Online Research Survey on Psychological Health of People with IBS During the COVID-19 Emergency, University of Chieti, May 2020

Posted at the request of one of the researchers involved in the Department of Psychological Health and Territorial Sciences, University of Chieti, Pescara, Italy. This is an anonymous online survey on “factors affecting health outcomes in people with IBS during the COVID-19 emergency.” The research team is seeking adults aged 18-74 with a physician diagnosis of IBS and experiencing symptoms within the last two years. Estimated time commitment is 15 minutes. The survey is in Italian, but can be changed to English by using the drop down menu on the upper right.  Please address any questions or concerns directly to the researchers at the contact information given at the link.

Are you suffering from irritable bowel syndrome (IBS)?
The University of Chieti-Pescara (Italy) is conducting research on the psychological health of people with irritable bowel syndrome during the emergency from Covid-19.

Fill in the questionnaire on the psychological aspects during the pandemic. It is available in English version.

https://disputer.eu.qualtrics.com/j…/form/SV_3EnI0rBM6jNsNEx

 

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.

A Dozen Years and 13 IBS Awareness Months: Advances for the IBS Community 2019-2020

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

Seven 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, May 8, 2018, and April 30, 2019, I reported in a similar vein, on progress for the IBS community in each respective years, Now, continuing the tradition during my own twelfth year with IBS, as my thirteenth IBS Awareness Month draws to a close, 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 by no means limited to differences in pain among IBS subtypes,differences in Xifaxan response for IBS-D,  a possible enzyme deficiency that may account for some individuals in the subset who do not respond to the low FODMAP diet, a U.S. study on fecal microbiota transplant for IBS which was terminated early because it was found to be no better than placebo, as well as several studies confirming previous research correlating IBS to various known commonly overlapping conditions or showing the effectiveness of certain existing IBS medications for some patients. [Thank you to IFFGD staff for providing assistance in compiling many of the studies mentioned here.]

In addition, the Rome Foundation, a not-for-profit organization of thought leaders from many countries in the field of functional gastrointestinal disorders/disorders of gut-brain interaction and who developed the Rome international diagnostic criteria 30 years ago, last updated to Rome IV in May 2016, undertook a multi-year Global Epidemiology Study that has begun to bear fruit in the form of multiple major journal publications this year for this or narrower aspects of the overall work.  Epidemiology is the study of the incidence, distribution and factors controlling the development of certain medical conditions. In this research, scientists surveyed approximately 73,000 adults from a wide range of cultural and socioeconomic backgrounds in 33 countries on 6 continents of the world. This work has already given researchers new insights into how many people in various parts of the globe have IBS and/or related FGIDs/DGBIs and their circumstances, and will undoubtedly be a major milestone paving future directions for research.

These varied advancements in IBS research 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.  In the past few years, including 2019-2020, as some long-established senior committee, board and administrative members or editors at the Rome Foundation and other gastroenterology organizations, research centers or professional journals have retired or moved on to other professional endeavors, different researchers have taken on the roles, in some cases diversifying countries, areas of expertise, or perspectives represented in influential positions in the field. IBS Impact hopes that this factor also contributes to moving the field further forward in the years to come. 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.

Progress in the diagnosis and treatment of IBS:

In September 2019, the American Gastroenterological Association published Clinical Guidelines on the Laboratory Evaluation of Functional Diarrhea and Diarrhea -Predominant Irritable Bowel Syndrome in Adults.   Some tests are recommended by the AGA while the AGA also makes no recommendation or recommends against others and discusses the quality of evidence for each. The guidelines state that this is meant to reduce variations in medical practices of different health care providers, and that the document will expire in 5 years. At that time, presumably, the AGA will update the guidelines as needed depending on future evidence and medical practices.

During 2019-2020, the Rome Foundation has offered several symposia in different cities as part of continuing medical education opportunities for fellow health care professionals in both gastroenterology and primary care on diagnosis and treatment. The next one is scheduled for autumn of this year.  The Foundation also continues a program to mentor promising young functional GI researchers, an initiative started after Rome IV.

