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Digestive Health
Living with IBD: An Invisible Illness
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Inflammation
Can occur anywhere in the GI tract (from gum to bum) Most often affects the portion of the small intestine before the large intestine/colon Damaged areas appear in patches
Pain
Crohn’s Disease
Pain is variable, depending on where inflammation is present in the gut Pain is typically localized to the lower right side of the abdomen
Symptoms Within the GI Tract
nflammatory bowel disease (IBD) represents a group of intestinal disorders that cause inflammation (redness and swelling) and ulceration (sores) of the small and large intestines. The two most common disorders are called Crohn’s disease and ulcerative colitis. Kelsey Cheyne These disorders are sometimes Executive called invisible illnesses because their Director, symptoms are difficult for others to see. Canadian Awareness is the first step to underDigestive Health Foundation standing, and so we’ve outlined what it’s like for someone to live with IBD. It’s important to note that Crohn’s disease and ulcerative colitis can affect each person differently. Pictured to the right are the Symptoms most common signs and can interfere symptoms of Crohn’s disease and ulcerative colitis. with work, The symptoms listed school, can be painful, embarrelationships, rassing, and debilitating. travel, and Symptoms can interphysical and fere with work, school, emotional relationships, travel, and physical and emotional well-being. well-being. They can severely impact a person’s quality of life, causing stress, anxiety, and depression.
Symptoms Outside the GI Tract
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Kelsey Cheyne
Sores in the mouth or the anus occur more often in people with Crohn’s disease Perianal disease is more common in people with Crohn’s disease Multiple bowel movements a day
Ulcerative Colitis Occurs in the large intestine/colon Damaged areas are continuous (not patchy)
Pain is typically localized to the left area of the abdomen
Multiple bowel movements a day False urges to go to the bathroom (the sense of urgency is due to inflammation of the rectum) Loose stool that contains blood, pus, and mucus
Abdominal pain and cramping | Severe diarrhea | Weight loss Diminished appetite | Fatigue | Rectal bleeding
Eyes (redness, pain, and itchiness) | Mouth (sores) | Joints (swelling and pain) Skin (tender bumps, painful ulcerations, and other sores/rashes) Bones (osteoporosis) | Kidney (stones) Liver (primary sclerosing cholangitis, hepatitis, and cirrhosis) — occurs rarely
Help support those with IBD by educating yourself and others. Head to cdhf.ca to learn more and share our resources.
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Web Editor: Karthik Talwar All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve The Toronto Star or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.
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Dr. Neeraj Narula Associate Professor of Medicine, McMaster University & Director of the IBD Clinic and Staff Gastroenterologist, Hamilton Health Sciences
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Living Well with Ulcerative Colitis Despite the challenges of living with ulcerative colitis, long-term disease management strategies can help patients thrive Tania Amardeil and Abigail Cukier
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hen Rasheed Clarke crossed the half marathon finish line at the 2017 Mississauga Marathon, the moment was especially sweet. A decade earlier, he had been training for a half marathon that he never got to run. In 2007, Rasheed, by all accounts a healthy 23-year-old man, began experiencing symptoms including diarrhea and blood in his stool. He also suddenly needed to go to the bathroom more than 30 times a day. Despite his initial alarm, and disappointing search for answers, his symptoms gradually abated. A year later, however, his symptoms reappeared and he was diagnosed with ulcerative colitis (UC).
Rasheed Clarke
It can be disheartening at times, but you can keep trying. I’m very grateful for the research that has gone into this disease because I know that I’m the beneficiary of a lot of people’s efforts. It makes me feel very lucky.
A lifelong disease with an unknown cause
“Newly-diagnosed IBD patients are often at pivotal times in their lives,” says Dr. Narula. “It is rewarding to help these young adults understand their condition and symptoms, so they can continue to think about life goals such as getting jobs, getting married, and having families.”
