International Foundation for Functional Gastrointestinal Disorders (IFFGD) Seeks Volunteers for New Patient Panel, June 2018

The International Foundation for Functional Gastrointestinal Disorders (IFFGD) is an established, reputable U.S. based 501c3 not-for-profit organization/charity focused on irritable bowel syndrome (IBS) and related functional gastrointestinal disorders, also known as disorders of gut-brain interaction. IFFGD was founded in 1991 by an FGID-affected family and continues to have people with FGIDs or family members/supporters among its staff. IFFGD is a science-based organization with leading FGID clinicians and researchers from 11 countries on its advisory board.

Now IFFGD is reaching out to people affected by FGIDs, including IBS, as well as concerned family members and friends, to join a new Patient Panel. This involves occasional opportunities to give IFFGD feedback on the needs and experiences of our community, IFFGD’s programs and services, and to participate in IFFGD’s awareness and advocacy efforts. IFFGD is not asking for a specific time commitment or obligating panel members to respond to every opportunity, simply identifying those who are interested in being contacted and willing to participate in some of the potential requests. If you wish to volunteer, you may indicate this to IFFGD staff at the following link.

http://www.surveygizmo.com/s3/4361777/IFFGD-Patient-Panel

IBS Impact encourages affected people and family members who wish to make a real difference in services to the IBS/functional gastrointestinal and motility disorders community to consider this important opportunity.

Online Study: Cognitive Mediators of Bowel Discomfort Validation Study, Swinburne University, Australia, June 2018

The following study currently seeking men and women at least 18 years old in any country with chronic gastrointestinal conditions is a followup to an online study posted here on August 12, 2017.  The 2017 study is now closed to new volunteers.

The current study has received institutional ethical approval. All information available to IBS Impact is below and at the study link. Please address any further questions or concerns directly to the research team at the phone number or email address given below. This description is adapted from excerpts of the one on the study page.

In 2017 we conducted a study which developed a new scale (Cognitive Mediators of Bowel Discomfort Scale) to assess cognitive processes associated with bowel discomfort. We are now conducting a new study and looking for both male and female participants who are at least 18 years of age. The current project is exploring how responses to the Cognitive Mediators of Bowel Discomfort Scale relate to other similar scales. …

…Your responses will help us better understand how thinking patterns impact upon gastrointestinal discomfort. Further, your participation will also help us to evaluate our new scale against other similar scales. We hope that the validation of our new scale will lead to better ways to measure and assess common cognitive factors associated with bowel discomfort.

Estimated time commitment is 30 minutes. All information provided is anonymous. At the completion of the study, participants may opt in to providing an email address for a random drawing to receive one of four AUS $100 Amazon gift cards and/or being contacted about future studies, but this is not required.

https://swinuw.au1.qualtrics.com/jfe/form/SV_3kHEHoJXWwlcORn

For more information, please contact the research team: Principal Investigator: Dr Simon Knowles, (Senior Lecturer and Clinical Psychologist ) 61 (03) 9214 8206, email: sknowles@swin.edu.au 

Other investigators involved: Dr Pragalathan Apputhurai (Lecturer in Statistics), Dr Rebecca Burgell (Consultant Gastroenterologist, The Alfred Hospital), Mr. Stephan Moller (Research Assistant) & Professor Laurie Keefer (Health Psychologist, Susan and Leonard Feinstein IBD Clinical Center, New York).

IBS Impact welcomes researchers affiliated with academic, medical or pharmaceutical entities, or reputable organizations representing IBS or related or commonly overlapping conditions, to contact us directly with additional studies or surveys they wish to be considered for posting. A contact form is available on the main IBS Impact website.

IBS Impact makes these announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation. Additional studies can be found by clicking on the Research– Clinical Trials sub-category in the right sidebar of this blog on our main website IBS studies page. Please be sure to check the date at the top or bottom of a given post, as many posts from this blog remain visible in search engines for several years, and studies stop accepting volunteers or conclude the trials after a period of time. IBS Impact, as an entity, is not directly affiliated with any research sponsor or organization and receives no funding from any source for studies, surveys or links we feature on this blog, the main site or social media.

Representative Price of North Carolina Co-Sponsors HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov,  Representative David Price (D-NC-4) signed on in late May 2018 as a co-sponsor of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017.

