American Neurogastroenterology and Motility Society Facebook Live Chat on Pediatric Abdominal Pain, February 22, 2018

January 31, 2018

The American Neurogastroenterology and Motility Society (ANMS) has announced that it will be holding a Facebook Live chat from 7:00-8:00 PM Eastern Time on Thursday, February 22, 2018 on the subject of “Tips for Parents to Manage Their Child’s Stomach Aches ” The chat moderator will be Miranda van Tilburg, PhD Associate Professor in Clinical Research at Campbell University College of Pharmacy and Health Sciences in Buies Creek, North Carolina, USA. Dr. van Tilburg is a leading researcher on pain and gastrointestinal disorders in children and adolescents, including irritable bowel syndrome (IBS) and centrally mediated abdominal pain syndrome, also known as functional abdominal pain or recurrent abdominal pain.

ANMS’s public Facebook page is American Neurogastroenterology and Motility Society.

IBS Impact encourages parents, guardians and caregivers of youth with chronic gastrointestinal conditions involving make time to attend and participate in this open, public chat, which allows one to interact directly with a physician who is associated with a leading center for pediatric functional gastrointestinal and gastrointestinal motility research and clinical care. Participants will have the opportunity to  ask questions and/or give feedback about general needs and concerns regarding children and adolescents with these conditions.

A reminder to all interested parties: All information shared on Facebook in connection with this chat will remain online, potentially accessible to the public indefinitely and is designed to address issues of general interest within the scheduled hour. It is not an appropriate venue to seek diagnosis or treatment of an individual medical situation from Dr. van Tilburg or  other professionals who may be participating in the discussion. However, it is a quality, evidence-based and unique opportunity to further one’s self-education on the complex topic of chronic abdominal pain in children, for which there is generally less awareness. IBS Impact thanks Dr. van Tilburg and ANMS for making this chat available, with best wishes for a successful chat.

Alosetron Risk Evaluation and Mitigation Strategies Paid Survey for Women Using Alosetron (Lotronex) Opens January 3, 2018

December 28, 2017

IBS Impact has received this notice directly from Alosetron Risk Evaluation and Mitigation Strategies Program on behalf of the U.S. FDA, and is posting at the program’s request.  This is paid survey for women who have taken alosetron (Lotronex) for IBS-D anytime in the last 12 months. The exact text provided to IBS Impact follows in italics:

The Alosetron Risk Evaluation and Mitigation Strategies (REMS) Program is a program required by the Food and Drug Administration (FDA) to manage known or potential serious risks associated with a drug product. The manufacturers/sponsors of the program have a regulatory obligation to conduct a knowledge survey for female patients in the US who have taken alosetron within the last twelve months. Patients that meet the criteria for inclusion in the survey will receive $50 for completing the survey. The survey takes about 30 minutes and can be taken either online or by phone with a call center representative. Survey responses are aggregated and anonymized. No protected health information is required for the survey or provided to FDA or any prescribers. The survey opens on January 3, 2018. If you are a female patient in the US who has taken alosetron within the last twelve months, please call us at 1-844-267-8675 to take the survey.
The Alosetron REMS Program

Alosetron, also commonly known by the brand name Lotronex, is a prescription medication with FDA approval in the United States for women with severe diarrhea-predominant irritable bowel syndrome. Historically, because of past reports of serious and sometimes life-threatening risks when misused, alosetron was only available to those women for whom all other interventions had been ineffective or inappropriate, and there were tight restrictions designed to ensure and monitor patient and physician education and safety. After many years, in January 2016, the FDA lifted some of these restrictions, making alosetron more readily available, but as the medical risks remain, it is important that the FDA be aware of users’ experiences with and level of knowledge about this medication. IBS Impact encourages women recently or currently using alosetron to participate. Please address any questions or concerns about the survey directly to Alosetron REMS.

American Neurogastroenterology and Motility Society Pediatric IBS Twitter Chat, December 20, 2017

December 19, 2017

The American Neurogastroenterology and Motility Society (ANMS) has announced that it will be holding a Twitter chat from 6:00-7:00 PM Eastern Time tomorrow, Wednesday, December 20, 2017. on the subject of “Irritable bowel syndrome in children. What is it, and what treatments are available?” The chat moderator will be Peter Lu, MD, MS, Assistant Professor in Clinical Medicine at Ohio State University College of Medicine and physician and Nationwide Children’s Hospital GI Motility Program in Columbus, Ohio, USA

ANMS’s Twitter handle is @ANMSociety and the chat can be found using the hashtag #ANMSChat

IBS Impact encourages parents, guardians and caregivers of youth with irritable bowel syndrome. to make time to attend and participate in this open, public chat, which allows one to interact directly with a physician who is associated with a leading center for pediatric functional gastrointestinal and gastrointestinal motility research and clinical care. Participants will have the opportunity to  ask questions and/or give feedback about general needs and concerns regarding children and adolescents with IBS.