According to Crohn’s and Colitis Canada, ulcerative colitis is one of two main forms of inflammatory bowel disease (IBD) — the other is Crohn’s disease. These diseases inflame the lining of the gastrointestinal (GI) tract and disrupt your body’s ability to digest food, absorb nutrition, and eliminate waste in a healthy manner. While Crohn’s disease may affect any part of the GI tract, ulcerative colitis is limited to the colon and rectum.1 Both Crohn’s and ulcerative colitis are lifelong diseases and people can experience acute periods of active symptoms (active disease or flare), and other times when their symptoms are absent (remission). The exact cause of IBD remains unknown.2 While ulcerative colitis can occur at any age, it usually begins before the age of 30. 3 It was the opportunity to work with this younger patient population, in the area of immunology (the study of the immune system4) that drew Dr. Neeraj Narula, an Associate Professor of Medicine at McMaster University and Director of the IBD Clinic and Staff Gastroenterologist at Hamilton Health Sciences, to his work as an IBD specialist.
Learning to live with IBD Dr. Narula notes that since ulcerative colitis is a chronic condition, patients will need to think about long-term disease management strategies. While maintaining an ongoing relationship with a healthcare team likely to include specialists such as a gastroenterologist (a physician specializing in disease of the GI tract and liver) is one important factor5, Dr. Narula adds that lifestyle factors can be important components of IBD care.6 “Reducing stress — or learning to manage it better through activities like meditation or yoga — and eating a healthy diet are great places to start for those looking to better manage their UC,” says Dr. Narula.7,8 In a recent study published in The BMJ, Dr. Narula and his team further explored the link between diet and IBD.9 “We found that those who have more than five servings of ultra-processed food per day had almost twice the risk of developing IBD as compared to those who had less than one serving per day,”10 he says.
Advanced treatment options For some patients, however, lifestyle and dietary factors aren’t enough to manage their IBD. In 2014, after many attempts to manage his condition, Rasheed had J-pouch surgery. In this procedure, the surgeon removes the colon and rectum and creates a pouch shaped like the letter J from the end
of the small intestine, which attaches to the rectum. “It’s been life-changing. It’s been terrific to be able to get back to the life I remember, that is more or less normal,” says Rasheed, who is back to doing the things he loves, including cycling and hiking. When he completed the half marathon, he did it as part of a team called Guts to Run, which raises money for Crohn’s and Colitis Canada. Crohn’s and Colitis Canada is the only national, volunteer-based charity focused on finding the cures for Crohn’s disease and ulcerative colitis and improving the lives of children and adults affected by these diseases. And they are transforming the lives of people affected by Crohn’s and colitis through research, patient programs, advocacy, and awareness.11 Rasheed says he was grateful to be able to complete the half marathon after all he had gone through. He wants others with ulcerative colitis to know that a better life can be possible.
Through ups and downs, keep trying new things to find what works “Learning all I could about UC help put me on the path to taking more control of my life,” Rasheed says. “It can be disheartening at times, but you can keep trying. I’m very grateful for the research that has gone into this disease because I know that I’m the beneficiary of a lot of people’s efforts. It makes me feel very lucky. It will be exciting to see even more progress in terms of research, so that other people can live the best life they can.” New research and promising developments are happening regularly in the IBD field. “We’re exploring novel ways to provide a lot of promise for the future of treating IBD,” says Dr. Narula.
