7 Years and 8 Irritable Bowel Syndrome (IBS) Awareness Months of Forward Motion

April 14, 2015

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

Two 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 me and  many other people with IBS 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 have 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, I reported in a similar vein on progress for the IBS community from the May 2013 to April 2014. Now, continuing the tradition during my own seventh year and eighth  IBS Awareness Month, once again, reviewing the archives of this blog, I can observe small steps forward in just a single year.

Progress in the science of IBS:

In the past year, this blog often commented on new areas of promising IBS research,  such as genetics, the microbiome, and new insights into symptom patterns of IBS. These varied endeavors are taking place in or with the involvement of many scientists from many countries. See other posts in the Research category of the blog sidebar 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 August 2014, the American College of Gastroenterology issued its most recent evidence based review on the treatment of IBS. The last such document was published in 2009. In November 2014, the American Gastroenterological Association followed suit with its own updated medication guidelines.  In December 2014, the Rome Foundation, composed of an international group of leading functional gastrointestinal disorder experts met to finalize the Rome IV diagnostic criteria, which are expected to undergo the usual process for journal  publication by 2016. Most recently, in February 2015, the NICE guidelines for the diagnosis and treatment of irritable bowel syndrome in adults in the United Kingdom were also updated from the previous 2008 version.

Several investigational medications and other non-pharmaceutical treatment options are always in the research pipeline in various parts of the world, and at least one, Rifaximin (brand name Xifaxan), previously denied approval in 2011 with a request for further studies for use in IBS with diarrhea, is currently awaiting a U.S. Food and Drug Administration decision on its most recent application. Next month, the FDA will hear directly from people with IBS and three other functional gastrointestinal disorders in a public meeting as part its Patient Focused Drug Development initiative.

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

In the past few months, the International Foundation for Functional Gastrointestinal Disorders, the Drossman Center for the Education and Practice of Biopsychosocial Care, and the University of Michigan have been inviting adults with IBS from the United States and Canada to take part in an online survey on experiences with the physician-patient relationship. It is hoped that the insights gained from this research can be used to improve overall care for people with IBS.

Progress in societal supports for people with IBS:

In August 2014, a Restroom Access Act was signed into law in Delaware. Our peers, primarily from the inflammatory bowel disease (IBS) community, are continuing decentralized but ongoing efforts to pass Restroom Access Acts, popularly known as Ally’s Law, in additional states. These individual state laws, which to the best of my knowledge now number sixteen, have the common goal of allowing people with medical conditions, including irritable bowel syndrome, that may cause urgent restroom needs, to use employee-only facilities in retail stores if no public restrooms are immediately available. Search the Ally’s Law tag in the right sidebar to see previous posts and other states where similar laws apply.

As noted on this blog on January 21, 2015, the IBS Network is presently making efforts to expand local, in-person self-help/support groups for people with IBS in the United Kingdom.

Progress in advocacy and awareness:

The International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance  (IFFGD/DHA)  continued in the past year to shepherd the Functional GI and Motility Disorders Research Enhancement Act (HR 842) through its second attempt at Congressional passage, with the support of IBS Impact and other groups and individuals. While the Act did not pass by the end of the 113th Congress in December 2014, it picked up bipartisan support of Representatives from several states. It is expected to reintroduced in the current 114th Congress under a different Act number this year. See the Legislation category, HR 842 and HR 2239 subcategories in the right sidebar of this blog for more on this history of this important Act.  IFFGD has also been an ongoing advocate for veterans, who are disproportionately at risk for functional gastrointestinal disorders like IBS.

The University of North Carolina Center for Functional GI and Motility Disorders continued its pioneering commitment to easily accessible public education on IBS and other functional gastrointestinal disorders with its June 2014 Patient Symposium, conducted live and online, allowing people all over the world to participate. It also briefly brought back its monthly Expert Updates, also by video.

