Irritable Bowel Syndrome Message Boards | Nonsense versus Horse Sense...

do you think its important for IBSers to know about the Brain gut axis and that they have a typoe of brain in the gut? A lot don't but it is very important in IBS.

this is positive or negative?

What Patients Know About Irritable Bowel Syndrome (IBS) and What They Would Like to Know

National Survey on Patient Educational Needs in IBS and Development and Validation of the Patient Educational
Posted 09/18/2007

Albena Halpert, M.D.; Christine B. Dalton, PA-C; Olafur Palsson, Psy.D.; Carolyn Morris, Ph.D.; Yuming Hu, Ph.D.; Shrikant Bangdiwala, Ph.D.; Jane Hankins; Nancy Norton; Douglas Drossman, M.D.

Abstract and Introduction
Abstract
Patient education improves clinical outcomes in patients with chronic illness, but little is known about the education needs of patients with IBS.
Objectives: The objective of this study was to identify: (1) patients perceptions about IBS; (2) the content areas where patients feel insufficiently informed, i.e., "knowledge gaps" about diagnosis, treatment options, etiology, triggers, prognosis, and role of stress; and (3) whether there are differences related to items 1 and 2 among clinically significant subgroups.
Methods: The IBS-Patient Education Questionnaire (IBS-PEQ) was developed using patient focus groups and cognitive item reduction of items. The IBS-PEQ was administered to a national sample of IBS patients via mail and online.
Analysis: Frequencies of item endorsements were obtained. Clinically relevant groups, (a) health care seekers or nonhealth care seekers and ((IMG:http://www.ibsgroup.org/forums/style_emoticons/default/cool.gif) users or nonusers of the Web, were identified and grouped as MD/Web, MD/non-Web, and non-MD/Web.
Results: 1,242 patients completed the survey (371 via mail and 871 online), mean age was 39.3 � 12.5 yr, educational attainment 15 � 2.6 yr, 85% female, IBS duration 6.9 � 4.2 yr, 79% have seen an MD for IBS in the last 6 months, and 92.6% have used the Web for health information. The most prevalent IBS misconceptions included (% of subjects agreeing with the statement): IBS is caused by lack of digestive enzymes (52%), is a form of colitis (42.8%), will worsen with age (47.9%), and can develop into colitis (43%) or malnutrition (37.7%) or cancer (21.4%). IBS patients were interested in learning about (% of subjects choosing an item): (1) foods to avoid (63.3%), (2) causes of IBS (62%), (3) coping strategies (59.4%), (4) medications (55.2%), (5) will they have to live with IBS for life (51.6%), and (6) research studies (48.6%). Patients using the Web were better informed about IBS.
Conclusion: (1) Many patients hold misconceptions about IBS being caused by dietary habits, developing into cancer, colitis, causing malnutrition, or worsening with age; (2) patients most often seek information about dietary changes; and (3) educational needs may be different for persons using the internet for medical information.

Introduction
Because of the impact of chronic conditions on health status and health care expenditures, managing chronic illness is one of the major challenges of modern medicine. Consequently, there is growing interest in effective educational programs, to provide patients with the necessary knowledge, skills, and confidence (self-efficacy) to manage their disease-related problems.

The goal of patient education is to facilitate changes in patient behavior for the purpose of disease management or prevention. While different health education theories focus on many different aspects of this complicated process, most agree that facilitating change of behavior requires incorporating the patients' current knowledge, prior disease experiences, attitudes, goals, motivations, and cultural perceptions. The existing literature describes educational interventions based on a variety of health education models (e.g., health belief model, the theory of planned behavior, or theory of self-efficacy) in search of effective educational models for the management of diabetes, hypertension, arthritis, and cancer. However, relatively little is known about what constitutes an effective patient education model in irritable bowel syndrome (IBS) and other functional bowel disorders. The emerging research typifies IBS as a brain-gut disorder where psychosocial factors (e.g., stress, cognitions, coping, etc.) can alter the symptoms and illness experience for better or worse. Due to these and other disease specific characteristics, that are amenable to education, we believe effective educational interventions may significantly impact the management of this common disorder. Prior to designing, studying, and implementing theory based educational strategies for IBS, we need to better understand patients' disease experience, knowledge, misconceptions, motivations, and perceptions. Few studies to date have evaluated IBS "through the patients' eyes" and none have systematically examined patients' prior knowledge about IBS.

