Introduction
Thanks to the Internet, we now have 24-hour access to medical information from the comfort of our homes.
This has made it easier and faster to find answers to health-related questions,
which may be especially useful if you have a chronic illness like inflammatory bowel disease (IBD).
But, keep in mind that a wise consumer of medical information must have a discerning eye.
Of the thousands of Web sites providing health-related information, many are misleading or inaccurate.
This newsletter will debunk some of the most common myths you may have heard about IBD.
It will also walk you through how to evaluate medical information you find online and provide information about credible online resources.
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IBD Myths
FICTION: Inflammatory bowel disease (IBD) and irritable bowel syndrome (IBS) are the same thing.
FACTS: It’s easy to confuse IBD and IBS, since they occur in the same part of the body (your gastrointestinal system) and often share similar symptoms,
like pain and diarrhea. But there are significant differences. For example, a hallmark of IBD is chronic inflammation of the digestive tract that sometimes flares,
whereas IBS is a functional disorder of the intestines that does not involve active inflammation. Keep in mind that, 30% to 40% of the time, a person may have both IBD and IBS,
since once the bowel is inflamed for any reason, an irritable bowel may develop due to heightened sensitivity.
FICTION: IBD is caused by stress.
FACTS: No one knows exactly what causes IBD. There are a number of hypotheses (for example, immune system malfunction, environmental factors, genetics,
infection), but stress is not one of them. Studies have shown that stress does not cause the inflammation associated with IBD, but it can exacerbate the symptoms of an inflamed
digestive tract and increase IBD severity.
For more information, refer to the “What Causes Inflammatory Bowel Disease” newsletter.
FICTION: IBD is all in your head.
FACTS: IBD is not imaginary (diagnosis depends on the presence of inflammation in your gastrointestinal tract), nor is it caused by psychological problems.
On the other hand, IBD can lead to anxiety or depression. These issues are often associated with any chronic illness and are not the nature of IBD itself.
FICTION: There’s a cure for IBD.
FACTS: Although some Web sites may tout a “miracle cure” for IBD, there is currently no scientifically proven cure, with the exception of colectomy
(removal of the colon) for patients with ulcerative colitis. However, medications can help you control inflammation, manage your symptoms, and prevent damage caused by inflammation.
You might be tempted to try herbal or “natural” remedies, but just because herbs are natural does not mean they are necessarily safe. Keep in mind that both herbs and dietary supplements
are unregulated, so it is often difficult to know what they actually contain or if they provide any of the benefits they claim. Always be sure to let your doctor know if you decide
to try an alternative approach.
For more information, refer to the “Mind Your Meds” newsletter.
FICTION: I used to have 15 bowel movements per day, but now I have only 11, so I am in remission.
FACTS: Many factors are used to determine whether or not you are in remission. These include your symptoms, the appearance of your intestinal lining,
and blood tests. And remember that you are not in remission if you are still on steroids. You and your doctor will decide together if you are truly in remission.
FICTION: You can stop taking IBD medication when in remission.
FACTS: Studies show that staying on your medication, even when you are feeling well, decreases your risk of relapse, disease progression,
and possibly colorectal cancer (if you have ulcerative colitis). The single best way to stay in remission is to stay on your medication.
For more information, refer to the “Mind Your Meds” newsletter.
FICTION: People with IBD eventually require surgery.
FACTS: Not all people with IBD need surgery, but it is a reality for many.
You are more likely to need surgery if you have Crohn’s disease, than if you have ulcerative colitis.
For more information, refer to the “Inflammatory Bowel Disease and Colorectal Surgery” newsletter.
FICTION: People with IBD eventually get colon cancer.
FACTS: Even though IBD can increase your risk, most people with UC or CD never get colon cancer.
The best prevention strategies are to schedule periodic colonoscopies with biopsies and to take your medication as prescribed.
For more information, refer to the “IBD and Cancer” newsletter.
FICTION: I can’t take my IBD medication when I’m pregnant.
FACTS: Most of the medications used to treat IBD are safe to take when you are pregnant or breast feeding, with the exception of some antibiotics, thalidomide, and methotrexate.
Remember that a healthy mother is important for a healthy baby. It is almost always better to take medication and be well during pregnancy, than to stop taking medication and be sick.
