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


Representative Davis of California Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

May 17, 2013

UPDATE: 06/13/2015: HR 842 did not pass, but a similar bill, HR 2311, is currently in the House of Representatives for 2015-2016. Please click on the HR 2311 sub-category on the right sidebar of this blog to see the relevant posts.

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of early May 2013, Representative Susan Davis (D-CA-53) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Davis is serving her seventh term as a member of the House of Representatives. Her district, the 53rd Congressional District of California, currently represents the central and eastern San Diego region, as far south as parts of Chula Vista and as far east as El Cajon. According to Representative Davis’ official website, she is ranking member of the House Subcommittee on Military Personnel, and has a past history of supporting much legislation on behalf of veterans. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. She also has supported health care legislation, including medical research budgets for the National Institutes of Health, as well as women’s issues. In most countries, women comprise approximately two-thirds of adults with IBS. Representative Davis was also a co-sponsor of the previous version of this bill, HR 2239, in 2011-2012.

If you are a constituent of Representative Davis, please take a few minutes to write or call her with your thanks for her continuing support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representative Davis joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1), Representative Gwen Moore (D-WI-5), and Representative Ron Kind (D-WI-3).  U.S. citizens residing in the districts of Representative Davis’ colleagues listed here, please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support,  please see the previous post from March 2, 2013  for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 842 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 842.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Restroom Access Act (Ally’s Law) Updates in Maryland and Maine

May 10, 2013

As of last month, April 2013, there are positive updates to report in two more U.S. states regarding Restroom Access Acts, popularly known as Ally’s Law. This brings the number of states with known restroom access laws, allowing people with medical conditions to use employee-only restrooms in retail establishments, to fifteen.

In Maryland, according to this April 11, 2013 article in the Maryland Reporter,  state legislation HB 1183 was signed into law by the governor. and is now known as Chapter 148. It will take effect on October 1, 2013. Unfortunately, there do not appear to be additional publicly available sources to confirm or elaborate on the linked information, but as far as IBS Impact is able to determine, the current law amends previously existing law to reduce the minimum number of employees a retail establishment must have in order to be covered by the law from twenty to three. This is more consistent with similar restroom access laws in other states and considerably expands the number of businesses that would be required to comply. The amended Chapter 148 also provides for the Maryland Department of Health and Mental Hygiene to create an identification card that can be downloaded and printed from its website and signed by a physician to verify an individual’s medical condition that may require immediate access to a toilet. Please note that unlike similar laws in most other states that currently have them, Maryland does not specifically mention irritable bowel syndrome in the text. However, IBS is covered by the phrase, “other medical condition.”

Also last month, Team Challenge Maine, an inflammatory bowel disease advocacy and awareness Facebook group we highlighted on this blog on December 23, 2012 for its efforts to pass similar legislation in that state, reported that to their surprise, Maine has already had such a law since 2009. The text of Maine statute Title 22, Section 1672-B is linked here. It specifically mentions irritable bowel syndrome among other eligible conditions. Team Challenge Maine now encourages people to report on their experiences of using the law now that they are aware of it.

These laws and the advocacy movement to enact them are popularly named for Ally Bain, who has Crohn’s disease, a type of inflammatory bowel disease (IBD). Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally successfully worked with legislators in her then-home state of Illinois to enact a law to address similar situations in 2005. Since then, with continued public advocacy by Ally and others, in addition to Illinois, Maryland and Maine, there are currently known existing laws in Colorado, Connecticut, Kentucky, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington State and Wisconsin. As these are individual state laws, they each vary in certain details, but most say that a “retail establishment” must give a person with an “eligible medical condition” access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business. Please see IBS Impact’s previous posts on February 21, 2012 and August 20, 2012 for links to text of the law in other states where one currently exists. In most of these states, irritable bowel syndrome (IBS) is specifically mentioned in each law. In Massachusetts, similar to Maryland,  IBS is covered broadly under “any other medical condition requires immediate access to a restroom facility.”

In past years, similar bills been introduced in several additional states, but have not yet passed, requiring continuing advocacy and reintroduction in subsequent legislative sessions.  IBS Impact has reached out to Ally and other self-advocates in the inflammatory bowel disease community in an effort to increase public awareness of the similar concerns of many people with IBS, as well as to offer support toward this common goal. While their diagnosis of IBD is different from IBS in several ways, the experience of gastrointestinal pain, unpredictable, urgent or frequent trips to the bathroom and feeling embarrassed and alone is shared by many people with IBS. The IBD community has generally been much more publicly visible and active in these advocacy efforts relative to people with IBS.  Please see IBS Impact’s previous post on November 2, 2012 for commentary on why it is in the interests of the IBS community to join our IBD-affected peers in pressing for these laws.

IBS Impact is pleased to learn that restroom access laws do exist in Maryland and Maine. However, there appears to be a lack of widespread coverage of the previous Maryland law and the recently signed amendments by journalists, as well as by websites, blogs and organizations in both the IBD and IBS communities. This news was not reported on this blog earlier than now,  precisely because of the difficulty in confirming accurate details through IBS Impact’s many sources, contacts and research efforts. Also, it is ironic that advocacy activities in Maine were publicly launched for several months before they were able to discover that a law already is on the books.

All this seems to point to a major lack of awareness in constituencies that might benefit from these laws, as well as the need for a centralized source for the status of laws, pending legislation, and advocacy efforts in each state. While IBS Impact does not currently have the resources to be as comprehensive a source for this as would be ideal, over time, this blog has striven to report on as much information on the subject as is readily available. When possible, we have also included links to the laws and to grassroots groups concerned with these issues in certain states.  We encourage readers and followers, both in the IBS and the IBD community, to comment here or to contact IBS Impact privately with additional information or corrections in the future, so that all people with medical conditions causing urgent restroom needs can benefit from this knowledge.


