It is a debilitating condition that can affect your quality of life, yet the mere mention of Irritable Bowel Syndrome can prompt sniggers of laughter. SARAH JONES meets one woman who is keen to break the stigma surrounding the illness.
WHAT a person does behind closed bathroom doors is not the sort of topic most would dream of dropping into conversation.
So with between ten and 20 per cent of the UK population experiencing Irritable Bowel Syndrome (IBS) at some point in their life, it means an awful lot of people are left suffering in silence.
With many often too embarrassed to even ask their doctor for help, one Hampshire woman has decided that it’s time things changed.
Taking the brave step to reveal all about her 20-year battle with the condition, Sophie Lee is determined to break some of the stigma surrounding it.
“People think it’s something to be ashamed of but it’s just a medical problem,”
says Sophie from Southampton.
“If I was saying to someone, ‘I’ve had terrible asthma for 20 years’, they wouldn’t fall around laughing.
But with IBS people find it ok to say, ‘that’s hilarious’, or to be really childish about it. That’s not good enough.
“I hope we’re going in the direction where people can talk about bowel problems without the fear of ridicule, but I don’t know that we’ll ever get rid of it completely.”
A digestive condition, IBS can cause bouts of stomach cramps, bloating, diarrhoea and constipation.
And – for people like Sophie would suffer with it badly – it can end up dominating their lives.
The 34-year-old says her symptoms have affected everything from her friendship and family relationships to her career and finances.
Her book, Sophie’s Story: My 20-Year Battle with Irritable Bowel Syndrome, lays bare the reality of living with IBS, from diarrhoea attacks that last for hours to stomach pains that continue for weeks.
“It took over every aspect of my life when it was at its worst,” she says. “I wasn’t going out or seeing any of my friends.
“I was really just trying to hold on to my job, which I wasn’t doing very well because I was in pain all day and finding it hard to concentrate.
“I was really miserable as well because it seemed like I didn’t have anything good in my life. I would wake up in pain, go to work in pain and go to sleep in pain, and the same thing would happen the next day.”
It was at this point – ten years after her symptoms started following a bad case of food poisoning when she was 12 – that the web designer spoke out about what she was going through.
With her symptoms now unbearable, she finally confessed all to her parents.
She was 22 and had just started her first job in Leamington after finishing her degree at Warwick University.
Then living miles away from her parents in Southampton, Sophie knew she needed help.
It was to be the start of countless appointments and tests to get to the root of the problem.
With more sinister diseases quickly ruled out, when she got formally diagnosed with IBS – which poses no serious health threat – she still struggled to find relief.
There’s no cure for IBS and the cause remains unclear, and Sophie found that some doctors dismiss it as little more than a stomach ache caused by stress.
“Up to 20 million people in the UK will suffer from this devastating illness at some stage in their lives, but doctors often see it as a minor problem,” she says.
“Other people dismiss IBS as being ‘all in the head’ and suggest that sufferers just need to reduce their stress levels.
This could not be further from the truth. The reality is that IBS can ruin lives.”
While medication works to ease some people’s symptoms, Sophie tried everything from laxatives to anti-spasmodics and peppermint oil to hypnotherapy, but to no avail.
It was only when she eventually saw a nutritionist who advised her to try a gluten-free diet that things started to change.
Embarking on the new regime nine years ago, Sophie discovered that cutting out things like bread and cakes made a real difference.
She has also found that taking magnesium and fibre supplements helped too, along with drinking lots of water.
“I’m still strict about what I eat, I don’t drink and stick to a routine – getting up and going to bed at the same time. I avoid travelling and staying with friends overnight too because the slightest change to my routine carries a fairly high chance of making me ill.
“So I’m not completely healthy, but I’m so much better than I was before.”
Going self-employed at the age of 26 has also improved things for Sophie as it means she can work from home, although she does believe this has probably limited her career prospects.
After coping with the condition for two decades, Sophie now sees herself as a “genuine expert on the disorder” and believes that hers is a story that every IBS sufferer can identify with.
She has also been running the IBS Tales website for nearly a decade, which has provided a forum for thousands of people to share their personal stories without fear of embarrassment and offer support to one another.
For Sophie the site remains hugely empowering – for she knows she is far from alone - and she is positive about the future.
“It’s been the most difficult thing I have ever had to deal with by a fairly large margin. It has spoilt certain times in my life and I’m still someone who has to think about having a health problem, but in many ways I have got my life back.”
To visit Sophie’s website or to order her book, visit ibstales.com