Representative Price is currently serving his sixteenth non-consecutive term in Congress representing the 4th District of North Carolina, which currently encompasses much of the Triangle region in the central part of the state, including parts of Durham, Orange and Wake Counties and parts of According to his official House website, Representative Price is currently a member of the Committee on Appropriations, where he supported increases in funding to the National Institutes of Health. He also is a member of the Subcommittee on Homeland Security, which has jurisdiction over many pieces of legislation concerning the military. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population. In the 112th and 113th Congresses in 2011-2012, and 2013-2014 Representative Price was also a co-sponsor of HR 2239 and HR 842, previous versions of this Act, which were not passed by the House of Representatives at those times. IBS Impact commends Representative Price for renewing his support.

In officially supporting HR 1187, Representative Price joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), Ron Kind (D-WI-3), Gwen Moore (D-WI-4),  Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19) and Representative John Faso (R-NY-19). If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

DNA Variants on Chromosome 9 Appear To Be Associated With Irritable Bowel Syndrome (IBS) in Some Women

In April 2018, the journal Gastroenterology published an article that an international collaboration of researchers headed by the Karolinska Institutet in Sweden, has identified several DNA variants on Chromosome 9 that may be associated with higher risk of IBS in women, particularly IBS with constipation. This possible correlation was not found in men. The identified chromosomal regions are similar to those believed to influence the timing of sex hormones, puberty and first menstruation, and may partially explain why known cases of IBS are more common in women than men in most countries of the world.

According to an English-language news summary on the Karolinska Institutet website, these findings were based on extensive data from 300,000 individuals whose genomes were available in the United Kingdom’s Biobank and 2045 people with IBS associated with research and treatment centers in Sweden, Belgium, the Netherlands and the United States. Author information on the journal article in question reveals the involvement of scientists in Sweden, the United States, Australia, Germany, Italy, Spain and the Netherlands. In most of the listed countries, research centers from multiple universities were represented.

While these are exciting discoveries, more research is needed. It should be emphasized that IBS is a complex disorder arising from many factors that likely vary with the individual. The researchers have not identified the specific genes on Chromosome 9, nor is this recent discovery the full answer. Over the past three decades, various studies have established that people with IBS are more likely to have close relatives with IBS than the general population, but the percentages of those self-reporting known family history have varied, and represent only a subset of all people with IBS.  It is still not definitively established how much influence genetics have versus a range of environmental factors, even within families, and many people with IBS have no known prior family history of IBS.

Furthermore, there may be other genes on other chromosomes involved in some cases of IBS as well. As reported by Yuri Saito Loftus, MD, MPH of the Mayo Clinic in the U.S. in 2011,To date, over a hundred genetic variants in over 60 genes from various pathways have been studied in a number of candidate gene studies with several positive associations reported.” On September 26, 2014, this blog alerted readers to another international collaboration, this one led by the Mayo Clinic, that identified a specific gene mutation thought to account for an estimated 2.2% of cases of IBS, although this cannot be tested clinically in specific patients at this time.

Genetics are among the many areas of IBS research that continue to be actively pursued, including by the GENIEUR.EU network established several years ago by IBS experts to collaborate for this purpose. Its membership has grown over time, now including 25 European countries, Australia, Chile, Israel and the United States, again, often with several participating research centers per country. The continuing work of all of these researchers and many others is a reason for hope that in the future, there will be clearer answers on the origins of irritable bowel syndrome and related disorders.

 

Representatives Carson, Payne, Lofgren and Faso Co-Sponsor HR 1187 for Functional Gastrointestinal and Motility Disorders

According to IFFGD and the official Congressional legislative database Congress.gov, four members of the U.S. House of Representatives signed on in April and thus far in the first half of May 2018 as co-sponsors of the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017. They are Representative Andre Carson (D-IN-7), Representative Donald Payne, Jr. (D-NJ-10), Representative Zoe Lofgren (D-CA-19) and Representative John Faso (R-NY-19).

Representative Carson, who was first elected the House of Representatives in an special election in 2008, is now serving his fifth full term in Congress. He represents Indiana’s 7th District in the central part of the state, which encompasses most of Marion County and the city of Indianapolis.  According to Representative Carson’s official House website, he  has a record of supporting health care and veterans’ issues. 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. He was also a co-sponsor of HR 842, and HR 2311, previous versions of the same bill that did not pass. IBS Impact thanks him for his long support of the functional gastrointestinal disorders community.

Representative Payne, who was first elected to the House of Representatives in 2012 to complete his father’s term after Donald Payne, Sr.’s death, is currently serving his third full term in office. He represents the 10th District of New Jersey, which includes parts of Essex, Union and Hudson Counties. According to Representative Payne’s official House website, he currently belongs to the House’s Men’s Health Caucus and has a record of supporting several health-related bills. IBS Impact appreciates his support of HR 1187.

