Dec 8, 2015
Adjusting to life with a stoma is difficult at any age, but it can be especially challenging for young people.
Caring for a child with an ostomy can be incredibly isolating. It is difficult to find other parents who have been through the same experiences as you who can solve problems regarding sleepovers, school trips and other similar challenges.
In late 2014, the Colostomy Association launched a brand new service to support the parents and carers of children with bowel and bladder dysfunctions – the Junior Ostomy Support Helpline (JOSH).
Anyone who calls the Colostomy Association helpline can request to speak to a JOSH helpliner. All JOSH volunteers are themselves parents of children with bowel or bladder dysfunctions enabling all callers to speak to fellow parents who have experienced the same challenges as themselves.
One of the first people to become a JOSH helpliner was Gaile Griffiths. Gaile joined JOSH in September 2014, bringing with her plenty of knowledge and experience as a parent of a child with a stoma.
At just 1 day old, Gaile’s son, Aled, underwent his first operation to form a colostomy. Weighing only four pounds, Aled was the same size as the ostomy bags he would be wearing. Over the next few years, Gaile and her husband encountered many challenges but they “researched a lot into his problems so that we could ensure that he received the help that he needed.”
Every JOSH helpliner has a similar story of how they came to understand and manage their child’s condition. For callers to the helpline, simply knowing that they’re not the first parent or carer to experience these problems can be life-changing.
Gaile remembers her first call she took as a JOSH helpliner: “My first call was quite a nerve racking experience to start with, I wanted to make sure that I said the right words to help the caller rather than put my foot in it. A short time into the call it all became natural, and I remember feeling really proud that I had been able to give someone some useful information.”
Each caller to the JOSH helpline can be paired up to a parent whose experience or background best matches their own – tailoring advice to suit the needs of each individual caller. Although none of our helpliners can provide medical advice, the emotional support and practical information they can provide is invaluable.
“I have had numerous other calls to help people, some have been for information about flying with a stoma, others have included parents of children who were about to have stomas” said Gaile. “Each time I was able to help the caller in some way by giving them either the information they were after or just the reassurance that they weren't alone.”
If you would like to speak to a JOSH parent, please call the CA helpline on 0800 328 4257 and ask to speak to a JOSH helpliner.
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