Living with Ulcerative Colitis. Crohn’s and Colitis Foundation. https://www.crohnscolitisfoundation.org/sites/default/files/legacy/assets/pdfs/living-with-ulcerative.pdf Crohn’s and Colitis Canada. About Crohn’s and Colitis. https://crohnsandcolitis.ca/About-Crohn-s-Colitis/What-are-Crohns-and-Colitis https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326 4 https://www.csi-sci.ca/what_is_immunology.html 5 https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/care-at-mayo-clinic/mac-20353335 6 Rozich JJ, Holmer A, Singh S. Effect of Lifestyle Factors on Outcomes in Patients With Inflammatory Bowel Diseases. Am J Gastroenterol. 2020 Jun;115(6):832-840. doi: 10.14309/ajg.0000000000000608. PMID: 32224703; PMCID: PMC7274876. https://pubmed.ncbi.nlm.nih.gov/32224703/ 7 Sun Y, Li L, Xie R, Wang B, Jiang K, Cao H. Stress Triggers Flare of Inflammatory Bowel Disease in Children and Adults. Front Pediatr. 2019;7:432. Published 2019 Oct 24. doi:10.3389/fped.2019.00432 Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6821654/ Accessed October 26, 2021. (p 1-2) 8 UMass Chan Medical School – Center for Applied Nutrition. Anti-Inflammatory Diet for IBD (IBD-AID). Available at: https://www.umassmed.edu/nutrition/ibd/ibdaid/ Accessed October 26, 2021. 9 Narula N, Wong E C L, Dehghan M, Mente A, Rangarajan S, Lanas F et al. Association of ultra-processed food intake with risk of inflammatory bowel disease: prospective cohort study BMJ 2021; 374 :n1554 doi:10.1136/bmj.n1554 Available at: https://www.bmj.com/content/374/bmj.n1554 Accessed October 26, 2021. (p 2) 10 https://pubmed.ncbi.nlm.nih.gov/34261638/ 11 https://crohnsandcolitis.ca/About-Us/Who-We-Are 1
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This article was made possible with support from Pfizer Canada.
To learn more about managing ulcerative colitis, visit pfizer.ca/ ulcerative-colitis.
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Crohn’s and Colitis Awareness Advancing understanding and support for people with inflammatory bowel disease
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n Canada, 300,000 people live with Crohn’s disease or ulcerative colitis, chronic forms of inflammatory bowel disease (IBD) with no known cure. Canada has one of the highest rates in the world — with one person diagnosed every hour. Managing IBD can be a long struggle, with many people spending years trying to find stability to control their debilitating symptoms through a variety of treatments. Losing stability can mean an IBD flare-up, the onset of crippling symptoms, hospitalization, complications, and more. Crohn’s and colitis are sometimes referred to as “invisible diseases” since they may not be obvious from a person’s appearance — and speaking about symptoms like stomach pain or bloody diarrhea can be difficult — yet the numbers are significant: one in 140 Canadians is diagnosed with IBD, and many young adults get diagnosed in their late teens or early 20s. As a teen involved in sports, Adrian Bulfon knew little about Crohn’s or colitis — there was no family history nor had the topic come to his attention. It wasn’t until severe symptoms took over his life that he was forced to take notice. Now, over a decade later, he and his family are well-versed in the subject matter. Adrian is living with ulcerative colitis, and is also a member of the London chapter of Crohn’s and Colitis
Canada, a national charity dedicated to improving the lives of Canadians affected by these chronic diseases as well as finding cures. “When I was diagnosed with ulcerative colitis in 2009, I was looking for answers,” says Adrian. “I made it my mission to find out as much as possible about these diseases. It’s why I chose my academic path with an interest in the primary care of others. It’s why I volunteer for Crohn’s and Colitis Canada.” While medications help many people cope with and manage devastating symptoms, this wasn’t the case for Adrian. He went through several years of trying different treatments, participating in two clinical trials without success. At his lowest point, he had lost over 50 pounds and there were many missed moments as he stepped away from sports and participated in university remotely. Stability for people living with IBD is hard-earned, and ensuring management and control of debilitating disease symptoms is paramount. It wasn’t until a proctocolectomy with a J-pouch that Adrian regained stability in his life. Now in his final year of university as a family medicine resident, Adrian is focused on helping care for others. With the aim of creating awareness and offering support for others, Adrian shares his story and continues to volunteer with Crohn’s and Colitis Canada.
I made it my mission to find out as much as possible about these diseases. It’s why I chose my academic path with an interest in the primary care of others. It’s why I volunteer for Crohn’s and Colitis Canada.
