Talk Health UK Online Clinic for Bowel Issues and IBS Still Open for April 2017

April 25, 2017

TalkHealth, a social media community in the United Kingdom provides UK-centered health information and online forums, and monthly “online clinics” where participants can ask questions of UK health experts and organizations for a given category of conditions. It is currently conducting its annual Bowel Issues and IBS Clinic for the IBS Awareness Month. It opened on April 1, and will remain open through April 30

TalkHealth is presenting this month’s clinic in cooperation with  Bladder and Bowel UK, formerly PromoCon, a national service of Disabled Living for adults and children facing continence issues, and ERIC , a UK charity specifically focused on the bladder and bowel continence needs of children and teens.  The Online Clinic for Bowel Issues and IBS 2017, which is an online forum, is currently open and accepting questions for the above dates only.  Readers can access it by clicking the above link. Registration with the TalkHealth site is required to post questions and receive notification of responses. Registration is not required for the public to access and read threads that are already posted. After this month, online clinic responses will be archived on the site for some time, however it will no longer be possible to ask new questions of the experts for this year.

Please note that the online clinic is not intended as a discussion or support venue between people with IBS or other bowel issues, but for questions and answers between affected people and the clinic’s experts for this month, which include several UK  gastroenterologists, a paediatrician, a clinical psychologist and two dieticians. Talk Health therefore asks that participants refrain from answering others’ questions posted in the Online Clinic and allow the professionals to respond. An open forum for IBS is available elsewhere on the site. Also keep in mind that while the clinic experts will do their best to provide helpful, accurate general information, they are not able to diagnose or treat anyone in an online forum and participants should still consult their own physicians if needed.

IBS Impact hopes TalkHealth provides another source of reputable information and support to our U.K. readers for IBS Awareness Month.  In addition to the clinic this month, please browse the rest of the TalkHealth website, and feel free to leave comments on this post for the benefit of other IBS Impact readers as to if you find the resources useful.


Free Online Webinar for IBS, Functional GI Disorders with Dr. Drossman, “Achieving Effective Patient-Provider Communication” on April 24, 2017

April 17, 2017

The American College of Gastroenterology has announced that for IBS Awareness Month, it will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG  and one of his patients, Katie Errico on “Achieving Effective Patient-Provider Communication.” The webinar will take place on Monday, April 24, 2017 from 8:00-9:00 p.m. Eastern time. The webinar is designed specifically for people with irritable bowel syndrome and/or other functional gastrointestinal disorders.

Dr. Drossman, a leading, internationally-known expert on IBS, functional gastrointestinal disorders, doctor-patient relationships and the biopsychosocial approach to medical care, is President of the Drossman Center for the Education and Practice of Biospsychosocial Care, President of the Rome Foundation, Professor Emeritus of Medicine and Psychiatry at the University of North Carolina at Chapel Hill, retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders and a longtime board member of the International Foundation for Functional Gastrointestinal Disorders,  along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

To participate in the webinar, please use the link to register. You will need to provide ACG with your full name and email address so that instructions for accessing the webinar on the scheduled date can be sent to you. It is open to anyone in any geographical location who has Internet access fast enough to handle streaming video, audio and chat technology. You will be able to ask questions after the presentation. Please keep in mind that Dr. Drossman cannot diagnose or treat anyone over the Internet, and depending on the number of participants and questions, he and Ms. Errico may or may not be able to get to every question.

“Achieving Effective Patient-Provider Communication” online webinar with Dr. Drossman, April 24, 2017

This is a tremendous and rare opportunity, especially for people with IBS or their loved ones to hear from and communicate directly with one of the world authorities and pioneers in the research, education and treatment of IBS. IBS Impact thanks ACG for making this webinar possible. We also thank Dr. Drossman for taking time out of his busy schedule to make himself available to the general public, and for his long decades of commitment to making functional gastrointestinal disorders like IBS a serious field of medical research and to supporting and treating many who live with these complex conditions.

