Inflammatory bowel disease a malady with a stigma
May 19 is being acknowledged as globally as World IBD Day.
But IBD - inflammatory bowel disease - is nothing to celebrate. An umbrella term for Crohn’s Disease and colitis, IBD impacts about 25,000 residents in Alberta, including roughly one per cent of Lethbridge’s population, says Dr. Jesse Siffledeen, an Edmonton based gastroenterologist and IBD specialist.
He’s also the lead author of the IBD-PODCAST Canada Trial publication.
Canada was one about 10 countries involved in a study that looked into the quality of life of more than 2,100 IBD patients. Lethbridge was one of the trial sites for the study with about 10 per cent of study participants being from this city.
“It was about how well we were meeting the objectives of our treatments, said Siffledeen in a phone interview from Edmonton on Monday.
“Our treatments to make patients feel better, have life be better but also long-term, return to a normal quality of life,” he said.
Guidelines that came out in 2020 were developed to help physicians objectify treatment targets.
“It’s not enough to say ‘a patient’s feeling better.’ We have these new treatments that we want to employ,” he said.
Doctors want to be able to tell patients a treatment is not only making their bowels better but also has alleviated symptoms so that person can go to work without the fear of not having a bathroom or go out with friends without fatigue or fear of pain or their bowels causing trouble.
“Those guidelines were developed and to date there wasn’t a study that looked specifically how well we were meeting the objective treatment targets in our patients,” he said.
Despite advances in therapies, the findings show that about half of Canadians being treated for
IBD “are living with sub-optimally controlled disease.”
IBD is a health matter that comes with a stigma for those living with it who find themselves unable to confide in others about the problems they have dealing with the disease such as the fear of not having ready access to a bathroom when needed.
“We want to bring it out of the darkness and into the light,” said Siffledeen.
No known cures exist for IBD and there is no evidence diet plays a part in the onslaught of the disease, said Siffledeen, diet being the No. 1 question patients ask.
“Patients should not be feeling like they did something wrong to bring this on,” says the doctor, noting mental health supports are important for IBD sufferers.
“There is no specific diet that causes Crohn’s or colitis to come about. A sample of patients in the study showed that even though a physician or patient thought they were doing OK, for up to 80 per cent of the time, patients scored poorly on quality of life measures,” said Siffledeen.
“That tells us patients may be putting up with symptoms because they have to” go on with their daily affairs and perhaps physicians aren’t asking the right questions when talking to them.
Managing stress can help relieve symptoms, said Siffledeen who recommends Crohn’s patients quit smoking if they use tobacco products. Smoking has been associated with worse Crohn’s symptoms but it has also been associated with better outcomes for colitis patients. Either way, people shouldn’t smoke, he said, quitting which will give Crohn’s patients a better trajectory for their disease.
“There’s probably one out of a hundred people in Alberta who have ulcerative colitis or Crohn’s Disease,” said Siffledeen.
“These are chronic autoimmune conditions that patients live with for their whole life. And the nature of these conditions is they can flare up any time, or multiple times, throughout a person’s life and have significant impacts on their health and their quality of life,” he added.
Authors wanted to get a good representation across Canada of IBD patients, which is one reason why Lethbridge was chosen.
And they also wanted to a fair representation of patients being managed by physicians outside of a university hospital setting, he said.
Getting proper care for IBD in a smaller centre “has long been thought” to be harder, he said, than in larger centres where there may be more IBD patients and more resources to provide care.
And historically, when clinical trials are considered for new treatment options, those have been run out of universities, a situation which has changed over the past to five to 10 years, he noted.
The doctor said in Canada and North America in general, people don’t really like to talk about their bowel health so there is a bit of a stigma.
So patients don’t have many people to turn to explain what they’re enduring “and that leads to the anxiety, the trauma of having a chronic disease like Crohn’s or colitis. Just like people suffer with PTSD for example, when they’re dealing with a very stressful situation,” Crohn’s and colitis have a form of anxiety and depression that comes with knowing the disease will be with patients for life.
“Right across the board with any health condition, we’re struggling to be able to provide mental health supports for our patients,” added Siffledeen.
Treatments have improved substantially “to the point of affecting real measures like hospital admissions, the need for surgeries so in the last 20 years, the introductions of what we call biologic therapy - which are therapies that are targeted to certain parts of the immune system to make that part of the immune system overactive come back down to normal, and certainly they don’t work for everybody but they have made a very big difference for many people.”
A problem is biologics have the potential to stop working or they don’t work at the beginning so another treatment is required which is where clinical trials have come about, he said, with new medications over the past 20 year being very helpful.
“We’re by no means out of the woods but at least we now can offer patients more than one treatment” to get their disease under control, the doctor added.
The immune system is very complex and “really hard to find a one treatment fits all for patients that will get them into remission….we haven’t found a way to switch off the immune system from being over-active.”