Douglas Drossman, MD, MACG, the UNC Center’s retired co-founder and co-director has brought this same commitment to his present roles as the founder of Drossman Gastroenterology, the Drossman Center for the Education and Practice of Biopsychosocial Care and the president of the Rome Foundation, with an online webinar for people with IBS and families on the doctor-patient relationship later this week. This webinar is a collaboration among IFFGD, the Drossman Center and the American College of Gastroenterology. The IBS community is fortunate that Dr. Drossman’s work and voice as one of the foremost international experts in the field continue to be influential.

IBS Impact’s site hits for the main site, this blog and social media are holding steady or increasing overall. We have reached over 100 different countries and territories with this blog alone and the number of social media followers has hit previously unprecedented numbers this past year. Soon, we will be launching a redesigned and updated main website better reflecting present interests and needs of our diverse readership.

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.


Free Online Webinar for IBS with Dr. Drossman, “How to Make the Most of Your Doctor Visit” on April 16, 2015

April 4, 2015

The American College of Gastroenterology, the Rome Foundation, and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) have announced that for IBS Awareness Month, they will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG on “How to Make the Most of Your Doctor Visit.” The webinar will take place on Thursday, April 16, 2015 from 8:00-9:00 p.m. Eastern time. The webinar is designed for people with irritable bowel syndrome and family members, but health care professionals are also welcome to attend.

Dr. Drossman, a leading, internationally-known expert on IBS, functional gastrointestinal disorders, doctor-patient relationships and the biopsychosocial approach to medical care, is President of the Drossman Center for the Education and Practice of Biospsychosocial Care, President of the Rome Foundation, Professor Emeritus of Medicine and Psychiatry at the University of North Carolina at Chapel Hill, and retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders, along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

Dr. Drossman will take questions of general interest at the end of his presentation, or they can be emailed in advance through the American College of Gastroenterology at jgaulin@gi.org. Further details are available at the link below. To participate in the webinar, please use the link to register. You will need to provide ACG with your full name and email address so that instructions for accessing the webinar on the scheduled date can be sent to you. It is open to anyone in any geographical location who has Internet access fast enough to handle streaming video, audio and chat technology.

“How to Make the Most of Your Doctor Visit” Webinar with Dr. Drossman, April 16, 2015

This is a tremendous and unique opportunity, especially for people with IBS or their loved ones to hear from and communicate directly with one of the world authorities and pioneers in the research, education and treatment of IBS. IBS Impact thanks ACG, the Rome Foundation and IFFGD for making this webinar possible. We also thank Dr. Drossman for taking time out of his busy schedule to make himself available to the general public, and for his long decades of commitment to making functional gastrointestinal disorders like IBS a serious field of medical research and to supporting and treating many who live with these complex conditions.

 

 


Something Traditional and Something New for Irritable Bowel Syndrome (IBS) Awareness Month 2015

April 1, 2015

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.

This blog and IBS Impact social media have been quieter than usual in recent weeks, in part because those of us behind the scenes have been working on a major redesign and update of the main IBS Impact website. While it’s not ready yet, we do hope to launch publicly within several days. So especially if you are encountering this blog for the first time, please stay tuned for the announcement, unveiling and other interesting things shortly. In the meantime, part of this post returns to one of our now traditional “April is IBS Awareness Month” standbys.

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 a week 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.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free for the asking. IFFGD/the Digestive Health Alliance has free downloadable awareness posters and other resources. The Irritable Bowel Syndrome Self Help and Support Group online forum based in Canada that draws visitors from many countries worldwide, has a downloadable brochure in English explaining IBS to those who do not have it, with translations in Simplified and Traditional Chinese, Swedish and German on the website. The Gastrointestinal Society, also in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and hope to be welcoming some guest bloggers this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

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. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about a recent advocacy success with a major U.S. media outlet in the January 20, 2014 blog post.

6) Participate in a research study 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 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.

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. A few 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.

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

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.


