Doctors Urged to Acknowledge Home Fecal Transplant

fecal transplantOPEN LETTER TO:

American College of Gastroenterology
American Gastroenterological Association
Canadian Association of Gastroenterology
Gastroenterological Society of Australia
New Zealand Society of Gastroenterology
British Society of Gastroenterology
United European Gastroenterology
Austrian Gastroenterological Association
German Gastroenterological Association
Swiss Society for Gastroenterology
Israel Gastroenterology Association
Asian Institute of Gastroenterology
World Gastroenterology Organization

It’s time for gastroenterological associations around the world to establish protocols to deal with growing patient interest in Fecal Microbiota Transplantation (FMT) and the role of the microbiome in human health.  Many doctors are unaware that FMT is used to treat Clostridium difficile and shows promise in managing Inflammatory Bowel Disease and other conditions. Patients are increasingly frustrated that their doctors are not up with the latest research. Doctors are frustrated that patients want to consider alternative treatments when mainstream treatments have failed. This can have serious consequences.

An example from August 2013: Bob, a much-loved 57 year old husband, father and state administrator was having regular outpatient treatment in the local hospital in Kentucky, USA, for a non-gut-related condition.  One day he had his regular treatment, developed diarrhea that night, went to the Emergency Department of the same hospital the next day, was admitted, and underwent testing to determine the source of the diarrhea.  

When that hospital failed to come up with a diagnosis, they transferred him to a larger hospital in another city.  Within hours, his family and friends were told that Bob had had Clostridium difficile (C diff).  The family begged the hospital doctor to try fecal transplant but were told to stop wasting his time with “quackery”. Bob died the next day.

Not only has this family had to endure the sudden death of their loved one, they’re now also struggling to come to terms with the fact that Bob might have been saved, and that their suggestion was ridiculed although fecal transplant has been proven to work for 93% of patients with C diff. Regardless of whether the treatment would have worked or not, Bob and his family deserved a chance to find out. What was there to lose?

Unfortunately this is a typical scenario playing out across the US, and across the world. Patients are becoming increasingly informed about the benefits of FMT while the medical profession is lagging in developing suitable protocols to handle their enquiries.

We call upon the American Gastroenterology Association (AGA) and gastroenterology associations around the world to take responsibility for educating their members and their patients about fecal transplant as a legitimate option for treatment of C diff, and potentially other conditions.

We ask that gastroenterologists acknowledge that: 

  • home fecal transplants are occurring
  • it’s critical that patients discuss FMT with their doctors before doing it at home
  • this conversation won’t go well if doctors are uninformed, dismissive or accuse their patients of “quackery”
  • negative attitudes from doctors, however well-intentioned are not conducive to collaborative medical care
  • online patient groups are educating patients about FMT to fill the gaps left by the medical profession, which is not ideal. 

 We request that the AGA implement:

  1. a FMT hotline for doctors to call when faced with someone dying of C diff
  2. a FMT information kit for doctors to refer to, when patients ask them about FMT
  3. a harm minimization protocol for donor screening and support of those chronically ill patients who choose to do FMT at home (for whatever condition) with a legal disclaimer if necessary

14,000 people like Bob* died of C diff last year in the US alone.  This has to stop. Protocols must be established to help those like Bob, who are too sick to wait.

Please let us know what you decide.

 *Name changed to protect grieving family 


For more information, please contact:

Tracy Mac
The Power of Poop 
Fecal Microbiota Transplant Patient Information Resource (International)
info@thepowerofpoop.com
 
Catherine Duff
The Fecal Transplant Foundation
Non-profit organization dedicated to raising awareness, providing education, and advocating for patients and for the science of fecal microbiota transplantation (USA)
cduff@thefecaltransplantfoundation.org
 
Christian John Lillis
The Peggy Lillis Memorial Foundation
Non-profit organization fighting C. diff through education and advocacy. (USA)
cjlillis@peggyfoundation.org

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Categories: fecal microbiota transplant

2 replies »

  1. Hi, I have had C-Diff for almost 4 yrs. now. went through all conventional treatments, now am doing Fecal Transplants at home, with approval from my G.I.doctor My question is must I do a enema after the first transplant ? The first one went well. The doctors suggested I do 10 to 15 at home. Would appreciate some help with my question….Thank You, Linda

  2. The enema is only before the first FMT.

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