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!


GERD Awareness Week: November 20-26, 2016

November 21, 2016

This week is the annual GERD Awareness Week. Gastroesophageal reflux disease, like IBS, falls under the broad category of functional gastrointestinal and motility disorders, and many people with IBS also have GERD. According to About.com IBS Guide Barbara Bradley Bolen, PhD, some studies show that over 70% of people with IBS report some symptoms of GERD and vice versa, but that among those with actual diagnoses, the overlap rate ranges from about one-quarter to one-third. GERD occurs when the lower esophageal sphincter, the valve connecting the esophagus to the stomach, fails to close completely and consistently when needed, and stomach acids and digested food inappropriately back up into the esophagus on a recurring basis. GERD is estimated to affect at least 20% of American adults, both men and women. GERD also commonly affects children of all ages, including infants. A wide variety of lifestyle factors, medical conditions and medication side effects are thought to be possible factors in causing or exacerbating GERD.

Symptoms vary from person to person and are not restricted to heartburn. Some people may not have noticeable symptoms at all until they experience complications. Some other possible symptoms of GERD are: belching, coughing, hoarseness, difficulty or pain in swallowing, excessive saliva, the sensation of food sticking in the esophagus,  chronically sore or irritated throat, laryngitis, inflammation of the gums, erosion of tooth enamel, bitter taste in the mouth, and bad breath. Chest pain may also be a symptom of GERD, but should receive immediate medical attention to rule out the possibility of cardiac problems or other serious conditions. Other possible symptoms of GERD occurring more than once a week or the need to use non-prescription heartburn/reflux medications for more than two weeks without resolution should be discussed with a doctor.

Relative to other functional gastrointestinal and motility disorders, GERD is generally considered by physicians and many affected people to be quite treatable by a variety of lifestyle and diet modifications, prescription medications and/or surgery. Many people have mild GERD and, with appropriate medical care, are at low risk of serious complications, but untreated GERD can lead to inflammation, erosion or narrowing of the esophagus or, in a small percentage of cases, Barrett’s esophagus, cell changes that heighten the risk of esophageal cancer. According to a brief extract of a longer IFFGD publication by Carlo DiLorenzo, M.D. of Children’s Hospital of Columbus and Ohio State University, Dr. Mark Glassman, MD of Sound Shore Medical Center in New Rochelle, New York, and Paul Hyman, M.D. of Children’s Hospital in New Orleans, Louisiana, some children with GERD and other conditions such as asthma, cystic fibrosis, abnormal lung development due to premature birth, muscle or nerve disorders affecting swallowing, or esophageal dysplasia, are at risk of GERD complicating those conditions.

Please see the following links for further information and resources and the original source for Drs. DiLorenzo, Glassman and Hyman’s work mentioned above.  IFFGD also offers downloadable GERD, IBS and functional GI and motility disorder awareness brochures and posters for anyone to hang or distribute in his or her own community, that are accessible from the IFFGD links posted here. As American Thanksgiving is approaching this week, readers may find IFFGD’s holiday GERD-reducing tips to be particularly useful.

 GERD Awareness Week section from the IFFGD About GERD website

Pediatric GERD section from the IFFGD About Kids  GI website

Medline Plus page on GERD  (subunit of the U.S. National Institutes of Health)

In addition to encouraging accurate awareness of irritable bowel syndrome, IBS Impact encourages awareness of related conditions that are known to often overlap with IBS, as improvement in symptom management, treatment options, public awareness and social resources may have overlapping positive effects that improve quality of life for some people with IBS. With the high prevalence of GERD in the general public, many people who are not otherwise aware of or who do not take particular interest in functional gastrointestinal and motility disorders may actually have GERD or be close to someone who does. This is another opportunity to educate them about GERD and about FGIMDs in general as issues that do indeed involve them.


Veterans with IBS and Functional Gastrointestinal Disorders 2016

November 11, 2016

Today, November 11, is Veterans Day in the U.S., and a good time to highlight veterans’ issues. U.S. veterans  and current military service members who have been deployed in the Persian Gulf/Southwest Asia region at any time since 1990 have been shown by multiple studies to be at even higher risk of IBS and other functional GI disorders than the general population. Conservative estimates put the incidence of functional GI disorders in the general population as 25%, most commonly irritable bowel syndrome. For veterans and military service members of the Persian Gulf era, the estimate may reach as high as 40%. This appears to be in part because of the high incidence of known functional GI risk factors during active duty, such as severe stress or trauma and/or food or water contamination that results in post-infectious IBS  (IBS-PI) or other post-infectious functional GI and motility disorders.

Here is IBS Impact’s August 12, 2011 post on the recognition four years ago by the U.S. Department of Veterans Affairs of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans.

IFFGD has done considerable work in the past several years in advocating for federal funding and other legislative needs specific to veterans, conducting outreach to service members and veterans and encouraging those affected by functional GI and motility disorders to participate in veteran-specific self-advocacy efforts. Since fiscal year 2012, functional GI disorders have been included in the Department of Defense Gulf War Illness Research Program, which is part of the Congressionally Directed Medical Research Program. However, advocacy from the veteran community and supporters must occur on an ongoing basis for funding to be continued each fiscal year. Interest in veteran issues has been one reason for Congressional support of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2015, HR 2311, currently in the House of Representatives, aimed toward improving the lives of affected veterans and civilians alike, and must continue to build.

As this blog reported on January 20, 2014, the depth of need for further awareness, services, support, and research in the veteran community is not necessarily well known even within the Department of Defense or other military entities, the media or the general public. The post linked in the second paragraph of this post about the recognition of IBS and other functional GI disorders as presumptive service-connected disabilities, more than five years after original publication, has continued to receive consistent hits from readers nearly every day. By an extremely wide margin, from the inception of this blog in mid-2011 through 2015, it was the #1 most read individual post, of over 200 cumulative posts on this blog. It was also the #1 most read post for each individual year.  Not until the release of the Rome IV international diagnostic criteria in late May of this year, did it drop to #2 on the all-time and 2016-to-date lists.Clearly, a very strong need exists for information and resources on this topic. It is hoped that given the relatively higher impact of functional GI disorders among veterans and service members, and their relatively higher profile as a constituent group, any advances on behalf of the affected veterans and service members will eventually carry over to people with functional GI disorders in general.

IBS Impact encourages veterans, service members and families in the IBS and functional GI community, as well as those who support them,  to familiarize themselves with the issues and resources, and to consider participating in self-advocacy activities. We look forward to feedback from readers as to how IBS Impact may be able to support such efforts further.


IBS Network in the United Kingdom Offers Free Training for In- Person Support Group Leaders

October 23, 2016

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 are very 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 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 vary 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.

This presents an ongoing challenge for our global IBS community that is likely to continue. However, as this blog also reported on January 21, 2015, the IBS Network, the United Kingdom’s national charity for irritable bowel syndrome, has been working to increase local support groups in England.

Recently, the organization has instituted a series of free one day training programs for those who may be interested in becoming IBS local support group leaders. The IBS Network seeks both health care professionals and people with IBS, and will provide appropriate resources and organizational support for these groups.

The first training date for October 2016 has already passed, but several more are planned through 2017. 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 a draft schedule for the first session, 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 following link from the IBS Network website or contact Sam Yardy directly at sam@theibsnetwork.org

https://www.theibsnetwork.org/self-help-groups/

IBS Impact encourages readers within easy traveling distance of Sheffield and time to volunteer for the IBS community to consider this important opportunity.