 

 


Guest Post for IBS Awareness Month: Misinformation, Mystery, and Muddling Through IBS

April 7, 2017

IBS Impact is pleased to welcome a guest blogger this week for IBS Awareness Month. We thank her for her time and sharing her important experiences and insights.

Kathy Kersmarki lives in Winter Park, Florida. She worked twenty five years as an elementary school secretary/ bookkeeper and is now retired. After suffering for five decades with IBS and not sharing her story, she finds that being forthright about IBS  initiates meaningful conversations  and helps others to understand the condition. It also opens the door and allows other sufferers  to share their stories  as well. 

​I would like to thank Nina Pan for the opportunity to share my IBS story.

I believe I can safely say that anyone who suffers from IBS feels the impact on every aspect of their lives. It affects work life, home life, leisure life and relationships.  It becomes all consuming and everything sufferers do revolves around the condition.

I have had IBS for five decades that I can determine and may have even had it as an adolescent and teenager.  For years, I didn’t have a name for it and only knew I needed answers that never came.

I don’t blame the medical community entirely but I do believe that they should be availing themselves of scientific, documented evidence and should be passing this information on to patients.  Most of us have spent years going from one doctor to another to be told the condition is from stress, from food, from not getting enough exercise and if we just take this pill, or discontinue eating particular foods and stop being stressed, it will all get better.  The problem with that is it doesn’t get better without doctors truly understanding IBS.

I was at my wits’ end with IBS when I stumbled across a Facebook IBS support group which is science based. The administrators of the site made it clear that it wasn’t a forum for the latest gimmick or the newest over the counter herb or medicine.  I had spent years asking doctors and searching for information and in one site I learned that IBS is a brain/gut disorder and all of a sudden, the pieces started to fall in to place.

At this time, I was fortunate enough to find a gastroenterologist who listened to me and listened to what I was learning and together we made a plan. I told her about my anxiety and how I had become a captive to IBS. I was afraid to leave the house because when I left the house, I worried I would need a bathroom and that anxiety I felt caused the self fulfilling prophecy of needing that bathroom. Because I couldn’t leave home without needing a bathroom , I began planning my day the night before. What would I wear to disguise any issues, what would I eat, where were the bathrooms. It became a vicious and horrible cycle that many who suffer from IBS share.

She started me on a low dose anti-anxiety medication which in conjunction with the low FODMAP diet put me on the road to living a more normal life. I determined trigger foods and tolerated foods and was able to eat a healthy diet.  I also learned about Michael Mahoney’s IBS gut-directed hypnotherapy from the support group. His program enabled me to retrain the mind/gut connection. That was the last piece to the puzzle of my IBS and for eight months, I have been able to live the most normal life I have had in decades.

I believe there are answers for IBS sufferers but it is extremely vital that research continues and science based information is disseminated to everyone who enters a doctor’s office with questions about their digestive systems and the problems they have.  My hope is that every doctor, especially gastroenterologists, begins to tell their patients there is hope and to explain the brain/gut connection and help people to better cope.  My heart breaks reading some of the stories on the IBS support page. People are grossly misinformed and they are willing to try anything and everything regardless of how little it helps or how dangerous it might be.  I believe this is because the medical community doesn’t do a thorough job of learning the newest science based research and they too quickly dismiss the patient’s concerns.

I know I am one of the lucky ones who is managing to live a fairly normal life with IBS and I hope one day all sufferers will have the same results.

 


April is Irritable Bowel Syndrome (IBS) Awareness Month 2017

April 1, 2017

April is Irritable Bowel Syndrome Awareness Month. IBS affects, depending on the source, at least 25 million and perhaps up to 58 million women, men and children in the United States and anywhere from 9-23% of the population in different countries on every continent of the world.  In the U.S, this prevalence exceeds that of diabetes, chronic kidney disease, asthma, adults with chronic heart disease, and, by far, inflammatory bowel disease (IBD), with which IBS is often confused. IBS Impact stands in solidarity with what Olafur Palsson, PsyD, full professor and leading researcher at the University of North Carolina Center for Functional GI and Motility Disorders once estimated as half a billion people with IBS around the globe. As noted in the January 10, 2012 post on this blog, in 2011, a Rome Foundation working team estimated that 40% of us are mildly affected, 35% moderately affected and 25% severely affected, with the last two groups significantly larger than that same group of professionals had previously thought.

