Online Chats with Experts in Functional Gastrointestinal and Motility Disorders

July 29, 2011

Many readers of this blog may not be aware of an excellent, unique resource offered by the University of North Carolina Center for Functional GI Disorders, which is one of the most renowned centers in the United States for treatment and research of IBS and other functional GI and motility disorders.

The UNC is also known for active public outreach and education on functional GI and motility disorders and periodically hosts free, public online chats designed for people with functional GI and motility disorders. The UNC calls this series “Evening with the Experts.” These chats are usually scheduled for 2 hours. The evening begins with a video presentation by a UNC clinician and/or researcher on a previously announced topic. This portion typically lasts for 30-40 minutes. Following the video, the featured presenter. and often one or two other UNC researchers, are present to chat with the public online and in real time for the remainder of the session. Obviously, the UNC clinicians are not able to diagnose or treat individual people over the Internet, and depending on the number of participants at the chat, 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 way that most affected people can understand, even if they are not scientists.

This is a tremendous opportunity, especially for people with IBS or their loved ones who find that their local health care providers do not explain IBS to them adequately, are not fully up to date on standards of care or research on IBS, dismiss them or their IBS, or any number of common complaints from IBSers. Many people at UNC are world authorities and pioneers in the functional GI field who see patients whose FGIMDs are the most difficult to treat, and who have lived and breathed FGIMD research every day for years. These people take time out of their own busy evenings to make themselves available at no charge to any member of the public with an Internet connection fast enough to handle video, audio and chat technology. Some fine professionals do pay attention to IBSers if we take the time to show up and speak up. Unfortunately, many past chats have been sparsely attended, and some have been cut short to less than the allotted 2 hours because of this.

Knowledge is power. If you or a loved one has one or more functional GI or motility disorders, please consider taking 2 hours of your time when a chat is offered in order to learn scientifically accurate, state of the art information that may help you or someone close to you. If you cannot attend a specific chat, many video portions are archived on the Center website, although for privacy reasons, chat transcripts are not available. That is all the more reason to be there in the first place.

The next chat, scheduled on Tuesday, August 16, 2011, from 8:00-10:00 p.m. Eastern time, is with Stephan Weinland, PhD, who will present and chat on the topic of “Psychological Treatments: CBT, Hypnosis and Stress Management.”

For this or any other chat, go to the UNC Center home page about 10 minutes before the start time, click on the chat icon, and follow the instructions there. It is not necessary to register in advance.

Before some reader objects, no, IBS is not “in our heads”, but because of the dysfunction of the brain-gut axis, many IBSers have found cognitive behavioral therapy, hypnotherapy and/or stress management helpful to them.

IBS Impact is an advocacy and awareness site, not one that focuses on treatment/management. Please make your own informed choices about your individual situation in consultation with qualified health care providers.


Furthering the Science of IBS: Volunteer for Research Studies

July 26, 2011

Another very concrete way of contributing to future advances in the IBS field is by volunteering for research studies. There are opportunities in many countries that are designed to study various aspects of IBS. Some are focused on finding the causes of IBS. Others test promising new treatments. Still others address emotional and social aspects of IBS. Studies that may be available range from relatively quick and anonymous online surveys accessible to any person with IBS anywhere in the world with an Internet connection, to tests and treatment for a period of time at a hospital or other research facility. These more complex studies are, for scientific purposes, often restricted to subsets of people with IBS: for example, women only or men only, in a certain age range, perhaps of a certain racial or ethnic group, a certain subtype of IBS or people without specific details in their individual medical history that might affect the study results. Thus, although no one will qualify for every study, most people will qualify for some.

While short, one-time, online, phone or mail studies usually don’t offer any compensation, on-site studies that require a greater time commitment and complex procedures will usually conduct tests and provide any treatment being tested free of charge and sometimes a small payment meant to cover transportation to the study site or the like. When you consider a specific study, it’s important to be aware of any details like this before volunteering. If accepted to participate, you will generally be provided with a form to sign or a web page to agree to, verifying that you understand what is expected of you, your rights to ask questions or to withdraw from the study and the contact information for a person to whom you may direct questions or concerns. This is called “informed consent.”

The IFFGD has a helpful explanation of clinical trials here. The University of North Carolina Center for Functional GI and Motility Disorders has a registry for those who are interested in being contacted about studies in which the UNC is involved. Clinical Trials.gov is a huge database of studies for all types of conditions, including IBS. Although it is run by the U.S. National Institutes of Health, it lists studies all over the world. Many of the other resources linked on the IBS Impact research and links pages occasionally have listings of open studies seeking volunteers.

