For many people with IBS, whether recently diagnosed or dealing with symptoms for many years, there are limited or no opportunities for mutual support in their own communities. This can be true even in large metropolitan areas where support groups for various disabilities and medical conditions are readily found through referral sources such as local organizations for a given condition, health care providers and hospitals, human services agencies, and in the U.S., local branches of the Self Help Clearinghouse.
The shortage of local resources for IBS appears to result from various factors. In many countries, laws or internal policies of organizations regarding medical privacy restrict health or social service providers or other entities from sharing information about other patients, clients or members with IBS. Although many other health and disability communities are easily able to have their networking programs comply with the laws by having participants sign opt-in releases of names and contact information, providers who regard IBS as just an occasional nuisance for most affected people, or who do not have the staff or volunteers to set up appropriate mechanisms, may shy away from doing so. There may not be a national organization for IBS or related disorders in a given country, or one that is large enough to have local affiliates. Some people with IBS have symptoms severe enough that it is difficult or impossible to leave their homes, or they may be reluctant to identify themselves as people with IBS, so it might be difficult to reach a critical mass of members able and willing to sustain a support program over the long term.
Thus, for many years, with the advent of the Internet, a variety of support forums have been developed online. Many of the more established ones appear on the links page on IBS Impact’s main website. Some, such as the Irritable Bowel Syndrome Self Help and Support Group or Help for IBS, were started by individuals with IBS, or in the case of Healing Well, which covers various conditions, another chronic illness. Other GI-oriented forums are affiliated with organizations, such as the Association of Gastrointestinal Motility Disorders, or more recently, the Digestive Health Alliance of IFFGD, though neither resource is IBS-specific. Barbara Bradley Bolen, PhD, IBS blogger for About.com has a forum where readers can post. Several IBS or GI-related Facebook groups or pages exist, some as extensions of the sites above.
Many online forums have been useful to IBS Impact members and others with IBS at various times. They allow one to connect with peers in many countries and exchange a range of real life, “been there, done that” experiences and information that one is simply not able to get from a book or a busy medical practice, no matter how well-intentioned physicians or their staff may be. However, online venues have their limits. Sometimes members post medical misinformation. Every IBS site is eventually contacted by scammers and spammers peddling miracle cures or dubious surveys or websites, and it takes vigilance for owners and moderators committed to being reputable resources to intercept those attempts without preventing legitimate, open dialogue. While some people find largely anonymous support forums freeing places to discuss an embarrassing condition like IBS, others may find multiple conversation threads of high traffic forums or unburdening themselves to large numbers of strangers to be intimidating or confusing to navigate. Conversely, those who are wary of public disclosure may not find the“real name” culture of Facebook to be a good fit, and some smaller, newer or lesser known forums may not have sufficient web traffic to be consistently useful. Like IBS symptoms themselves, one’s preferences for information and support are individual and may change over time.
Thus, the broadening of options in different formats, that may encompass those with IBS who use the Internet rarely or not at all, would be a positive step. Although the resources are not IBS-specific, AGMD, founded by a person with a GI motility disorder, also offers an opt-in networking directory to paid AGMD members, as well as several monthly support groups– an in-person one in its local Lexington, Massachusetts area, and telephone support groups for “patients”, “newbies” diagnosed in the past year, and parents of children with motility disorders.
Another new option, Lotronex Connex, is offered by the pharmaceutical company Prometheus, the current maker of Lotronex (alosetron hydrochloride). Lotronex is a prescription medication approved by the U.S. Food and Drug Administration for women with severe IBS with diarrhea who have not obtained adequate relief from other interventions. According the recent announcements by the IBS Self Help and Support Group and Prometheus’ own website, this program is open to women currently taking Lotronex who volunteer to undergo online training and provide some personal information, such as geographical location, age, years with IBS-D and employment status, for matching as a phone or email support mentor to women with similar characteristics who are considering or newly using Lotronex.
Prometheus emphasizes that a mentoring relationship should not be used to give or receive medical advice. As some readers may be aware, in 2000, Lotronex was removed from the market because of risks of serious side effects and a few deaths, as reported among some people who took it. However, because of sustained advocacy by those who found Lotronex very effective for them, the medication was reinstated with several restrictions in 2002. Background information on this issue can be found on the FDA page for Lotronex, and these 2002 news reports from the New York Times and Reuters. IBS Impact, which has no connection to Prometheus or any other pharmaceutical company, encourages readers who consider Lotronex or the mentoring program to familiarize themselves with the subject and consult their physicians so that they can make informed choices best for them.
IBS Impact will be interested to see how these support alternatives develop and challenges all those interested in quality of life issues for people with IBS to call for the continuing development of innovative programs. We look forward to a future when a range of different types of resources, offline as well as online, are available, well-publicized and easily accessible in local communities to all people with IBS who seek such help.