Several investigational medications and other non-pharmaceutical treatment options are always in various stages of the research pipeline in various parts of the world. As reported on this blog on June 17, 2019, the groundbreaking IB-Stim device had just then been approved by the U.S. FDA for use in treating IBS pain in adolescents. In September 2019, the FDA approved tenapanor (Ibsrela) for use by adults who have IBS with constipation (IBS-C)

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

As reported on this blog in June 2018,  about two years ago, the International Foundation for Gastrointestinal Disorders (IFFGD), in the U.S., formerly the International Foundation for Functional Gastrointestinal Disorders, began recruiting its first invitation-only, volunteer Patient Advisory Committee for people with GI disorders, including IBS and family members known to IFFGD as among the most active and interested advocates, and larger volunteer Patient Panel, open to any interested individual. In 2019-2020, this mechanism became more established, and IFFGD and members of these groups have continued to communicate, as individuals and groups, to share information and feedback on IFFGD materials, programs, and advocacy priorities and to address suggestions of members and the concerns of those affected by GI disorders in the wider community.  IBS Impact appreciates the effort to encourage more formal patient-organization collaboration.

Recently, IFFGD also began conducting a comprehensive survey online survey of people with IBS, their experiences and unmet needs. This is a follow-up to a similar comprehensive multi-year survey by IFFGD and the University of North Carolina first begun in 2007. This previous study attracted a large number of responses internationally and its insights have been important contributions to IBS research, medical care and support systems since then. It is hoped that the current survey will also yield significant responses and long term positive impact for our community.

Progress in societal supports for people with IBS:

The IBS Network in the United Kingdom continued its support to and/or development of, as of this writing, a total of 13 local self-help/support groups in various locations in England and Scotland for people with IBS as originally reported by this blog on October 23, 2016 and January 13, 2017. The current list can be accessed at this link. While social distancing necessitated by the COVID-19 pandemic does not allow these groups to currently meet in person, some are continuing to meet by Skype and similar technologies.

Among other recent activities, the IBS Network also reports that in March 2020, it was raising awareness with employers regarding accommodating employees with IBS in the workplace.

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. The availability of certified products and food-related services has expanded over time and currently includes major and specialty brands in Australia, New Zealand, the United Kingdom, Germany, Poland, the United States, Canada,and several multi-national brands. Aside from continuing online courses for dietitians, in the past year, Monash has launched an online course for those with IBS on using the diet. For a modest fee, which varies by each country’s currency and exchange rate at any given time, one can complete the course at one’s own pace within one year of purchase. This is a positive step forward in making the complex dietary approach more understandable to those who, for various reasons, may not wish to or may not be able to consult a low-FODMAP trained dietitian.

Michael Mahoney, clinical hypnotherapist in Cheshire, England, founder of Healthy Audio and the developer of the IBS Audio 100 program for adults, (and later the IBS Audio 60 for children with IBS)  the gut-directed hypnotherapy home course used by people with IBS internationally for over 20 years, recently contacted IBS Impact to share the news that he has significantly discounted the MP3 version of IBS Audio 100, for as long as sustainable, and has also recently developed a new streaming version for 2020. IBS Impact commends Mike’s long commitment to making his programs as financially and logistically accessible to as many people as possible, which is motivated by his genuine concern for quality of life for people with IBS.

[Please note that IBS Impact does not receive funding from Monash or Healthy Audio or any other linked source, nor was any link solicited. As always, any resources mentioned on our sites and social media are independently chosen and shared in the interest of scientifically accurate awareness, advocacy, and high quality useful resources for the IBS community.]

Progress in awareness and advocacy:

Over the past year or so,  the American Neurogastroenterology and Motility Society,  the Rome Foundation, and the Drossman Center. among others, have continued to conduct various social media events such as Twitter Chats and Facebook Live to engage and educate their people with IBS and families.

This year, IFFGD has been busy planning and organizing its new Nancy and Bill Norton Educational Series, named in honor of IFFGD’s  founders, who developed and headed the organization from 1991-2017 and continue to serve on its Board of Directors. IFFGD envisions this new series as half day events a few times a year, each in a different location and focused on a different chronic GI condition or topic of concern common to many conditions that IFFGD serves, including IBS. These will be focused directly on GI disorder-affected individuals in the hope of educating them, providing resources, and empowering them to manage their conditions. This is the first attempt in the IBS community in many years to provide ongoing in-person patient-centered events rather than very occasional ones. The first one will be on Diet, Nutrition and Digestive Health in cooperation with the University of Michigan, a leading functional GI treatment and research center in October 2020. This date was rescheduled from earlier this year due to the COVID-19 pandemic. Plans are to stream Norton Educational Series events online also, so that people with chronic GI conditions served by IFFGD can participate regardless of where they are in the world.