Clinical Trial: Assessing Cognitive Behavioral Therapy in Irritable Bowel Syndrome University of Southampton, UK, 2015

March 15, 2015

The University of Southampton, in collaboration with Kings College, London, has an ongoing multi-center clinical trial begun in 2013 and expected to be published in 2018 comparing the clinical and cost effectiveness of therapist cognitive behavioral therapy and lower intensity web-based cognitive behavioral therapy for people with refractory irritable bowel syndrome (IBS).

A total of 495 volunteers with IBS have been or will be recruited from primary and secondary care in Southampton and London and randomized into one of the two groups. The therapist CBT group receives 6 one-hour telephone sessions with a therapist over a period of 9 weeks, plus two one-hour followup calls at 4 months and 8 months following treatment for a total of 8 hours contact time with the therapist.  The lower intensity web-based CBT group receives a web-based self-management program plus 3 half-hour telephone sessions with a therapist over 9 weeks, plus two half-hour followup up calls at 4 months and 8 months following treatment for a total of 2 1/2 hours contact time with a therapist. The original listing can be found here on the University of Southampton website.  ACTIB Cognitive Behavioral Therapy Study, Southampton For further details or to volunteer, please contact Gilly O’Reilly, Trial Manager, at gor@soton.ac.uk

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While IBS Impact attempts to highlight a diversity of available opportunities, this is not intended as an exhaustive resource. Previous posts on open clinical trials for IBS can be found by clicking the clinical trials category in the blog archives on the upper right sidebar of this blog. We also have a page for IBS studies on the main IBS Impact site. Because studies stop accepting new volunteers or are completed over time, please check the post date on this blog, or the last update date on studies page, to verify that the study you are interested in is relatively recent rather than from a few years ago. Depending on how you accessed this blog, the post date will appear either at the top or at the bottom of the post, and is occasionally included in the post title. On the studies page on the main site, the date of the last update is at both the top and the bottom of the page. The research and links pages and the July 26, 2011 post provide additional general resources.

We welcome 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 they wish to be considered for posting or if an existing listing needs to be updated. Contact links for the founder/listowner and the webmaster can be found on the home page of the main IBS Impact website.

IBS Impact makes these study announcements available for general information, and encourages its members and site visitors to make their own individual, informed choices about their potential participation in any study. IBS Impact, as an entity, is not directly affiliated with any research sponsor and receives no funding from any source for studies or links we feature on this blog, the main site or social media.


NICE Guidelines in the United Kingdom for Adult Irritable Bowel Syndrome (IBS) Updated for 2015

March 6, 2015

Last month, February 2015, the National Institute for Health and Care Excellence, formerly the National Institute for Clinical Excellence and still widely known by its original acronym NICE, released revised guidelines for the diagnosis and treatment of adults with irritable bowel syndrome (IBS) in the United Kingdom. NICE’s stated goal is to provide evidence-based information to improve the overall quality of care and reduce variation in care through the National Health Service. The committees responsible for the IBS guidelines included many professionals from a variety of academic research centers and hospitals throughout the U.K.

The last update to the NICE guidelines for IBS was in 2008. In a portion of the guidelines on its website directed to the general public,  NICE cautions that these guidelines are not intended for those with IBS who are under the age of 18 or those who have other gastrointestinal disorders such as non-ulcer dyspepsia or coeliac (celiac) disease. The guidelines are primarily for use by general practitioners/primary care physicians who are the first health professionals to assess people with possible symptoms of IBS. The relevant section of the NICE website includes several additional tools, including cost information.

With a few specific country variations, the NICE guidelines are consistent with the international Rome criteria developed by leading functional gastrointestinal disorder clinicians and researchers from several countries (currently Rome III. See page 889. Rome IV was completed in December 2014 and is expected to be published in 2016.) and best practices advocated by those same IBS experts, such as patient-centered care. For example, the NICE guidelines advise primary care providers to ask open-ended questions, to be aware that many patients will not disclose incontinence without being specifically asked, and to be sensitive to individuals for whom English is not the first language or who have disabilities that may hinder effective communication.

