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

 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

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

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

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

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.

A Perspective of 5 Years and 6 IBS Awareness Months

by Nina Pan, IBS Impact founder and primary blogger for IBS Impact

In late 2007, very abruptly after decades of excellent physical and mental health, I became a person with severe pain-predominant IBS and numerous extraintestinal symptoms. Despite immediate and correct diagnosis by two physicians within days of onset, prompt treatment across the spectrum of reputable conventional and complementary IBS interventions  and proactive, unceasing self-education and self-advocacy, it has been over five years of a long, continuing road and, thankfully, some slow physical progress and regained quality of life, but never simple answers and certainly no mythical miracle cure.  IBS and its many unpredictable effects, physically, emotionally, socially, professionally,  and financially, remain with me to some extent every waking hour, and it’s only with the passage of time that it’s possible to realize how far I’ve come.

My first IBS Awareness Month, April 2008, passed in a blur of the steep learning curve of recent diagnosis and close to 20 severe GI and non-GI symptoms, including sleep disturbances, 24 hours a day, 7 days a week. My second IBS Awareness Month in April 2009 found me a bit improved, but still much the same overall. A few months later, realizing that I was quickly exhausting appropriate options for my own IBS management, I began to consider using my long personal and professional experience in disability and health communities and as an educator to advocate for the IBS cause. Shortly after my third IBS Awareness Month in 2010, IBS Impact came to fruition. Just before my fourth IBS Awareness Month in 2011, we launched the public website, and in 2012, around my fifth IBS Awareness Month, we made our first forays into social media.

2013 marks my sixth April as a person with IBS, and while IBS Impact is still far from the original vision of a large, active community of people with IBS focused on self-advocacy and awareness and, similar to symptom management, the results are rarely immediate or obvious, slow and steady work has made it a presence in the IBS and GI disorders community that has reached, at last count, 101 countries on every continent at some time in its existence. Our niche is intentionally distinct from the many existing forums that focus on emotional support and day to day management: reputable, evidence-based scientific information, personal experiences, useful news, clinical trial and advocacy opportunities, and food for thought about the broader medical and social issues facing many of us with IBS. Although my own experiences and interests as a person with IBS definitely motivate, inform and shape IBS Impact, I rarely write directly about them here, because the goal is not to have readers see this endeavor as about me and my personal problem. It’s about guiding both fellow people with IBS and others to recognize IBS as a global societal concern that affects not only those of us with the symptoms or diagnostic label, but everyone around us too.

Like individuals, as a community, people with IBS often have pessimistic phases. Enter any support forum at random, and some messages will be about how, “Nothing helps,” “Nobody understands,” “Nothing ever changes.” That often appears true in the heat of the moment, but again, looking back over the long term, what have six years of IBS Awareness Months brought for the IBS community?  Here are several actual examples, many of which have been discussed before on this blog.

Progress in the science of IBS:

 In 2010, a report of a decade-long study by McGill and McMaster Universities of Walkerton, Ontario, Canada was released. This community experienced contamination of its water supply in 2000, leading to over 2300 residents becoming ill. More than a third of these people later developed post-infectious IBS. This research contributed to the understanding of IBS-PI, as well as the possible genetics of IBS. (See the August 5, 2011 post)

Also in 2010, researchers at UCLA in the United States and McGill University in Canada, working jointly, discovered neurological changes in female study participants with IBS, opening the door to further research of possible biomarkers for IBS. This research interest in the neurology of IBS continues. Just this week, the State University of New York at Buffalo reported in a press release about the work of Jeffrey Lackner, PsyD and colleagues who are using brain imaging in an attempt to identify IBS biomarkers and possible changes as a result of psychological treatments like cognitive behavioral therapy.

In the past five years, there has been increasing interest, both in scholarly journals and mainstream media, in the role of gut bacteria in IBS as well as overall health. Besides many medical studies specific to IBS and other GI disorders, two separate international collaborations are currently working with gut microbiome samples recruited from thousands of ordinary members of the general public who volunteered over the Internet. (See the December 31, 2012 post.)

Progress in the treatment of IBS:

The NICE guidelines in the United Kingdom for treatment of IBS were updated in 2008. The American College of Gastroenterology guidelines were updated in 2009. (See the April 27, 2012 post.)

Linaclotide, approved in 2012, is already in use for IBS-C  in the U.S., and is soon forthcoming in Europe as Constella. Several other investigational medications for IBS are in the research pipeline. (See the September 1, 2012  and November 30, 2012 posts.)

The low-FODMAP diet, pioneered in Australia in 1999, wasn’t yet well known internationally as a possible intervention for some people with IBS in 2008, but has now received wider interest and evidence-based support.

Progress in understanding the impact of IBS and the barriers that remain:

In 2009, IFFGD released the first report of its ongoing and comprehensive Unmet Needs Survey of respondents with IBS.

In 2010, a team of researchers at UCLA published a study that showed that far more gastroenterologists, primary care physicians and nurse practitioners in local communities than functional GI experts still believe erroneously that IBS is a diagnosis of exclusion. (See the October 9, 2011 post.)

