Addendum to “Analysis of Crohnology’s FMT Users…”

There are a lot of things I left out of Analysis of Crohnology’s FMT Users: An Open Source Peer-to Peer Observational Study

The most significant is likely that the collection of people who have tried Fecal Microbiota Transplantation for Inflammatory Bowel Disease is larger than just the 6 that Crohnology was able to add to the previously published collection outlined in Systematic review: faecal microbiota transplantation in the management of inflammatory bowel disease. From reading my article you can count 2 more: The gentlemen, Michael Hurst, who made the DIY YouTube video and the second is the young girl, Emma, who gave video testimony about FMT. Both were Ulcerative Colitis patients. Upon a little more digging there are some pioneering patients on crohnsforum.com actively sharing their FMT stories. There’s a collection of results outlined in an interview with Dr. Mark Davis at ThePowerofPoop.com.¬†I also found a significant thread at healingwell.com. The collection of FMT users trying to solve IBD and sharing their results is in more than one place. It would be an ambitious but worthy project to hunt through the web for more cases and collect results.

It would be nice if the questions in the survey were added to Crohnology’s website. What I have in mind is a dynamic survey which updates when a new user fills out questions. Crohnology is certainly on this path.

If you’d like to learn more about doing an FMT for yourself a good place to start is ThePowerofPoop.com. The site has plenty of up to date resources. There’s even a recent article covering¬†gut bacteria and epigenetics.

Questions I should’ve also asked in the survey:

  • Did you have the donor screened?
  • Did you have the donor material screened?
  • Did you take loperamide (Imodium) before doing the enema?
  • Did you have any trouble retaining the enema?
  • From start to finish how long did you spend doing the FMT?
  • What setting on the blender did you use?

 

Posted in e-Patient Community Research.

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