Ulcerative colitis (UC) is an autoimmune disorder of the gastrointestinal system characterized by chronic inflammation of the colon lining. For many people with UC, it poses a life-long challenge. UC affects individuals to varying degrees of severity. The goal for everyone with UC is to control any flare of the disease and maintain control long-term.
In order to effectively manage UC, a multidisciplinary approach is imperative, including not only care from health care professionals (gastroenterologists, psychologists, nutritionists, dieticians), but also working with a support network or support groups as a means for finding ways to cope and live with UC. Support groups are great avenues for you to talk to others who share your struggles with UC. There are many helpful support groups out there. Perhaps you want to discuss treatment options or medication side effects. Some of you may be struggling with balancing self-care with caring for others (children, a parent, or sick spouse). Many groups exist, and they can be easier to find than you think.
Many websites that provide information on UC have links to support groups in your area. One of the leading foundations with information on support groups is The Crohn’s and Colitis Foundation of America (CCFA).
Various hospitals and academic medical centers will have information for support groups on their webpages. You can search academic medical centers in your area, or even other major, well-known centers out of state, as some might have online support groups that you can join. Typically, the information is within the Digestive Disease Center or Gastroenterology Department links in a center’s webpage.
A quick Google search will lead you through numerous online discussions. I would practice caution if you partake in these discussions, as with any online activity with others.
There are numerous UC support groups on Facebook. This is a great way to share information with others who can understand your disease struggles. A quick search for “UC support group” will lead you to those pages. An example is “I Have UC – Ulcerative Colitis Support Group.”
Twitter is a good way to meet others with UC, as well. By engaging in twitter chats pertaining to UC held by healthcare professionals or UC organizations, you can meet others in the conversation with UC, follow them, continue discussion on various issues or concerns you have, and develop a support network.
Again, please exercise caution with the information you gain through social media, and which individuals you engage in conversation.
Healthcare professionals and social workers
Your doctor or any one of your healthcare providers should have resources for support groups at the hospital with which they are affiliated. Some community hospitals may not have specific groups for UC, but as mentioned above, your provider should have information for groups affiliated with a nearby academic center.
Family, friends and community
Some of the best support we can get is from family and friends. Word of mouth and meeting friends of friends may put you in contact with others with UC. Community bulletins will have information on various support groups and meeting times. An online site that helps bring people with similar interests or particular needs together is Meetup.com. You can find specific support groups for UC in your area through this site.
Start your own
If you are not comfortable with some of the options mentioned above, or you have not found a group that is a good fit, consider starting your own group. Meetup.com makes it easy to start your own group and automatically gives you some public visibility. It takes two people (you and one other) to be a group, and through social media, announcements in church, advertisement in the community bulletin, etc. a larger group could form quickly.
Support groups can have a positive influence on the management of your UC by helping with coping skills and providing positive support and energy from others who understand your struggles. Finding the right support group could take some trial and error, but once you find the right fit, you will quickly reap the benefits of getting the help and support you need.
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Constance Pietrzak, M.S., M.D., is a gastroenterologist with Advocate Medical Group in Chicago. Through her work with HealthCentral, she strives to expand knowledge on gastroesophageal reflux disease (GERD) and inflammatory bowel disease (IBD). Follow Constance on Facebook and Twitter for timely updates on IBD, and more.