UNC Online Chat: “IBS Beyond the Bowel” (Non-Gastrointestinal Symptoms) on December 6.

November 28, 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 Tuesday,  December 6, 2011 from 8:00-10:00 p.m. Eastern time.  Olafur Palsson, PsyD. of the Center will be presenting on””IBS Beyond the Bowel:  Why Do Some IBS Patients Have So Many Non-Gastrointestinal Symptoms and What Is the Impact of Those Extra Symptoms?”

IBS Impact thanks Dr. Palsson and his colleagues at the Center for being responsive to the suggestion of this topic by a few IBS Impact members. People with IBS, and/or their concerned family members and friends are encouraged to make time to attend and participate in  this and other UNC chats, which are an excellent, unique opportunity to interact directly with leading researchers, 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. The current chat announcement on the Center site also includes a list of upcoming topics scheduled for the next several months.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29 to be of interest.

For background information on the topic of non-GI symptoms and IBS, see this September 6. post.

Broadening Peer Support and Mentoring Options for People With IBS

November 18, 2011

For many people with IBS, whether recently diagnosed or dealing with symptoms for many years, there are limited or no opportunities for mutual support in their own communities. This can be true even in large metropolitan areas where support groups for various disabilities and medical conditions are readily found through referral sources such as local organizations for a given condition, health care providers and hospitals, human services agencies, and in the U.S., local branches of the Self Help Clearinghouse.

The shortage of local resources for IBS appears to result from various factors. In many countries, laws or internal policies of organizations regarding medical privacy restrict health or social service providers or other entities from sharing information about other patients, clients or members with IBS.  Although many other health and disability communities are easily able to have their networking programs comply with the laws by having participants sign opt-in releases of names and contact information, providers who regard IBS as just an occasional nuisance for most affected people, or who do not have the staff or volunteers to set up appropriate mechanisms, may shy away from doing so. There may not be a national organization for IBS or related disorders in a given country, or one that is large enough to have local affiliates. Some people with IBS have symptoms severe enough that it is difficult or impossible to leave their homes, or they may be reluctant to identify themselves as people with IBS, so it might be difficult to reach a critical mass of members able and willing to sustain a support program over the long term.

Thus, for many years, with the advent of the Internet, a variety of support forums have been developed online. Many of the more established ones appear on the links page on IBS Impact’s main website. Some, such as the Irritable Bowel Syndrome Self Help and Support Group or Help for IBS,  were started by individuals with IBS, or in the case of Healing Well, which covers various conditions, another chronic illness. Other GI-oriented forums are affiliated with organizations, such as the Association of Gastrointestinal Motility Disorders, or more recently, the Digestive Health Alliance of IFFGD, though neither resource is IBS-specific.  Barbara Bradley Bolen, PhD, IBS blogger for About.com has a forum where readers can post. Several IBS or GI-related Facebook groups or pages exist, some as extensions of the sites above.

Many online forums have been useful to IBS Impact members and others with IBS at various times. They allow one to connect with peers in many countries and exchange a range of real life, “been there, done that” experiences and information that one is simply not able to get from a book or a busy medical practice, no matter how well-intentioned physicians or their staff may be. However, online venues have their limits. Sometimes members post medical misinformation. Every IBS site is eventually contacted by scammers and spammers peddling miracle cures or dubious surveys or websites, and it takes vigilance for owners and moderators committed to being reputable resources to intercept those attempts without preventing legitimate, open dialogue. While some people find largely anonymous support forums freeing places to discuss an embarrassing condition like IBS, others may find multiple conversation threads of high traffic forums or unburdening themselves to large numbers of strangers to be intimidating or confusing to navigate. Conversely, those who are wary of public disclosure may not find the“real name” culture of Facebook to be a good fit, and some smaller, newer or lesser known forums may not have sufficient web traffic to be consistently useful. Like IBS symptoms themselves, one’s preferences for information and support are individual and may change over time.

Thus, the broadening of options in different formats, that may encompass those with IBS who use the Internet rarely or not at all, would be a positive step. Although the resources are not IBS-specific, AGMD, founded by a person with a GI motility disorder, also offers an opt-in networking directory to paid AGMD members, as well as several monthly support groups– an in-person one in its local Lexington, Massachusetts area, and telephone support groups for “patients”, “newbies” diagnosed in the past year, and parents of children with motility disorders.

Another new option, Lotronex Connex, is offered by the pharmaceutical company Prometheus, the current maker of Lotronex (alosetron hydrochloride). Lotronex is a prescription medication approved by the U.S. Food and Drug Administration for women with severe IBS with diarrhea who have not obtained adequate relief from other interventions. According the recent announcements by the IBS Self Help and Support Group and Prometheus’ own website, this program is open to women currently taking Lotronex who volunteer to undergo online training and provide some personal information, such as geographical location, age, years with IBS-D and employment status, for matching as a phone or email support mentor to women with similar characteristics who are considering or newly using Lotronex.