There are many questions and challenges when you’re affected by a chronic disease. Crohn’s and Colitis Canada offers resources, programs, and a community of support across Canada. Find out how you can get involved at crohnsandcolitis.ca.
Gutsy Walk Gutsy Walk, Crohn’s and Colitis Canada’s largest annual fundraiser, brings the IBD community together from across Canada. Gutsy Walk is a fun-filled, family-friendly, and non-competitive day to walk in support of those impacted by Crohn’s disease and ulcerative colitis. On June 5, 2022, thousands of people will walk to raise funds for research and to support everyone affected by inflammatory bowel disease. Sign up today at gutsywalk.ca.
Crohn’s and Colitis in Canada
300,000 people live with Crohn’s or colitis. By 2030, that number is expected to grow to 400,000 or 1% of the population — one of the highest prevalence rates in the world.
Every hour someone is diagnosed with Crohn’s or colitis.
These diseases impact people in different ways — a treatment that works for one person may not work for another. There is a lack of treatment options available.
The fastest-growing group of Canadians with Crohn’s or colitis are people aged 65 and over, and our health care system must be prepared to face this challenge.
Learn more at crohnsandcolitis.ca.
This article was sponsored by Crohn’s and Colitis Canada.
Adrian Bulfon
You’re not alone in your journey with Crohn’s or colitis.
We’re here for you. Every step of the way.
Learn more at crohnsandcolitis.ca
The prevalence of Crohn’s and colitis in Canadian children has risen more than 50% in the last 10 years. Children with Crohn’s or colitis have different disease complications, respond differently to treatments, and are at a greater risk of side effects from medication as compared to adults.
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It’s All About the Plants: Bye Bye Bloating Soothes Stomach Upset An all-natural digestive aid made with organic plants and nothing else eases pain and relieves gas. Abigail Cukier
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I created Well Told Health as much for myself and the people I love as for everyone else.”
Carminatives stimulate the digestive system by coordinating and regulating gut contractions. They soothe and settle the gut wall, easing pain and helping with the removal of gas from the digestive tract.
Snyder Institute Launches Bold New Research for IBD Cumming School of Medicine, University of Calgary
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or over a decade, Calgarian Grant Silbernagel, 61, has lived with Crohn’s disease (CD), the same inflammatory bowel disease both his father and adult son struggle with. Silbernagel says life with CD can be debilitating, but also calls it his “adventure.” In and out of remission many times, he’s tried several medications, including one that made his bones so weak that he suffered spinal compression fractures requiring surgery. Silbernagel hopes two newly-funded research projects at the Cumming School of Medicine’s Snyder Institute for Chronic Diseases will change his life and those of all Canadians living with inflammatory bowel disease (IBD). The University of Calgary was recently awarded philanthropic gifts from The Leona M. and Harry B. Helmsley Charitable Trust, totalling nearly $2.6 million, to support this research.
become so ill they must be admitted to the hospital or require surgery. In groundbreaking research, Dr. Lu, along with Dr. Simon Hirota, PhD, and Dr. Antoine DuFour, PhD, are working to pinpoint protein signatures — measurable signs within some of our bloodstream molecules — telling the intestinal walls of CD patients to grow scar tissue, causing them to narrow. It’s a first step to developing new precision medical treatments and preventive strategies for CD patients. “For example, using a simple blood test rather than a colonoscopy or MRI scan — both of which are not always quickly available — will help detect if a narrowing is present before end-stage changes occur, helping us recommend surgery or medication changes, and leading to better outcomes and quality of life for patients,” says Dr. Lu.
Molecular mystery
A second Snyder Institute study aims to enhance treatment and prolong remission for people living with CD. The investigation by Snyder Institute Director Dr. Derek McKay, PhD, and co-researcher Dr. Remo Panaccione, MD, will allow for
Dr. Cathy Lu, MD, and her research team are working to identify which CD patients will develop intestinal scar tissue, which causes narrowing and leads to blockages. Some CD patients
Crohn’s disease-fighting immune cells
Learn more at welltold.com. This article was sponsored by Well Told Health.
