living with stomas.
Set up by Bobbie Minshull, the group provides a private, empathetic environment in which people with stomas - who have to use colostomy, ileostomy or urostomy bags - and their families can meet.
“People who have them don’t want to have them, it’s not a lifestyle choice. It’s an exclusive club that no one wants to be a part of,” Bobbie says. “But you can still go out and have fun. Most of the time you tick along, you live a normal life. I play golf, swim, ski.
“People can walk around and you wouldn’t know they had stomas, but it’s a mental issue. It’s not something anyone wants to have and it’s not something you can really talk about. And that’s the big problem – people suffer in silence.”
Bobbie had her first stoma procedure after cancer treatment left her with little control over her bowel. “I had cervical cancer in the 80s, radiation was much less refined then and it fried my abdomen,” she explains.
She had surgery for a second stoma, for urine, in 2009. “For me it’s never going to be reversed, this is permanent, so you make the best of it.”
There is information about stomas online, and web forums to interact with other ostomists. But Bobbie says older people can miss out.
“Older people might not be online to get the up to date information or the support that talking to fellow ostomists can give,” she says. “That’s why I wanted to start a support group in this area - the nearest ones are either in Edinburgh or Newcastle which is too far to travel for a couple of hours of social interaction.
“I have had one of my stomas since 1991 and I have learned a lot over the years. I want to help people realise it’s not the end of the world, and if I can help someone miss out on some of the steps I have been through then that will be a good thing.
“So I spoke to the local stoma nurse and decided that I would try and set up a group in the area. The idea is to get people together and exchange tips and ideas. It’s somewhere people can go to make friends, be open about their stoma and learn from each other.”
The group, which got together for the first time earlier this month, will meet on the third Thursday of each month from 6-8pm at Berwick Hospice, Hazel Marsden House.
Partners and family members are also welcome at the group. “My husband has been wonderful, he has supported me through everything and has been my rock,” Bobbie says. “He comes along to the group because partners are often forgotten; they have got to deal with it too.”