Lorna's Story

(Originally printed in the Evening News - 17-Jul-06)

Lorna can't lead a normal lifestyle. A trip out with her four-year-old daughter Erin has to be planned with military precision. And even a walk to the shops is fraught with problems.

For Lorna has irritable bowel syndrome (IBS), and for the past 19 years the condition has ruled the 39-year-old's life, dictating where she walks, where she shops, where she socialises.

"You have to plan your day with IBS and it's a case of 'where are the nearest toilets' instead of 'what am I going to do', or 'what am I going to buy at the shops'," admits the housewife from Livingston.

"You have to be aware of where toilets are, you can't plan anything in advance as you need to see how you'll feel on the day. Sometimes I can wake up and feel really sick and I can't stay out of the toilet - it's just horrible."

Symptoms of IBS include constipation, diarrhoea, nausea, vomiting, stomach pains, belching, flatulence and bloating, and for Lorna, the embarrassing condition led her to giving up working in a bank as she was too ill.

But Lorna isn't alone. Diseases of the digestive tract affect three million people a month in the UK, with the most common complaint being IBS which is estimated to affect a third of people in Britain. Then there are inflammatory bowel diseases such as Crohn's or ulcerative colitis, which affect 150,000 people in the UK, and coeliac disease, which again affects one in every 1000 people.

IBS is also incredibly common in the US where 15 per cent of the population have it - including actress Cybill Shepherd.

"Diseases and conditions of the digestive tract are one of the nation's biggest causes of death," says Alison Hesketh, director of the Digestive Disorders Foundation. "Yet, because of taboos, ignorance and embarrassment, many people are left isolated and suffering in silence from illnesses that could be treated."

And when it comes to IBS, Dr Graeme Smith from Edinburgh University's School of Health in Social Science, says the symptoms are far from pleasant. "Physical symptoms include altered bowel habits together with other non-intestinal problems such as lethargy, problems sleeping and indigestion.

"Anxiety and psychosocial problems are also common and these can have a detrimental impact on quality of life."

Sadly, what causes IBS isn't known, although it sometimes develops after a bout of gastroenteritis, an inflammation of the stomach and bowel linings which causes sickness and diarrhoea. But for Lorna, her IBS came on after a bout of constipation.

She recalls: "I went to the doctor and they thought I had an ulcer so I was treated for that. Eventually, I went to hospital and, after some tests, a consultant diagnosed me with IBS.

"It was a release that I knew what it was but IBS is an invisible chronic illness and a lot of people don't understand what it's like to have it. And there's no cure, so I was upset.

"You just have to live with it, which can be quite difficult." Lorna adds:

"I can't do anything without thinking about my IBS. I always have to think, can I go there? Is there a toilet? I suppose it consumes my life to an extent. In my old house I could walk to the shops but I knew how to get to the shops via three toilets - it wasn't a case of a simple walk. It was a nightmare."

And is there any hope? "It can get better in time, but I'm still waiting. I get more severe symptoms if I'm stressed - usually the following day I'm a lot worse. And certain foods can bring it on."

As there is no cure for IBS self-help is one of the best ways to improve symptoms. Lorna avoids potential irritants such as caffeine and excessive alcohol, stocks up on fibre and cuts down on gas-producing foods such as beans.

Stress is a trigger for her so she has learned stress management techniques.And she joined the IBS Network, a dedicated UK support network.

"I simply called them and became a member," she says. "They have a helpline which is manned with qualified nurses. And I have a 'Can't Wait' card (credit card-sized card handed over for assistance in finding a toilet quickly) which I can use in public places.

"But I have had a situation in a shop where staff have passed my card down every checkout in the shop to the person it was to go to so everyone in that shop knew I needed the toilet. It was very embarrassing."

Since she joined, Lorna has been given tips on managing her condition, and most importantly has learned that she is not alone. "Because it's an invisible illness no-one understands what it's like. And it's embarrassing - who wants to sit and talk about their bowels? But you're not alone, it is much more common than people think."