An understudied and underfunded disorder that adversely affects the lives of millions of Canadians is finally getting some recognition in the form of a major study that will include researchers at Kingston General Hospital.

In the largest study of gastrointestinal disease in Canadian history, $12.5 million in funding from Canadian Institutes of Health Research will allow 88 researchers at 17 centres across Canada to investigate irritable bowel syndrome (IBS) and inflammatory bowel disease (IBD) in 8,000 patients. In part, they will investigate the relationship between diet and bacteria in the stomach.

Dr. Stephen Vanner, a clinician scientist at KGH and a professor at Queen’s University, will be co-leading the IBS portion of the study.

"This will be the largest [study], I think, in North America and probably worldwide," he said.

"Irritable bowel syndrome is an extremely common disorder. It probably affects somewhere in the range of 10 per cent of adults in Canada."

It is characterized by abdominal pain and altered bowel patterns, such as constipation or diarrhea.

"It is extremely uncomfortable."

The patient may complain of intermittent abdominal pain "that can be very devastating," or might have cramps and have to get to a washroom quickly, or may have bowels that won’t move for days at a time.

"One of the challenges for patients and for doctors is that, when we do all the tests, they are normal," he explained.

A colonoscopy can look at the lining of the bowel and report nothing abnormal. A biopsy sample can be sent to a pathologist and have the same result.

"When we do specialized testing on those biopsies here in the lab, we can show there are low levels of inflammation … that can lead to this pain," Vanner said.

The cause for IBS is still not clear. It can start when the patient is a child but can afflict them at any time and can last their lifetime. There can be triggers for certain individuals that can exacerbate the condition, such as stress, diet, or even the act of eating itself.

Vanner has seen patients who have gone on vacation down in the Caribbean and got traveller’s diarrhea.

"By the time they come back and you take the stool samples, they are negative, but they are left with IBS."

He said a dramatic example was the town of Walkerton, where an E. coli outbreak in 2000 contaminated the water supply. Seven people died and thousands more became sick.

"What a lot of people don’t know is that up to 30 per cent of the people in that small town suffer from IBS," Vanner said. "It was triggered by that infection."

The bacteria in their gut was affected by the pathogen, which "reset" the bacteria and introduced a low level of inflammation, he explained.

As well as the personal impact for patients, it also has a major impact on society.

Vanner estimates IBS costs the Canadian health-care system more than $1 billion annually.

"The impact of this on patients and on the health-care system is huge. Conditions like IBS, next to the common cold, are the main reason why people are absent from the workplace and miss school. These are significant symptoms."

Yet it doesn’t gain the headlines of cancer or heart disease.

"It is a much understudied disorder that affects a large number of people," Vanner said.

It has been undernoticed in part because people often don’t talk about their symptoms, unlike, for example, having chest pain, he said.

"It doesn’t have the same social acceptability to talk about your bowel habits."

Vanner said IBS is not a new disease. You can look back and see descriptions of it dating back to the late 1800s.

"We have known about it for a long time. It has become more visible in society."

It has "absolutely" been a problem until now getting the resources needed to study IBS, he said, a situation that is ironic considering the large number of people affected.

Other studies have been done on IBS but they have been on too small a scale.

"Although smaller studies are very informative, they don’t have the same power as a larger study, particularly in a disorder like this," Vanner said.

A small group of patients means there are too many variables in play and it can be hard to get a definitive answer to your questions.

In Kingston in this new study, five teams of researchers hope to recruit between 300 and 400 patients with IBS.

Other teams in other cities will be looking at inflammatory bowel disease.

The studies will also investigate how the patient’s mental health is affected through depression or anxiety.

Vanner and Dr. David Reed will be among those leading the initiative locally, working with a team of more than 20 people, including research associates, physician-trainees and graduate students.

"We are all set and ready to go. We have got the necessary people with the expertise."

Vanner is also co-leading the IBS research across the country with a colleague at McMaster University.

It will be a five-year project.

"We believe within that five-year time frame that we can refine treatments for patients," Vanner explained. "We hope to identify markers of which patients might benefit from which treatment."

Right now, it is not always easy to know who might benefit from a diet intervention versus a probiotic intervention.

Current treatments target the specific symptoms the patient has, such as pain, diarrhea or constipation.

They are still figuring out how the study will be constructed, but they are now accepting the names of people interested in enrolling.

"I would anticipate by the fall we will start enrolling patients," Vanner said.

Anyone interested can contact them now by email simmersc3@hdh.kari.net.

Although the target number of patients is 300 to 400, "obviously if we could recruit more we would be pleased to."

They will try to minimize the time commitment for participating patients, but there will still be a specific time requirement.

"To elevate the research to the next level, we need to understand the characteristics of each patient," Vanner explained.

That might involve filling out questionnaires or bringing in samples of blood, urine and stool.

It is important to recognize this will be an ongoing study, Vanner said.

They will want to know if the patient’s condition changed in the weeks or months to come.

"That is going to be one of the real values of this."

Some of the patients may be asked to participate in more detailed investigations.

He expects IBS patients will be more than willing to help.

"As a group, I think partly driven by a frustration of a lack of understanding, patients with IBS generally have shown to us they are very interested to participate in studies because, for obvious reasons, they would like to get a better understanding of what’s going on," Vanner said.

mlea@postmedia.com