Paying It Forward for Irritable Bowel Syndrome (IBS)

February 28, 2017

With various economic and political changes in some of the countries that frequent this blog and our main website, many citizens have started to wonder about the mid-range and long-term future for government and public support for their various interests and causes. This has included concern from some scientific researchers in various fields about their ability to continue their work. While the future remains to be seen, for many people from diverse parts of society, this has sparked increases in private giving to a wide variety of causes. This is a positive development and something IBS Impact hopes more people with IBS and family members will consider for our community the next time they think or say, “Why doesn’t anybody research better treatments… do more awareness… provide services … recognize this need or that need?”

Well, the answer is that some organizations and many researchers and other professionals in the functional GI disorders community indeed do many of those things and have been doing them for quite a while. That their consistent efforts and progress are not generally publicized as well as resources and breakthroughs for other common health conditions,  and these organizations and individuals are not household names all over the world. or even in their own countries, recognizable instantly to any IBS-affected family, let alone the general public, is definitely a problem. Recognition of the IBS community’s existing resources and accumulated medical evidence is something that other sites and groups, both grassroots IBSer-led like IBS Impact and others, and established professionals, have endeavored to address. Just as with IBS itself, advocacy, awareness, education and research are slow. They are unpredictable. They take effort, perseverance, some degree of luck, and more than a little courage when the going gets rough, and many other things.  The still-unmet needs that one could theoretically expand to meet appear endless. But one of the most practical needs for any of this to happen is money. Staff members need to be paid, offices and labs need to be kept open with utilities, phones, computer hardware, software, Internet service, websites, other equipment and supplies, printing and postage for print publications and brochures, travel and fees for conferences and other public speaking or advocacy opportunities, to name just some of the typical organizational or research expenses.

Irritable bowel syndrome is extremely common. It is found in almost all countries on every continent of the globe, in every age group from young children to senior adults, in all genders, ethnic groups, socioeconomic groups, religious or political affiliations or lack thereof. It is not talked about in public as much as many other conditions because for many people in our community, it is deeply embarrassing to discuss problems with related to how we excrete bodily waste.  Many people with IBS who do talk about it find that some people they interact with are uninterested or dismissive. While the occasional minor celebrity has come out in public as having IBS, none of them has sustained interest in publicly supporting the cause, and people who are not directly affected are not going to understand the challenges and take up the cause unless people who are affected– people with IBS and families– make their presence known and show that our cause is worthwhile. Standing around and waiting for hypothetical wealthy people to come along spontaneously, hand over inexhaustible sums for IBS, and bring millions of the general public to our side to fight our own battles is not realistic.

It is up to us, to the extent we are each financially able, to support our own needs and the organizations and research facilities in several countries that already exist to help us. This is true of any health community or other constituency, such as a university alumni association, at least in the way traditional fundraising works in the United States. Historically, support from people with IBS for our own cause has not happened much at all. It is understandable that severe IBS often brings with it greater expenses of various sources and perhaps unemployment or underemployment compared to pre-IBS productivity.  But eight years ago, when IBS Impact was still in the planning stages, one person with IBS stated that if every person estimated to have IBS  in the United States, the United Kingdom and Australia alone donated one of his or her local unit of currency (dollar or pound) per year, we would have over one billion of them.

Almost six years ago on July 22, 2011, very soon after starting this blog, we published a post entitled “Putting Our Money Where Our Mouths Are for IBS,” in which this issue was first discussed in detail, with comparisons to another related health community and explanations of the funding process in the United States. Three years after that, on August 25, 2014, then-current events prompted this blog to revisit and expand upon the topic. Some grassroots crowdfunding efforts like Facebook Causes and the IBSGroup.org donation fund are no longer in existence. But most established not-for-profit organizations and research centers do remain, and the general issues raised in the posts years ago are still the same and will remain that way for years to come.

IBS Impact itself is neither a business nor charity.  From inception, expenses of keeping the main website running and randomly- generated ads off this free blog have been donated by the IBS Impact founder and a succession of webmasters, all people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and maintain our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice. Many, in several countries from which we receive many hits, are linked on various pages of the IBS Impact main site, including the links and research pages. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop  and Amazon Smile in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.

