New Updates to IBS Impact.com for February 2012

February 27, 2012

Another major update to several pages of the IBS Impact main website was completed this month.  These changes include the most current information on the progress of advocacy for the Functional Gastrointestinal and Motility Disorders Research Enhancement Act (HR 2239) and new links to some of this blog’s most popular posts, as well as a considerably expanded links page with additions in several categories. Based on reader feedback, a completely new category has been added to the links page for disability benefit information.

In this update, we have paid particular attention to including more resources for the many readers around the globe who visit our site and/or blog each month.  Six nations, the United States, Canada, the United Kingdom, Ireland, Australia and New Zealand, are now represented on the site. As IBS is a very common health condition worldwide, we strive to include as many nations as possible where English is a primary or major secondary language. We encourage readers outside the U.S.to alert us to resources, legislation, benefits and other concerns of the IBS community in their countries that may be of interest to other site visitors and blog readers.

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.

Comments, suggestions and article submissions are welcome and will be thoughtfully considered. 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.


Public Restroom Access and Irritable Bowel Syndrome (IBS)

February 21, 2012

UPDATE 5/10/2013: As of April 2013, IBS Impact received information on additional restroom access laws in Maryland and Maine. Please see the May 10, 2013 post.

UPDATE: As of August 2012, Massachusetts became the thirteenth U.S. state to enact a restroom access law. See the August 20, 2012 post for details and a link to the full text of the law in that state.

Because IBS can cause frequent and/or unpredictable need to use a toilet, quick and plentiful access to public facilities is a major concern expressed by many people with IBS. Thus, it’s somewhat surprising that existing laws or resources that may be useful in some countries aren’t often discussed in the IBS community. A post last month by a blogger who goes by the online name of Felicia Fibro spurred exploration of this topic. Here is some information that may assist IBS Impact readers in some U.S. states, the U.K. and Australia.

Felicia, who identifies herself as having fibromyalgia and IBS, posted a video interview she did with Ally Bain and Ally’s gastroenterologist. (Scroll to January 16.) Ally has Crohn’s disease, a type of inflammatory bowel disease (IBD).  Several years ago, as a young teenager, Ally had an accident in a store after her request to use the employee restroom was refused, despite her explaining repeatedly that she had an urgent medical need. After that humiliating experience, Ally resolved to do something about it, contacted her state legislator and helped to write and pass a bill to address similar situations. The details of the incident and progress of her efforts have been blogged frequently by the About.com IBD Guide. In 2005, the Restroom Access Act, known popularly as “Ally’s Law,” was signed into law in Ally’s home state of Illinois. Since then, with continued public advocacy by Ally and others, similar laws have been enacted in eleven other states: Colorado, Connecticut, Kentucky (part 1 and part 2), Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Washington and Wisconsin. While the exact language describing eligible medical conditions varies in each state, irritable bowel syndrome is specifically mentioned by each of the current twelve states.

There are other minor differences, so please click the linked states above to view the text of the law for a particular state. In general, the laws are similar to the model set by Illinois. Most are also named the Restroom Access Act. Most say that a “retail establishment” must give access to an employee restroom if there is no public restroom immediately available, there are at least three employees (in one case, two) working at the time, and the facility itself or its location will not pose a safety hazard to the person or security risk to the business. A few states narrow or expand the types of businesses covered or specify regular business hours only.  A few states do not explicitly require proof of a medical condition. In most states that address the issue of proof, a physician’s note is sufficient. Some states also accept notes from certain other types of licensed health providers. One state requires a specific form for this purpose. Many states permit an identification card from a national non-profit organization representing an eligible condition.

Please note– this type of card is not currently available from any U.S. organization concerned with IBS, although if there’s enough interest, it might be an advocacy issue to pursue. For U.S. readers who also have IBD, which is a separate condition from IBS, such cards are available to members of the Crohn’s and Colitis Foundation of America or from the Foundation for Clinical Research in Inflammatory Bowel Disease. Those with interstitial cystitis,  a bladder condition that commonly overlaps with IBS, can obtain a card through the Interstitial Cystitis Association. The Association page linked here includes public restroom and travel advice for those with IC, but also appears helpful for conditions with similar restroom needs. The About.com IBD page linked in the second paragraph of this post also has useful tips.

The IBS Network, formerly The Gut Trust, in the U.K. also offers a card to its members, as does the Irritable Bowel Information and Support Association of Australia. There appear to be no specific legal protections associated with them; they’re simply a tool to communicate one’s needs to others quickly. According to The IBS Network’s  website, the organization has an ongoing advocacy campaign to prevent the closure of public toilets in many cities. From anecdotal information, it appears that some U.K. residents with IBS benefit from “RADAR keys,” which unlock disability-accessible public toilets. The keys, as well as a guide to places where they can be used, are sold by the Royal Association for Disability Rights (RADAR),which recently merged with two other cross-disability advocacy organizations to form Disability Rights U.K.