A reminder to all interested parties: All information shared on Twitter in connection with this chat will remain online, potentially accessible to the public indefinitely and is designed to address issues of general interest within the scheduled hour. It is not an appropriate venue to seek diagnosis or treatment of an individual medical situation from Dr. Lu or other professionals who may be participating in the discussion. However, it is a quality, evidence-based and unique opportunity to further one’s self-education on the complex topic of IBS, particularly IBS in children, for which there is generally less awareness. IBS Impact thanks Dr, Lu and ANMS for making this chat available, with best wishes for a successful chat.

GERD Awareness Week: November 19-25, 2017

November 21, 2017

This week is 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 former IBS Guide IBS Guide Barbara Bradley Bolen, PhD, and Emmy Ludwig, MD, some studies show that up to 81% 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 disorder awareness posters for anyone to hang or distribute in his or her own community, that are accessible from the IFFGD links posted here.

 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.

Veterans with IBS and Functional Gastrointestinal Disorders 2017

November 11, 2017

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 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 six 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 2017 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 six years after original publication, has continued to receive consistent hits from readers on most 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 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 2016, 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.

Designer Mychael Knight Could NOT Have Died From Irritable Bowel Syndrome (IBS)

October 23, 2017

Almost a week ago, fashion designer Mychael Knight, who was a former star of the U.S. reality television show “Project Runway,” passed away at the age of 39. It is unfortunate that he apparently suffered from chronic gastrointestinal issues that may or may not have contributed to his death at such a young age. While he apparently believed that he had irritable bowel syndrome (IBS), many of the symptoms described in numerous news reports from various sources are not consistent with IBS. Furthermore, IBS is never a life-threatening condition. It does not cause or contribute to death, directly or indirectly.  It is inaccurate and irresponsible of numerous print and online media sources to imply or state outright that Knight’s death was related to IBS. Nobody dies as a result of IBS.

While most media sources acknowledged that the cause of his death is not known or is undisclosed, many reporters surrounded that detail, in the same or adjacent passages, with mentions of Knight’s reported IBS. The New York Times wrote, “He [Knight’s friend and spokesman] did not specify a cause, but Mr. Knight had written on social media about his struggle with irritable bowel syndrome.” Time went further, writing, “…he [Knight] had written in the past that his struggles with irritable bowel syndrome were causing problems with his immune system, according to multiple reports.” The Washington Post wrote. “Knight had extensively shared his five-year struggles with irritable bowel syndrome, writing in now-deleted Facebook posts that he suffered chronic abdominal pain, a “leaky gut,” extreme fatigue and exhaustion.” Under a headline of “Mychael Knight Suffered From IBS Before Passing Away” Essence wrote:

Now, it’s be [sic] discovered that Knight shared his battle with irritable bowel syndrome (IBS) online, which put him in constant pain. “This year has really taken a toll on my health… badly,” Knight reportedly said in a social media post. “In short, IBS is a gastro-intestinal disorder in which the food I eat, my body doesn’t absorb (malabsorption) the nutrients from what I eat.”

 Despite his sickness, TODAY reports that IBS isn’t likely the direct cause of his death and that Knight’s family still doesn’t know the cause of his demise.
Again, it’s not just unlikely that IBS caused Knight’s or anyone’s death. It is impossible. These are the scientific facts according to decades of peer-reviewed medical research and clinical practice by highly credentialed university based researchers on every continent of the globe: IBS is a functional gastrointestinal disorder, or as now stated in the Rome IV international diagnostic criteria updated in May 2016, “a disorder of gut-brain interaction.” This means that the brain and the gastrointestinal tract do not communicate properly because of neurotransmitter issues, changes in the microbiome and other factors still under research. By definition, in functional gastrointestinal disorders, there are no visible structural or metabolic abnormalities detectable on currently available medical tests. Thus,”openings in my intestines,” as supposedly reported by Knight according to the Today article linked by Essence are not consistent with IBS. “Leaky gut” and “toxins” are concepts promoted heavily by alternative medicine practitioners, preying on individuals who are sick and desperate, but this is not accepted by reputable physicians as a real diagnosis.