In 2011, a Rome Foundation Working Team Committee report acknowledged that the percentages of people with moderate and severe IBS are likely higher than the same researchers previously believed. (See the January 10, 2012 post.)

Progress in societal supports for people with IBS:

In 2011, the U.S. Department of Veterans Affairs officially recognized IBS as a presumptive, service connected disability for the purposes of disability compensation for veterans and service members who have served in the Persian Gulf/Southwest Asia region since 1990.  (See the August 12, 2011 post.)

Largely through the efforts of our peers in the inflammatory bowel disease community, most U.S. states with existing Restroom Access Acts/Ally’s Law, have adopted them sometime in the years since 2008. (See the February 20, 2012, August 21, 2012 and November 2, 2012 posts.)

Progress in advocacy:

IBS Impact did not exist in April 2008. Although IFFGD was founded in 1991, its grassroots arm, the Digestive Health Alliance, was not yet operating either six IBS Awareness Months ago. Among other things, DHA has now seen the IBS/functional GI community through a U.S. House of Representatives resolution on IBS awareness in 2010, has been an ongoing advocate on behalf of veterans who are disproportionately affected by functional GI disorders like IBS,  and is now shepherding the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. (See the March 2, 2013 and March 18, 2013 posts for more information on HR 842.)

These are just a handful of positive steps forward for the IBS community on many levels over the past five years. There are many more. Obviously, we still have very far to go before all people with IBS have all the medical and social supports that we need for fully productive lives, with or without IBS,  but progress is being made. There are reasons for hope, especially if more of us do our part for self-advocacy and awareness in the years and IBS Awareness Months to come.

Guest Post for IBS Awareness Month: Stigma and Chronic Illness

This week’s guest blogger is Tiffany Taft, PsyD. of Oak Park Behavioral Medicine, LLC. and Northwestern University Feinberg School of Medicine. Dr. Taft and her partner in private practice, Stephanie Horgan, LCSW, work with adults and children with a range of chronic medical conditions, with a special interest and expertise in gastrointestinal disorders like IBS and IBD. Dr. Taft and Ms. Horgan also share blogging at “Mind Your Body.” Thank you to Dr. Taft for volunteering to write for IBS Impact about her ongoing research interest of stigma, how it relates to the need for greater IBS awareness, and what readers can do to further that cause. To participate in some current research studies for IBS involving Dr. Taft or her colleagues, see the Northwestern Center for Psychosocial Research in GI.

“What did you do this time to get sick?”  “You’re just too stressed out, get a grip.”  “How can your symptoms be that bad when there’s nothing medically wrong with you?”

How many people living with IBS have heard some version of these statements at some point in their life?  While not unique to IBS, chronic illness stigma is a pervasive and complex problem that impacts millions of people every day.  You may have heard the term stigma before, which originated in ancient Greece to refer to bodily signs to expose something unusual or bad about the moral status of a person.  In 1963, the sociologist Erving Goffman expanded the concept of stigma to include:

“An individual possesses an undesired differentness from what [people] had anticipated…we believe the person with a stigma is not quite human…we may perceive his defensive response to his situation as a direct expression of his deficit and a justification of the way we treat him.”*

The effects of stigma on patient outcomes are widely documented, with the most research being done with those living with mental illness or HIV/AIDS.  From these studies, we know that stigma can do the following:

• Increase the risk of an illness to relapse.
• Decrease the likelihood that a person will take their medication as prescribed.
• Increase feelings of anxiety or depression.
• Decrease a person’s quality of life.
• Increase feelings of social withdrawal and isolation.

So what makes an illness more likely to be stigmatized?  Perhaps surprisingly, an illness that is invisible or concealable is more likely to be stigmatized than one that is more obvious to others.  The more disruptive the symptoms are, the more likely a condition is to be stigmatized.  A disease that has periods of relapse and remission is more likely to be viewed negatively by others.  The origin of the condition, whether it was present at birth, the result of an accident, or seems to be under the person’s control also contributes to stigma.  Finally, the aesthetic qualities of the illness contribute to stigma.

Based on this list, it makes sense that people with IBS feel stigmatized.  IBS is an invisible illness that usually has periods where symptoms aren’t too severe and other times when they can be downright disabling.  The discussion of bowel symptoms like diarrhea, constipation, gas and bloating are generally not welcome in regular conversation, or are met with ridicule.  And because IBS is not well understood, and lacks an underlying obvious organic cause (there are no ulcers in the colon, for example) there is an implication that the symptoms aren’t real, or really as bad as the person says.

In 2009, I published the first study to systematically evaluate stigma perceptions in people living with IBS.  We started the project by interviewing several patients and asking them what their interactions had been like with friends, family, co-workers, and their physicians.  We found that 57% of people we interviewed reported feeling some degree of stigma toward their IBS, and that the greatest sources of stigma came from friends, co-workers and employers.  Themes that were endorsed included that the public has very little knowledge about IBS, the illness is not taken seriously, there’s an implication that symptoms are “all in their head” and self-inflicted.  Logically, many of our study participants were hesitant to tell others that they had IBS for fear of negative reactions.

