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Lauren's physician booked her an appointment with a gastroenterologist, but the ordeal was far from over. "My symptoms weren't improving, and it took six weeks to get an appointment," she says. "I didn't know what was happening with my body." A colonoscopy eventually revealed she was suffering from inflammatory bowel disease (IBD).
According to the Canadian Digestive Health Foundation, every year, more than 20 million Canadians struggle with digestive disorders, including lactose intolerance, celiac disease and gastroesophageal reflux disease. Even more complex, IBD affects 233,000 of those people—including Lauren. More and more Canadians are being diagnosed with the disease every year. In fact, we have one of the highest occurrences of IBD worldwide: One in every 150 Canadians suffers with the condition.
Irritable bowel syndrome (IBS), often confused with IBD, afflicts five million Canadians—one of the highest incidences on the planet. IBS is a combination of chronic digestive issues involving motility (how intestinal muscles move contents through the bowel) and sensitivity (how the brain interprets sensations within the bowel), which results in symptoms such as abdominal discomfort, bloating, diarrhea and constipation.
If digestive issues are interfering with your daily routine, your gut might be trying to tell you something.
What is inflammatory bowel disease?
IBD encompasses two chronic inflammatory disorders of the gut: ulcerative colitis and Crohn's disease. Ulcerative colitis is characterized by inflammation and superficial ulceration in the large intestine, usually the rectum and sometimes extending to the colon. Sufferers are plagued by severe or bloody diarrhea, abdominal pain, fatigue, nausea, vomiting, weight loss, fever, anemia and decreased appetite. Symptoms can be active for weeks or months, then disappear. These symptomfree spells, or remissions, often instil patients with a false hope that the disease has run its course, but ulcerative colitis is chronic and will flare up again.
Crohn's disease has many of the same symptoms but is a different beast. "Crohn's disease can cause inflammation in any part of the gastrointestinal (GI) tract, from your gum to your bum," says Dr. Gil Kaplan, gastroenterologist and associate professor of medicine at the University of Calgary. "You can get it in your mouth, esophagus, stomach, small bowel or colon."
For Lauren, Crohn's affects only her colon, but over time, it could begin to attack other parts of her digestive system. Crohn's can affect several areas simultaneously, and no two patients share the same experience. Like colitis, Crohn's is chronic, so symptoms are either active or in remission.
How can IBD impact your health?
Though the life expectancy of IBD patients is roughly the same as that of the general population (or two to three years shorter in the case of Crohn's patients), sufferers may face serious complications. Inflammation can cause primary sclerosing cholangitis (scarring of the liver's bile ducts), leading to fatigue, itchy skin and, eventually, liver disease. When the small bowel is involved, poor absorption can lead to nutritional deficiencies. Inflammation can also travel beyond the gut, assaulting the eyes, skin and joints, where crippling arthritis can take hold.
Meanwhile, women can sometimes experience impaired fertility. "Some surgical procedures for IBD in the pelvis can cause scarring and postoperative changes around the fallopian tubes and ovaries," says Dr. Zane Cohen, director of the Zane Cohen Centre for Digestive Diseases at Mount Sinai Hospital and colorectal surgeon and professor of surgery at the University of Toronto. IBD can also precipitate a more problematic condition: "Both Crohn's and colitis are diseases with chronic inflammation that may put long-standing patients with extensive colon involvement at greater risk for developing colon cancer," says Dr. Cohen.
How do you develop IBD?
Crohn's disease and colitis can manifest at any age, but IBD hits adolescents and young adults most often. Both sexes are affected equally, as are most ethnic groups; however, an increased risk has been found in those of Ashkenazi Jewish descent.
Though the cause of IBD is still unknown, current research is focusing on a possible connection between genetics and the immune system's response to environmental triggers. "It's not a purely genetic disease, but there are strong genetic influences," says Dr. Ken Croitoru, gastroenterologist at the Zane Cohen Centre for Digestive Diseases at Mount Sinai Hospital and professor of medicine and immunology at the University of Toronto. "The current belief is that the immune system responds to something in the environment and causes severe inflammation and damage of the GI tract lining."
Environmental triggers could be anything: something in the air or water; exposure to certain infections; or changes in normal gut bacteria due to antibiotic use. Many patients believe diet is a trigger, but Dr. Croitoru says, "We haven't been able to identify a diet trigger that will either lead to the risk of developing IBD or make it worse."
How is irritable bowel syndrome different?
IBS is often mistaken for IBD, but they are separate and distinct ailments. Unlike IBD, IBS symptoms aren't fuelled by inflammation. "The sensory nerves of the gut get irritated or slightly altered and start sending more signals to the brain, resulting in abdominal pain and bowel habit changes," says Dr. Christopher Andrews, gastroenterologist at the University of Calgary. The bowel might work too fast or too slow, leading to nonbloody diarrhea or constipation and sometimes alternating between the two.
