Irritable Bowel Syndrome (IBS) and Inflammatory Bowel Disease (IBD) Are Not the Same.

August 31, 2011

IBS and IBD may have similar acronyms and a few similar symptoms, but they are very different disorders. Some symptoms are different. IBS is considerably more common than IBD. Some of the demographic groups that are at higher risk for each disorder are different. Treatments used for IBD generally do not work for and are not accepted medical protocol for IBS and vice versa. Anecdotally, community resources, such as support groups, tend to be more readily available for IBD than IBS. Some people may be diagnosed with both IBS and IBD, but one condition does not cause the other. Also, there is no such thing as “irritable bowel disease” or “inflammatory bowel syndrome” or “irritated bowel syndrome.”

The media often gets some of this information wrong. Some legislators do as well, as do many members of the general public and, surprisingly, many people with IBS themselves. In the observation of the IBS Impact founder, even respected scientific journals are not immune to this basic confusion and/or blatantly sloppy editing on occasion. So awareness of basic facts is sorely needed.

Here are some reputable sources discussing some of the differences between IBS and IBD:

The Crohn’s and Colitis Foundation of America

W. Grant Thompson, MD, FRCPC, Emeritus Professor of Medicine at the University of Ottawa, whose article was reproduced by the Gastrointestinal Society/Canadian Society of Intestinal Research

The National Digestive Diseases Information Clearinghouse at the U.S. National Institutes of Health.

The IBS Impact founder recently had a conversation with another person with IBS who claimed to know the difference between IBS and IBD but felt it was unnecessary to make clear distinctions, because, to paraphrase, “doctors call everything IBS anyway.” This person asserted that using the term “IBS,” whether the actual known condition was IBS, IBD or a food intolerance, was getting all gastrointestinal disorders publicity, which was a good thing.

Of course many different medical conditions need more attention, and each individual is entitled to his or her own opinions, but this one seems short-sighted. Certainly not all physicians call every digestive condition IBS, although it is unfortunately true that some are working off of an outdated understanding of the science of IBS and current standards of care. True awareness of irritable bowel syndrome depends on as accurate and up-to-date information as reputable research and the collective experiences of real people with IBS allow, not myths, misconceptions or people with IBS deliberately compounding confusion, as in the above example.

In the future, what’s perceived to be scientific truth about IBS and IBD may be altered by greater insights. For example, some more recent research than the above links does show some non-overt evidence of inflammatory mediators in at least some subset of IBS, as discussed by Maria O’Sullivan, PhD at Adelaide and Meath Hospital, Trinity College, Dublin, Ireland, and in Robin Spiller, MD’s work at University Hospital, Nottingham, U.K. on post-infectious IBS (IBS-PI) According to Douglas Drossman, MD, FACG, co-director at the University of North Carolina Center for Functional GI and Motility Disorders, research has blurred the traditional distinctions between functional and organic disorders. Nevertheless, IBS and IBD are still very different.

Perhaps there would be less confusion and more respect for IBS if IBS were known as (Dys)Functional Colon Disorder or another name that does not include the initials “I.B.” or sound like a trivial inconvenience with a laughable name. However, “irritable bowel syndrome” is the term currently accepted by the medical profession. No name change appears to be imminent and the IBS community will continue to deal with this IBS/IBD confusion for some time to come. It’s in our own interest to deal with the problem responsibly by calling different disorders by their proper names and correcting others when we see errors being made.


Another Advocacy Opportunity for U.S. Veterans with Functional Gastrointestinal Disorders

August 25, 2011

IFFGD is asking U.S military veterans with functional gastrointestinal disorders, including IBS, to contact the organization regarding a Veterans’ Advocacy Taskforce it is forming. To learn more, please go to this page on the IFFGD website.

For background information on recent developments in VA disability benefits for U.S. Gulf War veterans with functional gastrointestinal disorders, including IBS, and additional links, please see IBS Impact’s previous post from August 12.

In any advocacy effort, it is important for those who are directly affected to make their voices heard. It is a basic tenet of IBS Impact’s mission to encourage people with IBS to speak for ourselves. Therefore, we encourage veterans, in particular, to consider participating in IFFGD’s task force.

