You and your family may have a lot of questions when you’re diagnosed with IBD. Your GI doctor can answer your questions, but some questions may come up when you’re not in your doctor’s office. As the Internet plays a large role in our lives, it is natural and may be helpful to look for answers there.
Some websites offer patient-centered videos where patients describe their personal journey with IBD. Videos from the websites we have listed below have been reviewed by IBD doctors. The information presented in those sites is both accurate and realistic.
Many foundation websites list ways you can become involved through charity events or advocacy groups.
Not all information on the internet is accurate
While there are some very well-meaning people writing about IBD on the Internet, many are not trained to treat IBD. Some may be writing about their personal experience. Others may offer advice that does not follow science. Don’t follow advice from the Internet without checking with your GI doctor first.
Not all information on the internet 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 about reading stories that claim one particular treatment will work for everyone. Also be careful about reading stories about complications that claim that everyone will have the same problem.
There are always scams
Be careful when websites ask for personal information. The Internet has many scams to get your personal information (like your social security number and credit card numbers). A Google® search for IBD may not find the most reliable information but it will find the websites that are visited the most (like Wikipedia®) or those that are less patient-friendly (such as very specific scientific publications).
Examples of reliable websites to learn about IBD
- Improve Care Now®
- Improve Care Now® Patient Resource page
- Crohn’s and Colitis Foundation®
- Crohn’s and Colitis Foundation of Canada®
- GI Kids®
- Pediatric IBD Foundation®
Rev. 8/2018. MassGeneral Hospital for Children and Massachusetts General Hospital do not endorse any of the brands listed on this handout. This handout is intended to provide health information so that you can be better informed. It is not a substitute for medical advice and should not be used to treatment of any medical conditions.