Unlike awareness weeks and months for these and other common health conditions, it is often difficult to know this unless one follows certain IBS sites, but as time goes on, awareness gradually increases. In 2012, this blog  first published a version of this post as  “10 Things We Can Do for IBS Awareness This Month and Every Month,”  which remains one of the most popular single posts in the history of this blog.  That post has been revised and updated as needed every year since. Here are 10 possible strategies for how people with IBS in any country can increase awareness of IBS. Readers of this blog who are relatives and friends, with the permission of the person with IBS, feel free to help the cause too.

1) If they do not already know, talk to your family, friends, coworkers, classmates and medical providers about IBS. Having IBS is often an isolating experience, and some people with IBS who have “come out of the closet” have found that the stress of hiding and worrying about who knew and how much they knew actually triggered worse symptoms.  No, not everyone will “get it” and that can be hurtful or tiring, but people without IBS will never learn to understand unless we are willing to tell them. Some of them will help you and it may be the people you least expect. Given that IBS is the most common functional gastrointestinal disorder with prevalence anywhere from 9-23% in different countries worldwide, it’s very likely that some people  you tell will also have IBS or loved ones with IBS. The IBS Impact main website has an entire page of articles specifically for family and friends. Many past posts on this blog are also tagged for this subject, and can be found by using the search box on the right sidebar.

2) If you find the IBS Impact website or blog or any other reputable IBS site useful and interesting, share it with your family and friends, other people with IBS and your health care providers, especially those not currently active in the IBS community.  Knowledge is power. The more people who have good information and resources rather than outdated misconceptions and quacks, the better off we will be as individuals and as a group. IBS Impact also posts to its Twitter and Facebook pages several times month with scientifically reputable articles, resource links, clinical trial and advocacy opportunities and encouragement from sources all over the globe. If you use these social media platforms, your likes, comments and shares are a quick and low-effort way to participate in IBS awareness and spread the word very quickly.

3) If you’re not comfortable being public, you can still quietly distribute information in public places. IBS Impact has business cards with our logo available free for the asking. IFFGD/the Digestive Health Alliance has free downloadable awareness posters and other resources. The Gastrointestinal Society, in Canada, distributes free information packets and pamphlets that can be ordered online and mailed to addresses within Canada.  The IBS Network in the United Kingdom also offers a variety of IBS fact sheets to its paid members. Leave these materials in public displays or bulletin boards in community centers, libraries, medical offices and hospitals, pharmacies, banks, post offices, college campuses, wherever many people go every day.

4) Volunteer to share your story on the IBS Impact sites by using the contact links on the main website. We welcome diverse perspectives from people with IBS and their families and friends, and hope to be welcoming guest bloggers this month. Because IBS Impact encourages greater openness about IBS, we prefer to be able to post at least your first name and country of residence. IFFGD also accepts personal stories for its websites, anonymously or with names. IFFGD also occasionally quotes people with IBS in its publications.

5) Interact with the media. When there is coverage of IBS-related topics in mainstream print or broadcast stories or blogs, send or post your comments and corrections. This lets the media and other readers, viewers or listeners know we are out here as a community and that we care about how IBS is portrayed. IFFGD occasionally gets requests from the media to interview affected people. If you are interested, let IFFGD know that it can contact you. The IBS Network also sometimes publicizes requests from UK-specific media. For a past discussion of the media and IBS, see the November 6, 2011  post. Read about an advocacy success with a major U.S. media outlet in the January 20, 2014 blog post.

6) Participate in a research study so that scientists become more aware of our needs. Some studies are online or through the mail or phone. We regularly list some open studies on this blog, and on the main website, and/or share them on social media,  and many of the resources we link do as well.

