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: Let’s Work Together to Manage IBS

April 10, 2016

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

Jon S. has IBS and lives in the United Kingdom. He has a degree in biochemistry and now works as an analyst in the tech sector. In his spare time, Jon follows developments in the science behind, and treatments for, IBS. He shares this knowledge via his blog (patientj.wordpress.com) and via support to IBS sufferers on Health Unlocked.

For many sufferers, despite the international Rome diagnostic criteria in existence since 1991, (see page 889, section C1 at link) IBS still feels like a diagnosis of exclusion: we have a series of digestive problems but blood or other tests rule out anything more ‘serious’. Many of us initially don’t understand the concept of functional disorders like IBS or how they are real but do not show up on currently available tests. As a result, we find ourselves placed in what appears to be a catch-all umbrella term for unexplained bowel symptoms: irritable bowel syndrome. This situation is far from ideal: it can make patients feel their condition isn’t being taken seriously, and frustrated when alternative diagnoses aren’t considered, or even known about.

The good news is that more is being understood about IBS every year, and the Internet and social media are useful ways for sufferers to learn more about their illness and discover alternative treatments or problems their own doctors might not know about. But we’re still a long way off fully applying this learning in the clinical environment. Although the updated Rome IV is due out next month, many other diagnostic tools aren’t available in the clinical setting yet, we still don’t know what some of the causes are, and because of the way medicines are licensed and approved, it may take time for some experimental treatments to be available for use. It’s also clear that not all frontline doctors are fully abreast of even the more recent treatments for IBS.

So, in the meantime, what can be done to help improve the treatment and management of IBS? I believe there are changes we can make as patients, clinicians and institutionally that will benefit everyone. However, these changes require humility and the willingness to want to improve to have the best chances of success.

Patients

First of all, we as patients need to understand and accept that there isn’t a silver bullet for IBS. Medical and scientific professions don’t understand all the causes for IBS, and even when we do have evidence of a trigger, we don’t necessarily understand the underlying biochemical and physiological reasons for how the triggers give rise to symptoms, or even how to treat it.

For this reason, treatment of IBS is a process of trial and error. And often error. It can take several months or years to discover the right treatment, or combination of treatments, to combat an individual’s symptoms. And as there is no magic pill, we also need to look at our own lifestyles and accept that these, too, could be contributing to our problems. Some patients find that poor diet and/or endemic stress and anxiety in general or triggered by life events can exacerbate IBS. This isn’t always the case, and isn’t necessarily easy to change, but in my experience it is one of the things sufferers are reluctant to address.

We should also be alive to the fact that we might not be able to treat IBS at all. A significant proportion of patients (20-25 percent) will find no improvement through managing their stress and altering their diet. And even if this is possible, for many it will still require the long-term management of our symptoms, making life as tolerable as possible, but not necessarily clearing it up altogether. In this way, IBS is a silent disability, but something we can hope to change over time through things like IBS Awareness Month and political campaigning.

And we can also do lots to understand our symptoms, too. In the UK, pages like the NHS Choices’ website, the IBS Network and NICE Clinical Guidelines provide good starting points on IBS management and clinical best practice, the majority of which will be applicable regardless of which country you live in. This doesn’t mean we shouldn’t trust our doctors. Believe it or not, the majority of the time the doctor is probably right: it is IBS as opposed to anything more serious. However, I feel that sometimes we feel let down by the medical profession when they don’t seem to support us, or when the treatments don’t work. We can only overcome this by understanding more about our condition and working with our doctors to explore our symptoms more.

 

Doctors

As in any profession there are excellent doctors and some pretty bad ones and then the whole range of skills and competencies in between. Indeed, partly because I have several friends who are doctors, I have a considerable amount of appreciation for the profession. And I think that anyone who has worked in a high-pressure environment where the policies, procedures and technologies are constantly changing can appreciate how difficult it must be for the average family doctor to amass and apply a growing and shifting body of knowledge and best practice.

All the same, I hear too many stories of patients who feel like their doctor doesn’t care or understand, or people who’ve reached their wit’s end because nothing appears to be working. I feel these are both cases where doctors have failed: if doctors have lost their desire to care for people, they have failed their patients; if they have lost their passion to solve medical problems, then they have failed themselves.

That said, I think there are a few things that doctors can do to better support their patients. To start with, how would you adapt your approach if you considered IBS more a symptom than a diagnosis? Would this make you more willing to look at differential diagnoses or change how you give advice?

Moving on, there are a range of treatments available but not every treatment will work for every patient. After I’d seen four different GPs, only the last one explained that they’d like me to try one drug first and then if that didn’t work we could review later and either change dose or drug. But why had it taken four doctors before one said “this drug might not work but I want to start you on the drug with the fewest side effects…”? We’d like you to work with us but it sometimes sounds like we’re being given a cream for a rash that will go away in a couple of weeks.

Work with your patients to try and help us understand the underlying cause(s) of our IBS and the current research understanding of what it is and what can be done to help us. Clinical standards will vary from country to country but I suspect, Rome criteria aside, most will advocate at least some blood tests to rule out other disorders. Some patients would benefit (or just like to know) what any tests looked for and found; it may also help very anxious patients understand why you are ruling out more life-threatening conditions. If tests aren’t indicated or helpful, which criteria or considerations are being used and why?

