A Perspective of 5 Years and 6 IBS Awareness Months

April 24, 2013

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

April 15, 2013

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

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


April is Irritable Bowel Syndrome Awareness Month 2013

April 1, 2013

UPDATE 4/1/2014: This is a revised version of a post originally written in April 2012. The post is traditionally updated every April to reflect current information, resources and links. For the most recent version, click on the April 1, 2014 post.

 

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.