In Canada, IBS hits young adults most often and is more common in women. "We don't usually see an obvious cause," says Dr. Andrews. "People can get IBS after a gut infection or surgery that inflames the gut's nerves." And while depression, anxiety and mood disorders don't cause IBS, these stressors can worsen the condition, as can an unhealthy diet and lack of sleep.
IBS is highly unpredictable. Symptoms can be active and then disappear for months. For some fortunate individuals, IBS will vanish completely. For others, even though it's not life-threatening and doesn't increase the risk of colon cancer, the misery of IBS controls their lives, causing absences from school or work.
What treatment options are available?
Unfortunately, there's no cure for IBD; there isn't a one-size-fits-all treatment, and no treatments are 100 percent effective. Changes to one's diet can help alleviate symptoms, and patients must also rely on medications and surgery for symptom management. "The goal is to provide control of inflammation using medicines whose benefits outweigh the risks," says Dr. Croitoru. Drugs such as anti-inflammatories (5-ASA), antibiotics and steroids (prednisone) can be used, but they're not always effective and they can have significant side-effects. Prednisone, for example, can reduce inflammation but is not a long-term solution due to potential complications such as diabetes, high blood pressure and, as in Lauren's case, muscular myopathy. "Steroids broke down the muscle mass in my upper legs, so I couldn't use stairs or stand for long periods. I could still walk, but I was unsteady and had to hold onto something at all times." Once Lauren weaned herself off prednisone, her muscle strength returned, but not all patients are as lucky.
A new generation of drugs, immunosuppressants, offers effective treatment with fewer risks. Better tolerated long term than steroids, immunosuppressants such as Humira and Remicade bind and neutralize a protein called tumour necrosis factor (TNF), which is produced by the immune system. Excess TNF levels, found in those with Crohn's disease, cause the immune system to attack healthy cells, resulting in inflammation. Immunosuppressive drugs may be effective at counteracting this process, but suppressed immune function makes it more difficult for patients to fight infections.
Surgery is another important piece of the treatment puzzle. "If a Crohn's patient has an obstruction, surgery might happen before medications," says Dr. Robert Enns, clinical associate professor of medicine at the University of British Columbia and divison head for gastroenterology at St. Paul's Hospital in Vancouver.
Managing IBS is easier. "Treatment is focused on improving the patient's symptoms," says Dr. Andrews. "Sometimes, this requires dietary changes or medications." It's also important for patients to understand and even take comfort in their diagnosis. "Once patients know that this is a real disorder and it's not in their heads, they are often reassured and the worry about the symptoms improves," says Dr. Andrews.
Where do we go from here?
There are several new treatment options on the horizon. Health Canada is reviewing vedolizumab, an antibody that suppresses only the bowel's immune response and leaves the rest of the immune system unaffected, thus minimizing the potential for adverse effects.
McMaster University in Hamilton is conducting the first randomized controlled trial for ulcerative colitis and fecal transplants, an innovative therapy that takes liquidized stool from a donor and "transplants" it via enema into the bowel of a colitis patient; the aim is to restore a stable community of good bacteria. While fecal transplants might sound gross, they're about 90 to 95 percent effective in trials treating recurrent C. difficile infections, which can cause diarrhea and bowel inflammation. Mount Sinai Hospital researchers are hoping to create a future in which IBD isn't just managed but cured. "The challenge is identifying what happens early on and learning how to prevent the disease in someone at risk," says Dr. Croitoru, who is leading an international study called the genetics, environmental, microbial (GEM) project. Focusing on Crohn's disease, Dr. Croitoru and his associates are researching why some genetically at-risk people develop the disease while their siblings do not. By delving into how genetics, environment and the microbial makeup of a person's digestive system interact, researchers hope to uncover the cause or trigger of Crohn's disease—information that may well lead to a cure.
Meanwhile, Lauren has continued to struggle throughout the last four years. "Without a cure, it's easy to fear this disease," she says. "I'm hyperaware if my tummy rumbles too many times or if I suddenly stop having regular bowel movements. It's always in the back of my head: What if something triggers my symptoms to be active? I'm in remission— that's the good news. But the bad news is that it's like a ticking time bomb. It feels like the other shoe is going to drop at any moment. The side-effects of the immunosuppressive drugs might lead to even bigger problems. I'm good right now, but at what cost?"
*Name has been changed
Keep your gut healthy with these 6 easy ways.
|This story was originally part of "Trust Your Gut" in the March 2015 issue.|
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