What Irritable Bowel Syndrome Patients Need -- But Don't Get -- From Doctors

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Most common IBS patient misconceptions have been found to stem directly from misinformation provided by the patients’ own doctors.

The first studies ever to assess Irritable Bowel Syndrome patients’ knowledge regarding their disorder (conducted by researchers at Dartmouth-Hitchcock Medical Center in New Hampshire and recently presented at the 70th Annual Scientific Meeting of the American College of Gastroenterology) have found significant patient misconceptions about the causes of their condition and unawareness of how to manage symptoms. However, IBS patient feedback from Help For IBS (http://www.HelpForIBS.com/), the largest IBS community on the internet (with over 55,000 subscribers and 4.5 million visits annually), has found that many of the most common IBS patient misconceptions, as well as the lack of knowledge about symptom-management, stem directly from misinformation provided by these patients’ own doctors.

“Our findings highlight the top seven areas of concern for Irritable Bowel Syndrome patients -- areas where their physicians provided either no information, or misinformation that in many cases actually worsened these patients’ IBS symptoms,” says Help For IBS.com founder and CEO Heather Van Vorous.

1. Diet. Though it is well-established that fats and insoluble fiber foods (particularly wheat bran) can exacerbate Irritable Bowel Syndrome symptoms, while soluble fiber foods and supplements can help, IBS patients continue to be told that “diet doesn’t matter.” They are also often advised to “eat more fiber” without being told of the distinction between insoluble and soluble fiber foods. Lack of proper dietary information is by far the number one frustration for most IBS patients, and they report anger and disillusionment with their doctors for not providing accurate diet guidelines and additional dietary resources such as books or websites.

2. Hormonal issues. Three-quarters of IBS sufferers are female, and hormones have been shown to play a role in both the exacerbation and mitigation of IBS symptoms. IBS patients report a real need for understanding how pregnancy, hormonal birth control methods, and menopause can affect their IBS.

3. Alternative medicine. Over 50% of IBS patients turn to alternative medicine for help, and studies have shown successful results from gut-directed hypnotherapy, acupuncture, and yoga. IBS patients report a great deal of curiosity about trying alternative medicine for their symptoms and they would like to discuss these options with their doctors. However, they also note that their physicians rarely address these topics unless prompted and even then are rarely able to provide detailed information.

4. Medications. IBS patients repeatedly report being given inappropriate or ineffective medications for their IBS symptoms. Men and women with diarrhea-predominant IBS have been given prescriptions for Zelnorm, which is strictly for women with constipation-IBS and contraindicated for diarrhea. Many patients have questions about anti-depressants and anti-anxiety medications, but find that their doctors are unaware of how best to use these drugs for IBS. Patients commonly report that their doctors don’t key medications to their specific IBS symptoms, and that their doctors seem surprised by the frequency of side effects or lack of good results.

5. Herbal medicine. More than half of all IBS patients try herbal medicines such as enteric coated peppermint oil capsules, fennel, or probiotics -- all of which have clinical studies demonstrating their effectiveness for IBS symptoms. They would like their doctors to inform them of the best ways to use herbal medicines and if there are any safety concerns, but they commonly report that their doctors simply don’t know anything about this subject.

6. Understanding their diagnosis. IBS patients see an average of three physicians over three years before receiving a diagnosis, but they are rarely given a clear explanation of what, exactly, IBS is. Patients frequently report uncertainty about the test results (or lack thereof) used to obtain their diagnosis, and they are looking for assurance that their diagnosis is accurate. They want to understand exactly what causes their symptoms, and they need to hear that IBS will not lead to other illnesses such as colon cancer. Many patients express frustration with the lack of basic IBS anatomical information provided by their physicians, including the frequent omission of any discussion of the brain-gut disorder that underlies IBS symptoms. Patients feel at a loss to treat their IBS when they’re not even told what IBS is.

7. IBS is not taken seriously. IBS patients repeatedly report having their complaints diminished or outright dismissed by their own physicians. The most common refrain they hear is that IBS is “all in their heads”, IBS is “not a serious problem”, and that there is nothing that can be done for IBS so they should just “learn to live with it.” Every one of these statements is false, and this type of denigration has catastrophic results.

The severity of IBS can be measured by its direct costs (use of healthcare-related services such as physician visits and diagnostic tests), which have been estimated to range from $1.5 to $10 billion annually in America. The indirect costs of IBS (loss of hourly wages resulting from missed work or diminished work productivity resulting from absences for physician visits or incapacitating symptoms) are estimated to be much greater -- approaching $20 billion annually.

The costs of IBS can be measured not just in currency but in lives. In 2004 the American Gastroenterological Association reported that 38% of IBS patients in one study had contemplated suicide because of their symptoms. Hopelessness due to symptom severity, interference with life, and inadequacy of treatment were highlighted as crucial issues for all IBS patients. It’s tragically clear that a significant number of IBS patients cannot “just live with it.”

In summary, while the recent AGA presentation rightly concluded the need for effective IBS patient educational programs, Help For IBS patient feedback indicates that physician education clearly needs to come first. The AGA noted that physicians now have more scientific knowledge and an improved range of treatment options that can provide relief for IBS sufferers. However, as IBS patients themselves report, too many physicians continue to be completely unaware of this fact, and it is their patients who pay the price.

About Irritable Bowel Syndrome: IBS is a functional gastrointestinal (GI) disorder characterized by recurring symptoms of abdominal pain associated with altered bowel habits (constipation, diarrhea, or both). More than 20% of Americans suffer from IBS, which affects more women (75%) than men. The cause of IBS is unknown, and there is no cure, but there are many ways to effectively manage specific symptoms.

About Help for IBS.com: Help for IBS is the IBS patient support site of Heather’s Tummy Care. The site offers extensive resources for Irritable Bowel Syndrome patients online at http://www.HelpForIBS.com, and free educational materials, including twice monthly newsletters and downloadable IBS dietary cheat sheets. The mission of Heather’s Tummy Care is to offer education, support, and tangible help that allows people with Irritable Bowel Syndrome to successfully manage their symptoms through lifestyle modifications. Help for IBS and Heather’s Tummy Care were founded by IBS author and patient Heather Van Vorous.

Contact:

Heather Van Vorous, CEO

HelpForIBS.com

206-264-8069

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