UNC Online Chat: “The Doctor-Patient Relationship” on October 4.

September 26, 2011

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place on Tuesday, October 4, 2011 from 8:00-10:00 p.m. Eastern time. Albena Halpert, MD from the Boston University School of Medicine will be presenting on the topic of the doctor-patient relationship as it relates to functional gastrointestinal disorders like IBS.

IBS Impact encourages all people with functional gastrointestinal disorders, including IBS, and/or their concerned family members and friends to make time for these periodic chats, which are an excellent, unique opportunity to interact directly with leading researchers in the field of functional gastrointestinal and motility disorders, ask questions and give them feedback about our needs and concerns

To participate in this or any UNC chat, go to the Center home page about 10 minutes before the starting time, click on the chat icon and follow the instructions given there.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact to be of interest.

Telling Others (or Not) About IBS

September 18, 2011

On various IBS support forums, the question frequently arises of whom or how or if to tell about our condition. For some people, the onset or course of IBS is so sudden, severe and/or debilitating that hiding it is not a viable choice. For others, the decision is not as simple, and there is a range of ways that individuals deal with it. Some people are very open with almost everyone. Conversely, there are those who have had severe symptoms of apparent IBS for years, but have rarely or never mentioned anything to anyone, including immediate relatives and doctors.

These are very personal decisions based on individual circumstances that may change over time. Some people are more private than others and certain situations may suggest the need for more discretion. Outside of an IBS support forum, most people probably would not find it necessary to disclose to random strangers whom they might never encounter again, nor casual personal or business acquaintances. Although in the U.S., Section 504 of the Rehabilitation Act and the Americans with Disabilities Amendments Act broadly cover IBS for the purposes of education or employment discrimination, and disability laws in some other countries or provinces may apply to their citizens with IBS, some people still find disclosing to teachers, classmates, or coworkers to be a sensitive issue.

Many of us with IBS who have told others about it have encountered some less than ideal reactions. On the relatively benign end of the spectrum, it might be well-meaning people not knowing what to say or do or appearing to become bored with us mentioning IBS, They may offer superficial comments about some intervention we have heard about many times before and perhaps tried and failed, or about another acquaintance with IBS who is doing just fine while we are struggling. On the other end, other IBSers anecdotally report enduring blatant and repeated hostility and ignorance from people close to them. Eventually, some people with IBS may tire of attempting to educate others in addition to coping with symptoms, as well as the usual demands of daily life. Some people with IBS, faced with negativity or rejection, decide that if others cannot be supportive, they don’t need those relationships. Other IBSers stop discussing IBS at all, or never start, going out of their way to conceal it.

This dynamic has been observed frequently on various online forums in the context of questions about avoiding food triggers at family or social occasions. Common advice from various fellow IBSers is to say, “I’m not hungry.” “I ate before.” or “I’m allergic to X.” “I’m on a diet.”

Surprisingly much less often, the suggestion is, “I have IBS,” or for those who prefer to be more general but still truthful, “I have sensitive digestion” or “I can’t eat that for medical reasons.”

While small white lies are somewhat understandable on an individual level, they become problematic when, for millions of IBSers, the default reaction is to minimize and obscure the real struggles of severe IBS to the point of making our community nearly invisible to the general public. The IBS Impact founder regularly encounters highly educated, generally socially aware people in various fields who have never heard of IBS.

Those of us in developed countries live in an era when food restrictions— whether for specific medical conditions like diabetes, celiac disease, life threatening food allergies, kidney failure, hypertension, high cholesterol, or gastroesophageal reflux, or for religious tenets or simply as lifestyle choices– are extremely common, and where a range of specialty food products, stores, websites and books are increasingly available. In some states in the U.S., every restaurant or eating establishment, such as a school or employee cafeteria, is legally required to post or include on menus a statement inviting those with food allergies or restrictions to disclose them to the staff. In this context, is IBS so different as to be unmentionable?

Many people with IBS complain that those without IBS don’t understand. The question is if we, as individuals who are affected, don’t tell them anything, how will they learn to understand? As some IBSers have found, the effort of hiding IBS and wondering who knows what may actually exacerbate IBS for those who find their symptoms highly affected by stress.

Other IBSers say they wish family and friends would seek out information on IBS and educate themselves. Some concerned relatives and friends do just that, and it is positive to encourage more to do so. However, many available sources are outdated, scientifically inaccurate or reinforce popular misconceptions. As each person with IBS has a unique experience, even reputable general data may or may not apply to a specific individual’s particular situation. If it is difficult enough for IBSers and some professionals, who have a stake in good information, to separate the reputable resources from the questionable, without our proactive guidance, what can we reasonably expect of people without IBS who don’t?

Being good self-advocates implies trusting enough in the truth of our own experiences and the scientific facts to be honest with those around us when an appropriate situation presents itself. Some people will be receptive. Some will not, but may learn in time. Being a self-advocate can be slow, it can take work, and some IBSers have more patience and resources for that than others. But sometimes we can be surprised by the receptivity and kindness of those around us—or how many of them have IBS or a loved one with IBS themselves.

The IBS Impact main website has a section of original articles for IBSers to share with family and friends, written just for our site by people who support IBS awareness and advocacy. Visitors also may browse other pages of our site and those of various reputable resources we have linked. We welcome new submissions and suggestions. Simply use the contact links on the home page.