Here are just 3 IBS studies that recently came to IBS Impact’s attention:

UCLA researchers are looking for volunteers for a study of the effect of writing on symptoms of Irritable Bowel Syndrome (IBS). Eligible individuals will be asked to complete a survey at three time points as well as four 20-minute writing sessions. Participation will take a little over three hours over the course of four months. All portions of the study can be completed online and over the phone. For more information, please call (310)351-9353 or email klaird@ucla.edu.

UCLA IRB Number: G10-03-013-01A
Expiration Date: November 17, 2011

and

The Pediatric Pain Program at UCLA is conducting a study on Iyengar Yoga for young people aged 14-26 years with Irritable Bowel Syndrome (IBS). The study involves young people completing a 6-week course of yoga. Participants will also be asked to attend two laboratory sessions at a venue close to UCLA which will involve completing questionnaires, interviews, lab stress tasks and saliva samples and will last approximately 3 hours. All yoga classes will be free, and we will cover any parking expenses. For more information, please call (310) 475-3191 ext. 221.

Protocol ID IRB#11-001204

and

Tioga Pharmaceuticals Phase III trial of asimadoline for IBS-D seeking both men and women, ages 18-79, at multiple study locations throughout the U.S. For more information, see http://www.bellypain911.com

Even if these specific studies are not appropriate for you or your loved one with IBS, there are many more at the resources listed in this post, and new ones that begin at various times. If you have been wishing for “somebody” to do something– this is yet another way.

EDITED TO ADD: Since this post was originally published, a separate section to list open studies seeking participants has been added to the main IBS Impact site. We encourage researchers to contact us directly with any additions or changes. Please email the IBS Impact listowner/founder or the webmaster at the contact links on the home page of the main site.


Putting Our Money Where Our Mouths Are for IBS

July 22, 2011

In many communities in the U.S., one can barely walk down the street of a downtown area, pass a public bulletin board or open a local newspaper, magazine or news website without seeing ads for awareness ribbons, buttons or bracelets or fundraising events for this or that health condition. IBS is usually not one of them, even in April, which has officially been Irritable Bowel Syndrome Awareness Month for many years. Mostly, unless one is paying close attention to certain IBS websites, April looks like any other month of the year.

In December 2010, one young woman, Jessica L., a family member of several people with IBS or other functional GI disorders literally stepped forward to run a marathon on behalf of IFFGD’s research fund. Since then, through the IFFGD’s Digestive Health Alliance, a few other community fundraising and awareness events have taken place or are planned in different states. This is welcome progress, but is a fraction of the work ahead of the IBS community on both fronts.

People who are familiar with the workings of not-for-profit organization development, at least in the U.S., can make more complex observations based on careful readings of financial data available to the public through sources like Guidestar, but suffice it to say that people with IBS historically have a poor track record of supporting organizations that are supposed to be working our behalf.

On a very grassroots level, as of today, a Facebook Cause called “IBS Research” started by one person with IBS over 2 years ago has raised $85 from 3 donors. A different fund recently started by the Irritable Bowel Syndrome Self Help and Support Group, a worldwide IBS online forum which claims over 43,000 registered members, has raised $255 from 4 donors, 2 of them well known IBS professionals rather than IBSers.

The worldwide economy is undoubtedly bad, but this was the case for IBSers in better times as well. It is true that many people with IBS are not employed, sporadically employed or underemployed for their credentials. Some of us face tremendous expenses for conventional medical care, an ever changing array of complementary or alternative medicine, non-prescription medications, supplements and extra personal hygiene supplies not generally covered by insurance, if one has any. However, similar challenges often face people with disabilities in general. According to the National Organization on Disability, a U.S. not-for-profit focused on employment, “79% of working-age Americans with disabilities …are not employed”. Yet, in contrast to the paltry sums quoted above for IBSers, the Facebook Cause for the American Association of People with Disabilities, which focuses broadly on several areas of equal access for the disability community, has raised $6800 from 196 donors. The Facebook Cause for the National Fibromyalgia Association, one of many organizations that, in part, supports research into this chronic pain disorder, has raised $8469 from 248 donors. Fibromyalgia commonly overlaps with IBS, can be debilitating to many, and is often similarly misunderstood, so stigma cannot be the only factor holding IBSers back. These amounts are still very small in terms of overall philanthropy and do not represent every donation made to each organization from every source. Still, must the number of donors for each of these 2 example IBS funds remain a single digit while posters on various forums continue to complain that researchers and politicians don’t pay attention to us?