From left to right: Dr. Simon Hirota, PhD, Dr. Cathy Lu, MD, Dr. Antoine Dufour, PhD, Dr. Derek McKay, PhD. Photo Credit: Bruce Perrault
ost people have certain foods Ruffo founded Well Told Health that trigger bloating and after she was diagnosed with breast indigestion. For some it may cancer a few years ago. After underbe grains, while for others it could be going successful treatment, Ruffo certain vegetables or sugar. No matter looked for natural products to support what it is, it’s likely to occur during the her continued well-being. “I found that holiday season. With holiday many natural health products parties and special family dinaren’t natural at all,” she says. ners, the variety and — let’s “They’re riddled with synthetface it — overeating may lead ics, fillers, and isolates, and to uncomfortable gastrointesmost consumers have no idea tinal symptoms. what they’re putting into their Bye Bye Bloating helps bodies or even why.” relieve gas and bloating due Wanting to better underto certain foods or a large meal stand natural health products, Monica Ruffo or digestive upset due to stress. Founder, Ruffo completed a certificate It can also help relieve motion Well Told Health in plant-based nutrition at sickness or nausea. With Cornell University and created organic ginger, peppermint, Well Told Health. The comand fennel, Bye Bye Bloating is made pany’s products are now available in from only organic plants and nothing more than 2,000 stores across Canada. else. Bye Bye Bloating is vegan, with no fillers or synthetics or genetically-modiPackaging made with sustainable fied organisms, and doesn’t cause the materials side effects often experienced with overWell Told Health is science-based the-counter digestive aids. and provides complete transparency about every ingredient, supplying a Plants provide natural relief for full ingredient list for each product gastrointestinal upset and links to the scientific research Monica Ruffo, founder of Well Told available on each one. Along with its Health, the company behind Bye Bye approach to sustainable health, the Bloating, says the reason it works company follows sustainable producis the plants. “Only plants can act tion practices. All packaging is made as natural carminatives,” she says. from recycled paper and is printed with “Carminatives stimulate the digestive water-based inks. Everything is recycsystem by coordinating and regulatlable including the caps and bottles, ing gut contractions. They soothe and which are BPA-free. settle the gut wall, easing pain and “I created a company that I wished helping with the removal of gas from had been around when I was doing the digestive tract.” everything I could to reinforce my own “Carminatives are an effective, health and turn things around,” Ruffo widely-studied natural remedy that says. “Information on products was so offers immediate results,” adds Kylie hard to decipher, and there’s such a McGregor, a holistic nutritionist. lack of transparency in this industry.
future testing of a personalized cellular immunotherapy to treat CD. This approach uses the body’s own immune system cells to treat illness. McKay and his team previously discovered that interleukin-4 activates macrophages (M(IL-4)) — a pro-healing type of white blood cell in the immune system — to reverse colitis in lab tests. They believe future custom cell therapies created from an IBD patient’s own M(IL-4) could reduce inflammation, improve healing, and extend disease remission, as an add-on to approved IBD drugs. “This is not drug manipulation. It’s using a patient’s own cells to take on a task they’ve naturally evolved to do, then putting these cells back into the patient to reduce colon inflammation,” McKay says. This kind of immunotherapy is a bold new approach for CD. The researchers plan to launch a clinical trial and recruit CD patients, both active and in remission, for the three-year study beginning April 2022. “Going through my life and also seeing the problems my own child had, I would love to see this research lead to new diagnostics and treatment for all patients,” says Silbernagel.
To learn more, visit snyder.ucalgary.ca. Join us on Jan. 10 for Virtual Mini-Med School: Nutrition, IBS, and Fatty Liver Disease. Register at snyder.ucalgary.ca/ community/minimedical-schoollecture-series. It’s free! This article was sponsored by the Snyder Institute for Chronic Diseases at the University of Calgary.