IFFGD has also announced this year’s dates for its annual national advocacy event, which is virtual this year,  to connect with federal legislators on several issues of concern to the GI disorder community. This will take place on July 26-27, 2020. Attendance is free but registration is required. One of the pieces of federal legislation affecting people with IBS is HR 3396, the Functional Gastrointestinal Disorders Research Enhancement Act, which so far this Congressional session, has 22 legislators, the lead sponsor and 21 co-sponsors from both political parties, 14 states and the District of Columbia.

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 nine 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 150 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: Living With IBS

IBS Impact is pleased to welcome a guest post for IBS Awareness Month. Feivel Cohen has IBS and intellectual disabilities and lives and works in Maryland (USA). He wrote this article himself especially for IBS Impact. To respect his real voice as a self-advocate, we have intentionally not edited his own choice of words and punctuation if the intended meaning is clear. We thank him for his eagerness to share his story in order to help explain to family, friends, and others what many people with IBS experience.

 Living with IBS by Feivel Cohen

For many years I lived with out IBS and boy do I miss those years a lot. More then you will ever know.  It’s had a huge impact on my life and no, not a good one.

When you have IBS you never know when it’s going to strike you. All you can do is know what your stomach is capable of digesting and eating only those things. I take public transit absolutely everywhere. And sometimes when I’m walking to the bus I get that feeling in my stomach and I know if I don’t get home or to a bathroom In time I’m not gonna be a happy camper at all.

The thing about IBS is there are no cures for it at this time and that’s a major letdown because IBS cause major stomach pain imagine a normal stomach ache times 100 yeah sounds painful? That’s because it is. Sometimes my family has to deal with me letting out sounds of agonizing pain. And I hate that they’ve got to endure that.

Oh and the sad part is a lot of the time when people with IBS are trying to get to a bathroom in time they can’t they do their best believe me we do. But sometimes we can’t hold it in and it’s extremely embarrassing to be walking on the sidewalk after that.

Yes there are medications out there to help people with IBS but the sad thing is they don’t work for everyone and I’m one of those people. People with IBS pray that every day they wake up there will be a cure for it. Sadly that’s not the case at all.

Oh while I’m on this topic I have a quick story. Back when I was in High School senior year was the beginning of my tortuous journey with IBS and one day I was on the school bus sitting next to a kid. I had the window seat. And I got that feeling in my stomach I told you all about. I was freaking out I had no idea what to do sweat was dripping from my face my heart was beating who knows how fast and I told the bus driver. I need to go to the bathroom NOW and it CAN’T WAIT. She let me out at our local middle school I burst through the doors and found the bathroom. And I was so thankful I got there in time. But like I said we aren’t always so lucky.

One thing I’ve noticed people like to do is compare IBS to AIDS or cancer and they’ll tell me well just be thankful you don’t have cancer/AIDS. And I tell them those are all totally different diseases.

So I’ll I ask it that when you know someone with IBS try having a little sympathy for us. Because we’re going through a lot and a lot of underwear too lol. Thanks for reading.

April is Irritable Bowel Syndrome (IBS) Awareness Month 2020

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 2020, replacing old links and/or adding new material on almost all pages in time for IBS Awareness Month.

3) If you prefer traditional means of distributing information, IBS Impact has business cards with our logo available free for the asking. IFFGD, in the U.S.,has a free downloadale media tool kit and press release, as well as awareness posters it can provide to interested parties. 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 infograph and resources.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members.

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 a guest blogger 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.  As of this year, 2020, IFFGD is also encouraging affected people to use social media to communicate with friends, family and coworkers with its hashtags #IBSAwarenessMonth and #IWant2Know

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 2020, there are listed opportunities in the United States, the United Kingdom, and Australia. 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. Although this April, much of the world is required to practice social distancing and avoid public gatherings to slow the spread of COVID-19 (the coronavirus), virtual events are possible now or in the future. Talk to a health professions class or study group. 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.

