UNC Online Chat: “Low Energy Metabolism” and Irritable Bowel Syndrome (IBS) on June 5, 2012

May 29, 2012

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has announced the next online chat in its “Evening with the Experts” series. It will take place Tuesday, June 5, 2012 from 8:00-10:00 p.m. Eastern time. Miranda van Tilburg, PhD of the Center will present on the topic of “Low Energy Metabolism: Can It Explain Your IBS Symptoms?”

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. Many past video presentations are archived on the Center website, but the actual chat sessions are conducted live and are not archived.

Those who are unfamiliar with UNC’s online chat series may also find this previous post by IBS Impact on July 29, 2011 to be of interest.

New Updates to IBS Impact.com for May 2012

May 20, 2012

Another major update to several pages of the IBS Impact main website has been ongoing through much of April and May and has just been completed.  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 and useful posts. There have also been additional resources added and updated, particularly on the links page. Although most of the established IBS information and support forums draw international readership to varying extents, the originating country has now been added to each listing to assist IBS Impact visitors who seek a specific national perspective.

Over the past several weeks, much new material has been added to the family and friends page, including an excerpt from the memoir of Sophie Lee in the United Kingdom, owner of the IBS Tales website. Sophie, an adult who has had IBS since childhood, offered her material to IBS Impact in the hope that others with IBS do not need to experience as much misunderstanding from others as many of us with IBS have had to over the years. The family and friends page also now includes a link to the April 11, 2012 guest post by IBS Impact on assisting children with IBS on the Ask Moxie parenting blog. Comments on that post are no longer being accepted on Ask Moxie, but are welcome here on the IBS Impact blog. Finally, the link to the video portion of the April 2012 UNC online chat on partner burden and IBS with Reuben Wong, MD of the National University Hospital in Singapore has been added to the page for adults with IBS and their spouses or partners.

As noted previously on this blog, in April, we launched a new section for links specific to children and adolescents with IBS and in May, we have just added more resources. We hope these are helpful to parents, guardians and others who are trying to help young people with IBS or functional abdominal pain, also known as recurrent abdominal pain (FAP/RAP), which is a diagnosis similar to IBS without the bowel disturbances.

Facebook and Twitter icons, previously only on the sidebar of this blog, have also now been added to the main site for visitors’ convenience. We encourage people with Facebook and Twitter accounts to follow IBS Impact.

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.

Clinical Trial: IBS and Relationships, University of Adelaide, Australia

May 16, 2012

The following study is re-posted from the most recent newsletter of Sophie Lee, owner of the IBS Tales website in the United Kingdom. IBS Impact thanks Sophie for this information. Sophie writes:

“Dear All,

This is a special message for Australian IBS sufferers. An academic researcher is looking for IBS patients for her study – can you help? Please contact the researcher directly to volunteer, and many thanks to anyone who participates.”

IBS and Relationships Study

IBS affects people’s lives in so many different ways, yet medical and health professionals often remain unaware of the extent of impact. I’m interested in hearing about your IBS and how it may affect your most important relationships – whether they be with your partner, your friends, family, work colleagues or anyone else.

There is no pressure or expectation to discuss anything you do not wish to discuss. Personal details are completely confidential and you are free to withdraw at any time.

Interviews can be conducted via telephone, Skype or face-to-face. I have almost finished interviewing but still need to hear from:

– men under 50 years of age
– men and women of any age in new relationships
– same-sex attracted men and women of any age

or any combination of the above!

For more information, please visit my study information website: http://ibsrelationships.wordpress.com/

You can also check out my research page here: http://www.adelaide.edu.au/directory/katie.crocker
If you would like to be interviewed, and you live in Australia (to avoid the influence of other medical systems), or you have any questions about the study, please feel free to email: katie.crocker@adelaide.edu.au or call me on (08) 8222 5141.

Warm regards,

Katie Crocker
PhD Candidate
The University of Adelaide

IBS Impact  encourages readers in Australia to participate. For readers in any country who are interested in the topic of relationships with partners, please see the family and friends page on the IBS Impact main website, which includes several articles for loved ones of people with IBS, and a recently added link to the video portion of the April 2011 UNC Evening With the Experts chat, in which Reuben Wong, MD of the National University Hospital in Singapore discussed partner burden and IBS.

