The City of Côte Saint-Luc hosted the annual Crohn`s and Colitis Canada Education Seminar at our Aquatic and Community Centre on November 21. Myself and Councillor Mitchell Brownstein delivered greetings and let’s just say our words came from “the gut.” Mitchell has had Crohn’s for 40 years. For me, it has now been 28 years.
This is National Crohn’s and Colitis Awareness Month. Crohn’s disease and ulcerative colitis are both major categories of Inflammatory Bowel Diseases (IBD). These chronic diseases tend to run in families and they affect males and females equally. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract and may affect any part from the mouth to the anus. Ulcerative colitis is a chronic inflammatory condition limited to the colon, otherwise known as the large intestine.
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. This organization is one of the top two health charity funders of Crohn’s and colitis research in the world, investing over $94 million in research to date. Its Crohn’s & Colitis – Make it Stop for Life Campaign will raise $100 million by 2020 to advance its mission.
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I have been very fortunate to have a case under control for most of the time since I was first diagnosed. Last February I decided to completely change my eating habits, cutting out soft drinks, junk food and heavy desserts while eating more vegetables and exercising. I lost nearly 30 pounds, but most importantly I feel even better. I had one surgery some 12 years ago, preventive in nature to deal with a stricture (the narrowing of the colon). Mitchell was only 12 when he got IBD. Despite some bumps along the way and five surgeries, he built a thriving law practice, performs on stage in musical and soon will be running for mayor.
The seminar began with Kevin McHugh, the Medical Manager of Gastroenterology for Abbvie Immunology who spoke about The Future for the IBD patient. He alluded to the GEM Project, an international research study attempting to determine possible causes for Crohn’s Disease by following healthy individuals who are at a higher risk for developing it over time. GEM stands for genetics, the environment and microbial. The study consists of blood and stool samples and a questionnaire. It does not look at the patient with Crohn’s, but at his or her siblings and offspring. The study will take several more years to complete. Abbvie makes Humira, a TNF blocker medicine that can lower the ability of one’s immune system to fight infections. But it is used to reduce the signs and symptoms of moderate to severe rheumatoid arthritis, moderate to severe juvenile idiopathic arthritis in children aged two or more, psoriatic arthritis, moderate to severe Crohn’s and ulcerative colitis.
McHugh shared some information about a University of Alberta study on fecal calprotectin, a reliable non-invasive marker for intestinal inflammation usable for monitoring patients with IBD. Tests are usually performed by enzyme-linked immunosorbent assay (ELISA), which is time consuming and delays results, thus limiting its use in clinical practice. The study’s aim was to evaluate CalproSmart, a new rapid test for fecal calprotectin performed by patients themselves at home, and compare it to gold standard ELISA. A total of 221 patients with IBD (115 ulcerative colitis and 106 Crohn's disease) were included. The CalproSmart test involves extraction of feces, application to the lateral flow device, and taking a picture with a smartphone after 10 minutes of incubation. Results appear on the screen within seconds. Patients were instructed at inclusion and had a video guide of the procedure as support. When using CalproSmart at home, patients also sent in two fecal samples to be analyzed by ELISA. A total of 894 fecal calprotectin results were obtained by ELISA, and 632 of them from CalproSmart. McHugh also referred to Dr. Kerry Novak from The University of Calgary and her work on imaging in inflammatory bowel disease, particularly the use of ultrasound for the evaluation of Crohn’s disease.
As for the future, he spoke about how the day will come when people can do full blood workups from their own home and the development of a smart toilet in Japan.
Dr. François Nantel, the Medical Director of Janssen, addressed the topic of looking into the future. Janssen is behind anti-TNF drugs Remicade, Stelera and Simponi. “Anti-TNFs do not cure IBD,” he explained. "They can put you in remission. You take them until something better comes along.”