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Current Knowledge and Misconceptions About IBS
The majority of participants were able to correctly identify the symptoms and triggers of IBS. Stress at work and psychological factors were identified as triggers by more than 70% of subjects. Of note is that a significant number of patients held misconceptions, including that IBS can develop into: colitis (43% agree, 29.7% not sure), malnutrition (37.7% agree, 33% not sure), a problem needing surgery (34.3% agree, 33% not sure), and cancer (21.4% agree and 36.3% not sure). In addition, a significant number of responders thought that IBS results from lack of digestive enzymes (52.1% agree and 28.2% not sure) and would worsen with age (47.9% agreed and 30.4% not sure). The majority of the participants were optimistic that new treatments will be soon available for IBS (62.6% agreed, 27.8% not sure). See Table 3 , Table 4 , Table 5 and Table 6 for correct conceptions and misconceptions (the latter shown in italics) about IBS. Regarding knowledge about lifestyle modifications as a treatment for IBS, subjects endorsed mainly eating small meals, a high fiber, low fat diet, and avoiding milk products. Nondietary lifestyle modifications such as exercise were not frequently endorsed ( Table 7 ). The majority of our subjects were familiar with first-line treatments for IBS such as antispasmodics, antidiarrheals, and fiber agents. A total of 35% endorsed antidepressants, 16% tegaserod, and 5% alosetron ( Table 8 ). When asked if psychological treatments (cognitive behavior therapy, relaxation techniques, etc.) are potential treatments for IBS, 29.1% of participants disagreed, 41.7% agreed, and 21.4% were neutral/not sure.

Educational Needs Regarding IBS
Subjects were primarily interested in learning about what foods to avoid, causes of IBS, and coping strategies. In addition, more than 50% of responders wondered if IBS will shorten their lives, how psychological factors affect IBS, and what medications they can use to prevent an IBS "attack." Of note is that close to half of the participants wanted to know about what is a normal bowel habit, whether IBS will get worse and about available IBS research. See Table 9 and Table 10 for more detailed results on patient educational needs.

IBS Educational Needs Regarding IBS in Subgroups
Patients who used the Web, regardless of clinic status, seemed better informed about IBS and held fewer misconceptions (e.g., had less need to know what IBS is, or whether it will shorten their lives), and more interested in learning about the causes of IBS, foods to avoid, and coping strategies ( Table 13 ). Finally, based on our findings we created a summary of an IBS patient profile regarding IBS knowledge and educational needs ( Table 14 ).

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Discussion
Educating patients about their illnesses improves adherence to treatment, quality of life, and satisfaction with care.

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Our survey identified what IBS patients in the United States know about their condition and what their educational needs are in regard to IBS. There are several key findings, which have implications for the way in which clinicians needs to offer education.

Patients' Misconceptions About Implications of IBS: Patients hold misconceptions about IBS developing into cancer, colitis, causing malnutrition, or shortening the life expectancy. Such misconceptions can produce great concern, anxiety, and reluctances to accept reassurance, particularly if the physician is not aware of them. This only reinforces a vicious cycle of health worry and urgent requests for diagnosis, along with increased physician visits and demands for more testing.[14] Thus it is important for educational materials to explicitly identify and address these misconceptions. In addition, clinicians need to proactively inquire about the patient's beliefs and concerns (e.g., "What do you think is causing your symptoms?" and "What are your concerns about them?"). Eliciting these thoughts and feelings will have a palliative effect on health anxiety and will lead to a more therapeutic response when the reassurance occurs within the context of the patient's expressed concerns.

