Wednesday, April 13, 2011

Finding the Right 'Them': Internet Support Groups for IBS

There is no cure for IBS and no definite causal links between bacteria, genes, lifestyles and health effects. Yet most people eventually learn how to manage their conditions and improve their health. The Internet has emerged as a key source of information for over 65 per cent of sufferers, with much of the knowledge coming from social media and ads.

Researchers are actively looking into the ways internet support groups help sufferers. Most studies find support groups are among the most successful approaches to managing chronic conditions and rare diseases. In fact, the more the members of these groups share common IBS symptoms, the better the outcomes.

According to other  studies, however, over 60% of IBS sufferers would be better off if they "ignored the ‘wacky’ advice flooding the Internet. An example: someone who tried unsuccessfully to relieve cramps and help constipation using a mixture of vinegar, ginger and egg. Interestingly, neither of those who commented on the article thought that the Internet was the problem: physicians could also provide insufficiently personalized advice. 

"There are no quick fixes, just common sense," comments another observer. After all, it takes time and effort to find the right "them" who are just like "us" in hopes of getting the right advice.

Here is a list of support groups for Irritable Bowel Syndrome: A Community for Irritable Bowel Syndrome and Digestive Health Sufferers
  • Members: over 41,000
  • Website  launched in May 1995 (charter founded in 1987)
Alternative Medicine Forum - Yahoo group that welcomes "all who search for healing, including those with: ... Irritable Bowel, Leaky Gut..."
    • Members: over 9,800
    • Founded: Oct 23, 2001
    Body Odor Support  - forum for sufferers of Irritable Bowel Syndrome, leaky gut, TMAU and undiagnosed conditions increasing body odor (update: moved to proboards)
    • Internet group was originally founded in 2000, bodyodorsupport website launched in January 2009, it was moved to proboards in summer 2011
    Eating for IBS - Yahoo group
    • Members: over 8,500
    • Founded: Jul 19, 2001
    • Members: over 1,300
    • Founded: Dec 16, 2006
    There are dozens more yahoo groups devoted to IBS, but they are either less active, small or over-spammed so are not listed here.

    Local support groups are usually not very popular among IBS sufferers - people are less eager to travel for in-person meetings. Yet a few groups exist:

    helpforIBS - forums for local IBS support groups 
    • Largest group in Sacramento, California; followed by Berkshire, UK, Texas and Toronto, Canada
    • Founded: Dec 16, 2006

      Check also these message boards:

      IBS support Q&A Community supported by Aurametrix
      BS forum at
      HelpforIBS message board
      IBS community at
      IBS group at
      IBS Blog forum
      Candida and IBS forum
      Curezone IBS forum
      WebMD IBS community
      IBS Group at SupportGroups
      Not active since 2010 IBS forum
      Colon cleansing and IBS forum
      IBS discussions at HealthMessageBoards
      I have IBS Chat Board, ExperienceProject
      IBS Tales - IBS personal stories 


      Ramadas A, Quek KF, Chan CK, Oldenburg B. Web-based interventions for the management of type 2 diabetes mellitus: A systematic review of recent evidence. Int J Med Inform. 2011 Apr 8.

      Madan G, Stadler ME, Uhrich K, Reilly C, Drake AF. Adolescents with tracheostomies-Communications in cyberspace.  Int J Pediatr Otorhinolaryngol. 2011 Mar 14.

      Springer A, Reck CA, Huber C, Horcher E. Online hypospadias support group data analysis. J Pediatr Surg. 2011 Mar;46(3):520-4.

      Andersson G, Lj├│tsson B, Weise C. Internet-delivered treatment to promote health. Curr Opin Psychiatry. 2011 Mar;24(2):168-72.


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      Sophia said...

      I can't thank you enough for this list! This was my number one problem for almost two months now, and I've read from online drugstores, some information about these groups so I researched it. I want to share my experiences and also gather insights from others, so I might sign myself up for this.

      Kelly Townsend said...

      Like an old adage would posit, "a trouble shared is a trouble halved". I think support groups can cause both a psychological and physical effect on patients; the feeling that they are not alone can reduce the stress that can cause IBS attacks, while whatever advice they obtain from these groups can work on the physical part.

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