IBD: Finding Accurate Information on the Internet
Have you ever felt like the "blind leading the blind" regarding dealing with your Inflammatory Bowel Disease? If so, you are not alone. Many patients lament the huge learning curve that happens just after being diagnosed with a chronic condition like IBD.
If you are anything like me then the first instinct you might have had is to research everything you can find on the internet about your new diagnosis. While the internet can be a great resource you have to choose those sources wisely. There is also an equal if not greater amount of misinformation out there.
So, how do you decide where to garner your information?
1. Stick with professional organizations. Well know sources of accurate information include The Mayo Clinic, The US Department of Health and Human Services, The American Gastroenterological Association (AGA) and The Crohn's and Colitis Foundation of America (CCFA) among others.
The AGA has a Patient Center with basic information as well as resources for current research. CCFA has a hotline number, 888.MY.GUT.PAIN, where you can speak with someone and request information. While this is not an exhaustive list of good resources it can be a wonderful place to start. Check out each of these organizations link lists for extra information.
2. Watch out for fraud. Be very careful of those requiring payment for information or any sites intending to sell you products that are "too good to be true". It would be wonderful if there were a simple fix or a quick cure but that is usually not the case.
3. Scare tactics are not helpful. Reading site after site of disturbing misinformation can leave you feeling overwhelmed and discouraged. If this has been the case for you then you may need to limit the amount of time you spend looking up your condition on the internet.
4. Look for sites that support you. Sites like Health Central that allow you access to a community of others dealing with the same condition can be essential. The information and tools to manage your IBD can make living with the disease less scary and knowing you are not alone can be a wonderful feeling.
Tune in next time when I review the new book by Dr. Sunanda Kane, IBD Self-Management: The AGA Guide to Crohn's Disease and Ulcerative Colitis.