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Knowledge is Power in Crohn's Disease and Colitis, How To Get It

Crohn's disease support

It is often said that knowledge is power, and that is true when it comes to Crohn’s disease and colitis, the two main types of inflammatory bowel disease. If you suffer from either of these diseases, information from a new study and some helpful guidance from a Crohn’s disease forum expert can help provide the support you need.

What do patients know about Crohn’s disease?
This question was the basis of studies conducted in 1999 as well as recently in the United Kingdom, Canada, Sri Lanka, and Iran. The Crohn’s and Colitis Knowledge Score (CCKNOW) was the multiple-choice questionnaire tool used in the studies.

The goal of the research was to determine how much patients knew about these forms of inflammatory bowel disease (IBD) and the clinical implications. Here’s a look at what the reviewers discovered.

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  • They found that the average score in Leicestershire (UK) in 1999 was 10 while two recent scores in two other areas of the UK were 9 and 7, suggesting a decline in patient knowledge about the diseases
  • In particular, patients knew little about pregnancy and fertility as they related to Crohn’s disease and colitis
  • Average scores in Canada, Iran, and Sri Lanka were 13, 4, and 6.86, respectively
  • Better scores (more knowledge) were associated with individuals who used adaptive coping strategies
  • Anxiety levels tended to be higher among patients who were more knowledgeable about the diseases

The authors concluded that “Evidence suggests that improving knowledge may empower patients to use more adaptive coping strategies but may not be effective in reducing anxiety.”

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How to reduce anxiety and gain knowledge
Whether you have been newly diagnosed with Crohn’s disease or colitis or have had these diseases for a while, you may find yourself experiencing lots of difficult feelings. The good news is that you are not alone and that there are places you can turn to for help, such as the Crohn’s Forum.

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According to the Crohn’s Forum administrator, Jennifer Hope, “Newly diagnosed members often come to the forum scared and confused because they don’t know anything about Crohn’s.”

Even though patients have talked to a doctor and have been given a diagnosis, often they are so surprised or confused by the news, they don’t know what questions to ask or what to do. Therefore, they go home and worry about how they are going to live their lives with this disease while also feeling alone and depressed.

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One important source of knowledge and support can be an online forum where individuals can share their questions and experiences and discuss the latest news regarding research, medications and other treatments, and different ways to cope with the symptoms of the disease. This sharing process can be invaluable to members of the forum.

Hope pointed out in an email communication that the forum has members from around the world and that “we hear about new treatments and new clinical trials as they become available and often before it’s suggested by our doctor.” This information can empower forum members to do their own research and “if it’s something members would be interested in trying then they can bring it up with their doctor.”

The forum also is a place where members not only support each other but also “provide options when it seems like all hope is lost,” noted Hope. “Being informed is the most important thing when it comes to taking control over your own health.” The site also has numerous support groups on different aspects of IBD.

Gaining knowledge about Crohn’s disease and colitis may not provide a cure for patients, but it can provide a sense of empowerment and better ways to live with the disease. Sharing information and getting support from others who have the same inflammatory bowel disease also can be invaluable for individuals with Crohn’s disease.

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Email communication from Jennifer Hope of Crohn’s Forum
Wardle RA, Mayberry JF. Patient knowledge in inflammatory bowel disease: the Crohn’s and Colitis Knowledge Score. European Journal of Gastroenterology & Hepatology 2014 Jan; 26(1): 1-5

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