“We have to stop being ashamed of this illness and be willing to talk about it,” Nicolas told an audience of sufferers and family members of those with IBD.
Nicolas is correct. I have had Crohn’s Disease for 27 years, a mild case which fortunately has not interfered greatly with my day to day life. When I was first diagnosed I did not know another person with the same problem. I kept to myself and for 11 years my main employer did not even know about my condition, which was all the more interesting given the fact I travelled internationally and usually roomed with my boss. I guess I did not want to get stigmatized or held back from anyone exciting travel experiences.
As time went on and I moved on to my next and current job I did not keep it a secret anymore. I felt comfortable bringing it up in conversation. When I had some preventive surgery a decade ago I even wrote about it in my column. By this time organizations like the Crohn's and Colitis Canada and the McGill IBD Research Group had high profiles. Not only were more events being held, but people with IBD were stepping forward
Despite all of this, there is still a lot of work to be done. As Nicolas rightly pointed asked: “How many people know this is Movember versus Crohn’s and Colitis Awareness Month?”
I was encouraged by the number of people on hand for the symposium, where sessions were held simultaneously in English and French covering the latest IBD research, financial planning for people living with IBD and pregnancy and fertility.
Dr. Maya Saleh, an Associate Professor in the Departments of Medicine and Biochemistry and Director of the Inflammation and Cancer Program at the McGillUniversity Health Centre, was the first speaker. She is Associate Member in the Department of Microbiology and Immunology, Associate member of the Goodman Cancer Centre and a member of the Center for the Study of Host Resistance and the Division of Critical Care of the MUHC Research Institute. She joined the faculty of Medicine at McGill University in 2005 and is a McGill University Dawson Scholar, a FRSQ Chercheur-Boursier Junior 2 and a Burroughs Wellcome Fund Investigator in the Pathogenesis of Infectious diseases.
|Left top right: Nicholaos Contaxakis (English MC). Andrée Mathieu (Janssen, event sponsor), Dr. Maya Saleh (McGill University) , Yael Mamane (Vertex Pharmaceuticals), Richard Chiasson (Sunlife Financials), Anick Murray (French MC).|
Dr. Saleh gave a general overview of the GI tract and then spoke about the genetic effect of children and IBD and the environmental triggers for adults who get the disease. “As we get older our immune systems become weaker and weaker,” she explained.
How heritable is IBD? As a matter of comparison she listed bladder cancer as very low in this category compared to Celiac Disease, which is very high. Colitis and Ulceritis Colitis fall in the middle at 50 percent.
While reviewing the different medications used to treat IBD, Dr. Saleh spoke optimistically about research currently being done at McMaster University in Hamilton about fecal transfers and success in this area thus far related to cases of C Difficile. “It is in the really early stages,” said Dr. Saleh, “but the hope is fecal transplants could prove to be a cure and administered in the form of a suppository. How often will you need it? Once a year? Once a week?”
This experimental therapy involves injecting fecal matter into the GI tract of sufferers of ulcerative colitis. According to reports, the McMaster study has involved participants suffering from ulcerative colitis receiving fecal material from specially screened donors, while others received a placebo mixture. Similar to an enema, the mixtures are infused into their colon with a syringe.
The idea of a fecal transplant is that "good" bacteria from healthy stool move in and take up residence, crowding out "bad" bacteria such as C. diff. The donor (typically a patient's family member) is screened for conditions that could disqualify them, including hidden disease or parasites. They are instructed to produce a sample at home, put it on ice and take it to the hospital for the procedure. Current treatment for IDB includes prednisone, imuran, mercaptopurine (6mp), methotrexate, remicade, humira and stelara (ustekinumab).
New treatments coming down the pipe include vedolizumb, which was approved in the US last May 2014 for patients with moderately to severely active Crohn’s disease or ulcerative colitis. Vedolizumab is described as an option when conventional therapy is not tolerated or does not provide sufficient release of symptoms.
Tofacitinib (Xeljanz) is a Disease Modifying Anti-Rheumatic Drug (DMARD) first available in 2012. It is currently approved for the treatment of moderate to severe rheumatoid arthritis with or without methotrexate and now in trial phases for IBD.
Richard Chiasson from Sun Life Financial presented some tips on financial planning for Crohn’s and Colitis patients. Chiasson was a nurse for 21 years so he is in a good condition to advise clients with different illnesses. “The greatest list to depleting your wealth is your health because you cannot control it,” he noted.
What can derail your retirement plans? “You live too long, die too soon or become sick and disabled,” was Chiasson’s response. “Our lives can turn on a dime.”
Dr. Talat Bessissow is an Assistant Professor to the Division of Gastroenterology. He completed post-graduate training in Internal Medicine and Gastroenterology and a fellowship in inflammatory bowel disease and advanced endoscopic imaging at the Gasthuisberg University Hospital in Leuven, Belgium. His current research focuses on the role and outcomes of mucosal healing in inflammatory bowel disease. He has clinical duties at the MUHC, teaching students and supervising medical residents and will part of a new IBD Centre being set to be established at the Montreal General Hospital facility next April.
Dr. Bessissow stated from the outset that there is no difference between the average person and someone with IBD completing a normal pregnancy. However, fertility can go down significantly when surgery involves the removal of the rectum because this creates inflammation and scarring. The solution for a woman who has not had her family yet is to consider a temporary ileostomy – a temporary bag or pouch that allows the rectum to stay in place.
The goal in pregnancy, Dr. Bessissow’s stressed, is to be in remission and maintain that for the entire nine month period. Statistics indicate that that there is a 14 percent chance of an IDB post-partum flare. Reduce x-rays and if you need a colonoscopy only do so in the second trimester. In contrast, flex sigmoidscopies are low risk. Women with a pouch and those with parianal disease should have C-sections.
In terms of medications, those taking a biologic like Remicade should stop that treatment after 32 weeks and resume once the baby is born. As for Humira, this should be halted between weeks 36 and 38. Naturally, if the illness flares up the treating physicians will decide how to handle this.
Communication between the obstetrician and the pediatrician is paramount in cases like this.
The program concluded with can emphasis on the need for volunteers. It was interesting to see the new Generation C Group, a gathering of young adults who have started to meet and have a fitness-oriented fundraiser planned for January. In keeping with the bilingual nature of the organization, the conference ran French sessions concurrently with the English ones.