Representative Lofgren is now serving her twelfth term in Congress. She represents the 19th District of California, which encompasses parts of Santa Clara County, including most of the city of San Jose and the cities of Morgan Hill and Gilroy. According to Representative Lofgren’s official House website, she currently is a member of numerous caucuses for specific medical conditions and  has a record of supporting health care issues, This notably includes co-leading a 2014 letter from several Representatives to the National Institutes of Health advocating for increased research funding for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), which often overlaps with irritable bowel syndrome (IBS). She was also a co-sponsor of HR 2311, a previous version of HR 1187 that did not pass. IBS Impact thanks her for her continued support of the functional gastrointestinal disorders community.

Representative Faso is serving his first term in the House of Representatives. He represents New York State’s large and wide-ranging 19th District, which is comprised of all of Columbia, Delaware, Greene, Otsego, Schoharie, Sullivan, and Ulster Counties, and portions of Broome, Dutchess, Montgomery, and Rensselaer Counties in the Mid-Hudson Valley, Capital Region, Catskills and Central New York. According Representative Faso’s official House website,  he has already supported several legislative efforts related to health and veterans. IBS Impact appreciates his co-sponsorship of HR 1187.

In officially supporting HR 1187, Representatives Carson, Payne, Lofgren, and Faso join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, and co-sponsors, Representatives Mark Pocan (D-WI-2), Eliot Engel (D-NY-16), Dave Loebsack (D-IA-2), Alcee Hastings (D-FL-20) Tom Suozzi (D-NY-3), Ron Kind (D-WI-3), and Gwen Moore (D-WI-4).  If you are a constituent of any of these legislators, please take a few minutes to call, write, or contact him or her on social media to thank him or her for his  support of the functional gastrointestinal and motility disorders community.

U. S. citizens, if your Member of Congress is not yet a co-sponsor of HR 1187, please see the previous post from March 21, 2017 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 2016 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 1187 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 1187.

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 1187 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 115th,  the necessary number of sponsor/cosponsors must be reached by December 2018. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 1187 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, HR 842 in 2014 and HR 2311 in 2016. 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 1187 as they occur. Links to the social media sites can be found on the right sidebar of the blog.

10 Years and 11 IBS Awareness Months: Progress for the IBS Community Continues in 2018

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

Five years ago, on April 24, 2013, I wrote a post for IBS Awareness Month that began with some reflections on my personal experiences with IBS, as well as my motivations for IBS Impact. At that time, I had been living with IBS for over five years, and 2013 marked my sixth April with IBS. I observed how for many of us, dealing with the numerous actual or potential effects on a day to day basis often makes it difficult to recognize when progress is being made, either for us as individuals, or for the IBS community as a whole. I stated that it is only with the passage of time that I had begun to realize how some things are indeed changing, albeit slowly, for the better. In the rest of the post, I pointed out numerous areas in IBS research, IBS treatment, understanding of the impact of IBS on quality of life, increased societal support and advocacy that had seen concrete, positive change in just the five years and six IBS Awareness Months I had personally experienced.

On April 10, 2014 ,  April  14, 2015, and April 29, 2016,  and April  30, 2017, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own tenth year with IBS, just a week after my eleventh IBS Awareness Month, once again, I can observe many  small steps forward in just a single year.

Progress in the science of IBS:

In the past year, the science of IBS has continued to expand in many areas. These include, but are not limited to,  genetics, the pathophysiology of pain in post-infectious IBS, diet, cognitive behavioral therapy, the subtyping of IBS, and  the prevalence and impact of people having more than one functional GI diagnoses.  Particularly intriguing and important among published IBS research in the past year are a study mentioned on this blog on June 14, 2017 that links for the first time, IBS-related alterations in the gut microbiome to changes in the brain, and another, released just a month ago in April 2018, in which DNA variants on chromosome 9 in similar areas to those controlling the timing of puberty appear to be associated with some instances of IBS in women, though not in men.

These varied endeavors are taking place in or with the involvement of many scientists from many countries, and very often, volunteers with IBS from multiple countries per study as well.  See other posts in the Research category of the blog sidebar, the IBS studies page of our main website  or our Facebook or Twitter feeds to see the range of research news and clinical trial opportunities publicized over the most recent several months. The annual Digestive Disease Week international gastroenterology conference taking place shortly in early June traditionally provides even more state of the science research news each year.

