How to connect with others in the IBD community

How to connect with others in the IBD community

Inflammatory bowel disease, commonly referred to as IBD, is characterized by a group of intestinal disorders that cause inflammation of the digestive tract. The two most common kinds of IBD are ulcerative colitis and Crohn’s disease. Every person’s experience with IBD is different, but some of the main symptoms include diarrhea, bleeding ulcers, stomach pain, cramping, and weight loss. 

People who live with IBD can find comfort in the wide array of resources available, from support groups and advocacy group chapters to local events, online message boards, and helplines.

Reddit subgroups

Reddit, a website that highlights message board and discussion style content, has a large community of people who live with IBD. 

  • r/UlcerativeColitis focuses mostly on ulcerative colitis and has 8,200 active members who post about all things UC, including their symptoms, live streams of lectures, mental health, and sometimes relevant memes. 
  • r/CrohnsDisease is a community of nearly 28,000 active members that provides words of encouragement, comfort, and support for people with all forms of IBD, as well as their friends and family. 
  • r/IBD is a community of 7,500 active members who discuss things like medications, personal experiences, and content related to all facets of IBD. 

In any of these groups, it’s not uncommon to see posts about people looking to talk about their personal experiences and learn more about how others are living with IBD, which reinforces the tight-knit nature of this community online. 

Facebook groups and advocacy pages

Facebook is one of the best ways to connect with other people who live with IBD. Many of the advocacy groups and foundations have regularly updated Facebook pages where they share content, news, and information about events. Apart from that, there are a handful of groups that are dedicated to Chron’s disease, ulcerative colitis, and IBD at large:

  • With nearly 110,000 people who like and follow the page, Crohn's and Colitis Awareness is a leader in young adult IBD advocacy and support.
  • The Crohn's & Colitis Foundation page has about 190,000 followers. They aim to provide a supportive space to connect on Facebook.
  • IBD Support Group is a judgment-free forum of about 2,600 members who discuss IBD, treatments, and the impact of the condition on their lives.
  • Ulcerative Colitis and Crohn's Disease was created as a support group for anyone with ulcerative colitis or Crohn's disease. The group, strong at 22,000 members, hopes that members can gain greater knowledge of their disease, and provide support and friendships.

Support groups, local events, and more

If you want to connect with locals who might also be experiencing IBD, then it might be a great idea to look for support groups and events. 

The Crohn’s & Colitis Foundation has a variety of local resources and events across the United States. There is a way for everyone to get involved, including chapters and support groups (as well as online communities) to educational programs and special events.

Crohn’s & Colitis UK offers a robust network of confidential support services, from helplines to emotional support appointments and apps that can help you manage your Crohn’s disease or ulcerative colitis day-to-day.

InflammatoryBowelDisease.net a platform for IBD patients and caregivers to learn, educate, and connect with peers and healthcare professionals. Their community has a wealth of information about IBD: Q&A, stories, and forums.