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Question 1 of 3: What's your biggest struggle with IBD?

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Question 2 of 3: How prepared do you feel to take care of your health on your own?

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Question 3 of 3: Where do you turn to for emotional support?

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Finding Information Online

If you’ve ever had a question, chances are you’ve probably used the internet to help you find your answer. The internet can be a really helpful and easy-to-use tool for exploring information or finding out more on just about anything; but readers beware. While there is a lot of good information to be found on the internet, there is also some information that can be misleading or based more on opinion than fact. This is especially important when it comes to finding out more about your disease and other health related information. What are you looking for? Is it personal stories from other patients? Are you trying to identify a symptom, or information about a medication? Some information will always be based on opinion, or be biased in some way. However, there are things you should keep in mind so that you are aware of what is trustworthy, and what is not. Here are some questions you can ask yourself to help you navigate the web, and find resources that you can trust:

  • Have you considered asking your doctor or healthcare team? They can be a very helpful resource to answer your questions. If you don’t feel comfortable talking to your doctor, perhaps your parent can help you bring up your questions. Having open communication with your doctor can go a long way!
  • Who is in charge of the website? It should be easy to find who or what is responsible for the information on a website. If it isn’t easy to find, then the information being provided may not be trustworthy.
  • Where is the information coming from? When you do a report or paper for a school project, your teachers will always require you to include the source of the information; in other words, you would need to identify where the information came from. The same applies with information on the internet. Did the information come from a doctor, a Twitter post, or another source?
  • Is the information complete? Your disease will not be exactly the same as it is for someone else. There may be information specific to you that is not considered on the internet sources you found. On the other hand, there might be too much information that you don’t necessarily relate to or that sounds scary. Just keep calm and talk to your doctor and/ or parent about what you’ve read.
  • Is any of my personal information being collected? If so, it is important that you talk to your parent first to see if you should explore further. You’ll always want to know why your information would be collected, and for what reason.
  • We are still working together for a cure. You might find claims of a cure for Crohn’s disease or ulcerative colitis, but know that there are many research studies underway that are still trying to find a cure.

The Crohn’s & Colitis Foundation is leading the effort to reach this goal, and when we do find a cure, we know you will find it on www.crohnscolitisfoundation.org.

Stories from other people with IBD

You might find it helpful to hear how other teens overcame challenges with their disease. Or perhaps you just want to know that there is a patient community out there, just like you. Sometimes we gain strength from other stories and experiences, and that is OK. Don’t forget that every IBD patient has their own experience. Medications, diet, and symptoms can all vary greatly from one person to another, so it is important that you and your healthcare team work together that make decisions that are best for your health. Keep that in mind as you view images on social, read blogs, or engage in other online connections. If you would like to engage with a community, consider something that:

  • Let’s you know that the opinions and stories are not to be considered as medical advice
  • Offers a way to provide trustworthy information, (such as links to helpful information)
  • Offers comments from medical experts
  • Is associated with another trustworthy source
  • Is recommended by your doctor or healthcare team

If you’d like to read other patient stories, share your own, or ask questions in an online form, you can check out the Crohn’s & Colitis Foundation Community Website.

When in doubt

It is very important to talk to your doctor and health care team first about any questions you have. They can help navigate you to the right resources or they may have the answers to some of your questions. You can also contact the Crohn’s & Colitis Foundation’s IBD Help Center for more information.

For more information and tips for how to find information on the internet, you can visit the National Institute of Health website.

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