bag is not the end of your life. For many people it can be a positive change” said Sue, who works for the Reading-based Colostomy Association.
“If you have been struggling with incontinence you are often better off with a colostomy bag.
“We have 100 volunteers who staff the Colostomy Association helpline 24/7 and answer thousands of questions a year. They also do home and hospital visits and go to open days to spread the word.”
If someone contacts the helpline needing advice or help they are paired up with a volunteer who has experienced a similar problem.
Sue said: “All the phone line volunteers have a stoma themselves.
“People can phone because they feel vulnerable and alone or because they need practical help. One person phoned the helpline because they had run out of colostomy pouches. We found the volunteer who lived closest to them who drove 50 miles to give them a supply of bags to tide them over the weekend.”
In addition the Colostomy Association run a closed Facebook group, website and print literature and a quarterly magazine.
“The magazine is a lifeline. We get a lot of positive feedback from callers,” she added.
Colostomy Association has also recently opened a specialist helpline targeting children: Junior Ostomy Support Helpline (JOSH) has been running for two months and is already helping hundreds of families across the UK.
JOSH volunteers are parents and carers who have experienced the difficulties that go hand in hand looking after a young child with a bowel or bladder diversion or dysfunction.
A JOSH spokesperson said: “Whilst not able to give direct medical advice the value of a listening ear and a shared experience with somebody who has gone through a similar situation can be invaluable.
“All callers are matched to a JOSH parent who can relate to your situation.”
For more information visit the Colostomy Association’s website.
Call 0800 328 4257 to access the 24 hour helpline and to contact JOSH.