7) IBS Impact is not a charity, but consider donating to one of the GI-related organizations or research facilities in your country. Many are listed on our links and research pages of the main site. It is very important for all non-profits to show that they are supported by their own constituency (the people whom they represent) when they approach other funding sources.  It is true that many IBSers don’t have a lot of money to spare, but even small amounts help. Seeral years ago, one person with IBS stated that if every person with IBS in just the U.S, the U.K. and Australia alone committed a dollar or pound a month, we’d have over a billion a year. If you’d like, have a fundraiser. IFFGD and other charitable organizations are generally glad to assist their supporters in these efforts. For more on why financial support to IBS entities is important, see this July 22, 2011  post and its August 25, 2014 followup.

8) If you absolutely cannot donate directly, use Goodsearch/Goodshop (in the U.S.)  or iGive  (in the U.S. or Canada) or Everyclick (in the U.K.) as your search engines or online shopping portals on behalf of the gastrointestinal charity of your choice. These sites all work slightly differently, but participating merchants designate percentages of each transaction to specific organizations you indicate. It doesn’t look like much each time, but the amount adds up if you use them consistently. Nothing extra comes out of your own pocket, and the charities do get the money.

9) Write to legislators or policy makers to support issues of importance to the IBS community. IFFGD can help U.S. citizens with current U.S. legislation of concern to functional GI and motility disorders. If you prefer not to go through that organization, you can do so yourself. Often there are separate state issues as well, which, when possible, we attempt to publicize on this blog. The IBS Network occasionally posts U.K. specific advocacy on its website and social media.

10) If you’re ambitious, organize an awareness event, especially those of you who are students or health professionals. Talk to a health professions class or go to a health fair. For another discussion of why IBS awareness is important, see this July 9, 2011 post. GI organizations, including the ones listed above, are often happy to assist their supporters with grassroots efforts if desired.

There are many more than 10 possible ways to advance the cause of IBS awareness worldwide. IBS Impact was founded on the belief that awareness is an ongoing process that should not just happen one month a year, so don’t just restrict yourself to April. But every action, small or large, multiplied by many people with IBS and our supporters moves us closer to a time when IBS is widely understood by the general public and when the medical and social needs of people with IBS as a community can be more easily met.


ACTION ALERT: Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017 (HR 1187)

March 21, 2017

In early March 2017,  the International Foundation for Functional Gastrointestinal Disorders (IFFGD) publicly made known that the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2017, also known as HR 1187 was introduced in the United States House of Representatives on February 16, 2017.  HR 1187 addresses public awareness efforts and research funding for functional gastrointestinal and motility disorders like IBS, as well as improved efforts at coordination of research efforts and prescription drug approval among federal entities and the functional GI and motility disorder community.

This is similar to the bill that was known in the 112th Congress in 2011-2012 as HR 2239, in the 113th Congress in 2013-2014 as HR 842 and in the 114th Congress as HR 2311. Because the composition of Congress changes with each federal election, it is not unusual for legislation that does not pass to be reintroduced in future sessions under different bill numbers depending on the date of introduction.

IBS Impact thanks IFFGD  for its ongoing work of many years in bringing this bill to fruition, and urges readers who are U.S. citizens to advocate for this landmark legislation on behalf of people with IBS and related disorders. As with the previous versions of the Act, HR 1187, was introduced by Representative F. James Sensenbrenner, Jr. (R-WI-5) as the initial sponsor. On March 13, 2017, Representative Mark Pocan (D-WI-2), a co-sponsor of HR 2311 in the previous Congress, became the first co-sponsor of HR 1187.