Concerned U.S. citizens who are not veterans with IBS or other functional gastrointestinal disorders can still help by urging your legislators to support research funding and other initiatives on behalf of veterans. As stated in the August 12 post, U.S Gulf War veterans are disproportionately affected by these conditions, which are already extremely common in the general population. Support for research, benefits and other programs for affected veterans may eventually translate into scientific insights and gains in public awareness and social support that also come to benefit civilians in the IBS/functional disorders community, and by extension, the many family members, friends and colleagues who often experience their own stresses and unmet needs related to having a close relationship with a person with moderate or severe IBS, veteran or not.

Judging from the disproportionately high number of hits on this blog specific to the August 12 post, as well as many incoming searches related to service-connected disability for IBS and functional gastrointestinal disorders, this is a major issue of interest and concern. If the functional gastrointestinal disorders community uses this momentum skillfully, it can potentially be a force for much positive change for all of us who struggle with these conditions and hope to return to more productive lives.


Grassroots Funding Opportunity for IBS/Functional Gastrointestinal Disorders

August 19, 2011

iGive is a reputable Internet site that includes a search engine and online shopping portal and allows users to designate any charitable cause in the U.S. or Canada to receive 1 cent per search or a percentage of each purchase that varies depending on the merchant or service. These donations are made by participating merchants or services, then passed on to charities by iGive periodically at no extra cost to the user. The amounts for each transaction are small, ranging from a few cents to several dollars, but over time, if the site is used consistently, they do add up.

Occasionally, iGive has various promotions that involve additional donations. IBS Impact recently received one of these, customized to support IFFGD, as someone in our group uses iGive on IFFGD’s behalf. It is possible to use iGive without registering, however, if you do, with a small amount of personal information, this allows you to track your individual transactions, accumulated donations and checks issued, and to take a tax-deduction if your chosen cause is eligible in your country. You may set your privacy options as to if your name, contact information and donation amounts are made available to your designated charity. Otherwise, no one has access to any information except you and iGive. In this current promotion, iGive is giving additional donations for each newly registered member before August 31, 2011, as detailed below:

We’ve just surpassed 21,000 “Likes” on Facebook, so we’re celebrating.
We’re inviting 21,000 new people to start using iGive by Aug. 31. They’ll earn $10 or more free for International Foundation for Functional Gastrointestinal Disorders (IFFGD). Actually, you get to do the inviting, we’ll provide the money.
Just send invitees this link or post it on Facebook or other sites (you can even forward this e-mail):
http://www.iGive.com/welcome/warmwelcome.cfm?c=45072&m=372709
Some Quick Celebration Details:
• $5 is donated just for using iGive through 10/31/11. No purchase necessary.
• Another $5 (or more) is donated if the new member also makes a purchase by 10/31/11.
• Shopping more means helping more. Over 900 great stores participate.
• No pop ups, ads, toolbars, special search engine, or unwanted emails.
• Our Facebook Page has great testimonials: http://www.facebook.com/igive
• New, never before having joined iGive people only qualify for this celebration.
It’s a bit of a race so get those invites out soon. Once 21,000 new members are using the iGive Button (for International Foundation for Functional Gastrointestinal Disorders (IFFGD) or other causes) or August 31, 2011 happens, the celebration ends.
Yours,

Robert N. Grosshandler
Founder
P.S. If you want to track how your cause is doing, please visit http://www.iGive.com//html/causestats.cfm

IBS Impact encourages interested readers to consider this free and easy grassroots funding option, either on behalf of IFFGD or another digestive health charity of your choice. Once you click through to the site, there is an option to change the designated charity if desired. Please note that although IFFGD is aware that it has been designated by some supporters and has confirmed that the organization does receive any amounts donated, IFFGD is not involved in this promotion or this blog post. Similarly, IBS Impact is not associated with iGive or any participating merchant on its site and does not receive payments from any source. The purpose of this post is to raise awareness of the need for funding IBS education, advocacy and research and to inform readers of options that they can choose.

For more information on why IBS community support of IBS funding is important, and for additional resources and links, including to sites similar to iGive in the U.S. and U.K., please see this previous blog post.