IBS Impact challenges people with IBS and family members– if an IBS organization or medical professional associated with an research entity has ever been helpful to you, or even if you hope they may be able to in the future, think about giving back. Many of us have not have unalloyed positive experiences over the years, but keep the faith. If even one site, one group, one individual in the IBS community has given you hope, information, comfort, direction, remember this. Then find an IBS or GI organization or research center that speaks to your interest, hope, or memory, and consider literally paying it forward to whatever extent you can to improve the future for all of us.


Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017

February 16, 2017

It has come to the attention of IBS Impact that the Irritable Bowel Information and Support Association (IBIS), a national organization in Australia for many years, apparently ceased operations recently. As IBS Impact sites receive many visitors from Australia each year, some have wondered about other good quality, accessible, evidence based-resources for IBS information, support and research, both within Australia and internationally. Below are several suggestions. This is not meant to be an exhaustive listing, but a place to start.

As many people in the IBS community for some time are aware, the low-FODMAP diet for IBS was developed by Monash University researchers almost two decades ago, and in the past several years, has increasingly caught on internationally as an effective symptom management option for many people with IBS. At this time, it is the only IBS diet with significant academic research evidence for helping 70% or more of those who try it to reduce their symptoms. There are now many low-FODMAP resources and low-FODMAP- trained professionals in various countries available, but their information is derived from Monash, or other sources who derive from Monash, whose department of gastroenterology continues ongoing research and refinement of the diet and related resources.

Monash maintains a blog and active social media, and regularly updates an international app, downloadable for  a modest cost, to assist users of the diet in identifying levels of various FODMAP components in listed foods, as well as acceptable serving sizes. It is IBS Impact’s understanding that the money goes back to funding further FODMAP research.  In Australia and New Zealand, a Monash low-FODMAP certification process is available for some packaged food products. On an ongoing basis, the gastroenterology department recruits local people with IBS to volunteer for clinical trials, and in the past, it has suggested the following online directory from the Dietitians Association of Australia to find an Accredited Practising Dietitian experienced in gastrointestinal disorders or other specific medical concerns. Monash’s information and resources on IBS and the low-FODMAP diet are extensive and state of the science.

Another up-to-date, scientifically reputable IBS site within Australia, IBSClinic.org.au,is supported by the Swinburne University of Technology, Royal Melbourne Hospital and St. Vincent’s Hospital, Melbourne and maintained by Dr. Simon Knowles, Clinical Psychologist and Senior Lecturer at Swinburne, with listed contributions from or references to many IBS professionals associated with the above entities or other leading IBS research centers in Australia and elsewhere. The site includes information on causes, medical examinations, treatments, psychological symptoms, general advice for affected adults, affected teens and family members without IBS, a range of IBS-specific and general links within and outside of Australia (IBS Impact thanks the site for an unsolicited link to our main website!), and finally, a password-protected set of free, downloadable validated programs combining mindfulness and cognitive behavioral therapy techniques. Psychological interventions also have well-established international evidence for helping reduce the symptoms, often long-term, of the majority of people with IBS who try them.

The University of Newcastle, Macquarie University, University of Sydney, and the University of Adelaide are other Australian universities known to be active in some aspects of IBS research, either currently or in the recent past.

IBS Impact is not aware at this time of Australia-specific support group options, but many of the online support resources listed on the links page of our main website are international. In its closure notice on its web page, IBIS-Australia suggests IBS Support  on Facebook, a closed, international, evidence-based group of over 25,000 members at this writing. Founded several years ago by a medical student with IBS, it is currently moderated by a team of 9 volunteer administrators from 4 different countries, all of whom have been adults with IBS for many years. In addition, several have educational and/or professional background in science or health care fields and/or education, while others have gained extensive knowledge from reputable sources and contacts over time. Two group administrators, including the IBS Impact founder, initiated and maintain established international, evidence-based IBS sites. The group encourages sharing of experiences and emotional support within group guidelines. Group administrators participate actively to educate members on the science of IBS and proven treatments to the best of current international research on IBS, discourage myths, misconceptions, quack cure scams, and as much as possible, maintain a safe and respectful atmosphere for participants from around the globe, including a substantial Australian contingent.  Thank you to IBIS-Australia for linking the group, unbenown to any group administrator until this week.

