Friday, May 16, 2014

IBS Support Group in New York City

PUBLISHED : FRI, 16 MAY 2014, 07:30 PM
UPDATED : MON, 28 JUL 2014, 11:09 PM

If anybody is interested in meeting to talk about IBS treatment in New York City, please contact me. You can e-mail me at : lflores22 (at) gmail (dot) com -- thanks.

Over the course of many years, I've had no luck with a long string of gastroenterologists. Some gastroenterologists are useless. I've seen 5 or 6 gastroenterologists in the last many years. My last gastroenterologist was the most caring of them all. We have to change the mindset of doctors : we won't accept and don't deserve to be jilted by the medical community like this.

One idea that people should support is writing to your Congressional representative, asking them to co-sponsor the Functional Gastrointestinal and Motility Disorders Research Enhancement Act of 2013 (HR 842). HR 842 is supported by members of both political parties and is a revenue-neutral bill. Through this legislation, Congress can direct the National Institutes of Health to allocate existing discretionary resources specifically to IBS and other functional gastrointestinal and motility disorders, which collectively affect about 25% of Americans. Military service members and veterans are at disproportionately high risk for functional gastrointestinal disorders like IBS. Another idea would be to help garner support to enact a state-wide restroom access law in New York.

This video helps to advocate for support for restroom access for people with GI disorders and diseases. Please contact your New York State Assemblymembers to support the Crohn's and Colitis Fairness Act, also known as the restroom access bill.

Why a support going doing medical advocacy makes sense

From an online community group, I got the sense that it seems like some doctors hesitate to offer treatments that actually make improvements to the lives of people with IBS. There are many reasons for this. Some of the reasons are complex and require organized advocacy, other reasons are simple enough that could probably be solved by just a handful of people. Here are some observations/ideas that I've collected from doing research and conducting interviews with some doctors and with some other people living with IBS :

  • All general practitioners and some GI doctors don't have viable solutions for people with IBS. So much research is coming out on gut bacteria, and I have inquired with doctors about how can people with IBS receive treatments that are informed by this new information about gut bacteria. Specifically, I said that there are some procedures that are approved for people with FGID more severe than IBS, for which people with IBS may benefit from having received, but which are not yet approved. How can people with IBS get approved for these and other experimental procedures ? I was told that experimental procedures can be given to patients in a process to get them approved, but that process is through clinical trials. I asked one doctor how do we start clinical trials for people with IBS ? My doctor told me that we need funding for clinical trials. When I asked how much, my doctor would not say, except that the doctor alluded to major amounts of money. Therefore, any support group for people with IBS has to take the long-view that we need to advocate for funding for clinical trials as a way to speed up the deliver of new treatments for people with IBS, along with the process that could get these new and possibly other treatments approved for more people. The doctor heard what I was saying, but she said that clinical trials would take a long time, and that for right now, there are no immediate solutions, excepting for the use of a few known medications that have already made the rounds amongst the people living with IBS.
  • From one online community that I had briefly belonged to, it seemed like everybody went online to complain about symptoms for which there are no known treatments. As a support group, we can offer each other support, but we should not find it acceptable to hear that there's nothing that can be done, and we should strive to be more than just a place where people complain. One doctor told me that there are some treatments for other known diseases that are still not where we want to be. Therefore, people with IBS are not different than people with other incurable diseases. The challenge for a new support group based in New York City would be to offer the community the right amount of care and support, along with focusing our energy toward finding better treatment solutions.
  • One doctor recommended yoga and relation exercises, but when I asked how do yoga and relaxation help to rebalance our gut bacteria, one of my doctors could not answer my question. As we seek alternative therapies, I think there have to be doctors or advocates to make space for non-traditional therapies, but still hold a space for advancements in rebalancing our gut bacteria. If we can get this support group off the ground, we need to find a doctor or other medical professional, who can help give our support group a grounded medical source of information that has a sensibility for the larger vision about what successful treatment looks like.
  • Another idea that can be examined is if a database of "better" gastroenterologists would be in order.
  • If nothing else, we could create a face-to-face support group for each other, which in and of itself would be great. Some FGID groups, like the Crohn's & Colitis Foundation of America, seem to exclude people with IBS. So, a support group that just meets for people with IBS would be a breakthrough.

If anybody in the New York City area wants to gather and discuss how we can press the medical establishment to offer alternative IBS treatments and to support greater medical research, please let me know. You can e-mail me at : lflores22 (at) gmail (dot) com -- thanks.

1 comment:

  1. You may be interested in knowing that a new IBS-D clinical trial in New York is seeking women with IBS-D to participate in a study of an investigational medication called Ibodutant that may help reduce the symptoms of IBS-D, You can find out more information here: