Ostomy Lifestyle
The physical and emotional consequences of stoma surgery can often be hard to overcome alone. Whilst support groups for people living with a stoma have been established in numerous locations for many years, there has previously been no real formal, professional service which could provide more consistent and honest information.
In 2007, Ostomy Lifestyle was created to fill this void. They set up a helpline which offers information, advice and support to anyone, including patients, their families and carers, affected by bowel or bladder surgery. The lines are manned by professional operators who have all experienced the surgery and who live with a stoma and can offer guidance from a unique point of view. Thanks to lottery funding the organisation is also able to provide callers with the opportunity to talk to a clinical nurse. Callers can ring as many times as they wish to discuss any number of issues which range from practical advice centred on travel and leisure activities, practical management of the stoma, diet concerns or pre-operation queries to relationship issues or distress linked to body image. However the purpose of the helpline is always the same: to provide people with the support and the insight they need to cope with their surgery and the stoma, to feel less isolated in their condition and to carry on with their lives.
For Sally, a lady who had ulcerative colitis for 19 years and was reluctant to have stoma surgery, the chance to talk to Ostomy Lifestyle changed her outlook on the process involved, both before and after the surgery. Her queries ranged from discussing the surgery itself, how the stoma would function, to how her body and lifestyle would change. She spoke to the helpline on seven separate occasions, both before and after her operation, and due to the reassuring and informative information she was offered, she now feels in control of her own health and leads a more active life. Her confidence has also improved and she has a more positive outlook on her future living with a stoma.
In the past five years, the organisation has expanded and has developed new ways in which to help individuals. Firstly, they have created a network of workshops which provide 1 to 1 sessions to help patients understand the surgery and what is going to happen to their bodies. These workshops aim to eliminate the need to call in the first instance. Whilst it is a positive indication that people are turning to the helpline and are not struggling in silence there is still the need to help people avoid reaching this crisis situation. By providing better access to information, Ostomy Lifestyle helps them to look after themselves and to understand their condition. They also have the opportunity to meet people in the same situation, providing yet another support network.
The Underwear and Swimwear shows are another initiative which aims to better the lives of those living with a stoma. The models admirably proved to themselves, others living with a stoma and the general public that it is possible to feel confident about their bodies, despite the stoma. One participant in the show said, ‘I felt empowered to live a fulfilled life and continue to build on my self-confidence and not be afraid to face new challenges but to embrace them instead....gave me a sense of belonging. The show helped to improve my self-confidence and self-esteem....you can still feel and look beautiful in your own skin regardless of a few ‘modifications’....The most important values I have learnt are to never take your life for granted and seize every opportunity and experience as you only live once!’
Quotes
'Thank you for listening to me, I feel more confident now and perhaps will also be more patient and realise that it takes time “to heal” after over a year of misery and difficult choices”. Candida Brown, Helpline user
"I always find it very satisfying to hear callers say how much they have benefitted from the call." Laurie Clark, Careline volunteer
“I volunteer to make people feel good about themselves." Alex Pullan, Careline volunteer
“I find Ostomy Lifestyle to be very helpful and it is comforting to know that there are people who can talk knowledgeably. I have rung several times and always found it helpful.” Helpline caller
Created 22nd February 2012
Ostomy Lifestyle were former members of Attend. For more information, or to join, please click here.
