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 (IBD) 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.


UNC Expert Update: What Parents Need to Know About Their Children’s Abdominal Pain” November 2014

November 30, 2014

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has just posted the November 29, 2014 installment of its free monthly online educational series for individuals and family members affected by functional gastrointestinal disorders like irritable bowel syndrome. This series is accessible at the following link: UNC Expert Update.

This month’s video,”What Parents Need to Know About Their Children’s Abdominal Pain,” is presented by Miranda van Tilburg, Ph.D, Associate Professor of Medicine at UNC and a leading researcher of irritable bowel syndrome and functional abdominal pain, especially in children and adolescents. Functional abdominal pain (FAP), also known as recurrent abdominal pain (RAP), is a diagnosis similar to IBS, but without disturbances in bowel habits that are characteristic of IBS. This specific video is less than 20 minutes long.

Expert Update allows people affected by functional GI and motility disorders or their families to ask questions of and give feedback to leading professionals in the field associated with UNC and other major research centers. Each monthly video is no more than 30-40 minutes in length, and available for viewing free of charge by anyone in any country who has an Internet connection fast enough for streaming audio and video. Viewers may then submit questions directly to the researcher through the UNC Expert Update page for up to 7 days after initial posting. Selected questions of general interest will be answered online shortly afterward so that all participants may be able to learn from them.

Obviously, the professionals involved in Expert Update are not able to diagnose or treat individual people over the Internet, and depending on the number of and types of questions they receive, they may not be able to address every question. However, they can and do respond to general questions, concerns and the occasional suggestion, direct people to other general resources as appropriate, and explain their topics and cutting edge research in a respectful and understandable way.

This month’s topic is a tremendous and unique opportunity for parents or guardians of children or teens with chronic abdominal pain resulting from IBS, FAP or another functional gastrointestinal disorder. Please consider taking less than half an hour of your time in order to learn scientifically accurate, state of the science information that may help your child and family.

IBS Impact thanks the series producer, Dr. Olafur Palsson, his colleagues at UNC and all of the participating experts for their long and ongoing commitment to functional gastrointestinal and motility disorder research, awareness and support of those of us who live with IBS and/or other functional gastrointestinal and motility disorders.

For more detailed background on the UNC Expert Update series, please see the October 3, 2014 post. For further resources specific to parents and children or teenagers who are dealing with IBS or FAP/RAP, please see the April 11, 2012 and June 27, 2014 posts and the IBS Impact main website’s page on IBS and children. Readers in the United Kingdom may be interested in the many country-specific links at the blog Abominable Abdominal,written by a parent of a preteen diagnosed with FAP and coeliac disease.