To follow up with this, I compared the stigma experiences of patients with IBS to those with Inflammatory Bowel Disease (IBD), such as Crohn’s Disease or Ulcerative Colitis.  Participants with IBS reported significantly more stigma, especially from health care providers, with 27% of IBS patients saying they experienced moderate to high levels of stigma compared to 8% of those with IBD.  The finding that people with IBS experience stigma from health care providers is important; anecdotally, I can attest to hearing many stories from my clients with IBS who are frustrated by their interactions with physicians, and with some we work to undo the damage done by the “all in your head” insinuation they’ve received for years.  More recent studies repeatedly show that a positive physician-patient relationship is very important in the successful treatment of IBS, but patients report that their expectations often aren’t met.

So, that’s great, Dr. Taft.  What can be done?  Unfortunately stigma is a tough nut to crack, but thanks to the hard work that’s been done in other areas like mental health and HIV we know what can help reduce the effects of stigma.  One of the best remedies for stigma is increasing awareness, which normalizes a condition and brings it into regular conversation.  Patient advocacy organizations, like IBS Impact, make an enormous difference in spearheading awareness campaigns and educating the public about the condition.   Other things that you can do include:

• Learn and share the facts about IBS and about people who have IBS, especially if you hear or read something that is untrue.
• Listen to the concerns of the people whose attitudes you want to change.  What are their feelings about IBS?  Do they have any fears?  Misinformation?
• Assert yourself.  Be frank with the person and use “I” language, such as “I felt really hurt when you implied I did something to cause my IBS.”
• Generate conversations about the stigma of IBS on a regular basis.  Be creative in doing so, like using Facebook or Twitter to spread the word about IBS stigma.
• Use humor.  This can dispel some of the tension that comes with confrontation and can also disarm a person who is reacting negatively.  For some, this comes more naturally than others.  If this is a strength you have, use it!

I would like to thank Nina Pan of IBS Impact for having me as a guest blogger for IBS Awareness Month.  If you have any questions, feel free to email me at ttaft@opbmed.com.  You can also follow us on Facebook (facebook.com/opbmed) and Twitter @OPBMed.

*Goffman, E. Stigma: Notes on the Management of Spoiled Identity. Simon & Schuster, Inc. 1963

Dr. Tiffany Taft is a licensed clinical psychologist and is a leading expert on the psychological and social issues of chronic digestive illnesses.  She is co-director of Oak Park Behavioral Medicine LLC, a private practice near Chicago, where she works with children and adults with chronic medical conditions.  Dr. Taft is also an Assistant Professor at Northwestern University Feinberg School of Medicine, where she worked in the division of gastroenterology’s Center for Psychosocial Research in GI for 8 years. She has published several articles on psychosocial issues for people living with chronic digestive conditions and was part of a landmark clinical trial for Cognitive-Behavioral Therapy (CBT) as a treatment of IBS.

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

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

April is Irritable Bowel Syndrome Awareness Month 2013

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog published a post entitled “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains the  third most viewed single post on this blog. Here, updated for 2013, are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS,  feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free  for the asking. IFFGD has  free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada. A support group that has been recently formed in early 2013, IBS West Midlands in the United Kingdom, also has created downloadable posters. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and hope to be adding more during this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. For a past discussion of the media and IBS, see the November 6, 2011  post.

6) Participate in a research study so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies on this blog, and on the main website, and many of the resources we link do as well.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. A few years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post.

8) If you absolutely cannot donate directly, use Goodsearch (in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through that organization, you can do so yourself. IBS Impact is a place to talk about these things and get guidance from those of us who are more experienced in one area or another.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.

IFFGD/DHA Advocacy Day 2013 For Functional GI and Motility Disorders

IFFGD’s grassroots arm, the Digestive Health Alliance, has announced Advocacy Day 2013, which will take place in Washington, DC on June 18-19, 2013. Participants will join IFFGD/DHA staff and functional GI and motility researchers in meeting directly with legislators regarding several issues of concern to the digestive health community. These include HR 842, the Functional Gastrointestinal and Motility Disorder Research Enhancement Act of 2013, currently in the U. S. House of Representatives, plus the Department of Defense fiscal 2013 funding for the Peer-Reviewed Gulf War Illness Research Program on behalf of veterans, who experience disproportionately high rates of functional gastrointestinal and motility disorders, the National Institutes of Health budget for fiscal year 2014, and S. 424, the National Pediatric Research Network Act, currently in the U. S. Senate on behalf of children and youth with a range of rare conditions, including some functional gastrointestinal or motility disorders.

The advocacy activities are free of charge and some meals will be provided. However, those traveling to Washington, DC from outside the area must pay for their own transportation and hotel accommodations. IFFGD has secured a group rate at an area hotel for the event if reservations are made by May 20.  Registration for Advocacy Day itself will be open until May 28 at the above link.

IBS Impact supports having as many options as possible for people to choose the advocacy issues that interest them. Add your voice to those in the IBS and functional gastrointestinal and motility disorder community who are already speaking out. U.S. citizens, if you have contacted your legislators before with no results, don’t stop, but try again. Every person, collectively, makes a difference.