In general, NICE advises that IBS should be considered a possible diagnosis for people who have chronic symptoms of abdominal pain and change in bowel habits  (altered frequency or stool form) and at least two of the following additional symptoms: changes in stool passage (such as straining, urgency, incomplete evacuation), bloating, symptoms worsened by eating, or passage of mucus. Additionally, NICE states that the following common non-GI or extraintestinal symptoms can further support diagnosis of IBS: lethargy, nausea, backache and bladder symptoms.

Symptoms or circumstances that are not present in irritable bowel syndrome or otherwise warrant further investigation and referral to a specialist in gastroenterology include: unintentional and unexplained weight loss (not from changes in eating habits or physical activity), rectal bleeding, family history of bowel cancer or, for women, of ovarian cancer,  chronic frequent and/or looser stools in individuals over age 60,  anaemia (anemia), rectal or abdominal masses, and or inflammatory markers for inflammatory bowel disease (IBD).

The Rome III criteria discourage extensive testing of all people with symptoms of possible IBS. As reported on this blog on October 9, 2011, IBS experts have not considered it a diagnosis of exclusion for over two decades, and state that a properly done Rome III diagnosis is 98% accurate. As there is no clinically available test specifically for IBS at this time, many IBS experts feel that absent symptoms or risk factors for disorders other than IBS, as discussed above, routine, extensive testing is time-consuming for patients and physicians, expensive and not cost-effective, stress-producing for patients and their families, and may delay appropriate IBS education and treatment for many people with IBS, who frequently spend months or years continuing to look for other statistically unlikely causes of their symptoms. In contrast, NICE guidelines do recommend certain simple blood tests to exclude other possible diagnoses: full blood count, erythrocyte sedimentation rate (ESR) or plasma viscosity, c‑reactive protein (CRP) antibody testing for coeliac (celiac) disease (endomysial antibodies [EMA] or tissue transglutaminase [TTG]), as well as serum CA 125 in women who meet NICE guidelines for possible ovarian cancer.  However, NICE guidelines also discourage procedures that are more invasive, involved, or generally not cost-effective. They specifically state that the following are generally not necessary to confirm a diagnosis of IBS for those who meet diagnostic criteria: ultrasound, rigid or flexible sigmoidoscopy, colonoscopy, barium enema, thyroid function test, faecal (fecal) ova or parasite tests, faecal (fecal) occult blood, and hydrogen breath tests for lactose intolerance or bacterial overgrowth. These details are mostly identical to the the 2008 version of the NICE guidelines.

The updates in the 2015 guidelines are concentrated in the treatment/management section, based on a review of research evidence and cost-effectiveness. Primary care physicians are encouraged by NICE to begin their advice to newly diagnosed people with IBS with general lifestyle and simple dietary measures. These include exercise and other relaxing leisure activities, regular meals that are not rushed, adequate fluid intake, reduction of caffeinated, carbonated, and alcoholic beverages, as well as adjustments in types or amounts of fiber, starches, fruit or sorbitol depending on specific symptoms. If these are not effective for particular individuals, NICE newly emphasizes this year that more extensive dietary exclusions, including the low-FODMAP diet, be tried only with the guidance of healthcare professionals with diet and nutrition expertise. For people with IBS who desire to try probiotics, NICE recommends that physicians advise them to continue for 4 weeks. This is a 2008 recommendation that has not changed.