UNC 2012 Patient Symposium Goes Live Online June 23-24, 2012

May 11, 2012

The University of North Carolina Center for Functional GI and Motility Disorders has announced that its 2012 Patient Symposium will take place at the Siena Hotel in Chapel Hill, North Carolina on June 23-24. This annual event, geared to people with functional GI disorders and families, will include presentations and panel discussions from a variety of leading professionals on the broad topics of IBS, Pediatrics, Pelvic Floor Disorders and Upper GI Disorders.  For the first time, the weekend’s activities will be broadcast live online, allowing anyone in the world with an Internet connection fast enough for audio, video and chat technology to view the sessions and submit questions, similar to what is done during the monthly UNC online chats.

For those who wish to attend the symposium in person, there is no charge, but registration is required. Breakfast and lunch will be provided. For those traveling to Chapel Hill from outside the local area, UNC has secured a group rate at the hotel for a limited number of rooms. People who plan to participate online do not need to register. A link to log on will be added to the event page prior to the scheduled date.

More details on the event and registration, including a schedule in PDF format, can be found at the following link.

UNC 2012 Patient Symposium

IBS Impact encourages readers to consider this excellent, unique opportunity to interact directly with leading researchers and other professionals in the functional GI field, ask questions and give them feedback on our needs and concerns.

Effective Relationships With Health Care Providers If You Have IBS

May 4, 2012

Many people with IBS  report at least one past negative experience with a physician or other medical provider. Unfortunately, because IBS is such a complex disorder that is not completely understood or respected, even by many health care professionals, some people with IBS will have many bad interactions of this sort. However, positive experiences are possible if both the provider and patient are open to effective communication. Over the years, studies have shown that a good relationship is an important factor in improved outcomes for those who have IBS.

This blog often discusses systems advocacy issues focused on long-term changes in society for those with IBS. However, part of learning to advocate for broad IBS community concerns starts with knowing how to advocate well for our own immediate needs. Several reputable websites in the digestive or chronic illness community have plenty of good quality articles and multimedia offering various perspectives on communicating with health care providers, so the links will be highlighted here.

The University of North Carolina Center for Functional Gastrointestinal and Motility Disorders has just begun circulating a video of a lecture to fellow medical professionals recently presented by Douglas Drossman, MD, FACG, the Center’s co-founder and recently retired co-director, who is newly in private practice at Drossman Gastroenterology in Chapel Hill. Dr. Drossman has a particular expertise and interest in doctor-patient communications as they relate to functional GI disorders. The Center website also includes an earlier article on the subject by Dr. Drossman and Donna D. Swantkowski, Med  among its downloadable educational handouts. Lastly, the video portion of the October 2011 UNC online chat on doctor-patient relationships with Albena Halpert, MD of Boston Medical Center can be viewed in the Center’s chat archive.

IFFGD has an IBS-specific page on its website on working with your physician. This page also links to other IFFGD pages on how to find a doctor, a worksheet that can be used for doctor visits, and what to do if you decide to end a relationship with a medical provider who is not a good match for you. The website of the Digestive Health Alliance, the grassroots arm of IFFGD, provides an online directory of professionals in the U.S. and other countries who express a specialization or interest in functional gastrointestinal disorders like IBS. Finally, IFFGD publication #221, Medical History: How to Help Your Doctor Help You, by W. Grant Thompson, MD,  FRCPC of the University of Ottawa in Canada, is newly updated for 2012. It and Fact Sheet #116, Doctor-Patient Communication by Kevin W. Olden, MD and Fact Sheet #142, How to Talk to Your Doctor– The Doctor’s Perspective by Patricia L. Raymond, MD, FACP, FACG are all available for download in IFFGD’s publications library.

The Gastrointestinal Society in Canada offers an article, Making the Most of a Visit to Your Doctor, on its website.

On the IBS Impact advocacy page, scroll down to near the bottom of the page to find two additional links on this topic. One is to an article written by Pauline Salvucci,  who is described on Healing Well, the chronic illness site on which the piece appears, as a retired medical family therapist and person with a chronic illness. That linked Healing Well page also has several videos on effective communication. The second link on the IBS Impact advocacy page is to Barbara Bradley Bolen, PhD, clinical psychologist and About.com IBS Guide, who discusses the effect of doctors’  attitudes on effective care and links to some of her other posts and reader responses on the subject.

IBS Impact thanks the above entities for providing these resources  to the IBS community and hopes that some of this information will be helpful to readers of this blog.