Reps. Brownley of California, Suozzi of New York and Norton of the District of Columbia Co-Sponsor Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, last week, Representative Julia Brownley (D-CA-26), Representative Thomas Suozzi (D-NY-3) and Representative Eleanor Holmes Norton (D-DC-at large)  officially became co-sponsors for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. Each of them was a co-sponsor of a previous version of this Act in previous Congresses. IBS Impact thanks them all for renewing their support of the functional GI/IBS community.

Representative Brownley is a third-term member of the House of Representatives. Her district, the 26th Congressional District of California, encompasses much of the Central Coast of California, including Oxnard and Thousand Oaks, as well as Ventura, which includes a large Navy base and veteran community. According to her official House website, Representative Brownley is a member of the House Committee on Veterans Affairs and ranking member of that committee’s subcommittee on health, and has already sponsored or co-sponsored other legislation relating to veterans’ health, particularly women veterans who have been historically underserved. As discussed previously on this blog, veterans and service members deployed in the Persian Gulf region have been shown to be disproportionately affected by functional gastrointestinal disorders, of which IBS is the most common., and in most countries, IBS is diagnosed in more women than men. Representative Brownley also serves on several caucuses and task forces for various health conditions and disabilities.

Representative Suozzi is serving his first term in  the House of Representatives. His district, the 3rd Congressional District of New York, currently encompasses most of the North Shore of Long Island in  northern Nassau and northwestern  Suffolk Counties,  including Huntington, Northport, Commack, Dix Hills, Plainview, Hicksville, Syosset, Glen Cove, Roslyn, Port Washington, and Great Neck, as well as a northeastern portion of the New York City borough of Queens, including the Little Neck, Whitestone, Glen Oaks, and Floral Park communities. Representative Suozzi supports a range of health and veterans’ issues and is currently a member of the Congressional caucuses and bipartisan task forces for other specific chronic medical conditions, including the Military Mental Health Caucus as seen on his official house website.

Congresswoman Norton is serving her fifteenth term representing Washington, the District of Columbia, as its non-voting delegate at large. According to Congresswoman Norton’s official House website, she currently is a member of several caucuses and committees related to health, specific medical conditions, women, veterans, and scientific research.

In officially supporting HR 3396, Representatives Brownley, Suozzi ,and Norton join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), Representative Paul Gosar (D-AZ-4), Representative Dave Loebsack (D-IA-2), Representative Filemon Vela (D-TX-34), Representative Susie Lee, (D-NV-3), Representative Lisa Blunt Rochester, (D-DE-at large),Representative Tom O’Halleran (D-AZ-1),  Representative Bobby Rush (D-IL-1), and Representative Jeff Van Drew (R-NJ-2). IBS Impact appreciates the support of all these Members of Congress. 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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.

 

Rep. Van Drew of New Jersey Co-Sponsors Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, last week, Representative Jeff Van Drew (R-NJ-2)  officially became a co-sponsor for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. IBS Impact thanks him for his support of the functional GI/IBS community.

Representative Van Drew is serving his first term in the House of Representatives. His district, the 2nd Congressional District of New Jersey, includes all or part of 8 counties in southern New Jersey. According to Representative Van Drew’s official House website, he has a record of supporting legislation related to health and veterans. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population.

In officially supporting HR 3396, Representative Van Drew joins Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), Representative Paul Gosar (D-AZ-4), Representative Dave Loebsack (D-IA-2), Representative Filemon Vela (D-TX-34), Representative Susie Lee, (D-NV-3), Representative Lisa Blunt Rochester, (D-DE-at large),Representative Tom O’Halleran (D-AZ-1) and Representative Bobby Rush (D-IL-1). IBS Impact appreciates the support of all these Members of Congress. 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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.

 

Rep. Blunt Rochester of Delaware, Rep. O’Halleran of Arizona and Rep. Rush of Illinois Co-Sponsor Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, between mid-November 2019 and January 2020, Representative Lisa Blunt Rochester (D-DE-At Large), and Representative Tom O’Halleran (D-AZ-1), and Representative Bobby Rush (D-IL-1)  have added their support as a co-sponsors for HR 3396, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2019. IBS Impact thanks them for their support of the  functional GI/IBS community.