If medications are needed, NICE recommends laxatives, except lactulose, for constipation-predominant IBS, and loperamide (Immodium) for diarrhea-predominant IBS. Among prescription medications, antispasmodics are considered by NICE to be the first line treatment. If those are not sufficiently effective, tricylic antidepressants are preferred by NICE over selective serotonin reuptake inhibitors (SSRIs) as the next line of treatment, with SSRIs only being used if tricyclics are ineffective. These 2008 recommendations were reviewed by the relevant NICE committee and unchanged for 2015. New for 2015,  NICE advises to physicians to be aware of potential side effects from both tricyclics and SSRIs, and to follow up regularly with their patients taking them, initially after 4 weeks, then every 6-12 months thereafter. NICE states that linaclotide (brand name Constella in Europe, Linzess in the United States) should be considered only for those with IBS with constipation (IBS-C) who have not had success with maximum doses of different classes of laxatives for at least 12 months. For 2015, NICE added a recommendation that physicians follow up after 3 months of use. The committee also considered  lubiprostone in this 2015 review, but did not find the evidence strong enough to make a specific recommendation regarding its use for IBS-C. Lubiprostone (Amitiza) is approved for IBS-C in the United States and is available in the United Kingdom for certain other types of constipation under specific strict conditions, but is not specifically approved in the U.K. for IBS-C at this time. Any prescription of lubiprostone for IBS in the U.K. would be off-label.

For those who do not respond adequately to medications within 12 months, NICE states referral to psychological interventions such as hypnotherapy or cognitive behavioral therapy can be considered. In 2015, NICE reviewed relaxation therapy, computerized cognitive behavioral therapy and mindfulness, but did not make specific recommendations about their use for IBS at this time. NICE recommends further research into computerized CBT and mindfulness, specifically their cost-effectiveness.

The 2008 guidelines include statements discouraging specific alternative medicine interventions. These were neither reviewed nor changed for 2015. Aloe vera, acupuncture and reflexology show insufficient evidence of effectiveness for IBS and are explicitly not recommended by NICE.

The full guidelines, 2015 supplement, addenda, tools and resources can be found on the NICE website at the following link:

NICE Guidelines (U.K.) for Adult Irritable Bowel Syndrome in Primary Care, February 2015

IBS Impact appreciates the work of all of the health care professionals involved in developing this revision to the NICE guidelines. Peer review is important to the scientific process and future advances. The availability of this document provides additional guidance to health care professionals and interested people with IBS in the most current standards of care for adults with IBS in the United Kingdom. When so many people with IBS, families and professionals continue to receive outdated or inaccurate information about basic aspects of IBS, an evidence-based document is an important tool in education and management of IBS.

 


“Behind the Scenes at Rome Foundation IV” Video Humanizes Functional GI Experts

February 23, 2015

In December 2014, functional gastrointestinal disorder experts from many countries, including several who are sometimes mentioned on this blog, literally met in Rome, Italy to finalize the most recent revision to the Rome criteria. The Rome criteria are the international standard used to diagnose functional gastrointestinal disorders such as irritable bowel syndrome (IBS). Some version of the Rome criteria has been in existence for over two decades. Rome III is the current version. Rome IV, which these professionals were putting the final touches on developing two months ago, will now go through the usual process for publication in a gastroenterology journal and is expected to be released for use in 2016.

It not been made public yet just what changes and improvements have been made in the details of the criteria. However, earlier this month, in his February 2, 2015  Gut Feelings  blog post, “Behind the Scenes at Rome Foundation IV: Updating FGIDs Diagnostic Criteria,” Douglas Drossman, MD, MACG, who is founder and president of the Rome Foundation, founder and president of the Drossman Center for the Education and Practice of Biopsychosocial Care, co-founder and retired co-director of the University of North Carolina Center for Functional GI Disorders, along with many other pivotal roles in the development of the field over his 40+ year career, reflects on the meeting.  He also includes a video of a bit more than 7 minutes in length showing him and his colleagues in work sessions and meetings, interacting with each other more informally in hallways and in tours of the city of Rome, and speaking to the video camera about their impressions of the meeting and their hopes for their work on the criteria and on further functional GI research and treatment. The range of countries and research institutions they currently represent is vast, and their faces and voices are reminders that there were human beings working long and diligently through this complex process.