Patients Seek Information Primarily About Food and Diet: Our data highlight the strong attribution patients make about the role of diet in IBS. Patients most often seek information about dietary changes and the role of food in contributing to IBS (reflected in concerns about "what foods to avoid?"). Yet because of the limited evidence for dietary factors being causative in IBS, physicians often are unable or unwilling to offer specific advice on diet. Nevertheless, our data support the importance of addressing this topic, and to educate against idiosyncratic food practices that may occur. For patients who focus excessively on unnecessary food elimination in seeking relief from IBS symptoms, it may be helpful to explain gut physiology and introduce the possibility that the ingestion of food in general, rather than specific foods, may be triggering the symptoms. Importantly, overly restrictive diets need to be replaced by recommendations for a well-balanced diet.

Patients Associate IBS with Triggers and Distress: Notably 70% of the study subjects agreed that there is a connection between their symptoms and psychological distress. However, this report contrasts with our clinical experience, since patients less frequently volunteer this association in the clinical setting, possibly out of fear of stigmatization, or the perception that this is "all in my head." Thus it is important for the clinician to be open to this option but to inquire in a matter of fact manner: "Are there any other factors that can worsen your symptoms, like diet, physical activity, or stress?" In addition to obtaining potentially meaningful clinical data that will help treatment, this approach conveys a high level of acceptance of this association as a matter of course rather than it being a "psychiatric" problem. The high level of acceptance of stress as an operative factor in IBS may relate to the population that is being drawn from the community rather than referral settings. With the latter group, the high psychosocial morbidity is associated with denial of a role for stress.[15, 16]

Patients Consider IBS a Diagnosis of Exclusion: Over 50% of the patients considered IBS to be a "catch all" diagnosis and another 22% were unsure. While this could reflect the information provided by their physicians (thus highlighting the need to also educate physicians about IBS), this misconception may motivate patients to seek more and more diagnostic studies to find "the cause." The use of the Rome criteria[17] permits the patient to have a positive diagnosis. With confidence in knowing that IBS is a specific entity, such behaviors are minimized. Thus it is important for the physician to provide proper education about the level of confidence in the diagnosis.

Web Users are More Informed About IBS: We found that IBS patients who use the Web have better knowledge about IBS in general, fewer IBS misconceptions, and are more aware of psychosocial disturbances being associated with flares. They also seem more "up to date" with commonly used medications and more interested in learning coping strategies. The implication of this finding is that the nature and content of educational interventions will differ for Web and non-Web users with IBS. Prior data suggest that more than 50% of Americans use the Web and about 52% have used the Web for obtaining medical information.[18] Similarly, the majority of our participants have used the Web for obtaining medical information (92.6%), suggesting that future Web-designed educational interventions will probably be well accepted. For the clinician, it suggests that the type of education provided (e.g., Web sites vs brochures) and its content (i.e., the educational level of the information) must be individualized to the learning style of the patient.

Our study has several limitations. First, enrollment bias exists, since subjects interested in participating in the study may have had a higher level of education and greater motivation to learn than other patients, and they may also be more symptomatic at the time of enrollment, than the average IBS patient. However, the results would certainly apply to any patient seeking or willing to receive educational information. The findings for this study group are clinically relevant since they result from a symptomatic IBS population likely to utilize health care. A subgroup of non-consulters may have different educational needs. We also think it is important that future efforts be directed toward studies that may increase interest in learning. Another limitation relates to the relevance of the information collected from subjects not recruited from internal medicine or GI clinics (e.g., online subjects). Some respondents may have entered the study without having IBS merely to obtain the compensation offered. We implemented several measures to minimize this possibility. The study was advertised only on IBS-related Web sites, subjects had to meet Rome II criteria for IBS, had to be invited to participate, and those who qualified by the screening questions did not receive the main questionnaire immediately. Instead, they were e-mailed an entry password 24-72 hr later. This made multiple attempts to qualify for participation by the same individuals unlikely. Furthermore, participants had to provide a mailing address to receive the payment, which avoided the possibility for multiple entries coming from the same person. Finally, we acknowledge that the nature of this instrument, to assess individual knowledge and informational needs, is not amenable to standard methods to assess criterion or construct validity. There is no "gold standard," and relative to other patient report instruments, such as a health related quality of life instrument, one cannot do convergent or discriminate validity with known groups because there are no other psychometric measures to correlate with the instrument. Furthermore, there are no known groups to identify since all responses are specific to the individual. However, as noted in the methods, the use of three focus groups with a broad clinical representation to generate items, and then the use of cognitive debriefing with the investigators and a sample of 50 patients, permitted the selection of the most representative sample of items that were then applied in the quantitative analysis.

