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

Fructose Malabsorption Australia: Yahoo group

• 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 

Google IBS support group 

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.

Vilhauer RP. 'Them' and 'us': The experiences of women with metastatic disease in mixed-stage versus stage-specific breast cancer support groups. Psychol Health. 2011 Jan 1:1-17.

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.

Quality of Life in Irritable Bowel Syndrome

It's not news that IBS is tough. The unpredictability of symptoms, misunderstanding by peers, fear,  misconceptions, desperation, all contribute to discrimination of sufferers and significant impairment of quality of life. In fact, IBS sufferers are affected by greater physiological and physical disturbances than patients of inflammatory bowel disease, proving that wellbeing is not directly associated with observable morbidity.

The most common psychological problems of IBS are anxiety, depression, panic, and post-traumatic stress. According to an Australian study (Mikocka-Walu et al, 2008), anxiety is a greater problem than depression, while a recent Korean study (Hyun Sun Cho et al., 2011) shows the same prevalence for anxiety and depression (observed in 38.6% and 38.6% of IBS patients, and in 24.2% and 16.5% of healthy subjects, respectively). Indeed, different cultural environments enhance or decrease problems associated with IBS - Greeks, for example, take it harder than the Swiss (Faresjö et al., 2006). Differences in IBS prevalence could also be the result of different environments, creating a reluctance to talk about digestive issues. In countries such as United States and UK more people may be suffering in silence.

The questionnaire below was developed by Kaiser Permanente (Longstreth et al., 2005) to capture the impact of irritable bowel syndrome and its treatment on patients’ lives.

References

Longstreth GF, Bolus R, Naliboff B, Chang L, Kulich KR, Carlsson J, Mayer EA, Naesdal J, Wiklund IK. Impact of irritable bowel syndrome on patients’ lives: development and psychometric documentation of a disease-specific measure for use in clinical trials European Journal of Gastroenterology & Hepatology 2005, 17:411–420

Groll D, Vanner SJ, Depew WT, DaCosta LR, Simon JB, Groll A, Roblin N, Paterson WG. The IBS-36: a new quality of life measure for irritable bowel syndrome. Am J Gastroenterol. 2002 Apr;97(4):962-71.

Faresjö A, Anastasiou F, Lionis C, Johansson S, Wallander MA, Faresjö T. Health-related quality of life of irritable bowel syndrome patients in different cultural settings. Health Qual Life Outcomes. 2006 Mar 27;4:21.

Mikocka-Walus AA, Turnbull DA, Andrews JM, Moulding NT, Wilson IG, Harley HA, Hetzel DJ, Holtmann GJ. Psychological problems in gastroenterology outpatients: A South Australian experience. Psychological co-morbidity in IBD, IBS and hepatitis C. Clin Pract Epidemiol Ment Health. 2008 May 23;4:15.

Cho HS, Park JM, Lim CH, Cho YK, Lee IS, Kim SW, Choi MG, Chung IS, Chung YK.
Anxiety, Depression and Quality of Life in patients with irritable bowel syndrome  Gut Liver. 2011 Mar;5(1):29-36.

Much ado about Bowel Movement

Want to manage your toilet metrics? There's an app for that. Actually, multiple apps - like this one recording precise GPS location of bowel events along with their shapes and odors or IBS symptom tracker and GI monitor, approved and designed by gastroenterologists.

Yet, the lists of metrics provided by these applications are not complete - no options to record color, consistency, texture, effort... And what about total time spent? According to IBS forums, it could range from seconds to ... "long enough to play a full game of Scrabble". An Israeli scientist (Sikirov, 2003) found that times "needed for sensation of satisfactory emptying" range from 50 to 130 seconds for healthy volunteers.  He plotted time and effort vs the height of toilet (41cm or 16-inch-high, 31cm or 12-inch-high toilet, and a plastic container) and found notable correlations - the shorter the better. US team (Rao et al, 2006) evaluated internal pressures of subjects with a water-filled balloon or silicone-stool in their rectum, rating their stooling sensation. As one could guess, silicone was more pleasurable and sitting was better than lying flat.  Japanese scientists (Sakakibara et al, 2010) measured hip flexon vs angularity of the  rectoanal canal and recorded abdominal pressure. Their conclusion was that squatting helps.

This is in line with observations by IBS sufferers: like this one about getting down on hands and knees and rubbing the floor with head before going to bathroom. or keeping knees elevated by placing feet on a footstool.
 