Representative Blunt Rochester is serving her second term in the House of Representatives, as a member-at-large for the state of Delaware. According to her official House website, Representative Blunt Rochester is currently a member of the House Committee on Energy and Commerce, which covers many health issues. She has experience in several health-related roles, including as a statewide health official in Delaware and also has a strong record of supporting health issues in the House. This is her first time supporting the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, and we thank her for taking the time to learn about our community’s needs.

Representative O’Halleran is serving his second term in the House of Representatives. His district, the 1st Congressional District of Arizona, includes all or part of 11 counties in northern and eastern Arizona. According to  Representative O’Halleran’s official House website, he has a record of supporting legislation related to health and veterans. As previously discussed on this blog on August 12, 2011 and August 25, 2011, military service members and veterans are at disproportionately high risk of functional gastrointestinal disorders like IBS, which are already very common in the general population. This is his first time supporting the FGIMD Act and we thank him for doing so.

Representative Rush is serving his thirteenth term in the House of Representatives. His district encompasses most of the South Side of Chicago and parts of many communities south and west of the city. According to his official House website, Representative Rush currently is a member of the House Subcommittee on Health and various caucuses related to many different health conditions. He was a co-sponsor of a previous version of this Act, HR 842 in 2013-2014, which did not pass. We thank him for resuming his support.

In officially supporting HR 3396, Representatives Blunt Rochester, O’Halleran and Rush join Representative F. James Sensenbrenner, Jr. (R-WI-5), who is the initial sponsor, as well as co-sponsors, Representative Gwen Moore (D-WI-4), Representative Brian Fitzpatrick (R-PA-8), Representative David Price (D-NC-4), Representative Mark Pocan (D-WI-2), Representative Ed Perlmutter (D-CO-7), Representative Ron Kind (D-WI-3), Representative Joe Neguse (D-CO-2), Representative Katie Porter (D-CA-45), Representative Thomas Massie (R-KY-4), Representative Max Rose (D-NY-11), Representative Paul Gosar (D-AZ-4), Representative Dave Loebsack (D-IA-2), Representative Filemon Vela (D-TX-34), and Representative Susie Lee, (D-NV-3)  IBS Impact appreciates the support of all these Members of Congress. 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 3396, please see the previous post from July 18, 2019 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 2018 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 3396 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 3396.

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 3396 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 116th, the necessary number of sponsor/cosponsors must be reached by December 2020. Every two years, the Congressional membership will be different as a result of elections. Thus, if HR 3396 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, HR 2311 in 2016, and HR 1187 in 2018. 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.

 

IBS Impact’s Top 25 (or 33) Countries and Top 20 Posts of 2019

For 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 106 countries and territories during 2019. The cumulative total is 165 for the eight years WordPress has made country statistics available to individual blog owners. While, predictably for an English-language site, 8 of the top 10 countries this year are ones where English is one of the official languages, 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 33– six different ties among two to four countries each this year– 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. Australia

3. United Kingdom

4. Canada

5. India

6. Japan

7. Ireland

8. Sweden

9. South Africa

10. New Zealand

11. Germany

12. Spain, Netherlands and Pakistan (tie)

14. Ukraine

15. Malaysia and Italy (tie)

16.  Philippines and Hungary (tie)

17. Israel

18. Austria

19. Norway

20. Belgium

21. Poland, France, and United Arab Emirates (tie)

22. Ireland and Spain (tie)

23. Hong Kong

24. Singapore and Mexico (tie)

25. Greece, Iceland, Portugal, and Turkey (tie)

Below are the top 20 individual posts that received the most hits during 2019. In a surprise, a post published in October 2017 about the then-recent death of celebrity fashion designer Mychael Knight, apparently from a gastrointestinal disorder he wrongly believed to be and that was widely reported as IBS, gained astonishing momentum in 2018 and 2019, amassing frequent hits most weeks. The increase in hits has been large enough for it to climb from #15 in 2017 to #2 for 2018  and to grab the #1 spot by a large margin for 2019. IBS Impact is pleased that this blog has been able to provide clear explanations in layperson’s language, as well as numerous evidence-based links, to correct the inaccurate reporting that remains online from many media sources stating that Mr. Knight died of IBS. While his passing at such a young age after apparent health struggles is extremely unfortunate, irritable bowel syndrome (IBS) is never a life-threatening condition, and newly diagnosed individuals, their loved ones, and the general public deserve to be reassured of that.

