Showing posts with label self-help. Show all posts
Showing posts with label self-help. Show all posts

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:

IBSgroup.org: 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
      http://ibs.meetup.com/


      Check also these message boards:

      IBS support Q&A Community supported by Aurametrix
      BS forum at about.com
      HelpforIBS message board
      IBS community at HealingWell.com
      IBS group at Dailystrength.org
      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 





      References

      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, Ljótsson B, Weise C. Internet-delivered treatment to promote health. Curr Opin Psychiatry. 2011 Mar;24(2):168-72.

      Wednesday, March 30, 2011

      Who Blogs about IBS?


      The Internet has opened up a whole new world for healthcare consumers. An enormous information imbalance has gradually decreased, giving patients opportunities to cross-check physician recommendations and ask better questions. Perhaps even more importantly, the Internet has provided new venues for support groups and healthcare consumers to join in on the conversation and share their experiences. 

      Support groups are not a new phenomenon. The power of self-help groups was first demonstrated by alcoholics. Alcoholics Anonymous (founded in 1935) helped many of those considered hopeless, something that the medical establishment was not able to do.

      Of course, there have been worries that the Internet might fuel hypochondriacs.  But even those critics admitted that "if a computer makes you sick, you can then use it to help you get better." 

      Computer-mediated communication has added more power to emerging Health 2.0  due in large part to the fact that anonymity can enable discussion of very sensitive issues, and that remote communication helps people separated by great distances get together. Moreover, networking formats have supported information exchange in real time in addition to e-mail, and search engines have helped people identify relevant groups. 

      What's next? Better personal health records, better search engines, and tools to interpret the wealth of information generated by dynamically-evolving networks that can mirror the subtle details of daily life.

      Meanwhile, despite what some people think, blogging is alive and well; there were 10 blog posts by IBS sufferers in the last 7 days! 

      Of course, willingness to converse depends on the nature of the conversation. Not too many people want to discuss their Irritable Bowel Syndrome on twitter or facebook, but there are constant streams of  related posts and constant conversation.

      Today, we are announcing a new Irritable Bowel Blog and are listing existing blogs, some old and some recently updated.  We will try to keep you updated. You can also perform a google blog search (although it does not capture many recent blogs) or check the IBS Stories and IBS group blogs for current information.

      Recently updated blogs:

      Blog title
      Author
      Last post in March 2011
      Last update
      An Tobarin wordpress blog
      Irritable bowel syndrome
      March 30, 2011
      FOODMAP diet chart
      March 29, 2011
      Gena's Blog (IBS group blogs)
      I Want Pizaaaa
      March 29, 2011
      Ruled by the bowel?
      March 28, 2011
      ChrissyLynn's Blog (IBS group blogs)
      Not a happy camper
      March 28, 2011
      Shauni.x's Blog (IBS group blogs)
      18 and starting to cope
      March 27, 2011
      tjesspersen's Blog (IBS group blogs)
      I hate IBS!
      March 27, 2011
      SickPetals' Blog (IBS group blogs)
      I'd welcome cabin fever
      March 27, 2011
      Em's Blog (IBS group blogs)
      FFS!
      March 25, 2011
      Food tips to keep your belly stable
      March 25, 2011
      cherice's Blog (IBS group blogs)
      Never satisfied
      March 23, 2011
      J_17's Blog (IBS group blogs)
      P.S.
      March 22, 2011
      IBS (Blisstree.com)
      IBS is Why I'm Still Single 
      March 13, 2010
      Emz's Blog (IBS group blogs)
      First post because I'm pleased with myself 
      March 13, 2010
      cleung's Blog (IBS group blogs)
      Another episode - mild
      March 12, 2010
      Sophie's Story
      March 12, 2011
      carolann's Blog (IBS group blog)
      Fruit
      March 9, 2011
      Crispypip's Blog ( IBS group blog)
      Keeping a journal
      March 8 ,2011
      Tests, after all this time.... 
      March 1, 2011


      Bloggers from other sites occasionally mention IBS:
      See, for example,
      Deb Schulze's post of 03/30/2011 on How to make fiber work for you  (Baltimore Sun),
      Susan Dopart's post of 03/23/2011 on gluten free diet (Huffpost),
      Siouxsie Wiles' blog on integration of medical and natural health care (Sci blogs)

      Some Internet marketers copy IBS-related information in their blogs too - like Wielislaw who recently re-posted Are your bowels irritable? in his 07s65 blog.


      A few worth-mentioning old blogs:
      Blog title
      Author
      Latest post
      Last update
      Misery Loves Company (Everydayhealth blogs)
      November 12, 2010
      October 28, 2010
      IBS (Everydayhealth blogs)
      My favorite restaurant
      May 17, 2010
      Foods that relieve constipation
      March 12, 2010
      I discovered Annato caused my IBS problems
      November 19, 2009
      Family Health (Everydayhealth blogs)
      August 9, 2009
      August 3, 2009
      “Award-Winning” IBS Memoir
      May 28th, 2008
      It's back!
      February 14th, 2008

      Microblogging:
      Twitter Lists Description
      @COEMHealth/irritable-bowel-syndrome
      @boweltalk/ibs People with or supporting those with Irritable Bowel Syndrome (IBS)
      @ericbenchimol/gastro-nutrition
      @SharedDiaries/digestive-health Irritable Bowel Syndrome, related conditions, causes and management
      @PSCSupportUK/gastro
      @DrCesarYaghi/gastroenterology
      @boweltalk/gastro Medical info re: bowel, colon, digestive, gut and gastrointestinal (GI) topics
      @IBSgroup/ibs
      @IBSgroup/support