Various functional GI disorders affect different parts of the gastrointestinal tract, but IBS, the most common condition in this category, affects the function of the colon, also known as the large intestine. The purpose of the colon is to store waste and reabsorb excess water. Usable nutrients are absorbed in the small intestine, higher up in the digestive tract. Under Rome IV, and its predecessor criteria, Rome I, II and III, Knight’s “extreme weight loss” as reported in the Today article linked by Essence, is one of several red flags/alarm signs that an individual’s symptoms are not IBS or are perhaps IBS along with an additional unrelated diagnosis that causes the extreme weight loss. Many people with IBS who restrict many types of food or stop eating much altogether in an attempt to avoid symptoms will lose some weight as anyone who makes such dietary changes will, but this is not from the IBS itself. People with IBS  and no other conditions that would affect weight who eat a reasonably balanced diet regularly do not lose significant weight or quickly regain any previously lost. Some people with IBS, like others in the general population, even are overweight due to factors also unrelated to IBS. Even people with very severe IBS do not typically look “incredibly fragile” and do not need to be “in a Georgia hospital… getting treatment for IBS” as reported by TMZ. While management strategies for IBS vary based on individual symptom patterns, preferences and effectiveness, ranging from diet, to stress management, to psychological therapies, to a limited number of available over-the-counter or prescription medications that are effective for a subset of affected people,  there is nothing that can be done for IBS as a hospital inpatient that cannot be done by the individual with IBS at home.

Numerous media sources, including the Time and TMZ  articles, link Knight’s alleged IBS to his immune system. The Today article quotes Knight’s social media posts as:

toxins from that food leak into my bloodstream, which can cause autoimmune diseases (Diabetes, Lupus, Celiac Disease, Rheumatoid Arthritis).B/c of which, I suffer from chronic abdominal pain/diarrhea/nausea, EXTREME fatigue & exhaustion, food sensitives/allergies, foggy brain, headaches, etc. As of recent, I’ve develop [sic] some acute Autoimmune responses like Psoriasis, inflamed joints, and small respiratory issues.

However, irritable bowel syndrome (IBS) is not overtly connected to the immune system, nor is it an autoimmune disorder. The research evidence has never linked it in any way to diabetes, lupus, psoriasis, rheumatoid arthritis or respiratory issues, though since IBS is an extremely common condition as are many of these, statistically, some people will have more than one.  Celiac disease and food sensitivities may also coexist with IBS and cause some similar symptoms to it, but they are separate conditions with different causes and treatments. IBS is known to commonly coexist with some other chronic pain conditions, none fatal, but does not or lead to cancer or any other medical conditions and is not life-threatening.

Yes, irritable bowel syndrome causes abdominal pain, intermittently or constantly for most affected, predominantly diarrhea for about a third, fatigue/exhaustion, nausea and/or headache for some. When moderate to severe, as functional GI researchers estimate it is for about 60% of people with IBS, it is indeed extremely debilitating and disruptive. However, that is where the similarities with Knight’s description stop. Functional GI researchers routinely emphasize that these symptoms are very common to many different disorders and are not necessarily, in themselves indicative of or related to IBS. IBS is also a very distinct diagnosis and not the catchall term that many people with IBS, family members, some medical professionals and the general public continue to believe. Physicians quoted by Today and by FOX 29/Philadelphia  (television news video, runtime 3:38) speculate that Knight may have had a form of inflammatory bowel disease (IBD) such as Crohn’s disease or ulcerative colitis, which can cause extreme weight loss, structural changes in the gastrointestinal tract from inflammation, and potential complications in many of the body’s systems, including arthritis, psoriasis, and respiratory issues, as mentioned by Knight. Although with appropriate medical care, most people are able to manage inflammatory bowel disease for many years, it is possible to die from a complication. This sad outcome simply does not happen with irritable bowel syndrome (IBS). Unfortunately, because of the similarity in acronyms and some symptoms, the two are often confused.

