Words of Reflection and Thanks From IBS Impact

December 27, 2013

As the year draws to a close, it’s traditional for one to look back on the past and then turn attention toward the future. In the context of IBS, it’s not always easy to do that, because changes over time are often incremental or imperceptible, both in physical and/or emotional progress for an individual, and in the broader challenges of IBS research or societal awareness and advocacy. For the vast majority of those in the IBS community, people with IBS, our families and friends and professionals alike, immediate and dramatic breakthroughs are few and far between. The experience cannot be compressed neatly  into the space of 365 days, 52 weeks or 12 months.

That’s why a social media post this week from InvisAbilities, a grassroots support and awareness organization of students with a range of invisible disabilities or chronic illnesses at several universities in Canada, resonated in an interesting way. InvisAbilities, which IBS Impact first wrote about here on February 7,2012, quoted Henri Nouwen, who was a Catholic priest and prolific author on spiritual topics. Nouwen was born in the Netherlands, and at various times during his lifetime also resided in the United States, France, Italy, Peru and Canada. He wrote:

When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.

Aside from the non-denominational encouragement these thoughts might provide to some readers in a range of difficult life circumstances, the ideas expressed aptly describe a situation familiar to some of us with IBS or other unpredictable, poorly understood medical conditions. The IBS community spends a lot of time lamenting or bringing awareness to some of the many things that go wrong: the misconceptions about IBS that others, including many health professionals and many of our own peers with IBS continue to hold, the insensitive things they may say, the stigma, real and perceived, some of us feel that leads many people with IBS to hide it and react with some amazement when someone else doesn’t,the need for more highly trained professionals and improved treatment options, more and better community support systems, more research funding, and better recognition of the many factors that may affect quality of life for people with IBS. All of these enormous barriers still remain. But it’s also appropriate to acknowledge the things that go right, and the individuals who help make that so.

In gathering past material from this blog that is appropriate to link in this post, it was gratifying to discover that some of it, originally written just a year or two ago, is already somewhat out of date and needs revision in the near future. Also, certainly while some of us are more fortunate than others in having the support of various family, friends, colleagues, classmates and knowledgeable, compassionate health care providers, most individuals with IBS  have at least some good experiences and people among the poor ones. Chronic medical conditions that persist for months, years or even decades as IBS may, can be difficult on everyone involved. Even knowledgeable and helpful doctors and other medical professionals often run out of effective treatments to suggest. Friends, while often concerned and well meaning, especially in the initial crisis of new-onset severe IBS, run out of things to do or say when our particular medical condition never goes away. According to research by Reuben Wong, MD of the National University Health System in Singapore, who has also been associated with the University of North Carolina Center for Functional GI and Motility Disorders, even spouses and significant others of adults with IBS who accurately understand what IBS is tend to experience what the researchers call “partner burden.”

This is where Nouwen’s words become relevant. Many of us with IBS do sometimes hope for advice or cures, although some do not, and IBS Impact was founded on the belief that we are not powerless in the long view of working toward change, so perhaps Nouwen’s words may not apply literally. But in the day to day struggle of living with IBS and/or working for scientific answers, parity in societal resources with other common health conditions, and respect for IBS as a real and non-trivial condition, there are many times when there is nothing more we can do at that moment about our symptoms, logistical barriers, the reactions of others, politics, funding, bureaucracy or slow growing cultures in a research lab. It then that one often realizes who one’s real friends are, the ones who have been there and will continue to be there for the long haul when it is difficult or impossible to see the future or concrete results.  The same is true on the community level also. IBS Impact began as and remains a small, grassroots effort primarily of a few people with IBS. But at various times and in various ways, some consistently, some occasionally, some from within the IBS community, some who have no connection to IBS other than an acquaintance with a member, we have been helped as an entity. So as 2013 ends shortly, thank you to all of the friends and others who support individual people with IBS so we can continue to live as productively and positively as we can, and thank you to all the friends of IBS Impact, who support our vision, even when we do not know exactly where the future leads or when or how we will get there. May 2014 be happy, healthy, prosperous and productive for all.


Northwestern Feinberg School of Medicine, Division of Gastroenterology Seeks 2014-15 Health Psychology Postdoctoral Fellow

December 18, 2013

Northwestern University Feinberg School of Medicine in Chicago is seeking applicants for a 2014-2015 health psychology postdoctoral fellowship in the Behavioral Medicine Service of the Division of Gastroenterology. This is a clinical position with research opportunities working with irritable bowel syndrome, inflammatory bowel disease and esophageal disorders. For the full description of necessary qualifications, responsibilities and application procedures, please see the following link at Northwestern’s Center for Psychosocial Research in GI.

http://www.medicine.northwestern.edu/divisions/gastroenterology-and-hepatology/research/keefer-lab/projects

Northwestern is an active center for clinical care and research into gastrointestinal conditions like irritable bowel syndrome (IBS), inflammatory bowel disease (IBD) and other less commonly known digestive disorders. In particular, this research usually has focused on the psychosocial aspects of gastrointestinal conditions, such as stigma, social impact and perceived quality of life from the point of view of people living with these chronic conditions. As a blog and website founded by people with IBS, most of the time, we have chosen to highlight resources, open studies and other information of interest to that group, However, we also have many readers, social media followers, and supporters among the various health and human service professionals who specialize in gastrointestinal disorders, chronic illness or chronic pain.

Researchers of irritable bowel syndrome have long recognized that the dysfunctions in the brain-gut axis involved in IBS make psychological treatments such as gut-directed hypnotherapy, cognitive behavioral therapy, and occasionally other psychological approaches particularly effective for many people with IBS, even those who do not have coexisting mental health issues. In addition, a statistically significant subset of people with IBS do have overlapping conditions of anxiety and/or depression, either as preexisting diagnoses, or as a result of living with the symptoms and stresses of chronic IBS.