Bills similar to “Ally’s Law” have been introduced over the years in more U.S. states, but as information isn’t centralized, the current status of each state is difficult to confirm. As of this date, legislation is known to be currently pending in New York. Readers who are aware of further details about states or countries not mentioned in this post are invited to comment on this blog.

IBS Impact applauds Ally’s initiative. Her success in making these laws a reality is especially impressive, as she was just fourteen years old when she began her quest. It’s hoped that other youth and adults will follow suit to change the system for digestive disorders like IBS. As Ally points out in Felicia’s interview, “It’s important to speak out… so that people know they’re not alone.” The IBS Network’s goals are also worthy, and readers in the U.K. should seek out more information on how to support them.


Parent Offers Cards to Advocate for Functional Gastrointestinal Disorder Research

February 14, 2012

Natalie Abbott of Colorado, the mother of a young child with a functional gastrointestinal disorder, found this blog while searching the Internet for information on HR 2239, the Functional Gastrointestinal and Motility Disorders Research Enhancement Act, which is currently under consideration in the U.S. House of Representatives. She contacted us to tell her family’s story and to make an offer to IBS Impact members and visitors.

Natalie shared that last Christmas, in her family’s holiday update to relatives and friends, she included information about her son’s functional gastrointestinal disorder. She also enclosed cards that had been printed with photos of her son and a request to Members of Congress to co-sponsor HR 2239. She asked those who received her mailing to consider signing this card in support of her little boy and others living with functional gastrointestinal and motility disorders, or to pass the card along to someone else with a personal interest in one or more of these conditions. She also arranged for the Digestive Health Alliance, the new grassroots arm of IFFGD, to receive the completed cards and to deliver them directly to the Representative of each sender.

Natalie wrote that she has a small number of extra cards on hand and would like to have them put to good use to further the progress of HR 2239. She is generously offering these free of charge to IBS Impact members and blog visitors who contact her, by email or phone, for as long as her supply lasts. She has already provided the postage on each card. Below are more details in her own words:

Dear Friends,

I am the mom to an adorable five year old son living with Chronic Intestinal Pseudo Obstruction.  While it is different than IBS, we share a common bond.  We all either live with or have a loved one who is living with a Functional Gastrointestinal and Motility Disorder (FGIMD).  I have been working with Digestive Health Alliance (They have been great to work with.) to do my little part to “get the word out” on H.R. 2239 regarding FGIMD’s.  I have made it SUPER easy for you to get a note to your Congressman or woman. I will send you a personal card that I made about our son – it is already pre-addressed and stamped for you. All you need to do is give me your address. I will send you a card, then you will need to write a short, personal note, include your Congressman or woman’s name (I include instructions so you can find that out very easily.) and your address inside the card.  If you have already contacted your Congressman or woman, use this opportunity to follow-up with them.  I am not sure the safest way for you to give me your address – feel free to e-mail me personally at natalieabbott@comcast.net or call at 303-987-2589.  Thanks in advance for your efforts to get H.R. 2239 passed in the House.  Here’s to hopeful, happy and healthy futures for all of us! 

Natalie in Colorado

IBS Impact commends Natalie’s grassroots awareness and advocacy in educating family members and friends about functional gastrointestinal and motility disorders and encouraging them and Congress to support HR 2239. Many individuals and families affected by these conditions are very reluctant to discuss them openly or to work toward change. However, as a concerned parent, Natalie is sharing her some of her son’s story and her cards with others out of hope for a healthier and more productive life for her child in the future. Her actions, along with the collective actions of many of us, will help the functional GI community at large. IBS Impact encourages readers to contact Natalie to receive one of her cards. Perhaps others will also be inspired by her example to make similar cards or to come up with other grassroots ideas to further the cause of functional gastrointestinal and motility disorders that fit their own interests, talents and resources. It is this sort of personal initiative, commitment and self-advocacy by affected people and their loved ones that IBS Impact was founded to encourage.

For the most recent update on HR 2239, see the December 18 post. For background information and links, see the July 6 post. For another personal story by a concerned family member of people with functional gastrointestinal and motility disorders who has stepped forward publicly to support research, see the article, “The Accidental Advocate” by Jessica L. on the main IBS Impact site.

