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Photo of a endoscopist carrying out an examination of a patientFeature
Learning about
colonoscopies

New website aims to help better prepare
patients for diagnostic and screening tests
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By Joel Schlesinger
Sept/Oct 2018

When it comes to colonoscopies, Dennis Maione calls himself a "frequent flyer."

"If it wasn't free already, I'd have earned at least one free scope," says the 53-year-old Winnipeg author, teacher and church pastor.

Maione has had a colonoscopy every year since he was in his 20s. The procedure, also known as a "scope," involves inserting a tube with a small, high-definition camera into the rectum to allow to a physician to examine the inside of patient's colon.

"I have had colorectal cancer twice, and the reason I get regular scopes is because of an underlying issue," says the married father of three adult children.

"I've got something called 'Lynch Syndrome,' which is a genetic defect that predisposes me to a variety of cancers, colorectal being the most prevalent, so people with my genetics have at least an 80 per cent chance of getting at least one colorectal cancer in their lifetime."

Maione has been scoped dozens of times, so it's safe to say he knows the ins and outs of the procedure very well. That's one reason why he's featured on a new website designed to better prepare patients for the procedure.

Called mycolonoscopy.ca, the website was launched earlier this year and aims to address two key problems associated with a colonoscopy: patients who are overly anxious about having a scope, and/or those who have not cleared their colon of all fecal matter and debris before undergoing the procedure.

Photo of Dennis Maione
Dennis Maione talks about his experience in a video on a new website for colonoscopy patients.

"The purpose is to help people be better prepared by giving them information to understand what's involved, and to have descriptions about polyps and other common results so they have some idea of the implications," says Dr. Harminder Singh, a gastroenterologist, and leader of a team that built the website.

The project is a part of a larger initiative designed to improve the experience for patients who are about to undergo a colonoscopy, says Singh, who is also Director of Research for the Winnipeg Regional Health Authority's colonoscopy program.

Other elements of the plan include efforts to help reduce wait times for colonoscopies, improve the timing for follow-up colonoscopies after the removal of polyps and colon cancer, research into different laxatives used to clean the colon, and colonoscopy quality assessment and improvement initiatives. This initiative complements the recently established central intake system for intestinal endoscopies by the Region.

In addition to enhancing the quality of care for patients, the colonoscopy initiative is also expected to reduce inefficiencies in the program, including the need to redo procedures due to lack of patient preparation, no-shows or last-minute cancellations. As such, the initiative has the potential to improve care for a lot of people, says Singh.

Colonoscopies are used to diagnose and guide treatment for a variety of conditions, including Crohn's disease and colitis. But roughly 50 per cent of the roughly 30,000 procedures performed every year in Manitoba are used to detect early signs of colorectal cancer - one of the most common forms of cancer.

The risk for colorectal cancer rises as one gets older, so many people end up getting a colonoscopy after the age of 50. But some Manitobans will undergo screening earlier in life, particularly if they have a family history of the disease.

As a diagnostic tool, colonoscopies are invaluable, Singh adds, because colorectal cancer, when detected early, is very treatable. Moreover, the disease is often asymptomatic - and otherwise undetectable - until advanced stages, when the cancer becomes much more challenging to treat.

But the efficacy of the test depends largely on how well patients prepare for it, physically and mentally. And therein lies the problem. Gastroenterologists like Singh frequently encounter patients who are stressed out about having the procedure, in part because they didn't have enough information about it. Equally troubling, many do not have a clear bowel at the time of the colonoscopy.

"There are a number of studies that have shown 10 to 30 per cent of people don't have clean bowels at the time of the colonoscopy," says Singh. "We do see in our practice that people do only part of the preparation because they can't tolerate it, or they believe they have been cleaned out enough."

That said preparing for a colonoscopy is not like a walk in the park - to which Maione can attest.

"You have to do all this stuff, and you have to do it right, because if you don't, you compromise the results and have to do it again," he says. "I've been sent home myself, and I'm thinking, 'Aw, crap, I've got to do this again now!'"

Indeed, preparing for a colonoscopy just once is challenging enough.

First, a week prior to the test, patients must alter their diet - no corn, flaxseed, nuts or similar foods that can get lodged in the bowel. Then the day before the colonoscopy, they must take laxative pills, and drink two litres of water mixed with half a bottle of a "lyte prep" (GoLYTELY, Colyte, PegLyte or Klean-Prep are the brand names) to flush out the colon. The following morning they need to drink two more litres of the same mixture. All the while, the day before and the day of the exam, patients cannot eat solid food, with the goal to have their bowel movements become clear to light yellow in colour. (Patients can drink clear liquids the day before and on the day of the exam.)

"The bowel must be clear so the physician can see into the colon," Singh says. "Otherwise it's like driving through a storm where you can have difficulty seeing and miss road hazards."

Photo of Patrick Faucher, Dr. Harminder Singh, Sofia Reisdorf, and Jesse Garber
Members of the colonoscopy team, from left: Patrick Faucher, Dr. Harminder Singh, Sofia Reisdorf, and Jesse Garber.

It is easy to see why the rules regarding preparation can be confusing, particularly for patients who may be referred directly to a colonoscopy by their family doctor.

Patients receive reading material from the booking office for the procedure as part of the letter notifying them of the date and time of their colonoscopy, Singh says.

"The information comes weeks or months before the colonoscopy," he says. "People generally read some of it, but they may lose it and then scramble to find information."

The hope is that with the website, a family doctor or specialist can refer patients to the site right away, along with print materials. While the print and online information contain much of the same content, the website is much more comprehensive, with PDF versions of the material in other languages (and even a French version of the site: Macoloscopie.ca). As well, it includes videos on the procedure and patient testimonials that include Maione and a number of other people.

