Results and Followup to Gastrointestinal Society, Canada 2016 Survey on Irritable Bowel Syndrome (IBS)

January 29, 2017

About one year ago, on January 26, 2016, IBS Impact posted a national online survey invitation by the Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research. The GI Society asked adults with diagnosed irritable bowel syndrome and parents/caregivers of children with diagnosed irritable bowel syndrome from across Canada about experiences, opinions and effects of IBS, with the intention of using the results to shape the organization’s programs, as well as future community awareness and advocacy among health care providers and policy makers and the general public.

Last month, the GI Society posted a report, Gastrointestinal Society 2016 Survey Results: Irritable Bowel Syndrome (IBS), which is available for download in PDF format from the link. Some highlights include the following:

There were a total of 2961 responses from all provinces and territories of Canada, approximately proportional to population. 2505 participants responded in English and 456 in French from the organization’s French-language mirror site. 86% of respondents were female, 14% male. 90% were between the ages of 30-69.

53% had had IBS for more than 10 years. 41% reported IBS-M (mixed subtype, formerly referred to as IBS-A for alternating), 35% IBS-D (diarrhea-predominant subtype), 18% IBS-C (constipation-predominant subtype) and 6% unsure. In a question rating pain in the previous 3 months on a 1-5 scale with 1 as no pain, and 5 as the worst pain, 4% chose 1, 20% chose 2, 39% chose 3, 28% chose 4 and 9% chose 5. Respondents were also asked to rate other common IBS symptom severity as never experience, mild, moderate, and severe.

According to the report, fewer than half of respondents have seen a gastroenterologist. Those who have consulted doctors for IBS mostly see general practitioners. 26% reported not seeing a doctor for IBS at least once a year. Of the remainder, the largest subgroups reported 1-2 visits or 3-5 visits. Small percentages in the single digits each reported 6-10 visits or 11 or more visits. 12% stated they had been hospitalized for IBS. 62% use two or more medications or treatments regularly. 16% stated they cannot afford prescribed treatments and 26% that they can only afford some. Medications commonly used for IBS pain are sufficiently effective for only about one-third. Only 21% of survey participants describe their symptoms as under control, 45% somewhat under control, 34% no symptoms under control. The report notes that these results are similar to a 2015 nationwide survey by the American Gastroenterological Association in the United States, IBS in America.

Most of the GI Society’s respondents also indicate co-existing medical conditions and/or quality of life effects. 83% report the need to limit their diet. 71% report anxiety at least some of the time with 27%  reporting an anxiety disorder diagnosis. 32% have a mood disorder, 27% gastroesophageal reflux disease (GERD), 24% sleep disorders, 15% fibromyalgia. 76% state that IBS interferes with everyday activities at least some of the time. 37% overall state that in an average month they cannot leave their homes at least some of the time, with higher percentages in the IBS-D subset.  46% of respondents who are employed and/or are students report that they miss time from work or school in an average month due to IBS.

The report concludes that there continue to be unmet treatment and quality of life needs for many Canadians with IBS and that in particular, IBS pain needs improved treatment options, as that remains a significant symptom for most people with IBS that is significantly associated with decreased quality of life. The report also states that the time between symptom onset and diagnosis and diagnosis and relief of symptoms needs to be shortened. This may be possible through increased collaboration between patients and physicians.

The GI Society is asking those who responded in the original survey to participate in a five question online followup survey. The original survey is now completed and no longer available for new replies, but the GI Society also invites those who did not have the opportunity to complete the original survey to answer the followup. At this time, January 29, 2017, the followup questions are open at the original survey link. No closing date for responses is indicated. Please address any questions about this survey directly to the GI Society

http://www.badgut.org/ibs-survey/

IBS Impact commends the Gastrointestinal Society for its efforts to gather and publicize the views of its constituency. We encourage  Canadian readers with IBS or IBS-affected minor children to continue to express and advocate for their needs and desires to the organization and their health care and community services providers and national, provincial and local policy makers through the followup survey and other means. We hope that the survey results amplify and catalyze positive changes for the IBS community in Canada, and by extension, worldwide.

 


Upcoming GI Society, Canada, IBS Education and Support Events for April and May 2016.