The best strategy is to discuss your options with your physician before you get pregnant.
FICTION: If you have IBD, smoking cigarettes can help.
FACTS: There is a connection between IBD and nicotine, however smoking has opposite effects on Crohn’s disease and ulcerative colitis.
Smoking increases you risk of developing Crohn’s disease. Smoking can also increase your flare-ups, your need for surgery, and your need for immunosuppressive medication.
On the other hand, some studies indicate that smoking may prevent the onset of ulcerative colitis. Even so, the risks of smoking – for example, cancer, emphysema, and heart disease --
far outweigh any possible benefit.
FICTION: The [fill in the blank] diet will cure my IBD.
FACTS: No specific diet has been found to treat or cure IBD in a significant number of patients. That said, when you are experiencing active inflammation,
you might find it helpful to eat a bland diet consisting of mildly seasoned foods that are low in fat and fiber. And if you have lactose intolerance or sensitivity,
you will want to avoid dairy products and other sources of lactose. You can also try taking lactase enzyme tablets before a meal or adding lactase enzyme drops to milk.
For more information, refer to the “IBD and Your Diet” newsletter.
FICTION: Any other symptoms I develop, even those not affecting my gastrointestinal system, are due to my IBD.
FACTS: While it’s true that IBD can cause symptoms like arthritis, skin conditions, eye inflammation, and bone loss, it’s important not to jump to conclusions.
Be sure to always let you doctor know if you are experiencing such symptoms, so that he or she can help you confirm their underlying cause.
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ABCs of Web Site Evaluation
Because the Web is largely unregulated, anyone with a computer and Internet access can publish anything online.
A number of research studies evaluating the quality of online health-related information have found that its accuracy varies widely.
So how can you stay informed, yet identify the difference between reliable and unreliable sources of information?
The ABCs of Web site evaluation are a good place to start. Try asking yourself if the information you find seems:
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Accurate?
To determine if health-related information you find online is accurate, ask yourself the following questions:
- Is the information supported by facts?
- Is the information consistent with other sources?
- Is the information based on scientific information (e.g., published research)?
- Is the information current and recent enough to be useful?
- Is the information likely to change?
Remember that many Web pages are not reviewed and that there are no Internet standards to ensure accuracy.
Watch for red flags like poor grammar, spelling errors, and absence of a publication date.
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Biased?
Even if the health-related information you find seems accurate, important details or information may be omitted.
Ask yourself the following questions to help you identify bias:
- Does the author reveal a hidden agenda or other biases?
- Is the author using the Web site as a virtual “soapbox”?
- Is the author’s purpose to educate, persuade, or sell?
When you are on the lookout for bias, red flags may include sensationalist claims (for example, a “miracle” or “secret” cure),
emotional hooks (e.g., large fonts, use of all upper case letters, and a lot of exclamation marks), and the presentation of one-sided information.
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Credible?
Because anyone can publish a Web page, it is important to evaluate the author’s expertise. Try asking yourself these questions:
- Is he/she an expert on the subject?
- What was his/her training?
- What are his/her credentials and affiliations?
It’s a red flag if you cannot find information about the author and his/her credentials.
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Credible Sources of Online Information
According to a recent study,1 few Web sites provide high-quality information about IBD treatment options. The authors of the study explain that,
depending on the search engine you use (for example, Google, Yahoo, or AOL), Web sites are listed in order according to a number of proprietary criteria,
none of which include an independent assessment of quality. Neither higher ranking by a search engine or nonprofit status are indicative of higher quality information.
According to the study, best bets for online information about inflammatory bowel disease include the following:
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Conclusion
The Web can be a great place to learn about IBD or other specific diseases.
Just don’t fall for the “if it’s on the Internet, it must be true” trap.
Smart patients know how to find Web sites that are accurate, unbiased, and credible;
to ignore information that seems questionable, and to always consult with their physician
before acting on anything they read, online or elsewhere.
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1 van der Marel S, Duijvestein M, Hardwick JC, van den Brink GR, Veenendaal R, Hommes DW, Fidder HH.
Quality of Web-based Information on Inflammatory Bowel Disease. Inflamm Bowel Dis. 2009 Dec;15(12):1891-1896.