It's these sources of information that psychologist Dr. John Walker says can have the most powerful impact on patients preparing for a colonoscopy for the first time.

"One of the beauties of websites is the ability to have video content," says Walker, who helped develop the www.mycolonoscopy.ca, and is a professor in Department of Clinical Health Psychology at the Max Rady College of Medicine at the University of Manitoba's Rady Faculty of Health Sciences.

"As a psychologist, I find when people see something on video, it can have a tremendous effect in lowering anxiety."

Singh adds that while the Internet has plenty of YouTube videos in which people describe their experiences with colonoscopies, www.mycolonoscopy.ca's videos are vetted for accuracy so patients do not receive misleading information.

The website's guide is based on extensive research. It provides detailed, easy-to-understand information on the procedure, polyps (which are small growths in the colon considered to be a precursor to colon cancer), and colorectal cancer itself.

"This isn't something I just thought about and then jotted down," Singh says. "We started off with asking patients what they needed to help them better prepare and understand the procedure."

For this reason alone, Walker says the initiative is at the leading edge of gastrointestinal medical care.

"There's a philosophy behind this, which is increasingly central to good health-care initiatives, and that's patient-centred care ensuring patients are involved in the process."

Screenshot of the mycolonoscopy website
The public can access information about colonoscopies at www.mycolonoscopy.ca.

Typically, health-care professionals create educational medical material. "So while there's good information, many people may find they have questions that still aren't answered," Walker says.

"What we've done here is to go to patients to find out what they want to know and where it is they get stuck with information that is hard to locate."

Amid some of the information found on the site are descriptions of the various polyps that can be found and how they are evaluated regarding cancer risk.

"It also provides some details about the odds of something coming up," Walker says. "For example, you go for a test and you may think you have a 20 per cent or five per cent chance of a cancer diagnosis, but it's actually much lower than that."

About one in 15 Canadians (seven per cent) will be diagnosed with colorectal cancer in his or her lifetime. But colon cancer is detected in only two to six out of every 1,000 people older than 50 having a colonoscopy, Singh says.

Despite the low odds, the test still creates tremendous anxiety among patients.

"We asked people about it, and they talked about a variety of anxieties," he says. "They have anxieties about getting ready, and about the procedure itself because it's in a sensitive area - they're worried about discomfort."

And of course, they fear what the results might be.

Even for a hardened veteran of colonoscopies, a soft spot is exposed every time Maione faces his annual scope.

"I've come to a 'normal' regarding anxiety."

He adds that many people with Lynch Syndrome struggle with fear annually because the colonoscopy reminds them they may have cancer.

"It's when I remember my condition because it's right in my face: 'Here's why you do this.'"

Photo of Brennan Kaita, Dr. Dana Moffatt, Dr. John Walker, and Steven Rosenberg
Members of the colonoscopy team, from left: Brennan Kaita, Dr. Dana Moffatt, Dr. John Walker, and Steven Rosenberg.

Of course, Maione does not need to use the website. But he says the information on it will be extremely valuable to those who are having a colonoscopy for the first time.

Take, for example, the recommendation to only drink clear liquids the day before the test.

"Does it mean it can't have colour, or does it just mean that it just has to be transparent?"

Quite often patients think "transparent" means water only. Even Maione thought that initially.

"When I found out that Popsicles are a clear fluid, 'Ho-ho, I'm in,' I thought, and then I found Jell-O," he says. "Did you know that you can drink it hot? It's the best ever."

These are just some of the "tricks and tips" you can pick up from the testimonials, and from the website in general, he adds.

Patients can also find out other things about colonoscopies - like how long a procedure takes to complete and how soon results will be available. Indeed, a colonoscopy can be a time-consuming process. While the procedure itself often takes no longer than 30 to 40 minutes, the entire visit may take four hours because patients need time to recover from the sedative and pain medications.

"Make sure someone is there to pick you up," Maione says. "That's a hard and fast rule. You can't even walk home. I tried that once."

Although mycolonoscopy.ca provides patients with a wealth of information, Walker says the peer testimonials, particularly those done with humour like Maione's, are perhaps the most powerful.

"A person will watch and that person tends to feel much more assured."

And that sense of assurance leads to better experiences and results, Singh says.

"There is scientific literature that the more information provided to people, the lower their anxiety will be," he says. "Because if they're more anxious about the procedure, it's a vicious cycle - they are more likely to experience pain and discomfort."

Walker likens it to people who are scared of needles. Their sense of pain from a blood draw is heightened by fear. "It's very similar."

Although a colonoscopy is by no means a fun way to take a couple of days off work, which Maione recommends people do, it's entirely bearable as long as people are armed with the right information.

"I agreed to help because there is so much anxiety surrounding it, and being able to hear from someone who has had 20 colonoscopies say, 'It's not that bad,' might help," he says. "Besides, as anxiety-filled as it might be, there's a good reason for doing it."

Maione says he likely would not be around today without undergoing colonoscopies, as the test caught colorectal cancer twice - once in his 20s and then in his early 40s.

"One of the reasons why they're suggesting colonoscopies starting at age 50 and for younger people who are high risk is because this is the best way to determine whether or not you've got it," he says. "If they can catch it early, and take it out, there's a high cure rate, and you're back at work in a couple of weeks after major surgery."

Bottom line: The inconvenience and discomfort are worth it, Maione says.

"That's why I'm such a big advocate, saying to people, 'You know what? Just bite the bullet and get it done.'"

Joel Schlesinger is a Winnipeg writer.