Clinical Trial at UCLA: “Therapeutic Movement as a Complementary Treatment for IBS”

August 17, 2011

IBS Impact is posting this open research study at the request of UCLA. Please contact Leila Shahabi, Project Coordinator directly at the telephone number below for further information.

“Therapeutic Movement as a Complementary Treatment for IBS:

Participate in a UCLA research study of the benefits of Therapeutic Movement (therapeutic yoga and therapeutic walking) for Irritable Bowel Syndrome (IBS).

You must be between 18 and 65 years of age and living in the Los Angeles area. If eligible, you will be able to attend 16 Movement Classes free of charge.

Our groups will now be held at UCLA on weekday evenings and weekend afternoons. Each session will be around 1 hour in length. We offer 16 sessions of our yoga or walking program as a part of participation in the study, and we aim to evaluate if these programs assist with the symptoms of IBS.

Call 310-825-6475 for further information.

Study conducted by David Shapiro, PhD, and Bruce Naliboff, PhD, UCLA Department of Psychiatry.

Protocol ID: IRB#11-002059, UCLA IRB Approved, Approval Date: 7/20/2011 Through: 7/19/2012, Committee: Medical IRB 3”

For more information and resources regarding research studies, please see this previous post or the IBS Impact research or links pages.


Functional Gastrointestinal Disorders/IBS Considered Presumptive Service-Connected Disabilities for U.S. Gulf War Veterans

August 12, 2011

UPDATE: These regulations have since been expanded to veterans with service in Afghanistan at any time since September 19, 2001.

Next week, on August 15, updated regulations go into effect at the U.S. Department of Veterans Affairs (VA), recognizing functional gastrointestinal disorders as disabilities with “presumptive” service connection for any member of the U.S. military who has served in various countries in the Persian Gulf/Southwest Asia region since August 2, 1990. IBS is specifically mentioned. However, according to the Federal Register, gastroesophageal reflux disease (GERD) is considered structural, not functional, and it is specifically excluded in these regulations.

Functional gastrointestinal disorders are being added to a list of other “medically unexplained chronic multisymptom illnesses” that have been similarly classified, including fibromyalgia and chronic fatigue syndrome, two non-GI disorders that commonly overlap with IBS.

What this means is that a functional gastrointestinal disorder, such as IBS, diagnosed in a veteran who served in this region during the stated time period and rated by the VA as at least a 10% disability will automatically be assumed to be related to his or her military service. This is very good news for people who qualify because, in most cases, in order to claim VA disability compensation, a veteran must prove that the disability is service-connected. Claims based on presumptive conditions do not require as high a standard of proof as other conditions. Please note that these regulations apply only to VA disability compensation, not other disability benefits administered by different systems, such as Social Security.

IFFGD reports that two recent studies have shown that active duty service members and veterans are disproportionately affected by functional gastrointestinal disorders like IBS because of chronic stress and high risk of exposure to gastrointestinal infections during deployment. IFFGD has testified before the Senate Defense Appropriations Subcommittee about adding functional gastrointestinal disorders to the list of eligible conditions for the Department of Defense Peer Reviewed Medical Research Program fiscal 2012 budget and is asking the functional gastrointestinal community to support this effort. For U.S. citizens who are interested in doing so, please see IFFGD’s action alert here.

These developments appear to be very positive and concrete progress for the many U.S. service members and veterans struggling with IBS and related disorders. It is a large step forward in the recognition of these often misunderstood and trivialized conditions as legitimate and potentially disabling. IBS Impact hopes that civilian entities in the U.S. and other countries will look to this example and follow suit in the not too distant future.


Food Poisoning and Post-Infectious IBS

August 5, 2011

Yesterday, the U.S. media began reporting that Cargill, a major meat processing company, has issued a voluntary recall of ground turkey products from one of its plants in Springdale, Arkansas. Meat from other companies and other Cargill locations is not affected. Cargill took this action after reports of salmonella were linked to its products. According to the U.S. Centers for Disease Control (CDC), 76 people in 26 states have become ill and one person has died as a result.

This unfortunate development seems to be an appropriate time to discuss post-infectious IBS, often abbreviated as IBS-PI. Occasionally, people mistake this to mean that IBS itself is an infection, but that is inaccurate. Post-infectious IBS is a subgroup of IBS that arises suddenly, shortly after the person has had a bacterial gastrointestinal illness. This infection may be from various causes, including exposure to contaminated food and/or water. IBS-PI occurs after the infection has ended. The functioning of the bowel has been disrupted, leading to symptoms of IBS.

