A diagnosis of IBD may raise many questions for you and your family. Your doctor can answer many questions, but some may come up while you are not in a doctor’s office. The Internet plays a large role in our lives, so it is natural to look for answers on the Internet. Learn the ways the internet can be both helpful and harmful as you learn more about IBD.
Why Using the Internet to Learn About IBD Can Be Helpful
- Some websites offer patient-centered videos that describe what IBD is like for them. IBD doctors review the videos from the websites below so that the information is both “real” and “accurate.”
- Many foundation websites list ways you can become involved in the IBD community (eg, charity events, advocacy groups).
Why Using the Internet Can Be Harmful
- Not all information is accurate – While there are some very well-intentioned people writing about IBD on the internet, many do not have professional training to treat IBD. Some may be writing from personal experience. Others may “find it interesting.” (This is true for nearly everything written about on the internet.) Be careful of advice from people who are not experienced working with people with IBD.
- Not all information applies to everyone – There are many treatments that can be used for IBD, but there is no perfect treatment that works for everyone. Be careful reading stories that claim one particular treatment will work for everyone. On the other hand, be careful when reading stories about complications that say everyone will have the same problem that they did
- There may be scams – Be careful when websites ask for personal information. The internet has many scams to get personal information (eg, social security numbers, credit card numbers).
Studies show that a Google search for IBD may not find the most reliable information. Rather, those searches often find the most visited (Wikipedia) or less patient-friendly sites (such as a very specific scientific publication).
What Are Reliable Websites to Learn About IBD?
- Pediatric IBD Foundation
- Crohn's and Colitis Foundation of America (CCFA)
- GI Kids – North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN) site for parents and children
- Crohn's and Colitis Foundation of Canada (CCFC)
This document is intended to provide health related information so that you may be better informed. It is not a substitute for a doctor's medical advice and should not be relied upon for treatment for specific medical conditions.