In the fall of 2017, as posted on this blog on September 30, 2017, Macquarie University in Sydney, Australia and the County Durham and Darlington NHS Trust Contact Me-IBS  pilot project in the United Kingdom each established registries for adults interested in the future possibility of becoming volunteers for functional GI/IBS research. If the NHS endeavor proves successful, the hope is to expand it to other locations in the United Kingdom. In each case, the goal is to facilitate communication and connection between researchers seeking willing people with IBS and those affected individuals who wish to do their part in contributing to the science of IBS.

Progress in the diagnosis and treatment of IBS:

 Over the past three and a half years, this blog has often reported on the development of Rome IV criteria, the latest update to the international symptom-based diagnostic criteria for functional gastrointestinal disorders like IBS, which was officially published and presented to the international gastroenterology community in May 2016.  This latest update reportedly involved over 100 experts from numerous countries. The Rome criteria, which are said by leading IBS researchers to be 98% accurate for most people with IBS symptoms, have been in existence in some form for 27 years, although research shows that many people with IBS and medical professionals who do not specialize in IBS remain unaware of this. Since the launch of Rome IV and continuing in the past year, the Rome Foundation members have made Rome IV print and online materials and webinars available to educate fellow health care professionals, including new outreach to primary care physicians and those from regions of the world historically underrepresented in the field. The Foundation also initiated mentoring to promising young functional GI researchers, and in March 2018, the print version of “Neuromodulators for Functional Gastrointestinal Disorders (Disorders of Gut−Brain Interaction): A Rome Foundation Working Team Report was published in the journal Gastroenterology to provide guidance on medication issues.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. In the summer of 2017, the National Institute for Health and Care Excellence (NICE) in the United Kingdom issued a Final Appraisal Determination, clearing the way for eluxadoline (brand name Truberzi in Europe, Viberzi in North America) to be available through the National Health Service for adults with IBS with diarrhea (IBS-D).

In January 2018, plecanatide, also known by the brand name Trulance, and previously available in the United States for use in chronic idiopathic constipation, was approved by the U.S. Food and Drug Administration (FDA) for treatment of irritable bowel syndrome with constipation (IBS-C). The FDA, in its regulatory role in early 2018, also solicited feedback from U.S. women using Lotronex (alosteron hydrochloride) and facilitated a workshop for scientists, organizations, patients and other stakeholders to discuss IBS-C in children.

According to various social media IBS professional sources, a centralized directory of GI psychologists and hypnotherapists is currently in development and due to be available very shortly.

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

In April 2018, in time for IBS Awareness Month, the Gastrointestinal Society in Canada released a 38 page 2018 IBS Global Impact Report, which is available for download on its website.  This report was funded and facilitated by the international pharmaceutical company Allergan, and overseen by a steering committee composed of Maura Corsetti, MD of the University of Nottingham in the United Kingdom, Jan Tack, MD of the University of Leuven in Belgium, Gail Attara, President and CEO of the Gastrointestinal Society, and Michelle Sewell, IBS support group representative for the Gastrointestinal Society. The report incorporated  peer-reviewed literature and surveys of people with IBS and families in numerous countries, including Canada, the United States, Australia and Spain over the last several years, and made recommendations accordingly. Some of this data was drawn from the Gastrointestinal Society’s own 2016 national survey across Canada of adults with IBS and parents of children with IBS. This Canadian survey was previously discussed on this blog on January 29, 2017 and January 26, 2016.

In early 2018, the International Foundation for Functional Gastrointestinal Disorders (IFFGD), in the U.S., which has transitioned to new leadership over the past year, has begun reaching out to some of its active FGID-affected members and families for “patient advisory” roles to gain feedback on IFFGD materials and programs. IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its efforts  this past year in its ongoing efforts to expand the availability of local, in-person self-help/support groups and group facilitator training for people with IBS in the UK. as originally reported by this blog on October 23, 2016 and January 13, 2017.

Monash University in Australia, developers of the low-FODMAP diet that is effective for reducing symptoms for many people with IBS, continues to test specific foods and product brands in several countries, in some cases, leading to revision of its previous recommendations.  It also adds new countries as research and resources permit. Monash also has a low-FODMAP certification program, whereby food product manufacturers whose products have been tested by Monash as appropriate for the diet, may display an official certification symbol to alert consumers.In the last year, Monash launched a new, more comprehensive website that can be found at the link..