Historically, the number of available mental health professionals who are knowledgeable and well-experienced specifically in IBS and other functional gastrointestinal disorders has been relatively small, making it difficult for most affected people who might benefit from these treatment options to gain access to appropriate, affordable care in or near their home communities. This is true even in many major metropolitan areas with renowned teaching medical centers. It is in the interest of people with IBS as a community to support the continuing education and training of more professionals who might encounter people with IBS in their practices, or find IBS to be a new area of interest or focus

IBS Impact thanks Northwestern for its continuing commitment to gastrointestinal disorders and mental health, and hopes for a robust and fruitful response to this search.


Irritable Bowel Syndrome (IBS) and the Perception of “Normalcy”

December 12, 2013

Recently, Tiffany Taft, PsyD. alerted us to a new blog post of hers. Dr. Taft is a clinical psychologist in private practice at Oak Park Behavioral Medicine in suburban Chicago who specializes in assisting clients and families dealing with a variety of chronic illnesses. She is also a professor at Northwestern University Feinberg School of Medicine and a researcher at Northwestern’s  Center for Psychosocial Research in GI, which focuses on irritable bowel syndrome (IBS), inflammatory bowel disease (IBD) and some other less common and well known chronic gastrointestinal conditions.

In her new post, “Chronic Illness Catch-22,” Dr. Taft describes how, in a recent session, a client of hers who has a chronic illness expressed negative emotions after learning about “normal” test results. Later in the post, Dr. Taft discloses that she, herself, has lived with Crohn’s disease, a form of IBD, for many years and has also had mixed reactions in the past to borderline or normal clinical results of her own. On the one hand, she and her client were each happy that their health was not worse off than it was, but on the other, they were somewhat annoyed, because they knew they still were having symptoms and feeling ill. How can these seeming contradictory thoughts coexist at the same time? Borrowing her own title from that of a well-known novel, Dr. Taft calls this ironic double-bind the “catch-22” of chronic illness. It’s likely that similar thoughts have occurred at one time or another to many of us who have ongoing medical conditions.

Why might we feel this way? Dr. Taft offers one probable explanation in line with her longtime research interest, stigma, about which she wrote a guest post on this blog last April for IBS Awareness Month. Perhaps we fear our friends and family will not take our conditions and the resulting needs seriously if the results of medical tests show up as “normal”. From the personal experiences of many people with IBS, IBD and other chronic illnesses and disabilities, especially those that are not readily visible to others, that concern is not necessarily unfounded.

It’s possible to make an educated guess as to why Dr. Taft thought her article would interest IBS Impact, even though IBD is a different disorder. The course of the disease in a person with IBD can often be followed by blood markers and visible inflammation, but this is not the case for IBS. At this stage of the science, the medical tests of a person who has IBS and no other coexisting gastrointestinal condition, are always completely normal. That does not mean nothing is wrong, but that usable tests for the abnormalities researchers know to be associated with IBS and the ones still not discovered or sufficiently understood do not exist yet. As a result, many people with IBS experience insensitivity from friends and family (Also see the February 27, 2013 post.), who may, for example, tell someone with IBS to “try harder” to maintain a pre-IBS lifestyle or to get well. Many people with IBS have encountered at least one medical professional who has said things like,  “Nothing is wrong.” “It’s in your head.” “It’s not serious.” “It’s not cancer; It won’t kill you,” in ways the individuals with IBS found dismissive. Although much progress in awareness and in the science of IBS has been made in the past few decades, outdated misconceptions about IBS  die hard. So potential stigma, real and perceived, is a huge issue in why some people may have the conflicting feelings Dr. Taft describes in her client and herself.

There are other possible questions that are raised by this scenario. How do we perceive ourselves as individuals with chronic illnesses? Especially if we have an invisible condition like IBS, do we see ourselves as sick and different or  “normal,” just with IBS? How do we want to present ourselves to others or have them perceive us? How are we affected or not by others’ positive or negative responses to our IBS?  Do we hide our IBS or are we open? What are the advantages and disadvantages of our choices in different aspects of our lives, such as with family or friends or in school or the workplace? Do we see IBS as a personal issue or do we identify with the concepts of an IBS community and IBS as a societal issue? Are we willing to advocate for ourselves or others? How much of our experiences and our needs are specific to IBS and how much is in common with other health conditions and disabilities? IBS Impact hopes to explore some of those topics on this blog over time. For now, we encourage you to read Dr. Taft’s post and comment on her blog and this one. We welcome your thoughts and reactions.


Online Study: The Psychological Picture of Inflammatory Bowel Disease and Irritable Bowel Syndrome, Western Michigan University

December 2, 2013

This study is being conducted by student investigator Jeralee Briggs, M.S, M.A., as part of master’s degree thesis requirements in the Department of Psychology at Western Michigan University. The principal investigator and supervisor is R. Wayne Fuqua, PhD.

This online survey  is open to men and women ages 18 and over with a physician diagnosis of irritable bowel syndrome  (IBS) or inflammatory bowel disease (IBD).  There are no stated restrictions as to country, although the questions are in English. According to the study description, the questionnaires should take approximately 18-25 minutes to complete. Although standard demographic information such as age, sex and race/ethnicity are asked in addition to questions about IBS symptoms, impact and associated emotions, the study is anonymous.

Participants who wish to take part in a random drawing for one of three $30 Visa gift cards to be offered for completing the study may opt to provide a first name and phone number or email address at the end of the questionnaires, so the researchers may contact them if their names are chosen.

This survey is expected to close on July 18, 2014.

Please address any questions or concerns about the survey directly to the study investigators at the contact information listed on the survey page linked below.

http://www.surveymonkey.com/s/ibd_ibs_survey