Past versions of the Act have been supported by both political parties and it is a revenue-neutral bill, meaning no new spending or taxes are involved. However, through this legislation, Congress can direct the National Institutes of Health to allocate existing discretionary resources specifically to IBS and other functional gastrointestinal and motility disorders, such as GERD, gastroparesis, chronic idiopathic psuedo-obstruction, functional dyspepsia, short bowel syndrome, Hirschsprung’s disease, cyclic vomiting syndrome, chronic bowel incontinence from various causes, and many others, which collectively affect about 25% of Americans. Irritable bowel syndrome is the most common of these. NIH grants funding to researchers throughout the world, not just in the U.S., so in the long run, enactment of this Act may also benefit readers with IBS in other countries. Medical research often involves multinational teams of scientists, and in any case, study results are usually published globally, adding to cumulative scientific knowledge among professionals and public awareness of various conditions worldwide.

In order to pass the House of Representatives in this Congress, HR 1187 needs support from 218 Representatives, a majority of the House, by the end of the current 115th Congress in December 2018. During 2011-2012, the previous bill received sponsorship or co-sponsorship from 17 Representatives in 12 states and both political parties, in 2013-2014, 20 Representatives from 13 states and both political parties, and in 2015-2016, 13 Representatives from 7 states and both political parties. Some are no longer members of the House of Representatives, but IBS Impact hopes that previous cosponsors who are still in office will continue their support and encourage their colleagues to sign on as well. Now affected people and our supporters must show Congress that this is important enough to pass and enact.

For more information, see IFFGD’s link at: https://iffgd.org/advocacy-activities/congressional-bill.html
The text of the bill, the current status and cosponsors can also be accessed directly at any time through its official Congressional database entry at Congress.gov. If you do not know who your Representative is, you can look up this information by entering your zipcode in the “Find Your Representative” search box with the white U.S. map graphic near the top right corner of your screen at house.gov. In some zipcodes, different areas fall into two or more different Congressional districts, in which case you will then be prompted to enter your exact street address to determine the correct district.

Clicking on your Representative’s name will take you to his or her official House website, which will have contact forms, links or details. If you already know who your Representative is, you can generally find the website by typing his or her name into any Internet search engine. Because modern security procedures for postal mail may result in significant delays, legislators generally prefer to hear from constituents through email/website contact forms or telephone. If you choose to call, it is preferable to ask for the staff person in charge of health issues, but if he or she is not available, you may leave a message or speak to the person who answers your call. Many legislators also have social media accounts.

Your specific personal experiences as a person with IBS and/or other functional gastrointestinal disorder or a family member, friend or professional who supports us, and how HR 1187 is needed are most effective in communicating that we are real people behind the statistics. However, even a polite general request can demonstrate to your Member of Congress that there are many constituents interested in the swift passage of this Act.

When writing and/or calling, be sure to state your name, where you live in the Congressional district and that you are a constituent. Tell briefly why you are interested in HR 1187 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 issue, not just your personal problem, these also help in showing credibility on the issue. The IFFGD link above has some suggested talking points.  Familiarity with your Representative’s record on or interest in other health issues may also help,  but if you do not know these things, telling your own 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. Keep in mind that because of the 2016 elections and redistricting, you may have a different Representative than before, even if you have not changed your residence.

Please sign your real full name, physical address and email address if you choose to write,  or give this information to the staff member you speak to you choose to call on the telephone. Most offices will request it near the end of the call so that they have a record of callers and issues discussed. This is important so that Congressional staff members know that you are actually a constituent and potential voter in their district. Many legislators do not accept communications from those outside their own districts. They may also wish to respond to you, although it may take several attempts to attract attention or some time to receive a reply. Please contact only your member of the U.S. House of Representatives at this time. The President, Senators, Governors or other state or local officials do not have any control over this part of the legislative process.

You do not have to be an excellent writer or speaker, 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 in writing, or a phone message or conversation of a couple minutes.

This is a major opportunity for the IBS community and its various websites, groups and organizations to come together, regardless of political or philosophical 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, as other health and disability groups do.

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.


U.S. Food and Drug Administration Issues Drug Safety Communication for IBS-D Medication Eluxadoline (Viberzi), March 2017

March 15, 2017

Today, March 15, 2017, IBS Impact learned via IFFGD social media that the U.S. Food and Drug Administration (FDA) issued a drug safety communication for eluxadoline (also known by the brand name Viberzi), currently used in treating irritable bowel syndrome with diarrhea in adults, 18 and older, both men and women. This warning applies specifically to people without a gallbladder, whom the FDA advises should not take eluxadoline (Viberzi). There is an apparent high risk of serious pancreatitis, which has resulted in many reported cases of hospitalization and two deaths.

