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.

Rep. Vela of Texas and Rep. Lee of Nevada Co-Sponsor Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 3396)

According to IFFGD and the official Congressional legislative database Congress.gov, at the end of October 2019, Representative Filemon Vela (D-TX-34) and Representative Susie Lee (D-NV-3)  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 taking the time to learn about the needs of the  functional GI/IBS community.

Representative Vela is serving his fourth term in the House of Representatives. His district, the 34th Congressional District of Texas encompasses all or part of 11 counties from the Texas-Mexico border to more than 250 miles north, including Bee, Cameron, DeWitt, Goliad, Gonzales, Hildalgo, Jim Wells, Kenedy, Kleberg, San Patricio and Willacy Counties. According to his official House website, Representative Vela is currently a member of the House Committee on Armed Services, and also has a strong record of supporting 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 of functional gastrointestinal disorders like IBS, which are already very common in the general population.

Representative Lee is serving her first term in the House of Representatives. Her district, the 3nd Congressional District of Nevada, includes part of Las Vegas and south, including Henderson and portions of unincorporated Clark County. She is currently a member of the House Committee on Veterans Affairs. Representative Lee’s official House website is at this link.

In officially supporting HR 3396, Representatives Vela and Lee 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), and Representative Dave Loebsack (D-IA-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.

 

Updates to IBS Impact.com Main Website, October 2019

IBS Impact has recently completed the latest round of updates to many pages of our main website,  IBS Impact.com,

The advocacy page, research page, IBS studies page, resources page, family and friends page,ibs and children page, and links page, several articles on subpages, plus the news updates in the blue and white footers of every page all have additions or updates of content or links, or deletions of outdated links in the last few months.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six English-speaking countries which are among the top sources of hits to the site and this blog: the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand. Several additional countries are occasionally represented on various pages.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

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

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

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