The #2 post for 2019 was April’s guest post from Australia in which Joanna Baker, a longtime person with IBS who is also a registered nurse and accredited practising dietitian specializing in low FODMAP and food intolerances, candidly shared her own experiences with IBS from these multiple vantage points.  We thank her again for her generously sharing her time and insights.

Most of the posts in 2019’s top 20 list were first published in 2011 through 2017. However, they continue to attract attention because they address topics that are of ongoing interest to people with IBS. Perhaps longtime readers can refresh their memories and newer readers will discover something interesting and useful.

There are also several posts from 2019 on this top 20 list that readers may have missed when they were first published in recent months. If so, take a look.

Please note that since this blog has been in continuous existence for 9 1/2 years, some links embedded in posts that are several years old, while valid at the time of publication, have inevitably become out of date. You may find the updated or a similar current resource on our main website. If not, feel free to leave a comment, and IBS Impact or other readers may be able to assist. In order, the posts are:

1. Designer Mychael Knight Could NOT Have Died from Irritable Bowel Syndrome (IBS), October 23, 2017

2. Guest Post From Australia: A Personal and Professional Journey, April 13, 2019

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

4. 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.

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

6. Irritable Bowel Syndrome (IBS) and the Myth of a Cure, June 19, 2014

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

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

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

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

11. Public Restroom Access and Irritable Bowel Syndrome (IBS),  February 21, 2011

12. IBS and Extraintestinal (non-GI) Symptoms,  September 6, 2011

13.Resources for People with Irritable Bowel Syndrome (IBS) in Australia 2017, February 16, 2017

14. Irritable Bowel Syndrome (IBS) is Not a Diagnosis of Exclusion, October 9, 2011

15.More Things to Say and Not to Say to People with IBS, February 27, 2013

16. Representative Loebsack of Iowa Co-Sponsors the Functional Gastrointestinal and Motility Disorders Research Enhancement Act  (HR3396),  September 30, 2019

17. 15 Common Misconceptions That Shouldn’t Exist About Irritable Bowel Syndrome (IBS), November 8, 2013

18.April is Irritable Bowel Syndrome (IBS) Awareness Month 2019, April 1, 2019

19. Free “Talking Gut Podcasts” Discuss IBS and Other GI Disorders, January 21, 2019

20: Book Review:The Gut Solution for Parents with Children Who Have Recurrent Abdominal Pain and Irritable Bowel Syndrome, June 27, 2014

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 2020 to advances in awareness, advocacy, research, treatment and community support systems that benefit the worldwide IBS community.

ProPublica Reporter Seeking to Interview People Taking Linzess (Linaclotide) for IBS-C, November 2019

IBS Impact is posting this opportunity on behalf of the journalist. If you are interested, please contact her directly at the email or phone number below. ProPublica is a reputable, bipartisan online investigative journalism website within the U.S.

“Have you been prescribed Linzess? If so I’d like to talk to you! I’m a reporter with ProPublica and am working on a story about how drug companies promote their products to doctors. You can see our work at propublica.org, particularly our Dollars for Docs tool. I’m hoping to talk to as many patients as possible and am interested in hearing about all kinds of experiences. If you, or anyone you know, has been prescribed Linzess, I’d be interested in hearing from you. You can reach out to me at hannah.fresques@propublica.org or signal/call 917-512-0246. (That number can’t get texts, just Signal.) I won’t use your name without your permission. Happy to talk about this!”

 

Veterans with IBS and Functional Gastrointestinal Disorders 2019

Today, November 11, is Veterans Day in the U.S. ,a federal holiday. It is also the traditional day on which many entities highlight veterans’ issues. U.S. veterans and current military service members who have been deployed in the Persian Gulf/Southwest Asia and Afghanistan regions 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/Southwest Asia/Afghanistan 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 seven 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. Service in Afghanistan was not originally included in the 2011 regulations, but has since been added.

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 2019 currently in the House of Representatives. This legislation is 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 eight years after original publication, has continued to receive consistent hits from readers on many days. 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 what are over 300 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 2016, did it drop to #2 on the all-time and 2016 and 2017 lists, still remaining #2 of all time through 2018 and thus far in 2019, and in the top 9 for the last two years. 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.