Progress in awareness and advocacy:

Over the past several months, the American Neurogastroenterology and Motility Society has initiated a series of several chats on IBS and functional GI disorders on Twitter or Facebook that are increasing awareness and education among patients, families and other professionals. One such Twitter chat was mentioned on this blog on December 19, 2017. and there have been several others. Click on the ANMS Facebook page link above to see two chats scheduled for this month. It is hoped that this effort will be ongoing.

The International Foundation for Functional Gastrointestinal Disorders has  continued to shepherd the Functional GI and Motility Disorders Research Enhancement Act through its fourth attempt at passage by the U.S. House of Representatives, with the support of IBS Impact and other groups and individuals. After three previous attempts in the three previous Congresses,  it  was reintroduced in the the current 115th Congress under a different Act number, HR 1187, in March 2017 and has received bipartisan support from Representatives. In April 2018, HR 1187 gained two more co-sponsors from two more states, for a current total of one sponsor and nine co-sponsors from six states.   See the Legislation category, HR 1187,  HR 2311 HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.

IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.  IFFGD reported in the fall of 2017 that the the U.S. Department of Veteran’s Affairs had extended the time by which symptoms must be evident in order for veterans to be potentially eligible under this provision. Additionally, in April 2018, IFFGD reported that the federal government budget allocation through September 2018 includes the largest increase for digestive disease funding for several years. While of course, not all of this is earmarked specifically for functional GI disorders/IBS, since federal funding makes up a large proportion of overall research budgets, this is a positive development. Both of these news alerts can be found at this link.

Within a period of about two weeks in July 2017, leading GI psychologists/researchers Laurie Keefer, PhD, of Icahn Mount Sinai,  Olafur Palsson, PsyD of the University of North Carolina,  and Sarah Kinsinger, PsyD of Loyola University, all received mainstream media attention for their work in gut-directed hypnotherapy in the U.S. national NBC News, the local Chicago FOX News affiliate,  and the national magazine, Women’s Health. As gut-directed hypnotherapy has decades of strong, international research evidence for helping at least 70% of people with IBS to reduce symptoms long term, but it is not well-known outside the functional GI  professional community, let alone in the general public, it was a very positive step to see so much constructive coverage from major media outlets.

IBS Impact continues to make incremental updates to this blog and social media several times a month and to its main website several times a year,amassing archives that thus far cover almost seven years of quality, evidence-based material, resources and personal experiences of those who blog for us.  The number of followers of this blog and our social media accounts continues to increase. Cumulatively, IBS Impact now reaches readers in over 140 different countries and territories on every continent of the globe.

These are just a handful of examples of progress for the IBS community in the past year. Cumulatively, 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 we have come far as well. 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: Looking Back and Paying It Forward: A Life with IBS

IBS Impact is pleased to welcome another guest post for IBS Awareness Month. Jeni Skukowski has IBS and lives in the state of Connecticut in the USA. She works as a Registered Dietitian and is a volunteer co-administrator for the international, science based Facebook IBS support group IBS Support (Official). We appreciate her time and insights.

As we wrap up IBS Awareness Month, I am here to share my experience and thoughts.

Quick background: I have been a Registered Dietitian working in acute care for over 30 years. Now working in long term care. I’ve seen it all. Much on the job training . My passion for science and nutrition started in high school. I’ve had successful career. I’m also a mother to three, the youngest with severe autism including intellectual disability.

Life has had its ups and downs. And IBS has been by my side through the whole journey. As long as I can remember I’ve had abdominal pain, and what is now considered IBS-mixed.

I learned about IBS through my own research, like many of us have. Also like many of us, I was diagnosed in the Emergency Room after many visits over the years for abdominal pain. In the past few years I have been under the watch of caring gastroenterologists.

Two years ago I joined a Facebook IBS support group that is science based. I learned so much from the administrators. I was introduced to FODMAP. I was always in pain at work, especially after eating . My dietitian coworkers were less than supportive and were not schooled in IBS or FODMAP. Very few dietitians are. I lost my job at the end of 2016, despite having FMLA to protect me. Too many days coming in late.

I was thrilled when the admins asked me to join them in the support group admin team. Spending a year unemployed, helping others new to IBS gave me focus and helped me with my depression. Being fired was traumatic. Educating others empowers me.

I learned about IBS and the signs and symptoms, possible causes, and ways to manage it. The following possible causes are intriguing to me, and certainly need more research.

