I was just diagnosed with Crohn's disease. Where can I learn more about the disease and how to manage day-to-day living?

It's common to have many questions after receiving a diagnosis of Crohn's disease (CD). Fortunately, there are a variety of organizations and support groups that provide information and encouragement that can help you learn to manage your CD and live life to its fullest.

Support groups for Crohn's disease

Crohn's disease organizations and support groups help by bringing together a community of people who have dealt with the challenges you are facing and understand what you are going through.

They provide a place you can go to find in-depth information about the disease, answers to frequently asked questions, and research about the latest medical treatments and alternative therapies. Members share how they manage the disease, cope with symptoms, and provide insights on how to travel, go to work or school, play sports and fully engage in life.

Perhaps the largest and most well-known Crohn's disease organization in the United States is the Crohn's & Colitis Foundation. The foundation staffs and supports more than 200 support groups across the country. To find your local chapter, go to www.crohnscolitisfoundation.org/local-resources or call 888-MY-GUT-PAIN (888-694-8872).

You can also participate online via the Crohn's & Colitis Community at www.ccfacommunity.org. This online community provides access to a variety of discussion forums, personal stories and a panel of experts who can answer questions on many topics related to Crohn's disease.

Other options and support groups to consider include:

  • My Crohn's and Colitis Team is a social networking site designed to bring people living with Crohn's disease together. Join them at www.mycrohnsandcolitisteam.com.
  • Crohn's Forum is another online support group and forum. Check out the forum at www.crohnsforum.com.
  • Power of Two is an app by the Crohn's & Colitis Foundation. It provides support by connecting patients and caregivers with a peer supporter who has had similar experiences. Learn more at www.crohnscolitisfoundation.org/power-two.
  • Camp Oasis is a residential summer camp for children and teenagers with Crohn's disease or ulcerative colitis. To learn more, visit the Crohn's & Colitis Foundation at www.crohnscolitisfoundation.org/justlikeme/join-the-community.
  • IBD Strong is another website for older teens and young adults with inflammatory bowel diseases. Visit the site at https://ibdstrong.org/programming.
  • Girls with Guts is a nonprofit organization supporting and empowering women with IBD and ostomies. Learn more at https://girlswithguts.org.

Health care professionals

Don't forget that your health care team is there to help you. In addition to treating your physical symptoms, they have resources to help with emotional support and expertise in helping you manage the challenges you may be facing.

Emotional support

If you are experiencing emotional symptoms such as depression or anxiety, it's important to talk to your health care team. They may be able to offer support or refer you to a psychologist or psychiatrist who is familiar with the difficulties of living with Crohn's disease.

It's important to remember that most people with IBD go to work or school, raise families, travel, play sports, and live full lives. With the right medical treatment and support, you can learn to manage your Crohn's disease.

With

Sahil Khanna, M.B.B.S., M.S.

July 01, 2023