At least in the U.S., it is important for charities and researchers to be able to show outside funding sources and policy makers broad support from their own constituency, whether it is a health related organization or a university alumni association. It is a reality of the world that money speaks. If we do not support our own, why should anyone else?

IBS Impact itself is neither a business nor charity. The expenses of keeping the main website running and ads off this free blog are donated by the IBS Impact founder and webmaster, both of whom are people with IBS of relatively modest means. This is a conscious decision in order to discourage miracle cure spammers and establish our credibility within the IBS community. Philosophically, we do encourage IBSers to support financially the organizations or research centers of your choice Many, in 4 countries, are linked on various pages of the IBS Impact main site. For those who really cannot give directly, there are several sites that direct corporate money from online merchants to charities of your choice at no extra cost, such as Good Search /GoodShop in the U.S., iGive for U.S. and Canadian residents, and Everyclick for those in the U.K. Even small amounts can add up if there are many individuals with a consistent commitment to change.


What is IBS Advocacy Anyway?

July 15, 2011

Advocacy can take many forms. There is individual self-advocacy when, for example, a person with IBS communicates with a medical provider or employer about his or her needs and works to solve day-to-day issues that arise. There is also systems advocacy, which is focused toward making broad changes that affect a large group of people and specific issues of concern. On the local community level, that might mean persuading a hospital or social service agency to sponsor a support group or IBS education program. On a societal level, advocacy takes on regional, national or global significance such as HR 2239, currently in the U.S. House of Representatives.

Systems change usually requires the cooperation of many individuals and groups working diligently over a long period of time. Often, systems advocacy for any issue or interest group, not just the IBS community, involves much relatively quiet and unseen negotiation with the powers that be in any given context. Sometimes the approach is more visible, such as public rallies and civil disobedience. If we look to history for the lessons of civil rights for African-Americans and other people of color, the women’s rights, GLBT rights, and disability rights in the U.S. and many other struggles for political and social recognition by various groups in other countries, we often see that both of these approaches and everything in between have been steps toward progress for the groups in question.

Historically, people with IBS and the IBS community have been fragmented. Many people with IBS do not have access to peers with IBS or knowledge of our forums, organizations or research facilities. Among those who are knowledgeable and involved, there have often been philosophical, political or personality differences– as happens in any community. The IBS Impact founder, as a relative newcomer to the ranks of people with IBS, continues to call on fellow site owners/moderators, organizations and professionals to try to work together– not necessarily to achieve perfect consensus, but to find common ground in the interest of all of us with IBS so we can encourage more of our peers out of the closet and work in a more coordinated fashion. IBS Impact is welcoming of diverse nationalities and demographic groups, experiences, opinions, approaches and issues, whether individual or systems oriented. There is room in the huge and sprawling IBS community at large for all of us who wish to participate. The point is that we do at all.

Advocacy is not always easy. It takes time and effort but it can produce results for those willing to work at it. Advocacy can be learned, even by people who are private and quiet by nature. As one IBS Impact member wrote recently, self-advocacy is “a set of good habits.” Once learned, they become more familiar and easier to use and can reap both satisfaction and concrete progress for us as individuals and as a community.


Toward True Awareness of IBS

July 9, 2011

Here are some common chronic health conditions: diabetes, coronary heart disease, asthma, IBS, kidney disease, inflammatory bowel disease. Can you rank them in order of the estimated number of people in the United States who have each condition?

From highest to lowest prevalence, the answers are:

IBS: 25-45 million, or 10-15% (1) with some estimates as high as 58 million (2) or 10-20% of the population (3)
Kidney Disease: More than 26 million (4)
Diabetes: 25.8 million (5)
Asthma: 24.6 million (6)
Coronary Heart Disease: 17.6 million adults age 20 or over (7)
Inflammatory Bowel Disease (IBD), with which IBS is often confused, 1.4 million.(8)

Are you surprised? Many people are, whether they have IBS or not. As self-advocates, we should be asking ourselves why and what we do about it. Most readers of this blog probably can identify others they know who have one or more of the other conditions, if they do not have one themselves. They most likely know the names of these disorders and have a basic understanding of what they are. Some organizations that represent these conditions are readily recognizable by the public: the National Kidney Foundation, the American Diabetes Association, the American Lung Association. the American Heart Association, the Crohn’s and Colitis Foundation. In many local communities, people who are diagnosed with one of these or many other conditions are routinely offered access to training on how to manage the disorder effectively, to clinics or phone lines where they may ask questions or express concerns to medical professionals, to support groups for themselves and/or their families, and perhaps referrals to clinical trials if appropriate and desired. This is as it should be.

