Living with a chronic disease like Crohn’s disease or ulcerative colitis can be extremely challenging. Riding the IBD roller coaster alone makes it even tougher. It’s always good to have a support network around you—people you can lean on for advice or vent to about your frustrations. Sometimes, it’s somewhat medicinal to talk with people who get it – fellow patients who have lived through exactly what you are going through.
How do we find these support networks? With the rise of online chat groups and forums, it can be a frustrating task to find someone who’s right for you to talk to. But these support networks still exist! Below is a list of some of the best places to find a local support group or annual retreats for patients like you:
CCFA – The Crohn’s & Colitis Foundation of America is still the leader for support groups all over the country. You can visit their website to find a local support group near you. If there isn’t one close, there are still many online support groups that can help patients and their families out.
UOAA – The United Ostomy Association of America is a great resource for those with Crohn’s disease, ulcerative colitis, and ostomies. Many ostomates these days are IBD patients and can easily help one another. This is another great resource if you are thinking about possibly getting an ostomy or already have one as well. Visit UOAA’s website for more information on where they have support groups.
Girls with Guts – Each year Girls with Guts gets women together for a retreat that helps all the patients who attend, and more. These are programs that are designed by patients, for patients! You can visit the Girl with Guts website for more information on the retreats they offer.
Crohn’s Journey Foundation – Another great organization is the Crohn’s Journey Foundation. They hold yearly retreats for all IBD patients which cover a healthy lifestyle and how to deal with Crohn’s disease and ulcerative colitis.
Meetup – Another great place to find support groups is Meetup.com. This site organizes all kinds of groups but you can find support groups that directly help those with Crohn’s disease and ulcerative colitis.
If the above options don’t work, the amount of online support you can get is tremendous and many times immediate. There is always a fellow IBDer some where in the world that is awake and there to talk. Whether you need help at two in the afternoon or two in the morning, many times you can get a response or talk to other patients within minutes. Log on to the social media outlet of your choice and search Crohn’s disease or ulcerative colitis. Don’t forget to use hashtags (#) if you are using Twitter or Instagram to talk to others with IBD. When you type IBD, Crohn’s or ulcerative colitis into Facebook, you’ll find numerous groups to connect with.
As always, please use good judgment on who you talk to and what advice you consider. This is the internet and anyone can write whatever they think works. Have you been told that tree bark can cure IBD? Would you believe it?
Still, these online support areas are priceless and can be a great place to vent or meet other patients that are battling Crohn’s disease and ulcerative colitis just like you.
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Brian Greenberg was diagnosed with Crohn’s disease at age 11. His freshman year of college, he began a roller coaster ride of flares, hospitals stays, major surgeries, and more, with brief breaks of good health. After having an ostomy surgery 6 years ago, making it permanent 3 years ago, he is happy with his quality of life and enjoys helping others with their health journeys. When his health cooperates, he enjoys triathlons, hiking, climbing, skiing, and more.