If any Australian readers would like to offer other in-country resources for IBS Impact’s consideration in future updates of our sites and social media, please comment here on the blog or contact us through the main IBS Impact website. We hope this information is useful.


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

January 29, 2017

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

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

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

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

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

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

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

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

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

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

 


IBS Network in the United Kingdom Adds New In-Person Support Groups, January 2017

January 13, 2017

As reported by this blog on January 21, 2015 and October 23, 2016, the IBS Network, the United Kingdom’s national charity for irritable bowel syndrome, has been working over the past two years or so to increase local self-help support groups in England. Recently, IBS Impact became aware of three new groups that are scheduled to start this month with IBS Network support.

In addition to existing groups in London and the Leeds/Bradford area,  Alton, Durham and Newcastle Upon Tyne have  joined the list. Each group plans to meet monthly, but schedules and meeting locations vary. The IBS Network support group page gives further details.  IBS Impact suggests that interested people confirm directly with the group leader for the desired community, using the provided contact information, in case of any changes.

At this time, three one-day training dates in 2017 for potential support group leaders remain. The IBS Network welcomes both interested people with IBS and professionals to volunteer. At this time, the trainings will be held in Sheffield, at venues near the IBS Network office, but if there is sufficient interest, other locations will be considered. Based on details previously provided by the IBS Network,  one can anticipate a several hour event with breaks, for which IBS-friendly refreshments and lunch will be provided.

For further information, please see the same link above or contact Sam Yardy directly at sam@theibsnetwork.org

Over the years, including on January 12, 2015,  IBS Impact has written extensively about how in various countries, in-person support and other services for people with IBS and families in their own local communities tend to be hard to find. Either they don’t exist, unless one happens to live near a major functional GI research center, or if they do exist, enough people with IBS and health care or social service providers they may deal with simply do not know they are there. Fortunately, online resources for IBS information and support, some higher quality than others, are well-established means of communication, but even in the social media age, not everyone is comfortable online, and it remains difficult for many newly-diagnosed and veteran IBSers alike to sort through which sites and groups are reputable and useful and those that are not. Individuals differ, and even with the same individual, preferences, needs and logistical concerns may change in different circumstances or phases of life. IBS Impact advocates increasing a range of programs and means of reaching people so that people with IBS and families have choices, and is pleased for our readers in England that the options available to them are expanding.

For our readers elsewhere, please see the main IBS Impact website links page, last updated in December 2016, for some existing IBS organizations and online support groups in several English-speaking countries. Some have a country-specific focus, but many welcome international participation. Readers are also welcome to contact us  with new resources that may become available from time to time. Such suggestions will be given thoughtful consideration.


IBS Impact’s Top 25 Countries and Top 10 Posts of 2016

January 1, 2017

For this first week of the New Year, IBS Impact is once again participating in the common December-January blogger tradition of highlighting popular posts and interesting blog statistics from the year just past.

This blog reached readers in 131 countries and territories during 2016, which is an annual record just short of the cumulative 133 for the five years WordPress has made country statistics available to individual blog owners. Both the number of visitors and total number of hits increased by almost 230% over 2015, also records,  largely because of this blog’s coverage of the May 2016 release of the Rome IV international diagnostic criteria, despite half the number of posts published this year.

While, predictably, the top 5 countries this year are ones where English is an official or major secondary language, total blog hits span every continent, underscoring that IBS is a global problem, not the common, inaccurate stereotype of it as a nuisance disorder caused by overindulgent North American diets and lifestyles. A list of the top 25 better reflects the diversity of countries of origin represented, which appears to change somewhat every year. It is hoped that the vast majority are legitimate visits, even from those who might not have been searching specifically for information about IBS, and not simply potential spammers. In order, the countries are:

1.  United States

2. United Kingdom

3. India

4. Canada

5. Australia

6. Italy

7. Brazil

8. Mexico

9.  South Korea

10. Saudi Arabia

11. Japan

12. Egypt

13. Colombia

14. Spain

15. Turkey

16. Vietnam

17. Romania

18. Thailand

19. Netherlands

20. Singapore

21. Russia

22. Taiwan

23. Portugal

24. Germany

25. Indonesia

Below are the top 10 individual posts that received the most hits during 2016. The #1 post on the Rome IV criteria was published in early June of this year, and the number of hits on this important topic is about 9 times that of the #2 post. The #2 post, on functional gastrointestinal disorders like IBS being classified as service-connected disabilities for U.S. military veterans, was originally published in 2011, soon after the inception of this blog, and held the top spot consistently every year and cumulatively from 2011 through 2015 until the release of the Rome update in May 2016.