Daniel Lametti who wrote this well-researched article for Slate (Not a bunch of Internet quackery!) conducted his own squatting experiment - each morning for a week, following a bowl of corn flakes and a cup of coffee . As his 10-minute routine dropped to a minute, he was able to free an hour per week for more productive work.

The moral of the story is that we need not only switch to stand-up desks for work, but also to better-designed toilets - like this one from Japan, adjustable to several different squatting and sitting postures.

Perhaps one day such toilets will make a splash in other parts of the world.



References

Sikirov D (2003). Comparison of straining during defecation in three positions: results and implications for human health. Digestive diseases and sciences, 48 (7), 1201-5 PMID: 12870773

Rao SS, Kavlock R, & Rao S (2006). Influence of body position and stool characteristics on defecation in humans. The American journal of gastroenterology, 101 (12), 2790-6 PMID: 17026568

Ryuji Sakakibara, Kuniko Tsunoyama, Hiroyasu Hosol, Osamu Takahashi, Megumi Sugiyama, Masahiko Kishi, Emina Ogawa, Hitoshi Terada, Tomoyuki Uchiyama, & Tomonori Yamanishi (2010). Influence of Body Position on Defecation in Humans. LUTS: Lower Urinary Tract Symptoms, 2 (1), 16-21

PS. Aurametrix analyzes bowel movement and finds the best amounts and combinations of soluble and insoluble fiber, water, starch, probiotic strains,  and many other ingredients. 

The FODMAP diet

"Functional gut" symptoms (bloating, wind, abdominal distension, discomfort, pain, altered bowel habits) can be controlled by diet, but most theories of how exactly food components are linked to symptoms are lacking consistency. In 2005, Peter Gibson and Susan Shepard gave us food for thought by defining highly fermentable but poorly absorbed short-chain carbohydrates and polyols as an important dietary factor contributing to these symptoms ( see their original article that coined the term FODMAPs - Fermentable Oligo-, Di- and Mono-saccharides And Polyols).

Their studies of different patient groups (Irritable Bowel Syndrome, Irritable Bowel Disease, celiac disease, fructose malabsorption, patients who underwent colectomy, etc) showed that reduction of the intake of FODMAPs may help to reduce symptoms, depending on other things these people usually eat.

FODMAPs are types of sugars and fiber, found in wheat-based and other foods:

Fructans and Galactins	Polyols
Fructose Lactose Fructooligosaccharides Galactooligosaccharides	Sorbitol Mannitol Xylitol Maltitol

There is a cumulative effect of these foods, of their osmotic (water moving) and fermentative (bacteria feeding) actions, on IBS symptoms such as  abdominal pain, bloating, gas, altered bowel movements and lethargy. Irritable Bowel Syndrome symptoms could result from many different (and independent) reasons including  low absorptive capacity of the small intestinal epithelium, increased sensitivity of the bowel, rapid transit through the small bowel, and bacterial overgrowth in the distal small bowel.

This means that you may eat some of the problem foods listed in the tables and still fill fine. It's not about the foods eaten in isolation, it's about hundreds of food components that are adding up. To follow the right diet, you need to identify your individual sensitivities and dietary combinations.


For informational purposes only, we are listing candidate dietary components contributing to osmotic load and rapid fermentation thus increasing luminal pressure and distension, along with common high and low FODMAP foods - as listed in scientific publications. Red and green tables were compiled by a FODMAP-sensitive IBS sufferer based on his own experiences - check his post: "Printable FODMAP Diet Chart for your Convenience".  Another FODMAP list compiled by trial and error can be found here.

Fruits: 

•  Serving size is ½ cup 

•  Limit to 1 to 2 servings per day.  

•  Fresh or fresh frozen fruit may be better tolerated than canned fruit. 

•  Keep in mind tolerance may depend on the amount you eat at one time.  

•  Limit concentrated sources of fruit--such as dried fruit and fruit juices  

•  Avoid eating large amounts of any fruit. 

Intestine Friendly	Avoid if FODMAP Intolerant	Questionable May Need to Limit
Bananas (could be gas forming), blackberries, blueberry, grapes (if half a serving or less than 10), grapefruit, honeydew, kiwifruit, lemons, limes, mandarin orange, melons, oranges, papaya, passion fruit, pineapples, raspberries, rhubarb, strawberries, tangelos	Apples, apple cider, apple juice, applesauce, apricots, cherries, dates, grapes, lychee, mango, peaches, pears, pear juice, plums, prunes, watermelon	Other fruit juices or drinks, sugar-free jam/jelly, dried fruit, canned fruit in heavy syrup, other fruits

                                                     Vegetables:
•  Serving size is ½ cup (most vegetables) or 1 cup of leafy green vegetables
•  Limit to 1 ½ to 3 servings per day.
•  Cooked vegetables may be tolerated best as cooking causes a loss of free sugars.
•  Keep in mind tolerance may depend on the amount you eat at one time.