We appreciate that you’re busy but please be patient with us and take some time to explore our own theories of what might be behind our IBS. One of the most frustrating things for sufferers is to be told that such-and-such a condition is unlikely, but then do no tests to prove or disprove that. I accept that some diagnostic tests are too dangerous or expensive but for an enigmatic illness like IBS, any number of things could be causing the symptoms and we need your help to find out. We need more patient-scientists but that is only possible with the support of more-knowledgeable professionals. We have more time on our hands to explore our symptoms and we want to get to the bottom of them (if you’ll pardon the pun). I’m not saying that every wacky thing out there on the Internet should be given credence but talk us through your reasoning, explore alternative diagnoses, and agree on a strategy with us to help rule other factors in or out and pursue treatment.

Finally, please update yourselves on the latest clinical guidelines as well. I have heard stories about, and experienced, doctors who have not conducted appropriate tests or advised vastly outdated treatments. And if you are still at a loss, please consider sending us to a specialist, especially if together we have tried several treatments and tests and are still none the wiser.

 

Institutions

Ultimately, institutional changes will have the biggest impact on patients and doctors alike.

First of all, we need more cost-effective ways to help patients manage their IBS. Is it sensible to use up a doctor’s time for routine management of an IBS case? In the UK, the IBS Network advocates the training of specialist nurses in the NHS to support IBS sufferers, a suggestion that would no doubt benefit sufferers in other countries as well.

I would go one step further and give pharmacists a greater role in managing IBS, too. Pharmacists will already be aware of the various drugs licensed for treating the condition and their contraindications; they may even spot how a patient’s existing cocktail of drugs might be contributing to or causing IBS symptoms. In other words they seem ideally placed to work with patients to discover the most suitable drug(s) to treat their symptoms. We would also provide them with additional training to know when to recommend a dietician or alternative therapies.

I would also like to see institutions loosen the treatment guidelines for IBS. For instance, in the UK, the NICE advice is a useful starting point for managing and diagnosing IBS in patients but it potentially stops clinicians from using their scientific and medical judgement to request alternative tests or try out certain treatments with their patients (with the patient’s consent of course). We don’t know what causes IBS so provided a drug is safe to give and is being given for a clinical purpose, what is wrong with doctors being able to prescribe something to see if it helps a patient?

In short, there are several ways we can improve the diagnosis, management and treatment of IBS. Things start with small changes in how we as patients approach our discussions with doctors, and doctors’ willingness to engage in a conversation with patients. These will go someway to improving the approach to managing IBS. However, both patients and doctors are likely to be held back unless there are some concomitant institutional changes made as well. Policy changes aren’t always easy, and there can sometimes be reluctance in various quarters to implement change. But, at the end of the day, a condition that affects up to 20 percent of the population needs better solutions to manage limited resources in the best way possible for both patients and practitioners alike.

 

 

 


Free Online Webinar for IBS with Dr. Drossman, “How to Make the Most of Your Doctor Visit” on April 16, 2015

April 4, 2015

The American College of Gastroenterology, the Rome Foundation, and the International Foundation for Functional Gastrointestinal Disorders (IFFGD) have announced that for IBS Awareness Month, they will be sponsoring a free online webinar presented by Douglas Drossman, MD, MACG on “How to Make the Most of Your Doctor Visit.” The webinar will take place on Thursday, April 16, 2015 from 8:00-9:00 p.m. Eastern time. The webinar is designed for people with irritable bowel syndrome and family members, but health care professionals are also welcome to attend.

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, and retired co-director of the University of North Carolina Center for Functional GI and Motility Disorders, along with many other pivotal roles in the development of the field of functional gastrointestinal disorders like IBS over his 40+ year career.

Dr. Drossman will take questions of general interest at the end of his presentation, or they can be emailed in advance through the American College of Gastroenterology at jgaulin@gi.org. Further details are available at the link below. 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.

“How to Make the Most of Your Doctor Visit” Webinar with Dr. Drossman, April 16, 2015

This is a tremendous and unique 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, the Rome Foundation and IFFGD 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.

 

 


More Things To Say and Not to Say to People With IBS

February 27, 2013

Recently About.com IBS Guide Dr. Barbara Bradley Bolen blogged on 10 insensitive  comments or close variations often heard by people with IBS from those around us, along with 5 comments that many people with IBS would appreciate as helpful. According to Dr. Bolen, this post grew out of a joint project with many of her fellow About.com Guides who created their own lists for their respective disability or health condition of interest, several of which Dr. Bolen links to her own post.

This week, IBS Impact has chosen to draw attention to this excellent effort for several reasons. First,  these relatively brief and readable posts are ideal for spreading awareness among family members, friends, colleagues, classmates and the general public who do not have IBS or another highlighted disorder. Second, many individuals who are significantly affected by IBS tend to believe that we are the only ones whose struggles are severely misunderstood. Perhaps some of us can find solace and confidence to advocate for ourselves by realizing that those with different, higher profile medical conditions often experience similar reactions and social barriers. Third, there are surely more than 10 things people should not say and 5 things they should say to people with IBS, and this is an opportunity for both IBS Impact and readers to add more to the list.

