The mystery stomach pain affecting millions
Solving the mystery
In the autumn of 2014, aerospace engineer Martin Burridge thought he was dying: sudden cramping abdominal pain would drop him to his knees in agony. The Welsh 46-year-old father of two, who had never had stomach troubles before, became so bloated with gas that he couldn’t eat. He lost two and a half stone in six months and had to take two months off work and lie on the couch, unable to move. He feared he had cancer.
Some days software engineer Astrid van Vrouwerf-Boers, 30, of Leerdam, Netherlands, became so constipated and bloated that her belly swelled up like a nine-month pregnancy, her abdomen rock hard. Three or four days could go by when she couldn’t evacuate her bowels. She would break out in a cold sweat, feel nauseated and have a sudden violent urge to go, needing to find a toilet. Tests, including a colonoscopy, found nothing wrong.
"It affects at least ten percent of the population in Europe—close to 75 million people"
This mystery disease was Irritable Bowel Syndrome (IBS). It’s estimated that it affects at least ten percent of the population in Europe—close to 75 million people. Abdominal bloating, pain, diarrhoea and/or constipation are the defining features. But flatulence, cramping, heartburn, exhaustion, sweating, nausea, vomiting, shivering, sudden incontinence can play a part too.
While it can feel like you’re dying, currently diagnostic tests can’t find anything wrong. Diagnosis is based on the presence of key symptoms, the patient’s medical history and a process of eliminating other diseases, say experts. But after years of being a neglected field of scientific study, IBS research is now burgeoning.
Fortunately, the majority of people with IBS these days will eventually find ways to manage or reduce their symptoms—but those ways may be unique to each person.
If you or a loved one has IBS, here are eight facts that may help you understand your IBS better and get the symptoms under control:
1. Rule out other diseases
A few serious medical conditions can have symptoms similar to IBS: coeliac disease, inflammatory bowel disease and certain types of cancer. While much rarer than IBS, these conditions should be ruled out before settling on the IBS diagnosis, doctors say.
“Coeliac disease is still being under-diagnosed,” says Dr Niek de Wit, a physician from Utrecht University, Holland, who helps family doctors improve their approach to the management of IBS. All European guidelines for IBS recommend that everyone with IBS symptoms get a blood test for coeliac disease, which is an intolerance to gluten in wheat.
A new test for markers of intestinal inflammation, known as a fecal calprotectin test, is now being used by most gastroenterologists to rule out Crohn’s disease and ulcerative colitis. Soon the test will be used by most family doctors, says Dr de Wit.
Colon, stomach, and ovarian cancer, particularly in older patients with a sudden onset of symptoms, should also be investigated, points out Dr Jutta Keller of Israelitic Hospital in Hamburg. “For the vast majority of patients, you can remove cancer fear if you do a proper investigation,” says Dr Keller, one of the authors of Germany’s IBS guidelines.
2. Not just one type of IBS
Patients generally fall equally into one of three types of IBS: diarrhoea (IBS-D), constipation (IBS-C) and alternating (IBS-A.) But those three types may all have different causes unique to the individual.
“Each patient may have a different problem. The gut, however, has only so many ways to complain,” says Dr John Marshall, an IBS researcher and gastroenterologist at McMaster University in Hamilton, Ontario.
Research is pointing to a variety of subtle changes that may each underlie the development of IBS, such as altered immune system, the presence of low-grade inflammation, the proliferation of nerve fibres in the intestinal wall or pre-existing genetic susceptibility, notes Dr Giovanni Barbara, a research and clinical gastroenterologist at the University of Bologna in Italy.
In the autumn of 2015, Dr Barbara and his team announced that a special protein called “zonulin” that regulates the permeability of the gut wall is higher in some people with IBS than in people without IBS. “IBS is a micro-organic disease,” says Dr Barbara. “We now have the right methods to look for those microscopic changes. I think we’ll have great discoveries in the future.”
