When Jacqueline Dudley woke up from surgery the surgeon was standing at the end of her bed and said, “Well, you’ve got cancer and a colostomy.” She had never heard the word colostomy.
This was her brusque introduction to the stoma that she has lived with for the last 16 years.
The sprightly 76-year-old now takes it in her stride but admits that wasn’t always the case: “A lovely doctor called John said to me; “Jackie, don’t worry about it. It’s a bag on your tum. Just ask for a bag to match.” That is humour that you desperately need”, she says.
Jackie is a long term volunteer at the Colostomy Association (CA) which has headquarters in London Street, Reading. Her experience living with a stoma makes her invaluable in advising other Ostomates.
The Colostomy Association team operate a 24 hour helpline service, with the majority of the advisors and all the trustees wearing stomas themselves. Niall Norbury CA’s Marketing Communications Officer says: “We can’t give medical advice, but we offer all kinds of support and signposting. A lot of people think with a stoma it’s the end of your life. Some of the illness that led to the stoma was restricting. The stoma can give the person more control and the chance to do things they couldn’t do before.”
For children with stomas the CA’s junior offshoot group JOSH, offers vital advice to parents. JOSH recently helped a young girl with a stoma who was struggling at school. JOSH set up a question and answer session with her classmates, which helped the youngster with any embarrassment and her grades have since soared.
The Colostomy Association want to confront the embarrassment and stigma surrounding Colostomy by bringing the subject to the wider public. As Jackie points out: “We don’t like talking about bottoms.” One in 500 people in the UK wear a stoma. A colostomy is one of the three types of stoma. Cancer, Crohn’s, Colitis, physical injury and childbirth are common conditions that can lead to having one fitted. Some stomas are fitted as a temporary measure and patients are able to carry on with normal life, such as going swimming.
The Colostomy Association celebrates its 10 year anniversary this year and wants to to see Reading take part in the festivities. Niall says: “This year we’re making a concerted push to get involved in Reading. If you have a stoma, Reading is the place to be.”
Niall is urging Reading to go purple (CA’s flagship colour) on October 3rd. He is busy gaining support from the town’s local businesses, such as Nibsy’s gluten free cafe (a delight for Crohn’s and Coeliac sufferers) and the 58 Barber Shop who will be donating £1 for every £20 raised.
In April CA will be visiting local arts groups in an initiative called Pouch Face. They will be handing over stomas and asking youngsters to decorate them in any way they wish.
CA are holding a celebration weekend on July 11th and 12th at the Madjeski Stadium. This will include an open day, advice, evening dinner, raffles and a fashion show. All are welcome to go along.
Colostomy Association helpline: 08003284257
General enquiries: 01189391537