Trauma and Stress:

No question for me that trauma played a role in my bowel issues. I was always having to “go” at any time, and was constipated as a child. My childhood was a cluster of mentally ill parents, mental and physical abuse, and unpredictability. Growing into adulthood, there were the stressors many of us experience: marriage, having children, death in the family, car accidents, divorce, financial difficulties., having a child with a disability. Throughout it all, IBS pain has been with me.

Surgery and Anatomy:

I’ve had many surgical procedures, mostly abdominal. Each surgery rendered me with worse IBS symptoms. The most recent were in the past thirteen years, including an open appendectomy and a hemicolectomy. I am convinced that once they move your bowels around, they never are able to put things back to where they were before. I also have a redundant colon and diverticulosis. I’ve had one bout with diverticulitis, not uncommon in my age group. I recently experienced IBS pain from too much fiber I had binged on. I was convinced it was diverticulitis. IBS pain can be severe. This is what drives people to the Emergency Room. Though it is not the best place to be for a non-emergency chronic condition like IBS, many people are in such desperate pain that they just want it managed.

Microbiome:

I am pretty convinced that over my lifetime I have been exposed to too many antibiotics. Doctors used to dole them out like candy. We know better now. I don’t tolerate probiotics well but did take them when I was on antibiotics for the diverticulitis and I believe they helped prevent diarrhea. But otherwise I do not tolerate them.

Diet:

Learning about the FODMAP elimination and reintroduction diet was a game changer for me. I suffered from terrible gas pains after eating my beloved mushroom soup, artichoke hearts and onion. I have to be very careful with my diet. I don’t tolerate insoluble fiber without suffering for days. I remember as a child having pain after eating apples. It all makes sense to me now.

Support and Advocacy:

It has been my mission to educate everyone around me about IBS. There is so much misinformation or lack of information. I enjoy my contributions to the support group because I am a natural teacher, and my knowledge of nutrition is a bonus. I am passionate about awareness of quackery and false information and I will stop it in its tracks when I can. Some people with a chronic illness are at times desperate for a quick fix. Being in the support group helps me, and I get support in return.

The Future:

We need more research as to the best course of treatment for IBS. This proves challenging as so many people respond differently to what is currently being used, and we all have our own unique microbiome and response to medication and diet. The area of research involving trauma is promising, and opens the door to behavioral therapy. It is my thought that we live in a very heightened state of anxiety, across the globe. The idea of gut-directed hypnotherapy needs to catch on. Physicians and other medical professionals need to be more educated about IBS. I have schooled my GP about FODMAP and he has been supportive, as he is an open minded professor. I talk about IBS to my new co-workers, and not surprisingly some are coming to me complaining of the symptoms. Talking about “TMI” and the stigma attached to it is not always easy in many cultures, but it is the first step in finding better awareness.

Guest Post for IBS Awareness Month: Navigating the UK National Health Service for Irritable Bowel Syndrome (IBS)

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month.  Julie Thompson, RD, known on social media as Jules_GastroRD, is a UK state registered dietitian specializing in IBS and other gastrointestinal conditions. She runs the Calm Gut Clinic in Lancashire, is an advisor to the IBS Network, the UK’s national charity for irritable bowel syndrome, coauthored with Alex Gazzola, IBS: Dietary Advice to Calm Your Gut (Sheldon Press: 2017), and blogs at Clinical Alimentary. We thank her for her time and expertise.

During IBS (Irritable bowel syndrome) Awareness Month, I would like to discuss access to care within the UK National Health Service (NHS). Understanding NHS systems is essential to know what services are available and the referral process. The NHS is seventy years old this year and is held in high regard around the world for its ethos of free care at the time of need. But care is not free; it is paid for by taxes throughout working life, and patients with IBS pay the same level as those patients with other medical conditions. But access is often reported to be poorer by patients with IBS and many patients report struggling to get referred on for further treatment if medications have proved ineffective. During a time of austerity and funding deficits access to NHS services is becoming more difficult.

Except for emergency care, all patients who need any treatment or investigation of symptoms will need a referral from the General Practitioner (GP). A GP is a doctor based in primary care who treats people with chronic or minor medical conditions and refers patients on, who need more specialist investigations, or access to specialist therapies available to help manage symptoms. They are the first port of call to those with digestive symptoms and for those who wish to have access to dietitians or mental health services for treatment of IBS. The GP’s role is often regarded as the ‘gatekeeper’ to services. Many people are diagnosed with IBS during early adult life, which means that it could be the first time that they experience the NHS, and they may not have a good understanding of ‘the system’ or what to expect.