Unfortunately, this is far less often the case for people with IBS. Granted, about 50% of people with IBS don’t even consult physicians.(9) But many IBSers anecdotally report being given relatively little information and left to fend largely for ourselves, with few resources in our own communities. Studies show that even as knowledge of IBS has been increasing over the years, many physicians do not use the standard Rome III criteria (see page 889) for diagnosis of IBS.(10) Also, while our available resources, IFFGD and the University of North Carolina Center for Functional GI and Motility Disorders among them, do very important work on behalf of the IBS community, how many laypeople understand what a functional GI disorder is and that IBS is the most common one? Why are the free and public online chats with UNC experts usually sparsely attended? Why do those of us who are open about our IBS often encounter otherwise highly educated acquaintances who ask us what IBS is, or media coverage that is sometimes blatantly inaccurate? Why are some IBSers so desperate that that they fall for the quacks that abound for IBS?

There are a few responses that are commonly heard in the IBS community as to why IBS is not a priority. First, it’s pointed out that every other health condition mentioned in this post, if not well managed, can be life threatening, while IBS is not. True. However, it is well documented, both in research and the personal experiences of many IBSers, that IBS that is not well managed can have major impact on quality of life.(11) Second, it’s said that 70% of IBSers have mild symptoms.(12) Granted. But even the remaining 30% is an extremely large number. Third, it’s said that while these other conditions have clear and organic causes and treatments, IBS can’t be seen on existing clinical tests and remains poorly understood, so we can’t expect equivalent resources to be available. Perhaps. But modern research is making the distinction between functional and organic increasingly blurry for IBS.(13) Some important things are understood about IBS that were not decades ago. Should we not support further scientific and social advances? IBS Impact was founded to say that none of these reasons should be a barrier to people with IBS and our supporters standing up for ourselves as other health and disability groups do. When we do, while miracles are not just around the corner, we will accelerate progress to our benefit.
____________
References
1. International Foundation for Functional Gastrointestinal Disorders, Facts about IBS
http://www.aboutibs.org/site/about-ibs/facts-about-ibs

2. Web MD Irritable Bowel Syndrome (IBS) Health Center, Overview and facts
http://www.webmd.com/ibs/guide/irritable-bowel-syndrome-overview-facts

3. University of North Carolina Center on Functional GI and Motility Disorders, Irritable bowel syndrome, 2.
http://www.med.unc.edu/ibs/files/educational-gi-handouts/IBS.pdf

4. National Kidney Foundation Home page http://www.kidney.org

5. American Diabetes Association , 2011 National diabetes fact sheet
http://www.diabetes.org/diabetes-basics/diabetes-statistics/?utm_source=WWW&utm_medium=DropDownDB&utm_content=Statistics&utm_campaign=CON

6. The American Heart Association, Heart and stroke statistics 2010 update. Circulation 121; 2010 February 23: e86.Published online 2009 December 17, doi: 10.1161/CIRCULATIONAHA.109.192667
http://my.americanheart.org/professional/General/Heart-Disease-and-Stroke-Statistics-2010-Update_UCM_423970_Article.jsp

7. Akinbami ,L.J., Moorman, J.E. & Liu, X. (2011 January 12) Asthma prevalence, health care use, and mortality 2005-2009 National Health Statistics Reports 32:1.
http://www.cdc.gov/nchs/data/nhsr/nhsr032.pdf

8. Crohn’s and Colitis Foundation of America. About Crohn’s disease and ulcerative colitis http://www.ccfa.org/about/press/ibdfacts

9. University of North Carolina Center on Functional GI and Motility Disorders, Irritable bowel syndrome:2.
http://www.med.unc.edu/ibs/files/educational-gi-handouts/IBS.pdf

10. Spiegel, B, Farid, M., Esrailian, E., Talley, J. & Chang, L., Is irritable bowel syndrome a diagnosis of exclusion? A survey of primary care providers, gastroenterologists and IBS experts Am J Gastroenterol. 2010 April; 105(4): 848–858. Published online 2010 March 2. doi: 10.1038/ajg.2010.47

11. International Foundation for Gastrointestinal Disorders & the University of North Carolina Center for Functional GI and Motility Disorders IBS patients: their illness experience and unmet needs.(2009)
http://www.aboutibs.org/pdfs/IBSpatients.pdf

12. International Foundation for Functional Gastrointestinal Disorders Statistics
http://www.aboutibs.org/site/about-ibs/symptoms/statistics

13. Drossman, D. A. (n.d.) The ‘organification ‘of functional gi disorders: implications for research. http://www.med.unc.edu/ibs/files/educational-gi-handouts/Organification%20of%20FGID.pdf


ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011 (HR 2239)

July 6, 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.