Robin Spiller, MD of University Hospital in Nottingham, UK is an authority on IBS-PI. He writes in a fact sheet for IFFGD, that various studies have reported the risk of developing post-infectious IBS in the range of 4-35%, with larger studies reporting about 10%. Among the people involved in this research, 6-17% believed the first onset of their IBS was connected to a recent infection. According to the article, statistically, the greatest risk factor is the severity of the initial infection, but gender, age, psychological factors like recent stress, and the ability of the bacteria to produce toxins also play roles. Dr Spiller states that studies in the IBS-PI subgroup have shown evidence of inflammation, so that anti-inflammatory medication has been tried, but so far, has not been shown to be effective. As of now, there is no treatment specifically to prevent or cure post-infectious IBS, although the usual treatments recommended to all people with IBS may be helpful. He reports that about half of those with IBS-PI will “recover” eventually, but that it may take several years.

What are people with IBS and others to make of this information? For one thing, because in post-infectious IBS, there is a presumed known and recent cause, research on this subgroup has yielded important insights that may eventually have implications for all people with IBS. One good example is the contamination of the water supply in Walkerton, Ontario Canada in 2000, where 2300 residents became ill. Of those people, more than 36% eventually developed IBS symptoms. In 2010, from long-term studies in Walkerton, researchers from McGill and McMaster Universities reported identifying genetic variants that predisposed some residents to IBS-PI, opening the door to future advances in understanding the genetics of IBS.

At this point, however, even with a presumed cause for those in the IBS-PI subgroup, IBS management remains complex. As many people with IBS know all too well, some of us will be fortunate to have mild and/or sporadic symptoms, and/or quickly find the interventions that work well for them. Others will struggle for years through severe and constant symptoms and endless trial and error with various treatment approaches,never finding adequate relief. Still others will fall in the middle of this spectrum. IBS is notoriously individual and unpredictable. Even if peer reviewed scientific studies are able to give us guidance as to what is statistically more likely to happen in a given situation, it’s not much comfort to those who, for no reason they can identify or control, happen to find their experiences in the minority. For example, although greater severity of the triggering infection correlates with higher risk of IBS-PI, anecdotally, some people who believe they have IBS-PI report that they were ill, but not severely, or know they were recently exposed to a pathogen but were not noticeably ill until the onset of IBS soon afterward.

How seriously should we take recalls of suspect food, accidental water main breaks and such? The low end of Dr. Spiller’s range, at 4% risk, doesn’t sound like much. The high end of over 36% in Walkerton looks considerably more alarming. But if we know that preventing GI infections is the only known way to prevent some cases of IBS, then it seems that the IBS community should be using incidents like the current recall as high profile public awareness opportunities. If our non-affected relatives, friends, coworkers or anyone accidentally encountering this blog knew they might be risking years of chronic GI issues, would they think more carefully before eating recalled products, forgotten leftovers or a quick meal from a questionable restaurant or street vendor because it looks all right and one should not waste food? Would those of us who suspect our IBS resulted from post-infectious causes make different decisions if we could turn back the clock? Food for thought.


Representative Welch of Vermont Co-Sponsors HR 2239 for Functional Gastrointestinal and Motility Disorders

August 1, 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, Representative Peter Welch (D-VT) signed on several days ago as a co-sponsor to HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2011. He joins the lead sponsor, Representative F. James Sensenbrenner, Jr. (R-WI-5), and the initial co-sponsor, Representative James Moran (D-VA-8), in supporting HR 2239. In the previous Congress, in 2010, Representative Welch was also one of 11 co-sponsors of HRes 1309, a Resolution for IBS awareness.

If you are a U.S. citizen who resides in Vermont, please write or call Representative Welch to thank him for his support of the IBS and FGIMD community. If you are a constituent of Representative Sensenbrenner, residing in Wisconsin’s 5th Congressional District, or a constituent of Representative Moran, residing in Virginia’s 8th Congressional District, please do the same with each of them.

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 for more details on how to do so.

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.

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