The real reason you may have an upset tum (and what to do about it)

W henever Bernadette Lindley goes anywhere new, whether it’s a restaurant or cinema, there’s one thing she has to find first: the loo. For every day of her life, Bernadette, 34, has battled with diarrhoea. ‘It has ruined my life, destroyed my confidence and even stopped me leaving the house.’

As a child, she was told by doctors it was something she would grow out of — when she didn’t, the problem was variously put down to food intolerances and then irritable bowel syndrome (IBS), but nothing she tried alleviated her symptoms.

This year, though, Bernadette finally found the answer. She has a condition known as bile acid diarrhoea.

This causes chronic tummy upsets — and going to the loo ten times a day, as Bernadette has done, is not unusual. experts believe up to a third of people diagnosed with IBS may, in fact, have bile acid diarrhoea, with around one in 100 people affected overall.

Bile acids are made in the liver and stored in the gall bladder. They act like detergents to break up fatty food and are released into the small intestine when we eat.

After digestion, any bile acids left over in the far end of the bowel — the large intestine — are absorbed back into the body. They travel through the bloodstream back to the liver and gall bladder, where they are stored until our next meal.

In patients with bile acid diarrhoea, however, too much bile acid reaches the large intestine.

The most common reason for this is they lack a hormone called fibroblast growth factor 19, which switches off bile acid production, and so too much of it builds up — more than can be used during digestion.

The excess bile acid then irritates the large intestine, causing it to secrete more fluid, leading to loose stools and diarrhoea.

Bernadette, a married mother-of-three, says her symptoms began when she was just a toddler. her mother took her to the doctor — ‘but he just said it was toddler diarrhoea and I’d grow out of it’.

In fact, it got worse. ‘Soon, I was running to the loo ten times a day,’ she recalls. ‘ There were times I made it and times I didn’t. School was a living hell.’

Sleeping over at friends’ houses was impossible. Bernadette also suffered embarrassing ‘ growling’ noises from her stomach all the time.

‘It was so loud. If another pupil sat next to me, I’d desperately try to cover the noise by coughing, talking — anything,’ she recalls. ‘But the others would still hear and I was bullied for it.’

DESPITE

her mother taking her back to the Gp several times during her school years, Bernadette never had any formal tests — although at one stage she was referred to a dietitian who suggested cutting out various foods, including fibre-rich foods, fruits, dairy, carbohydrates, chocolate and fizzy drinks. nothing helped.

‘The doctors simply monitored my weight — I was very thin — and told me to keep trying to eliminate food groups and to take Imodium if it got too bad,’ she recalls.

As she got older, Bernadette read up about IBS and asked her Gp if her problem could be that. ‘he said it could be. But often people with IBS suffer constipation and diarrhoea, whereas I only ever had diarrhoea.’

professor Julian Walters, a consultant gastroenterologist at Imperial College London, and a leading expert in this area, says around a quarter to one third of people with long-term diarrhoea will have bile acid diarrhoea. Doctors have known about the existence of the condition since the Sixties, but, according to professor Walters, it is not always considered as a possible cause of IBS-type symptoms and Gps don’t know enough about it.

he says that one study from 2016, published in the journal BMJ Open Gastroenterology, found that almost half of people who’d suffered the symptoms of bile acid diarrhoea had waited at least five years before getting a correct diagnosis, while for some it had taken 20 years.

many were first told they had IBS. professor Walters suggests the problem is that while Gps will take steps to rule out serious conditions such as cancer, when those come back clear, no further tests are offered, leaving patients stuck with the IBS label.

In fact, IBS itself is a broad term that covers various problems which include constipation or diarrhoea or alternating between the two — and so people labelled with it may not get specific treatments that could make a huge difference to their quality of life.

‘many with bile acid diarrhoea are occasionally incontinent and suffer social embarrassment and anxiety,’ says professor Walters. ‘They often can’t travel or take certain jobs because they are anxious about getting to the loo.’ Bernadette knows all too well the psychological impact. ‘In my 20s, I’d got to the serious stage with a boyfriend and stayed at his house,’ she says. ‘I woke in the night with him shaking me violently.’

Bernadette had soiled herself and he had been terrified that she was dead because she seemed unaware of what had happened.

‘It was mortifying,’ she recalls. ‘I left and the relationship didn’t last — unsurprisingly.’

In time, Bernadette settled with a partner and had two children, Imogen, now 11, and Camron, nine. They separated and then she met Craig, 36, who she says has been very understanding.

But even their wedding day was blighted by stress. ‘I dreaded it,’ she says. ‘I could not think of anything worse than having an accident as I walked down the aisle.’

Terrified, Bernadette took as much Imodium as she could to close her gut down for the big day. The over-the counter medication slows the rhythm of digestion and is often used to treat normal bouts of diarrhoea. ‘I took more than the recommended amount, which worked,’ she says.

In time Bernadette and Craig had a daughter together — Lilly, now aged five. ‘he was incredibly supportive,’ says Bernadette. ‘he pushed me to keep trying for a diagnosis.’

But still doctors could give her no answers despite further tests for allergies and to check her stools for infections.

professor Walters says there is no specific symptom that differentiates bile acid diarrhoea from IBS, but says that pain is more likely in IBS, whereas diarrhoea on its own without pain may point to bile acid diarrhoea.

however, the diagnosis can only be confirmed with a specific test — so the key is that a doctor has to consider that bile acid may be the problem.

Finally, earlier this year, Bernadette begged her Gp for a referral and was sent to hospital for a colonoscopy — in which a small camera is inserted into the bowel to check for abnormalities.

‘Afterwards, the consultant told me my bowels were normal and there was nothing sinister going on,’ she says. ‘I was relieved, but I was also upset because there was still no diagnosis.’

About to be discharged once more, Bernadette broke down in tears. ‘I begged him to help me find out what was wrong,’ she says. ‘Thankfully, he referred me to a colleague.’

The new gastroenterologist made the connection, and sent her for a SehCAT scan. This involves swallowing a radioactive powder capsule — a synthetic bile salt — which acts as a tracer, so that consultants using imaging technology can check how much bile acid is being absorbed.

EIGHT

weeks later, in October 2017 the consultant confirmed Bernadette was suffering from bile acid diarrhoea. She has now been prescribed sachets of Cholestyramine which binds to certain components of bile in the gastrointestinal tract.

‘ This stops the colon being irritated by the bile acid, so the stools will be less watery,’ explains professor Walters.

Bernadette has been taking the sachets now for four weeks. ‘They are slowing down my bowel movements, but make me feel very nauseous. I am currently waiting to change to a new type.’

professor Walters advises patients shouldn’t simply accept a diagnosis of IBS if they have long-term diarrhoea. ‘nobody should suffer from diarrhoea for years without talking to a doctor to have tests to rule out bile acid diarrhoea.’

Other causes that should be ruled out include inflammatory bowel disease, Crohn’s disease and ulcerative colitis.

‘When I think how long I put up with feeling dreadful and ashamed, I feel angry,’ adds Bernadette. ‘how many others out there are suffering but are being told they simply have IBS and to go home?’