This bill was introduced in the U.S. House of Representatives on June 16. U.S. citizens, please contact your Representative now to ask for support.

IBS Impact thanks IFFGD for its work in bringing this bipartisan bill to fruition and urges IBS Impact members and site visitors to advocate for this landmark legislation on behalf of people with IBS and related disorders. The bill was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) and is currently cosponsored by Representative James Moran (D-VA-8) In order to pass the House, it needs support from 218 Representatives, or a majority of the House.

For more information, see IFFGD’s link at
http://www.iffgd.org/site/advocacy/legislative-alerts/action#hr2239
There is also a link there to the text of the actual bill.

To find contact information for your Representative, see http://www.congress.org

Check back on this site or join IBS Impact for updates as they occur.

This is major legislation on behalf of people with IBS and other functional GI or motility disorders (such as GERD, gastroparesis, chronic intestinal psuedoobstruction, functional dyspesia, cyclic vomiting syndrome, Hirschsprung’s disease, chronic bowel incontinence from various causes, and many other disorders that collectively affect about 1 in 4 Americans. IBS is the most common of these.) but it will take time, effort and advocacy from affected people and our supporters to show Congress that this is important enough to pass and enact.

Please write or call your federal Representative (not your Senators, the President, your Governor or other local officials. They have no control over anything that happens in the House of Representatives!) and ask for his/her co-sponsorship of this bill. State who you are and where you live in his/her district. This is very important so the Representative’s staff knows you are a real person and you are actually an eligible voter in that district. They will not pay attention to people who do not live there. Tell briefly why you are interested in this bill, again so they know who you are and why the bill is important– such as have had IBS for X years, have had difficulty finding adequate relief or have a family member with IBS, etc. If you are prepared with a few reputable facts and details about IBS in general to show that this is a widespread problem, not just your personal problem, these also help in showing credibility on the issue. So does familiarity with your Representative’s record on or interest in other health issues, but if you do not know these things, telling your personal experience is fine. Be sure to say thank you. Then pass the word to family, friends, coworkers or classmates who have been supportive of you with your IBS.

You do not have to be an excellent writer, just one that your Representative and his or her staff will see as a real person with real issues and real needs, not a canned request copied and pasted from somebody else’s letter. Keep your message short– one page or less.

This is a major opportunity for the IBS community and its various sites and organizations to come together, regardless of political, philosophical or personality differences, make our needs known, and do something to make our lives better in the future. Self-advocacy to get legislation enacted takes time, effort and patience, but it is possible if more people are willing to make noise publicly like other health and disability groups.

For all those with IBS who complain that nobody understands and nobody wants to do anything for us, now is your chance to make yourself heard. Some people want to understand and help. Congress has the power to make this bill happen. Each of us has the power to make it happen by coming out of the closet, getting over the embarrassment and asking publicly and persistently for this very specific help. It only takes a few minutes to write an email or pick up the phone. Please do it.


The Genesis of IBS Impact

July 4, 2011

Welcome to the IBS Impact blog. Since this is the first post, you are probably wondering who or what IBS Impact is, perhaps what self-advocacy and awareness mean, and why IBS Impact came into being. There are many answers to those questions that the posts on this blog will address over time, but we’ll start with the basics.

IBS Impact is a small, grassroots group of people from a few different countries who have irritable bowel syndrome. We also welcome family and friends of people with IBS, as well as professionals who work with people with IBS. A few of our members identify themselves as more than one of the above. We have a website and a Yahoo Groups listserv for discussion. We are specifically focused on greater public awareness and encouraging our peers with this extremely common but often embarrassing medical condition “out of the closet” to organize as a community with our real names to address the medical and societal needs that many people with IBS have difficulty getting met adequately: accurate and up to date information about IBS treatment, research, community support, awareness, employment, education and disability benefit issues, or whatever interests members might express and have skills or contacts to tap productively for the cause.

We are not a support group nor a place to discuss treatment options. There are variety of existing resources if that is your primary interest or need. We provide links to many reputable ones, not quacks, on our site for our visitors and members to explore and make their own informed choices. We are not a business or charity and volunteer our own time and resources.

IBS Impact’s founder is a person with IBS who continues to struggle with chronic symptoms, but who has chosen to channel the frustrations, doubts, and unmet needs of that experience in constructive ways toward a better future for all with IBS. Her search for like-minded individuals resulted in IBS Impact. Over time, we hope to reach our vision of a vibrant, proactive community of peers and a world in which IBS and those who struggle with it get the widespread recognition, respect and support we deserve.