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Conclusion
Our study is the first to define the conceptions, misconceptions, and educational needs of a large national sample of IBS patients. We found that many patients hold misconceptions about the condition, some of which may negatively impact patients' emotional well-being and increase their health care needs. According to our data, patients are mostly interested in dietary modifications, and learning about coping strategies and what causes IBS. Patients who use the Web have fewer misconceptions about the disease and may differ in their educational needs from non-Web users. The results of the study can be used in both daily clinical practice and as a basis for developing a variety of patient-centered IBS educational interventions.

http://www.medscape.com/viewarticle/562448

I hear this quote frequently, "I know my body better then the doctors do'?

Unlesss you went to med school you don't, you know your symptoms, he know how the body works better and try's to match your symptoms with organic diseases or in the case of IBS functional conditions. That is not to say there are not bad doctors, but there are good and bad ones. Sometimes people's beliefs get in the way of their own diagnoses and treatments as well, because they may not understand things the doctors do about it all. Not likely they will spend a ton of time explaining these complex issues with you.

I see though we all agree on food and stress reduction issues and even those in IBS are majorally complex.

What about the research say on clinical gut directed hypnotherapy. Its not run by Pharm companies? It has helped thousands and more, naturally and safely.

Food research and IBS is not all about parm compaines either. Research is extremely important in medicine as opposed to guessing. Is also important in IBS education and practical help. If say serotonin is a problem in IBS which they believe it really is, then people need to know about serotonin and IBS, there is no super easy way to explain that issue.

Video Corner: Serotonin

Increasingly our understanding of IBS is that it is a heterogeneous disorder � that is, multiple factors contribute to the well defined symptoms of the disorder. One of these suspected underlying dysfunctions involves serotonin, which is a neurotransmitter or messenger to nerves. Most serotonin in the body is in cells that line the gut where it senses what is going on and through receptors signals nerves that stimulate a response. The serotonin must then be reabsorbed (a process called re-uptake) into cells. This process appears to be disrupted in people with IBS.

http://www.aboutibs.org/site/learning-center/video-corner/serotonin

another thing to note is when people understand things they work better for them from drugs to othrs treatments.

You might find this interesting.

Experts: Placebo effect behind many 'natural' cures

http://www.usatoday.com/news/health/2009-11-13-placebo-alternative_N.htm?csp=34

The mind is very powerful on the body and very important in IBS since it is physically connected via the vagus nerve and talks and importantly monitors what is happening at the digestive system all the time.

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My website on IBS is www.ibshealth.com

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How many people here think IBS is a diagnoses of exclusion?

Why is that important and it is very important? Talk about something driving anxiety!

There are also new people and older BB memebers, some new might not know anything at all about IBS, while other might know quite a bit.

"I feel like I have very little power or control over this condition"

This is a pretty common issue and statement from IBSers.

Some of the information being posted when you try to understand it some, and granted it takes time and at first can be overwelming, gives you more power and control over the condition, a better understanding of your condition/s and that in itself makes a big difference to actual symptoms and new treatments to try and the reasons to try them through evidence based medicine.

There is a direct link to emotions and suffering in IBS, fear, antispatory anxiety, anxiety and even frustration, blame and many others. So how can you make that better, so it causes less symptoms?????

from the experts.

"psychophysiological arousal is the core of treating functional gi disorders. There is so much distress, anxiety, antisipatory anxiety, and negative reaction to symptoms, that calming the mind and body often makes a significant difference to symptoms."

These aren't "cures" but tools. The above is not "all in the head" it how the whole person physically works, both at the gut level and brain, both react. There are chemical reasons behind this and even structural cell issues in the gut.

These are as important as foods in IBS and actually trigger some of the same cells in the gut foods can as well as other bodily processes.

IBS and Post Infectious IBS are and have been demonstrated to be brain gut axis disorders for at least five years now and the brain-gut axis is a critical component in IBS.