3. Post-infectious IBS
Up to one-third of IBS may arise in the aftermath of a gastrointestinal infection or food poisoning by a virus or bacteria, called post-infectious IBS (PI-IBS). One of the world’s best-documented instances of PI-IBS occurred in Canada in 2000 when some 2,500 people were exposed to water contaminated with the bacteria e-coli and campylobacter in a town called Walkerton.
Subjects were followed for eight years by a research team, of which Dr Marshall was one of the leads. Thirty-six percent of those who got sick developed IBS. While most eventually saw their symptoms resolve, some like farmer Kevin Doyle, who was infected when he was in his late 40s, still suffer to this day. “I have to be very careful. If I have any stress it will flare again,” says Kevin.
Ongoing research has found that some factors put people at higher risk to develop PI-IBS: female sex, more severe illness, use of antibiotics during the infection, a pre-existing anxiety disorder and genetic susceptibility, says Dr Marshall. Research is looking for ways to intervene early to prevent the long-term development of IBS.
4. Explore dietary triggers
Many people with IBS feel certain foods make their IBS symptoms worse. Keeping a food journal can help make the link between what was eaten and how IBS symptoms respond. “It helps me know what I can and cannot tolerate,” says Astrid van Vrouwerf-Boers, who so far has found she must avoid whole-wheat products, tangerines, certain cabbages, and coke.
In recent years a specific diet developed in Australia, called the low FODMAP diet, has been getting a lot of attention, with some studies showing 75 percent of people with diagnosed IBS had their symptoms improve on it. FODMAP stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols.
That unwieldy name describes types of short-chain carbohydrates found in many fruits, vegetables, grains and dairy products that tend to ferment into sugars in the intestine. Full lists of the more than 100 high FODMAP foods are available on the internet or from dietitians.
5. Try the right kind of fibre
For years doctors have recommended increasing fibre, but now it’s clear it has to be the right kind. A Dutch study co-authored by Dr de Wit found that insoluble fibre, such as bran, should be avoided. The study actually found that increasing bran makes people worse, says Dr de Wit.
Dr Peter Whorwell, director of a specialised IBS clinic in Manchester, agrees. His clinic sees some 4,000 IBS patients a year, many of whom have already seen many other doctors and specialists. “First thing we do in our clinic is stop the insoluble cereal fibre, the shredded wheat, bran, digestive biscuits, brown bread and so on.”
But taking more soluble fibre, such as is found in oat bran or supplements like acacia or psyllium husk (also called ispaghula) may improve symptoms for some. For those with diarrhoea, the soluble fibre absorbs excess water. For those with constipation, it retains water, softening the stool. “A daily supplement of soluble fibre is one of the most effective places to start for IBS,” says Dr de Wit.
6. Explore the gut-brain connection
While stress and anxiety can worsen symptoms in most IBS sufferers, it’s not OK for doctors to be dismissive of IBS as merely “psychological”, says Dr Whorwell.
But while the sole psychological explanation for IBS is discredited now, research does show a powerful, complicated two-way connection exists between the gut and the brain, he notes.
Some people with IBS may have hypersensitive guts that are more reactive to stress and anxiety. Treatments such as cognitive behavioural therapy, relaxation techniques and especially hypnosis can help quell the jumpy gut. Dr Whorwell and his team pioneered “gut-directed hypnotherapy”. Research shows that individual sessions and groups sessions are both highly effective.
7. Try a probiotic
Increasingly it’s thought that some patients, particularly those with post-infectious IBS, may have a disruption in the colonies of good bacteria that inhabit the gut and help with food digestion.
“I see probiotics as gently changing the gut environment to some degree,” said Dr Whorwell, who recommends the yogurt Activia and the probiotic supplement called Align. But he also says patients can go to their local health food store and try one for a few months and if that doesn’t help, try another.
In the future, however, many IBS researchers are predicting that designer probiotics will be used to replace the missing good bacteria. “My hope is that manipulating the microbiome, replacing missing good bacteria, may lead to a significant improvement,” says Dr Marshall.
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