Searching for the Lost Ostomates
A mother of two young children, who suffered debilitating Ulcerative Colitis for five years, and ended up having blood transfusions and underwent a ‘world first’ single-site keyhole surgery to remove her entire large intestine and rectum, has turned her experiences into a national event and campaign to reach out to others with stomas who do not have the support of a patient group or association (known as Lost Ostomates).
Caroline, who now has a permanent stoma and has to wear an ileostomy bag, has launched The Good Digestion Show, incorporating IBD Expo and Stoma Central, on 24th & 25th June 2011, as part of her crusade to reach out to the enormous 88% of stomates who are not supported, as well as to the estimated 180,000 sufferers of Inflammatory Bowel Disease (IBD) - Ulcerative Colitis and Crohn’s Disease – and the 1 in 5 people in the UK who suffer with IBS (Irritable Bowel Syndrome).
Said Caroline: “Many people carry on ‘putting up’ with things because they don’t know what is available to them. But it’s not necessary; I want people to discover that there are many different things that can help and improve their quality of life. It is only since having lived with Ulcerative Colitis and now having a stoma myself that I have realised how hard it is to find the right information and products that suit me and my lifestyle.”
Caroline was living on a cocktail of steroids and other powerful drugs to combat the immune system disorder which attacked her large intestine, causing intestinal bleeding and continuously dashing to the toilet. She became virtually housebound until the surgery in March last year, and wasn’t even able to play on the floor with her two young children as the movement would trigger another bout. During her illness, her husband relentlessly trawled the internet to find out more about the disease, what might be the cause, what products or diets might ease the symptoms, what the drugs Caroline was on might do to her in the long term, and what options were open to her.
Having gone ahead with surgery, the renewed energy and quality of life Caroline has enjoyed has driven her to establish The Good Digestion Show so that others can see for themselves all the choices that are open to them. It has been created to offer help, advice, support and products, not only for those with Ulcerative Colitis and Crohn’s disease, but also those who have had stomas due to diverticular disease and bowel cancer. It will also focus on IBS (Irritable Bowel Syndrome) and food intolerances, such as coeliac disease.
Alongside the variety of products and services, Caroline is planning an informational seminar programme, a fashion catwalk and a theatre kitchen with celebrity chefs.
Said Caroline, “I am aiming to bring together patients, the general public and the professionals. That way all the information people need will be under one roof and plenty of experts on hand to answer questions.”
Posted on 5th August 2010