March 20, 2016

The Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research, is offering four “Bad Gut Lectures” on various aspects of irritable bowel syndrome in different locations within British Columbia during April and May 2016. These are appropriate both for people with IBS and their “support circles,” such as family and friends, and health professionals.  These are free of charge, but advance registration is required.

Tuesday, April 5, 2016 at the Studio Theatre in Maple Grove,  7:00-8:30 PM :

Overview of IBS and treatments by Dr. James R. Gray, a gastroenterologist

Wednesday, April 27m 2016 at the Surrey Memorial Hospital in Surrey, 7:00-8:30 PM:

Overview of IBS and treatments by Dr. James R. Gray, a gastroenterologist

Wednesday, May 4, 2016 at the Executive Suites and Conference Centre in Burnaby, 7:00-8:30 PM

Overview of IBS and focus on stress management by Dr. James R. Gray, a gastroenterologist and Claire Maisonneuve, a registered clinical counsellor

Tuesday, May 31, 2016 at the Poco Inn and Suites Hotel in Port Coquitlam, 7:00-8:30 PM

Overview of IBS and focus on the low-FODMAP diet  by Dr. James R. Gray, a gastroenterologist and Anne-Marie Stelluti, a registered dietitian

Those interested in attending any of the above lectures may register on the GI Society website at http://www.badgut.org/events/lectures/

For people with IBS in the Toronto and Montreal areas, the GI Society also offers ongoing monthly in-person support groups. Please see the GI Society support group page for exact times and locations and the GI Society’s guidelines for members. http://www.badgut.org/events/support-groups/  The GI Society advises that prospective attendees call its office in advance to confirm that the meeting for a given month is occurring as scheduled.

Please address any questions about the above programs directly to the GI Society. IBS Impact hopes that these resources are helpful to our Canadian readers in British Columbia, Ontario and Quebec.

 


Online Survey: Adults with IBS and Parents/Caregivers of Children with IBS in Canada, January 2016

January 26, 2016

The Gastrointestinal (GI) Society, also known as the Canadian Society of Intestinal Research, is inviting people residing throughout Canada who have irritable bowel syndrome or are parents or caregivers of children with irritable bowel syndrome to take part in an anonymous online survey. This survey will ask about day to day experiences, opinions and effects of IBS and will be used by the GI Society to shape the organization’s programs and community awareness and advocacy among health care providers and policy makers and the general public.

The survey will be open and available on the GI Society website until April 30, 2016 and can be accessed at the following link.

http://www.badgut.org/ibs-survey/

If you voluntarily choose to provide the GI Society with contact information at the end of the survey, you will be entered into a random drawing for an iPad mini. The drawing will take place on May 2, 2016.

Please address any questions about this survey directly to the GI Society.

We welcome researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation.  IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.


Guest Post : IBS- A Canadian Perspective, Tapping into Key Resources

May 24, 2013

 Blogger Lyndin Kane of Running From the Runs returns this week with a post for her fellow Canadians with IBS, which was written especially for IBS Impact. Readers from all over the world, also see her popular guest post from April 8, 2013 for IBS Awareness Month, which was reposted from her own blog with her kind permission. We thank her once again for contributing her work and knowledge to this blog and to the cause of IBS awareness, support and services in Canada and beyond.

According to the Canadian Digestive Health Foundation, as many as 5 million Canadians now suffer from IBS, whether or not they have officially received a diagnosis from their doctor.  Similar to the United States and the United Kingdom, irritable bowel syndrome is a growing problem in society that affects not only the sufferers, but their family, their friends and even their place of employment.  As a Canadian who has been officially diagnosed with IBS for over 10 years, I have made my way through the maze of the Canadian health care system, specifically in Nova Scotia.  When I first came forward with my concerns, my doctor was very dismissive and it was not until my mother attended an appointment with me that my GP took me seriously.  Following this, I underwent the usual stool tests, blood work, barium enemas (first day of university!) and colonoscopies before receiving the IBS verdict.  At the time, there was not much offered to me in the way of support, a few books, a diet high in fibre and seeking psychological help were all strongly encouraged.