Prometheus emphasizes that a mentoring relationship should not be used to give or receive medical advice. As some readers may be aware, in 2000, Lotronex was removed from the market because of  risks of serious side effects and a few deaths, as reported among some people who took it. However, because of sustained advocacy by those who found Lotronex very effective for them, the medication was reinstated with several restrictions in 2002. Background information on this issue can be found on the FDA page for Lotronex, and these 2002 news reports from the New York Times and Reuters. IBS Impact, which has no connection to Prometheus or any other pharmaceutical company, encourages readers who consider Lotronex or the mentoring program to familiarize themselves with the subject and consult their physicians so that they can make informed choices best for them.

IBS Impact will be interested to see how these support alternatives develop and challenges all those interested in quality of life issues for people with IBS to call for the continuing development of  innovative programs. We look forward to a future when a range of different types of resources, offline as well as online, are available, well-publicized and easily accessible in local communities to all people with IBS who seek such help.

Veterans With IBS and Functional Gastrointestinal Disorders

November 11, 2011

Today is Veterans Day in the U.S., and as such, a good time to highlight some of this blog’s previous posts on veterans’ issues. U.S. veterans  and current service members who have been deployed in the Persian Gulf/Southwest Asia region have been shown by multiple studies to be at even higher risk of IBS and other functional GI disorders than the general population. Since these disorders are already quite common in general, the unmet needs for veterans and service members are great.

Here is IBS Impact’s August 12 post on the recognition by the Veterans Administration of irritable bowel syndrome and functional gastrointestinal disorders as presumptive service connected disabilities for Gulf War veterans.

Here is a followup post on August 25 that links to IFFGD’s Veterans’ Advocacy Taskforce.

IBS Impact encourages veterans, service members and families in the IBS and functional GI community to inform themselves on these resources and to consider participating in self-advocacy activities.

Representative Baldwin of Wisconsin Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

November 11, 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.

According to THOMAS, the Library of Congress legislative database, as of late last week, Representative Tammy Baldwin (D-WI-2) has signed on as a cosponsor to the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011.

The 2nd Congressional District of Wisconsin encompasses southern Wisconsin, including Dane, Columbia and Green Counties and parts of Jefferson, Sauk and Walworth Counties. The state capital of Madison and its suburbs are in this district.

Last year, in the 111th Congress, Representative Baldwin was the lead sponsor of H. Res 1309, a House Resolution for IBS awareness. Her continuing commitment to the IBS community is appreciated. If you are a constituent of Representative Baldwin, please write or call to thank her.

In officially supporting HR 2239, Representative Baldwin  joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5) and co-sponsors, Representative James Moran (D-VA-8), Representative Peter Welch (D-VT), Representative Elton Gallegly (R-CA-24), and Representative Jesse Jackson, Jr. (D-IL-2).  U.S .citizens residing in the districts of Representative Baldwin’s colleagues listed here,  please thank them as well.

According to the information on THOMAS, it appears that the bill is currently under consideration in the Subcommittee on Health. If you would like to see a list of the members of that Subcommittee, click here and scroll down to the fourth subcommittee listing.

U. S. citizens,  if your Member of Congress is not yet a co-sponsor of HR 2239 and you have not contacted him or her recently to ask for his or her support, please see this previous post from July 6 for links to the bill and  more details on how to do so.  Often, it takes multiple attempts to elicit any interest from legislators, so if you do not receive a reply, do not hesitate to try again or to switch contact methods until you attract attention.

Your personal experiences as a person with IBS and/or other functional GI/motility disorders, or as a concerned family member, friend or colleague, are most effective in communicating to legislators and their staff that there are real human beings behind the statistics.

It may also be helpful to note that HR 2239 is bipartisan legislation (supported by members of both parties) and according to IFFGD discussions with IBS Impact,  is “revenue-neutral,” meaning that there will be no additional taxes or spending added to the current federal deficit if it is enacted. Discretionary funds are available at the National Institutes of Health to be allocated if Congress directs NIH, through this Act, that functional gastrointestinal and motility disorders are a priority. Congress will only do so if we, as a community, are able to show them the importance of the research, education and FDA coordination provided for in HR 2239.

Check back on this blog or join IBS Impact’s Yahoo discussion group for further updates on HR 2239 as they occur.

New Updates to IBS Impact.com for November 2011

November 10, 2011

IBS Impact’s webmaster has recently completed updates to several pages of our main website. These additions and changes include the most current information on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2239), the addition of several open clinical trials for IBS, some of which have been previously highlighted on this blog, but others that have not, new links to some of this blog’s most popular posts, as well as other new and helpful resources.

Please feel free to check out the site here. Our goal with the website and blog is to provide a varied range of 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.