Readers are invited to read Dr. Bolen and her colleagues’ posts directly for details, but most of Dr. Bolen’s “don’t” list can be summarized as this: Please don’t assume or imply that IBS is “all in the head,” as it is a complex but very real physical condition. Please don’t assume that there is an easy fix if the person would only eat the right things, exercise more, see the right doctor, get out of a given stressful situation, follow what you or someone else you know with IBS did, etc. Given the current state of the science, there is no cure, or even any way of predicting how any individual person will respond or not to any specific treatment intervention, none of which are universally effective. Each person is different in severity, symptoms and symptom pattern. Please don’t call attention to bathroom habits, which can be embarrassing. Many people with IBS do need a restroom frequently, unpredictably, urgently, may take a very long time in there, or all of the above, usually have to pay more attention to our digestive systems than any reasonable human being would prefer, and will do what we are able to minimize disruptions to ourselves and others, but some aspects are out of our control.

IBS Impact would add two more common reactions to the “don’t” list. Please don’t say, “It won’t kill you.” or “It’s good that it’s not [insert life-threatening condition].” Some clinicians and researchers in the field of functional gastrointestinal disorders report that some people with IBS fear colon cancer or something other than IBS. As such, educational materials on IBS often “reassure the patient” or advise other professionals to do so. Granted, if the person with IBS has been recently diagnosed, does not appear to know very much about IBS, and/or is explicitly expressing concern about a life-threatening condition, it is appropriate to educate the person on this point. However, many people with IBS have heard this from health care providers  when we were not indicating concern about a potentially fatal diagnosis, or were specifically communicating something else, such as the need for more effective pain relief. People often hear this from relatives or friends, as well. In either context, this comment can be very insensitive, effectively dismissing what,for some people, may be significant chronic symptoms and disruption as not “serious” enough. Most people with IBS, like anyone else, have had people about whom we care become ill and/or die from various life-threatening conditions, and we understand that those illnesses can also pose a range of  physical, emotional, social and/or financial difficulties for the person and loved ones. However, it’s not a productive comparison that moves toward the goal most people with IBS have of learning how to live as well as possible with IBS.

Also, please be careful with, “But you look so good!” or similar statements. While the speaker may have good intentions, if the person with IBS is experiencing severe symptoms, this comment can also be awkward at best, and dismissive at worst. IBS is mostly an invisible condition. Some people have sporadic periods in which symptoms flare up and then recede. Others live with pain, fatigue, digestive distress or incontinence, and perhaps additional non-GI symptoms most or all of the time. If the person with IBS doesn’t feel as well as he or she supposedly appears, to reply, “Yes, I’m doing well.” when it is not true is likely to make him or her uncomfortable. On the other hand, to retort truthfully, “No, actually, I’m in terrible shape.” is more candid than most people with IBS are willing to be with strangers, casual acquaintances or colleagues at all, or even close friends or relatives too often because it will make the commenter uncomfortable. Thus, many people with IBS choose not to respond or explain, but that does not necessarily mean agreement. Keep in mind that the person may be using limited energy to focus on necessary daily activities and function as well as it appears, and may not have much left to deal with casual conversation, questions or requests.

What should concerned people without IBS say and do to be considerate of those of us who live with it? Dr. Bolen’s answers have the common theme of respecting the person with IBS’s dignity and knowledge of his or her own body and needs. Here, IBS Impact would include some health professionals, who may respond to less common symptom patterns or concerns with preconceived notions of how IBS is “supposed to be.”

In family, school, work and social contexts, Dr. Bolen suggests that others do take a person with IBS’s need for a bathroom seriously and help find one as quickly as possible when needed. IBS Impact would add that if one is close enough to the person with IBS, and is able to do it discreetly, those who proactively think to point out the restrooms in an unfamiliar location beforehand are much appreciated.  Dr. Bolen also suggests asking about food preferences and respecting those needs. Not everybody with IBS is helped by diet, but it is considerate to ask, as it is about any needs or preferences for travel or social situations or in general. Reaching out with a bit of open-ended kindness and encouragement goes a long way, as many people with IBS are isolated and support systems in local communities are not readily available. Many are embarrassed to discuss IBS, and even those of us who are fairly open about IBS find that as time goes on, many people who are initially supportive become tired of the subject or run out of things to say. As Dr. Bolen writes, “How can I help?” or “I’m sad/sorry that you have to deal with this.” can show support. IBS Impact would add even, “How are you doing?” if the asker is prepared to hear an honest answer. Many people with IBS will appreciate genuine interest and compassion, which sometimes appears to be offered more readily to those dealing with other types of medical conditions. It would be easier for some people to be open about IBS if they feel confident of helpful and non-judgmental receptions.

IBS Impact encourages readers to comment with other things they wish others would say or not say or do in regard to IBS. For those who are interested in further articles geared toward family and friends, please see the dedicated family and friends section on the main IBS Impact site.


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.