U.S. Citizens, HR 2239 for Functional Gastrointestinal and Motility Research Still Needs Support.

September 12, 2011

UPDATE: HR 2239 did not pass in the 112th Congress. In February 2013, the Act was reintroduced in the 113th Congress as HR 842. Please see the March 2, 2013 post or click on the HR 842 category on the blog sidebar for updated information.

Congress is in session this week after the summer recess. As your Representatives return to Washington, DC, this is a good time to remind them of the need for research on IBS and other functional gastrointestinal or gastrointestinal motility disorders. HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011, is currently in the House of Representatives.

This bipartisan legislation’s lead sponsor is Representative F. James Sensenbrenner, Jr. (R-WI-5) and he has already been joined by co-sponsors, Representative James Moran (D-VA-8) and Representative Peter Welch (D-VT) If you are a constituent of any of these Representatives, please write or call to thank him for his support.

If you are a U.S. citizen residing elsewhere, and you have not contacted your own Representative yet, or you contacted him/her some time ago without receiving a response, please write or call to urge him/her to co-sponsor this important bill on behalf of people with IBS and/or other functional gastrointestinal or gastrointestinal motility disorders. For more information on this Act and how to help, please see IBS Impact’s previous blog posts from July 6 and August 1. or join IBS Impact.

IBS and Extraintestinal (Non-GI) Symptoms

September 6, 2011

Health websites, articles or books directed at the general public typically describe IBS symptoms as abdominal pain and diarrhea, constipation or alternating between the two. This has led to the commonly used abbreviations IBS-D, IBS-C or IBS-A, or, more recently, sometimes IBS-M for mixed. But these different “types” are not always clear-cut in each individual with IBS, and sometimes shift over time. The international standard for diagnosing IBS, the Rome III criteria(see page 889), does not use these categories. Rather, it refers to abdominal pain or discomfort and changes from a person’s normal, symptom-free pattern in the form or frequency of stools. Still, up to the present, IBS treatment has focused mostly on reducing the single predominant symptom and IBS clinical trials screen mostly based on these few symptoms, as they are the ones that, by definition, all people with IBS will share.

What is less obvious to people with newly diagnosed IBS, some of their medical providers and the general public is that these are not necessarily the only symptoms a person with IBS might experience. Symptoms vary widely among individuals, so it would be equally incorrect to assume that each person with IBS must have additional symptoms, or, if additional symptoms exist, that they must be from IBS, rather than an unrelated medical condition. Still, there needs to be greater awareness that some people with IBS do have other symptoms that appear to be related to IBS but are not always recognized as such, and that they often compound the difficulties of finding appropriate treatment interventions and maintaining a productive and enjoyable quality of life.

Bloating, excessive gas and strong body odors are other gastrointestinal symptoms that are anecdotally reported by many people with IBS, but additional symptoms can also be what the medical profession calls “extraintestinal” or non-gastrointestinal. An article by Olafur S. Palsson, PsyD and William E. Whitehead, PhD at the University of North Carolina Center for Functional GI and Motility Disorders lists 26 non-gastrointestinal symptoms reported more commonly by people with IBS than in comparison groups, including fatigue, headaches, muscle pain or stiffness, sleep disturbances, twitching of the eyes, frequent or difficult urination and flushing of the head and neck among many others. In some cases, some of these additional symptoms may indicate a diagnosable overlapping condition. Statistically, IBS is known to coexist frequently with fibromyalgia, chronic fatigue syndrome, endometriosis, temporomandibular joint disorder, interstitial cystitis and vulvodynia. All of these are also functional pain syndromes, and research is ongoing to discover if there are common causes. But sometimes people with IBS may experience non-GI symptoms without meeting the criteria for another diagnosis.

Some time ago, the IBS Impact founder posted in another large IBS online forum asking readers, in an informal, non-scientific survey, to list all symptoms each person believed were related to his or her own IBS. Readers were specifically asked to include symptoms that might not generally be considered typical for IBS, but to exclude any symptom that might be related to any other known medical condition the person had. The replies ranged from 5 to 22 separate GI or non-GI symptoms, many, but not all, on the UNC list linked above. The IBS Impact founder experiences a high number and has found the existing IBS resources inadequate to deal with them, since they do not add up to a specific overlapping condition. Obviously, the cumulative negative impact of many symptoms, even if individually mild or moderate, is potentially greater and more complex than for those who experience few symptoms.

IBS Impact focuses on advocacy and awareness, not on treatment. Only qualified medical professionals can diagnose IBS or any other condition. IBS Impact urges people with IBS to report all symptoms to their health care providers, not just the well-known “textbook” ones. An overlapping diagnosis and treatment may be available. Even if this is not the case, some physicians may become more aware of the range of symptoms and issues that people with IBS experience. IBS Impact also calls on clinicians and researchers to ask their patients about non-Rome criteria or extraintestinal symptoms, to design their studies and surveys in ways that accommodate such responses, and to strengthen their collaboration with researchers of overlapping conditions in order to accelerate better scientific answers, treatments and social supports for all who are affected by these often debilitating disorders.

For reputable resources for overlapping conditions, please see the links page on the IBS Impact main website.