In 2016 an organisation called the National Institute of Health and Clinical Excellence (NICE) produced standards to increase access to quality services for people diagnosed with IBS. The organisation also provides guidelines to those working within the NHS about what quality care looks like and bases these guidelines on evidence of what treatments have been shown to work. Guidelines are just that, a guide, and GPs can choose to use them or not depending on their knowledge of gastroenterology as a specialism and the patient’s individual needs. Standards of care are different; they are developed to drive up access and improve quality of care in the NHS, and as such, it is essential to know what areas of IBS diagnosis and treatment they cover.

Standard one is about the use of a test to exclude inflammatory bowel disease (IBD) during the investigation of IBS. It is called the faecal calprotectin test and is a test that identifies inflammation in the digestive tract. Along with testing for coeliac disease, this test for IBD is important to use. It is a relatively new test, and not all GP surgeries will have access to it at present. This situation is the reason the standard was developed – to increase its use. Other tests are used if this is not available, but none are as specific. Improvements in this standard will be driven by staff in the NHS such as Gastroenterologists and GPs with interest in gastroenterology.

Standard two is about giving a diagnosis. As IBS can be challenging to diagnose, this standard helps patients to have a definite diagnosis as soon as possible, without over-investigation. Over-investigation can prevent timely effective management and doesn’t improve symptoms. Without a diagnosis, people end up stuck in a cycle of having negative test results and worrying about what the problem is. A definite diagnosis can help to reduce unnecessary anxiety in people with symptoms of IBS and knowing the diagnosis can be very beneficial in acceptance and moving onto treatment.

Standard three is about diet, and as a dietitian, this is the area where I have more knowledge. Diet is a popular treatment for IBS and is arguably one of the most successful treatment areas. Working with the IBS Network I have heard many people report that they do not get referred to a dietitian by their GP, or they are handed a sheet about the low FODMAP diet printed off from the internet with a list of foods to avoid.

The reason for poor access is currently not known; we do not know if this is as a direct cause of dietetic departments not having services available or GPs not referring to limit numbers because of a perceived desire not to ‘overload’ dietetic departments with referrals. Not referring doesn’t help those departments and can ultimately lead to reduced availability. GPs giving dietary information to patients to quickly help symptoms is laudable – but handing over a list of foods to avoid is not good quality care or very practical for the individual. We do not know how successful a list of foods to avoid is for treatment and its provision can risk failure of therapy and malnutrition.

The low FODMAP diet is a three-stage diet, which needs to be followed to identify foods that should be avoided long-term and to include foods that do not give symptoms. This is important as many FODMAP- containing foods provide sustenance for the microbes that live in our gut and help to keep it healthy. We do have a first-line diet treatment for IBS included in the NICE IBS guidelines, and this is what should be used for patients. First line advice can be useful and comprises of other food and symptom triggers not included on the low FODMAP diet, and people with IBS should understand these triggers and how they affect them personally. A commonly unknown fact is that this advice can also reduce an overall FODMAP load to the bowel. The need to complete the full three-stage low FODMAP diet correctly with sound practical information is the reason NICE quality standard two states that patients requiring an exclusion diet are referred to a trained practitioner, the only qualified practitioners in the UK are registered dietitians.

Some dietetic departments are considering teaching groups of people with IBS meaning they can see more people more quickly. If you have contacted the dietetic department and it does not offer a service, often dietitians working in private practice can provide care. They are usually providing services at a reasonable cost and can offer online services if you live in an area where services are limited. Ensure your dietitian is registered with the Health and Care Professions Council as it is against the law for anyone to call themselves a dietitian if not registered, plus dietitians are the only practitioners who should be offering diet services for people who have a complex medical condition, such as IBS.

The standard four is about having access to an annual review if the patient wishes to have one. Many people live with symptoms of IBS for years, after the initial period of diagnosis and treatment, and may not discuss continuing symptoms with their practitioner. If the patient feels that nothing has helped, why consider saying that symptoms are still happening? Plus, the practitioner may feel that IBS is no longer a problem, as recurrent symptoms are not raised at an appointment. Patients not mentioning symptoms doesn’t mean they are not a problem and facilitating patients having access to new treatments, by having a review that can be requested to discuss symptoms is essential. An annual review is currently offered for many long-term health conditions, and IBS should be no different.