Representative Kind of Wisconsin Co-Sponsors HR 842 for Functional Gastrointestinal and Motility Disorders

May 5, 2013

UPDATE: 06/13/2015: HR 842 did not pass, but a similar bill, HR 2311, is currently in the House of Representatives for 2015-2016. Please click on the HR 2311 sub-category on the right sidebar of this blog to see the relevant posts.

According to THOMAS, the Library of Congress legislative database, and IFFGD/the Digestive Health Alliance, as of late April 2013, Representative Ron Kind (D-WI-3) has signed on as a co-sponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013.

Representative Kind is serving his ninth term as a member of the House of Representatives. His district, the 3rd Congressional District of Wisconsin, represents the western part of the state, including La Crosse, Eau Claire and Platteville. He is a member of the Subcommittee on Health of the House Committee of Ways and Means.  He also has a record of supporting legislation of concern to veterans. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS, which are already very common in the general population. Representative Kind was also a co-sponsor of the previous version of this bill, HR 2239 in the 112th Congress in 2011-2011.

If you are a constituent of Representative Kind, please take a few minutes to write or call with your thanks for his continuing support of HR 842 and the functional gastrointestinal and motility disorders community.

In officially supporting HR 842, Representative Kind joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Julia Brownley (D-CA-26), Representative Bobby Rush (D-IL-1), and Representative Gwen Moore (D-WI-5).  U.S. citizens residing in the districts of Representative Kind’s colleagues listed here, please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. Click on the link above if you would like to see a list of its members.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 842 and you have not contacted him or her recently to ask for his or her support,  please see the previous post from March 2, 2013  for links to the bill and more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention. Keep in mind that your Representative may be different from before because of the 2012 elections, district boundaries that may have been re-drawn, or if you have moved.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics. However, even general expressions of support are helpful.

HR 842 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 842.

NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research also sometimes involves multinational teams of scientists, and in any case, study results are usually published globally, adding to the cumulative knowledge worldwide.

It is IBS Impact’s understanding that HR 842 will not require a debate or vote on the floor of the House of Representatives, and will pass as soon as it reaches 218 sponsor/cosponsors, or a simple majority of the House. In order for this milestone to be accomplished during the current Congress, the 113th,  the necessary number of sponsor/cosponsors must be reached by December 2014. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 842 has not passed by that time,  a similar bill will have to be reintroduced and the FGIMD community will have to start the process of gathering co-sponsors anew. This is what occurred with HR 2239 in 2012. While it is quite common for legislation of various sorts to take several Congresses to pass, our continuing advocacy now can increase awareness, build momentum and perhaps accelerate passage. It is in our hands.

Check back on this blog or join IBS Impact’s Facebook page or Twitter feed for further updates on HR 842 as they occur. Links to the social media sites can be found on the right sidebar of the blog.


Food and Drug Administration Selects IBS, GERD and Gastroparesis for Patient-Focused Initiative

May 1, 2013

Last week, the International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance, announced that the U.S. Food and Drug  Administration has chosen three functional gastrointestinal and motility disorders to be included in its  “patient focused initiative.” (See IFFGD/DHA April 2013  FDA news here.) The FDA is responsible for the review, approval and regulation of medications in the U.S.  The entire initiative is scheduled to take place over five years and include 20 serious medical conditions. The three digestive disorders, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD) with regurgitation on proton pump inhibitors, and gastroparesis, are among the 16 diverse medical conditions in total that were selected for the first three years.

The program will involve public meetings and other means for the FDA to hear experiences from people affected by the selected conditions. According to recent information from DHA, the FDA has put up a new Patient Network website to invite comment from individuals with the disorders or concerned supporters, and there will also be opportunities for interested parties to apply to be Patient Representatives for FDA advisory committees. It is hoped that these meetings will positively influence FDA decision-making in regard to medical conditions that represented in this program.  To quote information previously provided by IFFGD/DHA, the FDA’s criteria for inclusion in this initiative are:

  • Disease areas that are chronic, symptomatic, or affect functioning and activities of daily living;
  • Disease areas that reflect a range of severity;
  • Disease areas for which aspects of the disease are not formally captured in clinical trials;
  • Disease areas that have a severe impact on identifiable subpopulations; 
  • Disease areas that represent a broad range in terms of size of the affected population; or disease areas for which there are currently no therapies or very few therapies, or the available therapies do not directly affect how a patient feels, functions, or survives

As many people with IBS and our supporters are aware, many of these criteria fit IBS very well. This exciting news appears to be partly as a result of advocacy by IFFGD/DHA, with the the support of IBS Impact and other entities and individuals in the functional GI and motility community, during an FDA public comment period in the fall of 2012. (See the October 20, 2012 post.) At that time, IBS was the only functional GI and motility disorder identified among 39 diverse disorders as a possible candidate for the initiative. That it was chosen in the first round, along with two other functional GI and motility disorders not previously considered, appears to be a positive sign for increased awareness of digestive health needs in this federal government regulatory agency.

IBS Impact thanks IFFGD/DHA and all those who took the time to share their comments, lived experiences and the impact of IBS, GERD or gastroparesis with the FDA at the time of the original action alert. It is hoped that the representation of these three disorders in the patient focused initiative will create other opportunities for our community and pave the way for many long-term, positive and systemic changes for us all.