One role of DHA/IFFGD that has not previously been mentioned on this blog has been to establish and fund the Children’s GI Research Network, a collaboration by six leading pediatric functional GI researchers at academic medical centers in different areas of the United States.  Click the following link for DHA’s resources specific to children with functional GI and motility disorders, including videos of each of the six researchers currently in the network.


Student Organization Provides Support and Awareness for Invisible Disabilities and Chronic Illnesses

February 7, 2012

The IBS Impact founder made contact recently with InvisAbilities, an organization which currently offers peer-run support and other programs for students with invisible disabilities or chronic illnesses, as well as public awareness activities related to invisible conditions, at three universities in Canada.

InvisAbilities was founded in 2009 by Julie Harmgardt, a student at Queen’s University in Kingston, Ontario, after she acquired multiple invisible conditions. It has since become a national organization and new chapters have recently been started by students at McGill University in Montreal, Quebec and the University of Ottawa in Canada’s capital city of Ottawa, Ontario. It appears that these student groups are well accepted by the university administrations and Julie hopes that eventually InvisAbilities will have chapters on all university campuses throughout Canada.

At Queen’s, so far, offerings for those involved with InvisAbilities have included discussion groups and social events in centrally located and accessible campus locations, a buddy program whereby students can be matched with someone with a similar disability or condition for peer support, a lending library of books about various invisible disabilities, awareness events such as a film screening and awareness week,  a yoga class adapted to the needs of those with chronic pain or decreased mobility, and temporary financial assistance for transportation in certain situations. A recent article on the McGill chapter notes that the organization is open to all, including those with invisible conditions themselves, interested friends and anyone who believes in the cause. The article mentions an exchange student from the University of Edinburgh in Scotland and a visitor from Carleton University in Ottawa who both participated in InvisAbilities activities during their stays at McGill.

From information on InvisAbilities’ website, blog, Facebook and Twitter feeds and linked media coverage, it appears that InvisAbilities attracts members with a wide range of conditions including irritable bowel syndrome, inflammatory bowel disease, fibromyalgia, chronic fatigue syndrome, connective tissue disorders, diabetes, food allergies, mental illness, migraines and cancer, among others.  From our communication, Julie states that she is familiar with some of the challenges of GI conditions such as IBS, as well as the common taboo about discussing it in public. She states that she believes this stigma is particularly difficult for those who are young.

Recent InvisAbilities blog posts on inflammatory bowel disease and Type 1 diabetes, as well as a list of common social misconceptions posted on the home page, make it clear that those with a wide range of invisible conditions face many of the same physical and social obstacles as many people with IBS: chronic pain, fatigue, embarrassing symptoms, questions or misunderstandings from others regarding food restrictions or choices,  perceptions from others that one does not appear ill or disabled, that a student of traditional age may be “too young” to have a chronic health condition,  that one is antisocial for declining activities with friends, or that one is lazy for missing school or work.  Many people with IBS often think that we are alone in our experiences, but we are not, and recognizing common ground with other people and groups can be an advantage, both in responding to our own individual situations and in encouraging awareness, advocacy and societal advances for our cause

IBS Impact is pleased to alert readers in Canada to this possibly local resource for peer support, and to welcome any InvisAbilities members or supporters with an interest in IBS who may find IBS Impact as a result. Additional content and links, including many new resources outside the United States, will soon be added to the main IBS Impact website. We encourage your input on Canadian resources and how the site and blog perhaps can be made more useful to citizens and residents of Canada. Submissions of articles from a Canadian and/or student perspective are also welcome. Please use the contact links on the home page of the main IBS Impact site.

For those blog readers who are neither in the above geographical areas of Canada nor university students, it is hoped that Julie’s and other students’ efforts in establishing InvisAbilities will serve as yet another real–life example of how concrete, grassroots actions can make a difference. Like IBS Impact, InvisAbilities began from one person’s personal experience, recognition of unmet needs, and desire to play a part in the process of long term-positive change. Get involved in IBS Impact, in InvisAbilities or any effort on behalf of the IBS cause that is right for you. The more voices that are publicly speaking out, the more our needs will be recognized by others.

Additional support options for IBS and some commonly overlapping conditions can be found on the links page of the main website, and within the November 18  blog post.


UNC Online Chat: Revised Topic for February 7, 2012, “Mindfulness for Irritable Bowel Syndrome”

February 3, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced a change to the next online chat in its “Evening with the Experts” series. It will take place Tuesday, February 7, 2012 from 8:00-10:00 p.m. Eastern time. Instead of the previously scheduled chat on dietary approaches and probiotics, Susan Gaylord, PhD  from UNC’s  Mindfulness-based Stress and Pain Program will present on “Mindfulness for Irritable Bowel Syndrome.”

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.

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.