According to the FDA warning notice issued today, as of February 2017, in the 21 months since eluxadoline’s FDA approval in May 2015, the FDA received 120 reports of serious pancreatitis or death. 76 of the 120 patients reported required hospitalization and 2 of them died. In 68 of the patients, it is known whether or not they had a gallbladder. 56 did not have a gallbladder, including the 2 individuals who died. 22 of the 120 cases of serious pancreatitis or death reported additional complications. As a result, the FDA is advising that those with IBS-D who do not have a gallbladder not be prescribed eluxadoline (Viberzi) at this time. For physicians, the drug safety communication includes several suggestions of alternative over-the-counter and prescription medications for IBS-D.

The FDA is working with the pharmaceutical company Allergan to address the safety concerns and urges patients and physicians to report any adverse events to the FDA.  There are no announced changes in safety concerns or recommendations regarding eluxadoline (Viberzi)  for those individuals who do have a gallbladder.

IBS Impact urges readers who have IBS-D and no gallbladder and are currently taking eluxadoline (Viberzi) to consult their physicians promptly. We advise anyone considering any specific IBS medication or treatment to read available evidence-based information, to familiarize themselves with the benefits and risks, and to consult their own doctors as if the given intervention is worth trying in their specific situations. IBS Impact focuses on awareness and advocacy and does not endorse particular interventions, but does encourage accurate and up to date information from reputable sources so that individuals with IBS and their families can make the most informed choices for their own needs and desires.


New Updates to IBS Impact.com Main Website for March 2017

March 8, 2017

IBS Impact has recently completed the latest round of updates to many pages of our main website, IBS Impact.com.

A few links have been replaced with updated versions and several new ones have been added on the news footer, IBS page,  advocacy page, research page, resources page, IBS and children page, family and friends page, and links page. The United States, United Kingdom, Canada, Australia, and New Zealand are all represented in these most recent changes.

Readers interested in the most recent news, events, clinical trial and advocacy opportunities, and articles between main site updates, may follow this blog or our Facebook or Twitter feeds (links found on the lower right sidebar of this blog and in the light blue footer sections below each page of the main site).  Each has slightly different information on an ongoing basis. Regardless of one’s interest in IBS, whether personal or professional, most users should find useful and interesting material and links. The current site reflects resources in six countries which are among the top sources of hits to the site and this blog, with occasional references to several others.

Because of the redesign and transfer of the site to new hosting twice in 2015 and 2016, some links embedded in older posts on this blog or search engine results relating to IBS Impact.com may result in error messages, but you should still reach the site itself. If so, please use the navigation links at the top of the site to reach the desired subpage.  No information that is still currently useful has been removed from the site, although in some cases, the location has changed. Only outdated details and occasional defunct links for which there is no replacement available at this time have been deleted. The date of last update is indicated at the bottom of subpages that change periodically.

Please feel free to check out the site here. Our goals with the website, blog and social media are to provide a varied range of current, scientifically accurate, 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.

IBS Impact as an entity, is not directly affiliated with any other organization, site, or research sponsor and receives no funding for the information we post on the main website, this blog or our Twitter and Facebook pages. We do welcome constructive collaboration and value the many individuals, websites, organizations,  and clinical and research entities who continue to support, encourage and amplify our efforts in various ways to benefit the cause of IBS awareness and advocacy worldwide.

Comments, suggestions, corrections of outdated links, article submissions, and clinical trials or surveys by researchers affiliated with academic, medical, or pharmaceutical entities or reputable evidence-based organizations representing IBS or commonly overlapping conditions in any country are all welcome and will be thoughtfully considered. A contact form  can be found on the main site, or comments can be left on this blog.  Thank you to all of our readers and social media followers for your interest and participation.