Most of the posts in the list were first published in 2011 through 2015. However, they continue to attract attention because they address topics that are of ongoing concern to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful. In order, the posts are:

1. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Unveiled May 2016, June 9, 2016

2. Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans,  August 12, 2011

3. New Rome IV Diagnostic Criteria for Irritable Bowel Syndrome (IBS) Will Include Individualized Clinical Profiles, October 11, 2015

4. The Americans with Disabilities Act (ADA) and Irritable Bowel Syndrome (IBS), July 30, 2012

5. Irritable Bowel Syndrome (IBS) and a Debate on “Can’t Wait” Cards,  November 25, 2012  Please note that the blog originally linked in the above post as a basis for discussion no longer exists on WordPress.com. However, the ideas raised and the invitation by IBS Impact for readers and the IBS community to continue to discuss related concerns are still valid.

6. Education Laws and Resources for Students with Irritable Bowel Syndrome (IBS), August 27, 2013

7.  Public Restroom Access and Irritable Bowel Syndrome (IBS), February 21, 2012

8. Massachusetts Enacts Restroom Access Act,  August 20, 2012

9. Restroom Access Act (Ally’s Law) Updates in Maryland and Maine, May 10, 2013

10. Representative Joyce of Ohio Co-Sponsors HR 2311 for Functional Gastrointestinal and Motility Disorders, June 28, 2016

This blog was begun in July 2011, a few months after the launch of the main IBS Impact website, and a bit over a year after the inception of IBS Impact itself. It is intended as a supplement to the many resources on our main site, one that can be updated relatively quickly with time-sensitive news, advocacy and clinical trial opportunities, as well as providing well-researched, scientifically reputable information on IBS and commentary on broader issues affecting the IBS community that may not be widely discussed on other sites. It is meant to be useful to a broad readership: people with IBS and related conditions, both those who may have lived with IBS for some time and those with recent onset or who are new to IBS sites online, family members and friends, health care and human service professionals who may interact with us, and the general public. We are pleased that it continues to fulfill this role.

IBS Impact wishes everyone a happy, healthy, prosperous and productive New Year and looks forward in 2017 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.


A New Website for IBS Impact.com, December 2016

December 25, 2016

After a brief hiatus of a few weeks, our main website, IBS Impact.com is back up and live. The site has been moved to a new web host, webmaster and design template. Information and links on all pages have been completely updated to remove or replace outdated material and links,  streamline the look, resolve technical issues, and improve overall site security and stability. It is hoped that these changes will also allow easier and faster updates in the future for IBS Impact volunteers.

Most links embedded in posts on this blog or search engine results relating to IBS Impact.com should still work, although some from several years ago may result in error messages. You  should still reach the site itself. If this occurs, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site.

Our site includes evidence-based information on IBS, advocacy, research, clinical trials, resources and articles by people with IBS, families and professionals, separate pages for families and friends and parents of children and teens with IBS, and various links in six countries. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material. Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog).

Please feel free to check out the new site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, reputable information and resources to people with IBS and their families and friends, and to encourage informed choices, proactive self-advocacy and public awareness of IBS and the unmet medical or social needs many of us face as a result of IBS.

IBS Impact, as an entity, is not directly affiliated with any other organization, site or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations, and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Special thanks to several volunteer friends of IBS Impact who assisted in various aspects of relaunching the site. Their work is essential to IBS Impact and the cause.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered.  A contact form can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.


Temporary Hiatus for IBS Impact Main Website, December 2016. Back Soon!

December 7, 2016

Our main website, IBS Impact.com is currently down for technical changes and updates. As a result, links on this blog or in web searches  to resources or the contact form on the site will not work for the time being. Work is being done behind the scenes, and we hope to be back up shortly with an improved site. In the meantime, this blog and our social media accounts remain active. If you do not already, please follow them for the latest news and resources, and check back at the main website later. Thanks to all our visitors for their interest!