Why is that and what does it mean to anyone who has IBS and to treatments?

One is "point out that therapeutic options for patients with IBS should focus on treating both the hypersensitive gut and the hypersensitive CNS"

If a GI doctor recommends you see a psychologist and try CBT or HT or therpay for IBS for example, it doesn't mean IBS is not real or "all in your head" that is a major misconception.

ask the experts
Why see a Psychologist when the Diagnosis is IBS? - S. Weinland

Many people experience distress and anxiety when their doctor makes a recommendation that they see a psychologist.
This reaction often comes from the belief that a referral to a psychologist carries with it assumptions about symptoms
being "all in your head" or the result of "mental illness". These are two of the biggest misconceptions about the
practice of psychology in a medical setting, and they can often stand in the way of patients achieving a meaningful
reduction in symptoms. In this column, I hope to dispel some of these misconceptions around psychology in a medical
setting, and in doing so communicate a few of the benefits you might be able to achieve in working with a psychologist
to address your symptoms of IBS.
First things first, your physical problems are real! If your doctor gives you a recommendation to meet with a psychologist it does not mean that the symptoms are "all in your head" or the result of "mental illness."

http://www.med.unc.edu/medicine/fgidc/psychandIBS.pdf

Many people are not getting ALL the help they need and can use because of IBS misconceptions and bad IBS information. I don't mean from Heathers BB, but in life in general.

The fact they don't know the exact causes or cause, doesn't mean they know absolutely nothing about it. They have been researching it for a long time now and have found a lot of things wrong and not working right, especially in the last ten years and ways to improve the condition.

small study and there are important issues here however.

Development of an educational intervention for patients with Irritable Bowel Syndrome (IBS) � a pilot study

"Results
Twelve IBS patients were included. The patients were overall satisfied with the IBS school. In line with this, the gastrointestinal symptoms, HRQOL, and perceived knowledge about IBS improved significantly after the education.

Conclusion
An IBS school seems to be a proper method to meet the patients' need of information about IBS and also to improve the patients' gastrointestinal symptoms, HRQOL, and knowledge about IBS. Further controlled studies are now needed in larger numbers of patients to confirm these preliminary results in order to implement this intervention in clinical practice."

There symptoms improved significantly.

http://www.biomedcentral.com/1471-230X/9/10

The above is not the only study to show improvement in symptoms from education.

also

Before pulling out your prescription pad, experts say, the best way to treat a patient with irritable bowel syndrome (IBS) is to first view him or her as a whole person.

http://www.acpinternist.org/archives/2009/11/ibs.htm

The above sounds holitic to me, more so then some alternative practioners that call IBS "any gi symptom" and infections and diagnose people with issues aren't IBS. Again there are very specific clustering of symptoms to diagnose IBS. From that they rarely find an organic underlying reason, 5% or less and they check back long term to see if the diagnoses stays the same years later.

These can also help you talk to your doctor better and establish a better doctor pateint relationship and better treatments or that your doctor isn't helping and to find a new doctor.

Frygirl, I am trying to explain somethings to you that will quite possibly help you with your IBS or anyone with IBS.

Here is a study that will help kids for example. This isn't technical, the reasons behind it are however.

"In the group that used guided imagery, the children reported that the CDs were easy and enjoyable to use. In that group, 73.3 percent reported that their abdominal pain was reduced by half or more by the end of the treatment course. Only 26.7 percent in the standard medical care only group achieved the same level of improvement. This increased to 58.3 percent when guided imagery treatment was offered later to the standard medical care only group. In both groups combined, these benefits persisted for six months in 62.5 percent of the children.

The study concluded that guided imagery treatment plus medical care was superior to standard medical care alone for the treatment of functional abdominal pain, and that treatment effects were sustained over a long period."

http://www.med.unc.edu/medicine/fgidc/tilburg_in_the_news.htm

73.3 percent reported that their abdominal pain was reduced by half or more. That is a good thing for children is it not? I wish someone knew this and told me this some 39 years ago. If you quite a drug it quites working on your symptoms,if you eat the wrong things the symptoms can be triggered, but it really means something if after your done with a treatment it is sustained for longer periods of time. That means something and is important.

