For 40 years, doctors said I had IBS. In fact, it was a hormone problem cured by a simple pill
JUDITH FUlT on ’S embarrassing symptoms started quite suddenly, when she was 19 and studying at university. ‘At first I assumed it was a stomach upset. I started getting diarrhoea in the mornings, every day without fail,’ says Judith.
‘It wasn’t painful but it left me feeling drained and exhausted.’
The symptoms persisted for years, regardless of what she ate.
‘When I was living in the Scottish borders and commuting to edinburgh for work I’d have to stop three times on an hour-long drive to work. meetings were a nightmare and I was always on edge as I knew I’d have to keep disappearing to the loo,’ says Judith, 64, a retired social worker, who lives with her husband John, 77, a retired businessman.
When Judith’s three daughters Tess, now 42, Joanne, 39, and natalie, 37, were young she often had to leave them unattended in the pram outside a public toilet because she was caught short.
‘This is one of my nightmare images of my illness,’ says Judith. ‘I hated leaving them on their own but I had no alternative — such was the urgency that I needed the toilet.’
Judith saw several doctors and most concluded she must have irritable bowel syndrome (IBS), a digestive disorder thought to affect four million adults in the Uk, that causes symptoms such as stomach pain, constipation and diarrhoea.
She says: ‘They said they didn’t know what caused it and there was no treatment or cure. I just thought it was a name they gave to a collection of symptoms when everything else had been ruled out. Because I always looked well and wasn’t too thin — I’m 5ft 7in and have always weighed about 9st — doctors couldn’t believe my diarrhoea was really that bad.
‘But they didn’t see me at my worst when I was stuck in the house for most of the day because I couldn’t be too far from a toilet.’
Incredibly it wasn’t until June this year — 48 years after her symptoms started — that Judith discovered what was wrong with her.
While researching online, she came across a scientific paper by Professor Julian Walters, professor of gastroenterology at Imperial College london, on a condition called bile acid diarrhoea (BAD).
THe paper said this was often misdiagnosed as irritable bowel syndrome. Professor Walters says as many as a third of all patients in the nHS who are currently treated for IBS where diarrhoea is the predominant symptom have bile acid diarrhoea. moreover, the condition is treatable with a drug.
‘That’s half a million people in the Uk alone — and the vast majority are undiagnosed and untreated, despite the fact experts have been writing about it since the mid-eighties,’ says Professor Walters.
The symptoms of bile acid diarrhoea include up to ten watery bowel movements a day, usually with an urgent need to go and frequently resulting in accidents. There is some bloating and abdominal discomfort.
‘Whether there are long-term medical consequences for having long-term diarrhoea is still unknown — but it has massive social implications,’ says Professor Walters.
‘Some patients can’t leave the house because they are so worried about finding a toilet in time. It can make it difficult to form relationships.’
However, there is still a distinct lack of awareness about the condition. ‘most patients — and doctors — are unaware that bile acid diarrhoea even exists,’ says Professor Walters.
‘It’s gone out of fashion among specialists because other causes of diarrhoea such as coeliac disease and Crohn’s disease have become more well-known. There has also been a pressure to classify diarrhoea as a symptom of IBS and then not investigate the cause.’ Bile acids are essential for digestion and absorption of fats and fat-soluble vitamins in the small intestine.
The liver releases large amounts of bile acids into the intestine every day, but only relatively small quantities are lost from the body. This is because 95 per cent of the bile acids are recycled back to the liver from the ileum (part of the small intestine).
But in bile acid diarrhoea, bile acid is overproduced and the excess bile passes into the colon, causing watery diarrhoea. It can be a symptom of Crohn’s disease, a chronic condition characterised by inflammation of the gastrointestinal tract.
But for many sufferers there is no known cause for their symptoms.
Professor Walters’s research has found that the trigger for idiopathic bile acid diarrhoea (from an unknown cause not related to Crohn’s disease) is a deficiency in a hormone called FgF19, which normally switches off bile acid production when bile acid is reabsorbed.
‘At the moment we don’t know why this happens, although some patients say their symptoms started after a gastrointestinal infection.’
When Judith Fulton discovered Professor Walters’s research, she said it was a lightbulb moment. ‘It fitted with my symptoms perfectly and I couldn’t believe no doctor had ever mentioned it to me before.’
By then she and John had moved to Bergerac, France, and her doctor there had never heard of bile acid diarrhoea. Judith emailed Professor Walters in london in desperation and asked if she could pay privately for a consultation. ‘I described my symptoms to him over the phone and he said it sounded likely that I could have BAD. In the meantime, he suggested I tried a drug called cholestyramine (Questran), which relieves the diarrhoea by binding to the unabsorbed bile acids.
‘If it did, the chances were I had bile acid diarrhoea. I decided to give it a try — it didn’t work straight away but within a few months I noticed an improvement. even so, making the plane journey to see Professor Walters in July was an ordeal — I had to take six anti-spasmodic pills to calm my bowel and make sure I wasn’t running back and forth to the loo.’
Professor Walters arranged for Judith to have a diagnostic test called SeHCAT, which uses a synthetic bile salt that shows up on scans. The patient swallows a capsule containing SeHCAT and then body scans are taken seven days apart to test how well the compound is retained or lost from the body. In a person with normal bile acid function more than 15 per cent of bile is detectable in the body after seven days, but in people with BAD only one to five per cent of bile acid is retained — showing they are losing excessive amounts of bile acid. ‘my results were positive for BAD — finally after 48 years of diarrhoea I had a definitive diagnosis,’ says Judith. ‘It was such a huge relief.’
After three months on the cholestyramine drugs Judith’s bowel movements are normal and she no longer has diarrhoea. ‘I did suffer side- effects including sleeping difficulties, but these went away after a few weeks. I’ll be on the drugs for life unless a new treatment is discovered but I don’t care — I feel so much better than before.’
Although cholestyramine is available on the nHS, government health watchdog nICe recently ruled there is insufficient evidence that the SeHCAT test is useful and cost-effective. Privately it costs around £600.
Professor Carole longson, nICe’s Health Technology evaluation Centre director, says: ‘There is little evidence, for example, on the clinical effectiveness of bile acid sequestrants [such as cholestyramine drugs] in treating the condition, nor is it clear as to their exact mode of action. It is unclear whether bile acid malabsorption is a primary condition or secondary to another condition.’
PRoFeSSoR nick Read, a gastroenterologist and medical advisor to the IBS network, says: ‘I diagnose bile acid malabsorption quite frequently in people with IBS and I find that cholestyramine is a very effective treatment. I’ve seen patients who have had diarrhoea for years dramatically improve using this treatment.’
‘Unfortunately, the impact of bile acid malabsorption in IBS is not well recognised. I would estimate that fewer than 20 per cent of gastroenterologists treat it and less than 10 per cent are using the SeHCAT test.
For Judith, at least, the test and treatment have given her her life back. ‘I now have the freedom to go out without having to research where the nearest toilet is first,’ she says.
‘I can’t tell you how liberating that is after all these years.’