A subset of people with inflammatory bowel disease also have irritable bowel syndrome, and it is possible that Knight was one of these people. It is also possible that the physicians in the news sources have made incorrect speculations, and Knight’s issues were something else entirely.  However, Knight’s posts, as reported, mention so many different, unrelated issues that it is probable that he was at least partially confused about his own diagnosis and may or may not have been receiving reputable, appropriate medical care as a result. If so, and that led to his premature demise, that is tragic. IBS Impact urges all those who are experiencing gastrointestinal symptoms not to rely on search engines or quack cure theories that abound, but to seek diagnosis and care from reputable, qualified physicians and to  supplement this with educational information from evidence-based organizations like the International Foundation for Functional Gastrointestinal Disorders for suspected irritable bowel syndrome, the Crohn’s and Colitis Foundation for inflammatory bowel diseases, the Celiac Disease Foundation for celiac disease, or Food Allergy Research and Education for food allergies.

However, what is also disconcerting is that so many media sources, ranging from highly reputable national outlets to local sources and obscure, less reputable ones, in print, broadcast, and online, took his statements at face value and proceeded to disseminate them worldwide, attributing them to irritable bowel syndrome as if it were the cause of Knight’s death.  This is true of many other media sources besides the ones mentioned and linked in the post. Relatively few simply reported that the cause of his death is unknown or undisclosed, and even fewer, like Today and Fox News 29, linked above, chose to do any basic fact checking which would have revealed the basic information that irritable bowel syndrome is never fatal. If it were, with, conservatively, 10-15% of people affected by IBS in most countries worldwide, we would have a global public health emergency. As it is, decades after IBS/functional GI professionals began to establish that IBS is a real disorder, they, IBS organizations and advocates with IBS continue to labor to dispel the most basic and enduring misconceptions. With these new and plentiful reports about Knight on the internet, these inaccuracies will remain with us for years to come. To recently diagnosed or not very medically-informed people with IBS and their families, who often have a great deal of anxiety about symptoms, which in turn, are exacerbated by further anxiety, media stories incorrectly implying or stating that Knight died of IBS are needlessly alarming. Whatever the truth of Knight’s medical history, treatment, and death, which is between his survivors and his health care providers, he could not have died from irritable bowel syndrome because no one does. IBS Impact challenges all journalists who reported on his IBS to do better. IFFGD’s resource page for members of the media is a good start. Public awareness of any medical condition is a positive thing, but not if it is blatantly inaccurate.

Thoughts for Invisible Disabilities Week, October 15-21 2017

October 15, 2017

The Invisible Disabilities Association, a not-for-profit organization in Colorado founded two decades ago by the spouse of an invisibly disabled person,  has designated this week as its annual Invisible Disabilities Week. An invisible disability is any disability or ongoing medical condition that may have disabling effects that may not be readily apparent to casual observers. While any disability, visible or invisible, may present physical, psychological or societal barriers at least some of the time,  there often are specific challenges to others’ awareness and understanding when invisible disabilities cannot be seen.

Many of us with irritable bowel syndrome (IBS) know this well. Almost all of us can relate to one or more of the following questions or considerations at some point in our journey with IBS. Do we tell family members, friends, acquaintances, employers, teachers and classmates about IBS? How much and how often do we discuss it if we do? Do they believe us? Do they– and medical professionals– believe IBS pain, exhaustion, GI symptoms, stress, commonly co-occurring conditions like anxiety or depression and other non-GI symptoms are real and worthy of help? Why do they say things like, “You look good,” when we’re in bad shape? Do they really get it? If they do get it, will they continue to support us months or years later when IBS, as a chronic, incurable condition, doesn’t go away? If they don’t get it, is it worth trying to educate or not? Why are there not better medical options for our poorly understood condition?  Why don’t we have more resources related to X? Why doesn’t some celebrity come along and donate millions for a cure?

It is well-known in the IBS community, both anecdotally and through research, that many  people with IBS are isolated. Some do not have a diagnosis or support for years. Some withdraw from discussing IBS with others, inside or outside of the IBS community, because of negative interactions or  disappointing symptom management results. Still others seek information and help from various IBS forums, but unless they have other disabilities or medical conditions, some of which commonly overlap with IBS and others which are separate, they often are not aware of the common, similar experiences we share with groups affected by other invisible disabilities and health conditions. While gaining that knowledge may not help the medical situation per se, some people with IBS gain perspective and comfort in knowing that we are not alone and in finding a certain solidarity with other health communities.

According to the IDA, because there are so many types and levels of invisible disabilities and individual people are also affected quite differently, the organization chooses not to list or focus much on specific diagnostic labels. Most of their resources and awareness materials are applicable to a wide range of people with an equally wide range of invisible disabilities.

IBS Impact encourages readers to check out the site and see if anything is helpful to them. Also, for those so inclined, take on the challenge with which the IDA presents us this week, and talk to people or share something on social media about IBS.