In the fall of 2014, U.K. 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 35 lbs in six months, 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 washroom right away. Tests, including a colonoscopy, found nothing wrong.
For Charmaine Bleakley, 63, of Gloucester, U.K., it started in her mid 40s. She had two teenagers at home and a full-time job as an archivist. Suddenly she would be wracked with a churning gut, needing a toilet immediately, full of fear that she wouldn’t make it in time—and sometimes she didn’t. Once on the loo, she could sit for an hour as waves of diarrhea left her exhausted. She learned to carry in her handbag extra knickers and a can of air freshener. A gastroenterologist tested for cancer and inflammatory bowel disease but found neither.
In all three cases this mystery disease was none other than Irritable Bowel Syndrome (IBS). It is estimated that it impacts at least ten percent of Europe’s population—more than a million people. Recurrent abdominal bloating, pain, diarrhea and/or constipation are the key defining features. But excessive flatulence, cramping, heartburn, nausea, vomiting, exhaustion, sweating, shivering, sudden incontinence can be part of the picture, too.
While it can feel like you are 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.
After years of being a neglected field of scientific study, however, IBS research is now burgeoning. This is leading to greater understanding and more concrete help for its legions of sufferers, notes Professor Magnus Simrén, a gastroenterologist and researcher at the University of Gothenburg, Sweden.
“Research is very important because IBS takes a huge toll on both the patient and on society as a whole,” said Professor Simrén, who is Chair of the United European Gastroenterology Scientific Committee. In fact, studies show that more than one in ten visits to family doctors and at least one in four to gastroenterologists are for IBS symptoms. And IBS is second only to colds for missed days at work.
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:
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1. Rule out other diseases
A few serious medical conditions can have symptoms similar to IBS: celiac disease, inflammatory bowel disease and certain types of cancer. While all are much rarer than IBS, these conditions should be ruled out before settling on the IBS diagnosis, doctors say.
“Celiac disease is still being under-diagnosed,” says Dr. Niek de Wit, a Dutch physician from Utrecht University 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 celiac disease, which is an intolerance to gluten in wheat.
A new test for markers of intestinal inflammation, called a fecal calprotectin test, is now being used by most gastroenterologists to rule out Crohn’s disease and ulcerative colitis. Soon the test also 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, notes Dr. Jutta Keller of Israelitic Hospital in Hamburg, Germany. “For the vast majority of patients, if you do a proper investigation you can remove cancer fear, with great relief to them,” said Dr. Keller, who is one of the authors of Germany’s IBS guidelines.
2. Not just one type of IBS
Patients generally fall equally into one of the three types of IBS: diarrhea (IBS-D), constipation (IBS-C) and alternating (IBS-A.) But those three types may all have different causes that are 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, a leading IBS researcher and gastroenterologist at McMaster University in Hamilton, Ontario. (Find out which foods make IBS worse.)
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 fibers 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.
Dr. Barbara and his team announced in the autumn of 2015 that a special protein called “zonulin” which 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 will have great discoveries in the future.”
3. Post-Infectious IBS
Up to one third of IBS may arise in the aftermath of a gastro-intestinal 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 per cent 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.
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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 wholewheat 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 per cent of people with diagnosed IBS had their symptoms improve on it. FODMAP is an acronym 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. Since the diet is very limiting, it is recommended that after six to eight weeks on a low FODMAP diet you slowly add foods back to see which ones you can tolerate.
When Martin Burridge learned about the diet, he immediately cut out all foods high in FODMAPs and his symptoms disappeared rapidly. Then he began slowly to add foods back in. He has learned he can eat “Ds” (dairy) and “Ps” (mushrooms, a favourite of his) but must avoid all “Ms” and most “Os,” especially wheat.
“An apple will cause me problems within 20 minutes; with wheat the symptoms show up the next day,” says Martin, whose life is pretty much back to normal. He now writes “Bertie’s Bowel Blog” to share what he has learned with others.
Professor Simrén recently led a randomized control study in Sweden comparing the low FODMAP diet to the more traditional IBS diet recommended for years by gastroenterologists, which stresses small meals, regular food intake and avoidance of coffee, greasy food and gas-producing vegetables like cabbage and beans. “Our study found both diets worked for patients. In future we should probably combine elements from these two diets for even greater effect.”
Recently the growing popularity of the low carb/high fat diet (LCHF or ketogenic diet), especially in Sweden where some 20 percent of the population is on it for weight loss and diabetes management, has had an unexpected result: many say their IBS symptoms have greatly improved on it. Professor Simrén expects to start a study on a variant of LCHF and IBS within the next year.
5. Try the right kind of fiber
For years doctors have recommended increasing fibre, but now it is clear it has to be the right kind. A Dutch study co-authored by Dr. de Wit found that insoluble fibre, such as that found in bran, should be avoided. The study actually found that increasing bran makes people worse, says Dr de Wit.
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Dr. Peter Whorwell, director of a specialized IBS clinic in Manchester, U.K., 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.”
However, 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 diarrhea, 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.
Twice a day Charmaine Bleakley now takes a soluble fibre supplement called Heather’s Tummy Fiber, made from acacia and available from helpforibs.com. “It really works for me.”
6. Explore the gut-brain connection
While stress and anxiety can worsen symptoms in most IBS sufferers, it is not okay for doctors to be dismissive of IBS as merely “psychological,” says Dr. Whorwell.
But while the sole psychological explanation for IBS is now discredited, 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.
“Hypnotherapy is fantastic. I wish I’d learned about it earlier,” says Charmaine Bleakley, who for the last few years has listened to hypnotherapy CDs specifically for IBS before bed, especially when her stress is high. Such CDs are available from Amazon.com and other sites.
Dr. Whorwell also recommends for some patients with IBS very small doses of the so-called tricyclic antidepressants, which work on receptors both in the brain and the gut. The drugs, such as nortriptyline, amitriptyline (Elavil) and desipramine (Norpramin) are effective at one-tenth the dose typically used for depression. Doctor Whorell often uses them when patients have not done well on other approaches because they seem to help reduce pain and other symptoms.
7. Try a probiotic
Increasingly it is thought that some patients, particularly those with post-infectious IBS, may have a disruption in the colonies of good bacteria that normally 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. (Another idea: Nosh on these probiotic-filled foods.)
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 of symptoms,” says Dr Marshall.
8. Seek information and support
Patients with IBS can feel very alone. Talking about our bowel problems in public is still taboo. Online, however, IBS communities in many languages are proliferating. The site ibsgroup.org has a worldwide registry of dietitians who can help with the low FODMAP diet or other dietary modifications. The US site helpforibs.com has information, research links and products including hypnotherapy CDs, soluble fiber supplements and more. The UK site theIBsnetwork.org is the largest charitable site for IBS and works to provide support and advice for individuals.
“I always put education at the top of my list,” says Dr. Whorwell. “Patients have to understand their condition if they’re going to be able to manage it.”