We welcome comments and suggestions. In particular, we would be interested in considering articles on IBSers’ own experiences with awareness and advocacy and perspectives from family members and friends on the subjects of assisting adults or children with IBS , or the impact of IBS on their own needs and experiences as concerned parties.

Four nations, the United States, Canada, the United Kingdom and Australia, are currently represented in resources on the main website, however, each month, the site receives visits from many more countries around the globe. As IBS is a very common health condition worldwide, we would like to be inclusive of as many visitors as possible in nations where English is a primary or  major secondary language. Therefore, we encourage our international readers outside the U.S. to alert us to resources, legislation, disability laws and benefits, and other concerns of interest to the IBS community in their countries.

Finally, we invite professionals in the fields of IBS/functional gastrointestinal disorders or commonly overlapping conditions  to contact us regarding open clinical trails that may be of interest to IBS Impact members, site visitors or blog readers.

Contact links for the IBS Impact founder and webmaster 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 for your interest and participation.

Continuing Conversations with the Media about IBS

November 6, 2011

The American College of Gastroenterology recently held its 2011 annual meeting, distributing various media releases on the newest findings in the field. One IBS-specific topic, a Mayo Clinic study on the relationship of cumulative trauma or stress on the development of IBS, has generated particular interest from the mainstream national media in the past week or so, prompting coverage  by Forbes, Fox News, Time  and USA Today, among others.

Any major research insights from a respected medical center like the Mayo Clinic are welcome, as is quality coverage from news sources outside of IBS websites or small health care publications.  For those who are interested in public awareness and advocacy for IBS, these occasions are an opportunity waiting to be taken.

Extensive, national coverage in mainstream media doesn’t come along often. It is usually prompted by  a well publicized research finding like this one or, earlier this year, Cedars Sinai’s work on the antibiotic Rifaximin, which is still considered a controversial potential treatment for small intestine bacterial overgrowth (SIBO) or IBS-D. Smaller regional and local sources, such as this report from the Pueblo Chieftain, a southern Colorado newspaper, appear more likely to run stories with basic information about IBS. Although this example mentions possible interventions at length, and refers to IFFGD, such stories frequently are not as detailed as this one, may have errors or may not offer any resources for further information. Outside the IBS community, veterans’ organizations and websites following the legislative process, public awareness of the new VA regulations making IBS and other functional GI disorders presumptively service-connected disabilities for Gulf War veterans or  HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, is scant.

Most media stories on any subject tend to die down quickly, but as self-advocates, readers of this blog can continue the conversation with the media and others who follow it. This task is made easier by the Internet age. Sometimes family and friends may forward a relevant article to people with IBS in an attempt to be helpful. If the sender is receptive, proactive self-advocates can use this as a starting point for discussing our own experiences with IBS and educating others. What is good about the content, and what is not so good? Does the treatment or research being discussed seem to correlate with our individual experiences or not? Even if no one sends such an article, people with IBS can send articles to others themselves. We can write emails or letters to editors or use the comment sections on media websites to explain our reactions.

Working with the media to highlight our issues and needs doesn’t necessarily mean granting a personal interview. Sometimes it is very simple outreach. A few years ago, the IBS Impact founder encountered  an online article riddled with factual errors, including confusion of irritable bowel syndrome and inflammatory bowel disease. A brief, polite email including a few links to correct information, was all it took to have the article promptly removed.  The IBS Impact website and blog usually get some hits from intelligently left comments and links left periodically on media articles. For more extensive awareness efforts, IFFGD has several Reporter’s Guides that can be downloaded by anyone and passed along to a journalist.

By making other readers and journalists aware, through our presence, that the community of people affected by IBS is huge and diverse—that there are different perspectives and experiences, successes and failures with different interventions— makes it clear to others that IBS, of all conditions, cannot be reduced to the sound bite of the day. The more we, as a community, are willing to do this, the better those without IBS will understand the complexities many of us with IBS  face physically, educationally, professionally and socially, and be more likely to support our efforts toward meaningful, productive change.

For original articles of interest to  those without IBS, see IBS Impact’s family and friends page on the main website. For more on telling others about IBS, see the September 18 blog post.

UNC Online Chat: “Grassroots Advocacy” for IBS and Functional GI Disorders TONIGHT, November 1, 2011

November 1, 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 tonight, Tuesday, November 1,2011 from 8:00-10:00 p.m. Eastern time. Dane Christiansen, Washington Representative of IFFGD, will be presenting on”The Importance of Grassroots Advocacy: How Your Voice and Your Story Can Make a Difference”

IBS Impact encourages all  of our members, people with functional gastrointestinal disorders, including IBS, and/or their concerned family members and friends to make time for this chat, which is directly relevant to the mission of IBS Impact and is an excellent, unique opportunity to interact directly with leading researchers and advocates 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.