It can be challenging for a patient to be more determined in requesting a referral from their GP, as there is a mismatch in the balance of power between practitioner and patient. This situation can make symptoms worse if it results in anxiety or distress, which is very unfortunate and often not recognised. Being prepared for the appointment with a GP can increase both the patient’s confidence and the GPs awareness that the patient is knowledgeable about treatment and services available. Getting into conflict over referrals is not helpful for anyone, being assertive is a far better option. A patient can ask to see another doctor in the practice if they feel less confident in their current practitioner. What I would advise is the patient contacting the local hospital’s dietetic department for diet, to ask if services are available and notifying the GP that they have done this, at the start of the conversation. Let the GP know that you are aware that waiting times might be long, but you would like to at least be on the list. Try the first line diet advice with your GP while waiting – this can effectively treat symptoms for some people, and if it does, you can always cancel your appointment.

Having knowledge of the NICE guidelines and quality standards can help with getting access to a referral to healthcare practitioners and I would recommend all people diagnosed to at least read these standards or take a copy with them to their GP, if they wish to be referred, or want to have an annual review. Knowledge about IBS and what helps, the services available and treatments to try, is an essential first step in getting access to the treatment needed. The IBS Network self-care programme can provide more information.

 

April is Irritable Bowel Syndrome (IBS) Awareness Month 2018

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. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.

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  first published a version of this post as  “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains one of the most popular single posts in the history of this blog.  That post has been revised and updated as needed every year since. Here 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. IBS Impact also posts to its Twitter and Facebook pages several times month with scientifically reputable articles, resource links, clinical trial and advocacy opportunities and encouragement from sources all over the globe. If you use these social media platforms, your likes, comments and shares are a quick and low-effort way to participate in IBS awareness and spread the word very quickly. The IBS Impact main website has just been updated in late March 2018, replacing old links and/or adding new material on almost all pages in time for IBS Awareness Month.

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, in the U.S., has free downloadable awareness posters and other resources. The Gastrointestinal Society, in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada, as well as its own downloadable IBS Awareness poster and articles.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. 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 will be welcoming guest bloggers later this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications. The IBS Network in the U.K. has recently made more use of personal stories as well.  For the past couple of Aprils, registered dietitian and IBS blogger Kate Scarlata, RDN has launched the #IBelieveinyourStory social media campaign and fundraiser for two academic research centers studying IBS. She encourages people with IBS to also share their stories on social media and use the hashtag.

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. The IBS Network also sometimes publicizes requests from UK-specific media. Occasionally, IBS Impact does as well. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post,  and IBS Impact’s more recent response to widespread, grossly inaccurate reporting involving IBS on October 23, 2017.

6) Participate in a research study or register for a database of potential volunteers 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 and databases on this blog, and on the main website, and/or share them on social media,  and many of the resources we link do as well. Currently, as of April 2018, there are listed opportunities in the United States, the United Kingdom, Australia and a European Gastroenterology Foundation worldwide online survey available in 9 languages. We always welcome additional studies from reputable organizations, academic medical centers or clinics and pharmaceutical companies for listing consideration and encourage them to contact us.

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 (the people whom they represent) 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. Several 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 and its August 25, 2014 followup.

8) If you absolutely cannot donate directly, use Goodsearch/Goodshop and/or Amazon Smile (both 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 an organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.

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. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

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.

IBS Network Conference and Exhibition for People with IBS and Professionals To Be Held April 14, 2018

Some of our readers in the vicinity of Sheffield in the United Kingdom may be interested in a one-day conference entitled, “Exploring the Self Management of IBS and What That Really Means to You” being offered by the IBS Network, the U.K’s national charity for irritable bowel syndrome,  at the Owen Building, Sheffield Hallam University in Sheffield on Saturday, April 14, 2018. Registration begins at 8:30 a.m, with welcoming remarks scheduled for 9:20  a.m. Lunch and refreshments will be provided between sessions, with the conference expected to end by 5:30 p.m.

This event commemorates IBS Awareness Month and follows the IBS Network’s successful inaugural national conference for its 25th anniversary as an organization two years ago. This year’s conference and exhibition of IBS resources  will include several sessions with leading U.K. professionals in the IBS/functional GI field. Self-management, microbiome research, the politics of IBS, relationships, and support groups are among the expected topics. Tickets for the program are 5 pounds for IBS Network members, 10 pounds for individual non-member people with IBS or professionals, and 25 pounds for corporate attenders.

The original description, including the full published schedule and online booking link are at

https://www.theibsnetwork.org/news/events/

Tickets can also be reserved by telephone at 0114 272 3253.

Please address any questions about the above event directly to the IBS Network. IBS Impact hopes that this conference is helpful to our readers in the United Kingdom.