Intestine Friendly	Avoid if FODMAP Intolerant	Questionable
Bamboo shoots, bok choy, carrots, cauliflower (gas forming), celery, cucumber (gas forming), eggplant (gas forming), green beans (gas forming), green peppers (could be gas forming), leafy greens, parsnip, pumpkin, spinach, sweet potatoes, white potatoes, other root vegetables	Artichokes, asparagus, some beans (baked beans, chickpeas, kidney beans, lentils) beetroot, broccoli, Brussels sprouts, cabbage, cauliflower, fennel, garlic, sugar snap peas, leeks, soy products, okra, onions, peas, shallots	Avocado, corn, mushrooms, tomatoes, other beans

Other

Intestine Friendly	Avoid if FODMAP Intolerant	Questionable
Meat, Fat, Yogurt and hard cheeses, Eggs, Aspartame (Equal® and Nutrasweet®), Saccharin (Sweet ‘n Low®), Sucrose (table sugar), Glucose, Maple syrup	Honey, Flavorings with fructose or sorbitol, Desserts (ice cream, candy, cookies, bars, popsicles) sweetened with fructose or sorbitol, Cereal or other processed foods with sorbitol or fructose on the label, Wheat, Sherry and port wine, Sweeteners such as sorbitol, mannitol, xylitol, maltitol, and isomalt used in sugar-free gum, candies and mints	High-fructose corn syrup, Lactose

And here are two more tables with foods already listed above, just to show why they are problematic for FODMAP-sensitive people.

Note that some of the foods listed as intestine friendly may be less friendly for some people inducing functional gut symptoms. Inulins - often included in prebiotic supplements - are longer chain fructans thus are expected to be more intestine-friendlier than fructans with low degree of polymerization.  Yet inulins often lead to increased wind.

Scientific publications:

Gibson PR, Shepherd SJ. Personal view: food for thought--western lifestyle and susceptibility to Crohn's disease. The FODMAP hypothesis. Aliment Pharmacol Ther. 2005 Jun 15;21(12):1399-409. Review.  

Barrett, J.S., Gibson, P.R.  Nutrition issues in Gastroenterology, Series # 52  Clinical Ramifications of Malabsorption of Fructose and Other Short-chain Carbohydrates.  Practical Gastroenterology 2007 XXXI:51-65

Gibson PR, Newnham E, Barrett JS, Shepherd SJ, Muir JG. Review article: fructose malabsorption and the bigger picture. Aliment Pharmacol Ther. 2007 Feb 15;25(4):349-63. Epub 2007 Jan 8.


Gibson, P. & Shepherd, S. Evidence-based dietary management of functional gastrointestinal symptoms: The FODMAP approach. Journal of Gastroenterology and Hepatology 2010 25:252-258.

Biesiekierski JR, Newnham ED, Irving PM, Barrett JS, Haines M, Doecke JD, Shepherd SJ, Muir JG, Gibson PR. Gluten causes gastrointestinal symptoms in subjects without celiac disease: a double-blind randomized placebo-controlled trial. Am J Gastroenterol. 2011 Mar;106(3):508-14. Epub 2011 Jan 11

Rangnekar AS, Chey WD. The FODMAP diet for irritable bowel syndrome: food fad or roadmap to a new treatment paradigm? Gastroenterology. 2009 Jul;137(1):383-6. Epub 2009 May 29. 

Other links:

• The FODMAP Theory for IBS
• Does the FODMAP Diet Help IBS?
• IBS and FODMAPs
• Wikipedia article on Fructose malabsorption
• Center of research on FODMAP diet
• A list of individual sensitivities by a sufferer for whom a low FODMAP diet worked
• FODMAP update from Crystal Nelson
• Low Fodmaps discussion on IBSgroup.org
• Foodmap article and discussion on HealthHype.com
• Foodmaps discussion on HealingWell.com
• Foodmap discussion on Celiac Disease forum
• Fodmap questions on Colitis forum 
• Foodmaps discussed on Crohn's forum (J-Pouch group)
• Fodmap diet discussed on Diabetes forum
• Foodmap Diet  discussed by Wedding community
• Low Foodmap diet for IBS on SparkPeople
• Foodmap discussions on Fructose Malabsorption Yahoo forum (subscription required)
• FODMAP diet on Facebook
• FODMAP calculator video
• FODMAP discussions at Aurametrix