www.incontinentsupport.org

I primarily visit this site because of bladder issues, but they are side effects of IBS and another disability. As I have posted in the past (with the permission of Schoppy and Joe K. at the time-- rest in peace, Joe.), for the past few years, I have owned and, with other people with IBS, run a grassroots advocacy and awareness website, blog, and social media for people with IBS, family members, friends and the general public. It is U.S. based, but attempts to include several other major English-speaking countries when we can, and it reaches readers and visitors in over 100 countries worldwide.

Our focus is not on treatment or support per se (There are plenty of other resources for that) but on scientifically accurate information/awareness, news, advocacy and clinical trial opportunities, and other interesting and useful things that tend not to be discussed on other IBS sites. We are not a business or charity. This is a completely volunteer effort.

While we are laypeople with IBS, we also do not deal in quacks. Although we are independent of any other IBS/GI site or organization, we are known to and followed by many, including several of the top internationally known researchers in the field of IBS/functional GI disorders, from whom we often get state of the science information. There are links to many resources for IBS, commonly overlapping conditions, disability and medical incontinence (including this ISC site and forum), articles, etc. on our main site, and more on our blog. Much of it has been recently updated, and we will have more coming throughout April, as this is the annual IBS Awareness Month.

If you or someone you are close to has IBS, please feel free to check all of it out. The main site is http://www.ibsimpact.com. The blog, which can be updated more frequently, is at http://ibsimpact.wordpress.com We also have public Facebook and Twitter accounts.

Thanks for your attention.

Hi, zenute - Thanks for providing links to your IBS site. I was diagnosed with Ulcerative Colitis in 1991, and had microsurgery to remove an adenoma in my rectum in 2007. Although I've been in remission for several years now, I must undergo a colonoscopy every year. My gastroenterologist originally pressed me to have my entire colon and rectum removed - even though the tumor was in my rectum, and my colon was healthy. The tumor was in an area which made traditional surgery impossible. I begged him to find me an alternative solution, since I was only 53 at the time the tumor was discovered, and an ostomy bag wasn't a feasible option. I have never been an extreme athlete, however, I am a moderately active person and do a bit of traveling.

A friend of mine was going through the same medical issues at the time. He had a colectomy and ended up having several ER visits (while traveling) due to blockages associated with the bag, which are always a serious emergency. My gastroenterologist never mentioned to me that this was a common occurrence. I'm sure that the whole process of determining the right treatment for me would have been expedited had I had access to a site like yours with all of the relevant current information in one place.

Wetters

Thanks for your interest and comments, Wetters. Just to clarify for other readers, as confusion of the two conditions is common, ulcerative colitis is one of several forms of inflammatory bowel disease (IBD) which is a different condition from IBS, although some people have both conditions. There are some similar symptoms. IBS is much more common than IBD and cuts across all demographic groups, and unlike IBD, it does not cause visible inflammation that can be detected in currently available clinical tests, although in recent years, research in specialized labs has shown non-overt inflammation in some subsets of IBS. It's not as well understood scientifically as IBD, although there has been a lot of progress in the past couple of decades. The treatment options are also mostly different, and colectomy is never done for IBS.

Thanks for the clarification, zenute. For all these years it has been my thought that the two terms were interchangeable!

Wetters