In terms of Crohn’s and Colitis, Remicade can reduce signs and symptoms and induce and maintain remission in adult patients with moderately to severely active Crohn’s disease who haven't responded well to other therapies. This is an infusion and for those it works for, it is a miracle and can result in a completely normal life style. Those who develop anti-bodies to it must stop, generally switching to Humira. The patent for Remicade ended two years ago, opening the door for generics. One, called Inflectra, is on the market, but as Dr. Nantel explained it has been approved to treat psoriasis and arthritis, but not IBD. When the day of approval does come, will insurance companies and the government force people to take the generic version? Will that generic version truly be as effective?
One woman at the seminar said that she was doing so well on Remicade and so worried about potential long-term side effectsthat she decided to go off of it. She subsequently flared and was fortunate to resume taking it.
How long can Remicade work? Nantel said he knows of patients who have been on it since 2002 and are still doing excellent on the drug. In fact, there are others who started on it in the late 1990's as part of trials and they too are still in remission.
Dr. Stéphane Bensoussan, a Holistic Health & Educational Psychologist, concluded the seminar with a very interesting take on the influence of stress on Crohn's and ulcerative Colitis. This was an interactive session and those in attendance really appreciated the opportunity to share their thoughts on this very relevant subject.
Stress does indeed exacerbate IBD, Bensoussan noted. Some of the stress factors relate to pain, unpredictability, emergencies, fear of a relapse, embarrassment, loss of independence, loss of friends, changes in social life, absenteeism at work, changes of body image, side effects of medication and emotions such as anger, frustration, grief and anxiety.
“If you feel pain from IBD that is a physical pain,” said Dr. Bensoussan, whose Psysante Clinic is in Kirkland. “Maybe it is 9/10. But if you can control the stress level, maybe you can get it down to three.”
Dr. Bensoussan said that the rates of anxiety and depression are 29 to 35 percent for people with IBD in remission and 60 to 80 percent for those in a flare. “We know that the gut has passages to the brain,” he said.
As for tackling stress, Dr. Bensoussan said having a balanced diet, getting enough sleep, exercising and practicing relaxation techniques can help. He had us all sit in a position with our bums at the edge of our seats while laying back. We put one hand on our chest, the other over our gut, closed our eyes and breathed. The entire room almost fell asleep.
Two Côte Saint-Luc residents, Regional Director Edna Mendelson and development coordinator Stefanie Rosenblatt, continue to do a great job to put this organization on the map here. The day concluded with a brief presentation by Shannon Epstein about Generation C, a young adult group under the auspices of Crohn's and Colitis Canada. Their aim is to organize fundraising events and bring young students who suffer from IBD together to share their experiences. Look them up on Facebook.
Over lunch, Stefanie shared ways in which people can get involved with the organization. The annual fundraising gala will take place on April 4 at the Montreal Museum of Fine Arts while the Gutsy Walk is set for June 5 at Maisonneuve Park. Last week members visited the Quebec National Assembly and set up a booth. Two Members of the National Assembly suffer from IBD, D’Arcy McGee MNA David Birnbaum and Benoit Charette from Deux-Montagnes. Even Premier Philippe Couillard, a physician by profession, stopped by the booth.
Finally, a Volunteer Appreciation Event was held earlier in the week. Those recognized were: Stéphanie Ruel and Virginie Sinotte (Gutsy Walk Leadership); Kevin Smee, Sam Rimoin and Adrienne Cadloff from Stanpro ( Gutsy Walk Fundraising team); Marian Sniatowsky and Erin Battat (Gala Committee Leadership Award); Julie Jill (Third Party Event); Robert Martin and Salvatore Ciarlo (Third Party Event, Hockey Tournament); Steph Ouimet (Third Party Event, Mountain Climbing); Arianne Leroux-Boudreault (Top Pledge Earner); Sheldon Miller (Top Pledge Earner from the Gutsy Walk); Brandy Safran (Third Party Event, Yoga); Samantha Maldoff and Adina Zairi (Leadership Award, Generation C); and Marie-Claude Guerin (Third Party Event).