GERD Awareness Week: November 20-26, 2016

November 21, 2016

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

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

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

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

 GERD Awareness Week section from the IFFGD About GERD website

Pediatric GERD section from the IFFGD About Kids  GI website

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

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


Veterans with IBS and Functional Gastrointestinal Disorders 2016

November 11, 2016

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

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

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

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

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


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

October 23, 2016

Over the years, including on January 12, 2015, IBS Impact has written extensively about how in various countries, in-person support and other services for people with IBS and families in their own local communities are very hard to find. Either they don’t exist, unless one happens to live near a major functional GI research center, or if they do exist, enough people with IBS and health care or social service providers they may deal with simply do not know they are there. Fortunately, online resources for information and support, some higher quality than others, are well established means of communication, but even in the social media age, not everyone is comfortable online, and it remains difficult for many newly-diagnosed and veteran IBSers alike to sort through which sites and groups are reputable and useful and those that are not. Individuals differ, and even with the same individual, preferences, needs and logistical concerns may vary in different circumstances or phases of life. IBS Impact advocates increasing a range of programs and means of reaching people so that people with IBS and families have choices.

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

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

The first training date for October 2016 has already passed, but several more are planned through 2017. At this time, the trainings will be held in Sheffield, at venues near the IBS Network office, but if there is sufficient interest, other locations will be considered. Based on a draft schedule for the first session, one can anticipate a several hour event with breaks, for which IBS-friendly refreshments and lunch will be provided.

For further information, please see the following link from the IBS Network website or contact Sam Yardy directly at sam@theibsnetwork.org

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

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


Interview and Video with Emeran Mayer, MD of UCLA on the Gut-Brain-Microbiome Connection in IBS

September 30, 2016

Earlier this month, WBUR, the Boston affiliate of National Public Radio published a recent interview with Emeran Mayer, MD, Director of the University of California/Los Angeles Oppenheimer Center for Neurobiology of Stress and Resilience, a leading research center for irritable bowel syndrome and other neurologically-based chronic pain conditions. Dr. Mayer also recently published a book on the mind-gut connection and is a longtime board member of the International Foundation for Functional Gastrointestinal Disorders (IFFGD).

The gut-brain or brain-gut connection has been scientifically established for over two decades to be a major factor in IBS and other functional gastrointestinal disorders, and has recently evolved to the brain-gut-microbiome connection as a result of further research since then.

Excerpts of WBUR’s interview with Dr. Mayer are available at the link below. Also included on WBUR’s web page for this article is an embedded link for a TEDxUCLA talk Dr. Mayer gave on the subject in 2015. The TEDxUCLA video has a run time of a bit over 21 minutes.

http://www.wbur.org/commonhealth/2016/09/16/the-mind-gut-connection

Although these concepts are complex and may take some time for people with IBS and family members who do not have science backgrounds to understand, the time and effort is well worth it to know more about what IBS is, might be, and is not.


Virtus Pharmaceuticals Initiates Voluntary Recall of Some U.S. Hyoscyamine Tablets -Sept. 2016

September 19, 2016

IBS Impact has recently learned of a voluntary recall of some batches of some forms of hyoscyamine tablets distributed by Virtus Pharmaceuticals. Hyoscyamine (Levsin, Levbid and other various brand names) is an anticholernergic agent prescribed for some adults and children with IBS or related functional gastrointestinal disorders. As this is a generic medication, not all hyoscyamine comes from Virtus, but readers are advised to check.

The recall involves certain lots of sublingual tablets, oral disintegrating tablets and regular tablets in the 0.125 strength only. These lots have been distributed throughout the  United States and the commonwealth of Puerto Rico since March 2016. According to the official FDA recall report, Virtus initiated this recall because some of the tablets contain either too little or too much hyoscyamine. A small portion of the affected lots also have incorrect expiration dates. There have been a few reports of various adverse symptoms from those lots that contained an unintended overdose. While the individuals required medical treatment, none of the reported situations appeared to be life threatening, and as far as is known, have resolved. Full details on the affected lot numbers and reported symptoms are in the link above. People with medication from these lots are advised to stop taking the medication and consult a doctor, especially if they have experienced any unusual symptoms or side effects. Contact information for both Virtus and the FDA is contained within the linked page.

IBS Impact encourages affected individuals to read the above links thoroughly and bring any questions or concerns to their own health care providers.


Are People with IBS in the U.S. Having Difficulty with Access to Certain Medications?

August 30, 2016

The pharmaceutical company Mylan has received intense negative publicity recently over significant price increases for Epipens, epinepherine autoinjectors for use in life-threatening allergic reactions. However, the University of North Carolina Center for Functional GI and Motility Disorders also shared on social media an NBC News article that claims many other Mylan-supplied prescription medications have also experienced significant price increases over time. These include dicyclomine (Bentyl), an antispasmodic used by many people with IBS  and metoclopramide (Reglan), a prokinetic commonly prescribed, among many other uses,  for  gastroesophageal reflux disease (GERD) and other gastrointestinal conditions that may coexist with IBS.  As both are generic drugs, each has several suppliers. Not all individuals using these medications receive them from Mylan, but as one generally has no control over the specific distributor used by a given pharmacy, this issue is a potential concern.

Also, a moderator of a large Internet support group passed along an August 12, 2016 blog post from the website GoodRx.com detailing the removal of numerous prescription drugs from the 2016 formulary lists of Express Scripts and Caremark. Express Scripts and Caremark are both companies that administer pharmacy benefits and mail-order pharmacy services for U.S. health insurance companies, self-insuring employers and in the case of Express Scripts, TRICARE, the insurance system for active, reserve or retired U.S. military personnel, some National Guard members, and military family dependents. The formularies are lists of specific medications approved for coverage. In the U.S.,health insurance is traditionally an employer-based benefit for the largest subset of citizens and residents, and typically,  employees have limited or no choice in the specific insurance plans offered to them and/or their families. Thus, again, one would most likely have no control over which of the two companies with which one’s insurance provider has a contract. From the linked lists, it appears lubiprostone (Amitiza), a chloride channel activator, which is FDA approved in the U.S. for use by women with irritable bowel syndrome with constipation (IBS-C), has been newly excluded from the Caremark formulary. Duloxetine (Cymbalta), a selective serotonin-norepinephine reuptake inhibitor is used by some people with IBS for pain and/or commonly coexisting depression and/or anxiety. It has also newly been dropped by Caremark. This issue would also appear to merit possible concern.

So IBS Impact asks U.S. readers, are these media reports consistent with real world experiences? Are people with IBS having problems getting access to medications they take regularly? If so, is either of these reported issues a widespread, systemic problem for individuals or certain subgroups in the IBS community? Please feel free to leave comments on this post.

 


Updates to IBS Impact.com for August 2016

August 19, 2016

Over the past few months, IBS Impact has been working on the latest round of updates to our main site. This is always a work in progress as new and useful information comes available, but this is a good time to draw readers’ attention to some of the changes.

There have also been new details and resources added in the latest news column on the left of the home page,  IBS page, advocacy page, research pageIBS studies page, resources pageIBS and children page and links page. Of particular interest are the progress of HR 2311, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, currently under consideration in the U.S. House of Representatives, and updated information for the recently released Rome IV international diagnostic criteria. A couple of new pediatric clinical trial opportunities have been added as well.

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). 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 countries which are among the top sources of hits to the site and this blog.

Because of the redesign and transfer of the site to new hosting in the fall of 2015, 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.

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 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 organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered.  A contact form can be found on the home page of the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.