Treatments work better when you understand why they work and what they are working on or why they are even suggested for a person to try. Another example are antideppressants which they may give at a low does for IBS to work at the gut level, not because your doctor thinks your crazy and its all in your head, but because it can help regulate serotonin at the gut level-improve symptoms- and at the same time decrease anxiety in the brain that also triggers the gut. The gut can trigger the brain distress and the brain can trigger the guts distress.

This is actually what they call the "vicious cycle" in IBS.

There is also mild, moderate and severe IBS. IN mild IBS they might not need to know about it as much or do as much for it, as it goes to moderate treatments change and even more so to severe.

What is the actual reason behind eating small meals in IBS? What happens to gut physilogy in IBS when you eat big meals? What triggers the symptoms and why does eating smaller ones actually help symptoms as opposed to big meals?

Not everyone knows the reason for the above issue and knowing it can help your symptoms.

These are practical information aspect for IBSers they can physically use to decrease the symptoms.

Many people suffer more IBS symptoms, because they don't understand IBS to begin with or they can even be trying to treat the wrong problems, because they don't understand the basics in the first place and heance spend tons of money on all kinds of things with little help to the symptoms.

I have seen people complain, not here so much, they know nothing about IBS. IBS is every gi symptom and a "garbage diagnoses" and complain and then do nothing to try to understand what they do already know about it. Go to doctor after doctor to "find the cause", then go alternative routes where they will usally diagnose you with something or another and call it IBS, worry more it may lead to cancer or get worse, call it things it is not, not take the research seriously and have seen people understand more and apply the information to treating the symptoms get better, through multiple treatment options.

I have has severe IBS for 39 years from dysentary from Mexico and helped thousands of IBSers. I understand how bad this condition is and certainly can sympathize GREATLY with the frustrations about it all. Heather's book first year IBS also helps explain a lot of these complex issues. Eating for IBS helps people understand diet and IBS.

Were all here to help and share experinces, but the research and recent advancements in it, is also important and can personally help peoples symptoms.

I think personally there is more to it then just telling each other our symptoms and giving sympathy, although that is important too. But that gets old as well.

again how many people know there is a "brain in the gut" and what that means to IBS.

The Surprising Link Between Mood and Digestion

http://www.ahealthyme.com/article/primer/101186767

I was trying to point out something here that can directly help IBS.

"The stress alarm

Whatever messages may be passing back and forth, they can easily become garbled in times of stress. When the brain senses a threat, real or imagined, it sounds the alarm by flooding the body with adrenaline and another hormone called CRF (short for corticotropin-releasing factor). These hormones trigger the "fight or flight" response -- helpful back in the days when humans had to run from lions, but a potential liability when we lose a job or go through a divorce.

If you suffer from frequent emotional distress -- perhaps because of extreme stress, depression, or anxiety -- the unrelenting flood of adrenaline and CRF will take a toll on your digestive system. For one thing, the hormones can make the cells in the stomach and intestines extra-sensitive to pain. As a result, normal contractions and movements can become excruciating. The new signals can also disrupt the motion of the intestines, causing bouts of constipation or diarrhea."

When you feel pain come on or d come on or symptoms, your brain senses that as a "threat" via the "fight or flight" response. Most people are totally unawre of this reaction, in fact its hard wired to the brain for saftey of the organism in all animals. This is differnt then most people understanding of stress and how it all works.

But everyone can do something physically about the reaction and this physically helps the symptoms, especially d and pain. It is also one reason why some people feel nausea when under an IBS attack.

I wish all this information could be summed up into a small paragraph everyone could understand right away and use the information on their symptoms, but that is not reality, its all too complex. However its well known the more you know about your condition the better you can treat it and understand it and work with your doctor and cause less worry, anxiety and fear and heance less symptoms, from understanding diet, to stressors, both mental and physical, to hormones, inflammation, gut bacteria and all of the factors in IBS being researched from every angle and multiple professions and from some seriously smart, caring and understanding researchers, who are working very hard to find answers and really care about everyone.

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My website on IBS is www.ibshealth.com

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