Luckily, things seem to be changing for the better.  More progress needs to be made; however, more and more resources are becoming available to Canadians.  Upon completing research as to what types of resources are offered in Canada, I have identified a few key options that go beyond the traditional fact sheet:

Canadian Digestive Health Foundation (CDHF): This organization offers various videos and slideshows that cover basic information relating to IBS. In addition to this, fact sheets and testimonials from IBS sufferers are presented on the website.What is perhaps the most useful tool is a free app for the iPhone and iPad called Gi BodyGuard This app is designed to create a profile of you and your symptoms and allows you to track your bowel movements, your level of pain in certain areas (ex. abdomen, rectum etc.), your food intake, medication and other symptoms.  This app could be particularly helpful when working with your doctor or dietitian.

Gastrointestinal Society (formerly the Canadian Society of Intestinal Research):  similar to CDHF, badgut.org  offers fact sheets, videos and articles relating to managing IBS as well as current research about the condition.  In addition to their newsletter, Inside Tract, this organization will mail pamphlets free-of-charge to individuals and groups upon request.

Capital District Health Authority (Nova Scotia):The province’s largest health authority, through the Nutrition Education Clinic at both the Dartmouth General Hospital and the Queen Elizabeth II Hospital in Halifax, offer an Irritable Bowel Syndrome Program. Patients must be referred by their doctor in order to access the program which is scheduled once or twice a month. IBS sufferers have the opportunity to meet first in a group setting (1.5-2 hours) and then one-on-one to learn from both a nutritionist and other sufferers as to what to eat when you have IBS.

IBS Support Canada:  Founded by volunteer and IBS sufferer, Belinda Sutton, this organization offers the opportunity to speak to others with the same condition on a monthly basis either in-person or over the phone.

Can’t Wait: Created by the Crohn’s and Colitis Foundation of Canada, the Can’t Wait website and app are there for you during that moment where you are desperately searching for a washroom.  The app uses your phone’s GPS to determine your location and the closest washroom.  If using the website, just plug in your address and street name and the site will generate a list of options for you.

We have focused on the resources available from Canadian providers, however, if there are any other resources you find particularly useful, please provide the information below in the comments section and help us to continue to support each other as we struggle with this health condition.

Written by Lyndin Kane of Halifax, Nova Scotia, freelance writer and author of Running from the Runs, a health and wellness blog dedicated to irritable bowel syndrome and the often uncomfortable, always humorous, effect it can have on daily life. 

Follow her on Twitter @Rnningfrmtherns


Guest Post for IBS Awareness Month: A Lesson Learned From A Young Person With IBS

April 8, 2013

Last week, fellow blogger and person with irritable bowel syndrome,  Lyndin Kane of Halifax, Nova Scotia, Canada, posted on her blog, Running From the Runs, about an encounter she had with a young student with IBS that caused her to reconsider her approach to her own IBS as well. This experience and Lyndin’s conclusion appeared so fitting for IBS Awareness Month and the goal of greater openness that IBS Impact was founded to encourage that we are reposting it here with Lyndin’s permission. Please visit her blog, and also look for additional work by Lyndin, written especially for IBS Impact, in the near future.

IBS Awareness Month

 Last week I participated in the Forum for Young Canadians for a second year in a row.  As I learned last year, it is an awesome program where Canada’s brightest students gather to learn about politics and government.  One could say that I learned a lot about these topics throughout my week, but some of my personal lessons-learned were from one-on-one interaction with my students.

There is one moment that stands out for me both as an IBS sufferer, advocate and blogger and I feel compelled to share it with you.  A student came up to me one morning just prior to the start of our jam-packed day.  She was very upset and visibly stressed – the reason?  She has IBS and was worried that walking to the day’s activities would trigger an unwelcome washroom visit.  We were able to find a solution for her through a taxi, which allowed her to attend the sessions but not have the additional worry about whether or not she could make it without visiting the loo.  The problem was, I automatically asked the following question: “would you like me to tell the group that you are running behind and will meet us there”?  Her response was to let the group know what was happening.

Shame on me.  As soon as she responded I felt both ashamed of myself and overwhelmingly proud of her.  For all my talk about being honest and not hiding my illness, my automatic response was to create a lie so that everyone would think she was tardy instead.  At almost half my age, my student did not feel the need to hide behind excuses; she recognizes that this is her reality and she faces it head-on.  I found her to be extremely inspiring.  She has achieved at a very young age what I can only hope to accomplish through working diligently via this blog and through my social interactions, the difference being that the truth came naturally to her and I have learned over the years that this condition is something to hide.