As IBS Impact has written previously on this blog, given relatively scant, simplistic coverage of IBS in the mainstream media and some online sources, many people with IBS who have not been exposed to or taken the opportunity to access high quality, state of the science sources, tend to believe  erroneously that “nobody’s doing any research on IBS.”  (See the December 28, 2014 post). If they are aware of the Rome criteria, these tend to be an abstraction ascribed to some faceless medical “system,” not something that, if properly put into practice, IBS experts like Dr. Drossman consistently state can adequately diagnose IBS and other functional GI disorders based on symptoms with an extremely high degree of accuracy.

This lack of awareness does not only extend to people with IBS and their families though. As also reported on this blog on October 9, 2011, and still largely true today, even almost a quarter century after Rome I, functional GI experts are still battling widespread misconceptions among their own medical colleagues– primary care physicians, general gastroenterologists and nurse practitioners in local communities–  who are statistically much more likely than the experts to believe that IBS is still considered a diagnosis of exclusion, arrived at only when extensive tests have ruled out every other possibility and doctors do not know what else to call it or much about current standards of treating it. Despite the Rome Foundation members’ best efforts, as well as those of IBS organizations and advocates, these outdated notions filter down to patients and families and the public, compounding and prolonging an issue that is already entrenched but is a very basic barrier to further progress.

The best way to counter that is consistent and widespread education and awareness, which readers of this blog know IBS Impact actively encourages. The Rome Foundation is real. The Rome criteria are real, and the dedicated members of the various Rome IV working groups are real, highly experienced clinicians and researchers in the field. Take a look at Dr. Drossman’s video and see just a glimpse of behind the scenes.

IBS Impact thanks all of the experts involved in Rome IV, who are constantly working to improve diagnosis, treatment, research and functional GI education for those of us who live with these conditions and the professionals who may provide care to us. With IBS, progress is rarely quick and dramatic, and it is easy for many to lose hope that the future may bring new understanding, new options and better quality of life. But watching even a short, edited video may very possibly allow some readers that hope and insight.


Registration for Food and Drug Administration May 2015 Public Meeting for IBS, GERD, Gastroparesis, Chronic Idiopathic Constipation Patients Now Open

February 8, 2015

In April 2013, the International Foundation for Functional Gastrointestinal Disorders and its grassroots arm, the Digestive Health Alliance, announced that the U.S. Food and Drug  Administration had chosen three functional gastrointestinal and motility disorders to be included in its  “patient focused initiative.” (See the May 1, 2013 blog post.) The FDA is responsible for the review, approval and regulation of medications in the U.S.  The entire initiative was scheduled to take place over five years and include 20 chronic medical conditions that, based on several factors  the FDA considered sufficiently serious to warrant increased attention and drug development. The three digestive disorders, irritable bowel syndrome (IBS), gastroesophageal reflux disease (GERD) with regurgitation on proton pump inhibitors, and gastroparesis, were among the 16 diverse medical conditions in total that were selected during the first round. Another functional GI disorder, chronic idiopathic constipation (CIC) has since been added. The program involves public meetings and other means for the FDA to hear experiences from people affected by the selected conditions.

IFFGD/DHA has now announced that the FDA will hold one of these meetings on Monday May 11, 2015 from 1:00 pm to 5:00 pm Eastern time at the FDA campus in Silver Spring, MD. People with IBS, GERD that does not respond to standard treatments, gastroparesis and/or chronic idiopathic constipation (CIC) may now register to attend in person, attend through online webinar, or to submit comments online through the FDA comment docket. Registration will close on May 1. Further information can be found at the link below.

FDA May 11, 2015, Public Meeting on Functional GI Disorders Patient Focused Drug Development

Along with IFFGD/DHA, IBS Impact encourages people affected by the above conditions to consider participating in the public meeting or submitting comments, which is a unique opportunity to influence future FDA directions and policies regarding these disorders. It is hoped that the representation of four functional GI and motility disorders in the patient focused initiative will create other opportunities for our community and pave the way for many long-term, positive and systemic changes for us all.


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