Given that this is IBS Awareness Month, for those of you who suffer with IBS, learn from her example, by exuding confidence and not apologizing or making excuses for something you cannot control.

Written by Lyndin Kane of Halifax, Nova Scotia, freelance writer and author of Running from the Runs, a health and wellness blog dedicated to irritable bowel syndrome and the often uncomfortable, always humorous, effect it can have on daily life. 

Follow her on Twitter @Rnningfrmtherns


Student Organization Provides Support and Awareness for Invisible Disabilities and Chronic Illnesses

February 7, 2012

The IBS Impact founder made contact recently with InvisAbilities, an organization which currently offers peer-run support and other programs for students with invisible disabilities or chronic illnesses, as well as public awareness activities related to invisible conditions, at three universities in Canada.

InvisAbilities was founded in 2009 by Julie Harmgardt, a student at Queen’s University in Kingston, Ontario, after she acquired multiple invisible conditions. It has since become a national organization and new chapters have recently been started by students at McGill University in Montreal, Quebec and the University of Ottawa in Canada’s capital city of Ottawa, Ontario. It appears that these student groups are well accepted by the university administrations and Julie hopes that eventually InvisAbilities will have chapters on all university campuses throughout Canada.

At Queen’s, so far, offerings for those involved with InvisAbilities have included discussion groups and social events in centrally located and accessible campus locations, a buddy program whereby students can be matched with someone with a similar disability or condition for peer support, a lending library of books about various invisible disabilities, awareness events such as a film screening and awareness week,  a yoga class adapted to the needs of those with chronic pain or decreased mobility, and temporary financial assistance for transportation in certain situations. A recent article on the McGill chapter notes that the organization is open to all, including those with invisible conditions themselves, interested friends and anyone who believes in the cause. The article mentions an exchange student from the University of Edinburgh in Scotland and a visitor from Carleton University in Ottawa who both participated in InvisAbilities activities during their stays at McGill.

From information on InvisAbilities’ website, blog, Facebook and Twitter feeds and linked media coverage, it appears that InvisAbilities attracts members with a wide range of conditions including irritable bowel syndrome, inflammatory bowel disease, fibromyalgia, chronic fatigue syndrome, connective tissue disorders, diabetes, food allergies, mental illness, migraines and cancer, among others.  From our communication, Julie states that she is familiar with some of the challenges of GI conditions such as IBS, as well as the common taboo about discussing it in public. She states that she believes this stigma is particularly difficult for those who are young.

Recent InvisAbilities blog posts on inflammatory bowel disease and Type 1 diabetes, as well as a list of common social misconceptions posted on the home page, make it clear that those with a wide range of invisible conditions face many of the same physical and social obstacles as many people with IBS: chronic pain, fatigue, embarrassing symptoms, questions or misunderstandings from others regarding food restrictions or choices,  perceptions from others that one does not appear ill or disabled, that a student of traditional age may be “too young” to have a chronic health condition,  that one is antisocial for declining activities with friends, or that one is lazy for missing school or work.  Many people with IBS often think that we are alone in our experiences, but we are not, and recognizing common ground with other people and groups can be an advantage, both in responding to our own individual situations and in encouraging awareness, advocacy and societal advances for our cause

IBS Impact is pleased to alert readers in Canada to this possibly local resource for peer support, and to welcome any InvisAbilities members or supporters with an interest in IBS who may find IBS Impact as a result. Additional content and links, including many new resources outside the United States, will soon be added to the main IBS Impact website. We encourage your input on Canadian resources and how the site and blog perhaps can be made more useful to citizens and residents of Canada. Submissions of articles from a Canadian and/or student perspective are also welcome. Please use the contact links on the home page of the main IBS Impact site.

For those blog readers who are neither in the above geographical areas of Canada nor university students, it is hoped that Julie’s and other students’ efforts in establishing InvisAbilities will serve as yet another real–life example of how concrete, grassroots actions can make a difference. Like IBS Impact, InvisAbilities began from one person’s personal experience, recognition of unmet needs, and desire to play a part in the process of long term-positive change. Get involved in IBS Impact, in InvisAbilities or any effort on behalf of the IBS cause that is right for you. The more voices that are publicly speaking out, the more our needs will be recognized by others.

Additional support options for IBS and some commonly overlapping conditions can be found on the links page of the main website, and within the November 18  blog post.