**June 2017 Update** Fecal Transplant in May 2013 - UC Free 4 Years Later

Just updating my 3-year post below. I can't remember if I came on here at 3.5 years and couldn't find an old post so here's an update.

I'm still UC symptom free and off all meds. Normal BMs, no inflammation, no blood, etc. No special diet.

I was supposed to see my gastro in February for an annual, but life has been busy and I haven't gotten around to setting up the appointment. My annual appointments in the past have been unremarkable. My gastro just calls it an extraordinary result and cannot explain.

Like I said below, I'm not sure why it worked for me and has not worked for others. Based on my experience I'd encourage anyone suffering from UC to try it, even knowing that it may make you worse for a period. If you are sick enough to consider surgery to remove your colon then you literally have nothing to lose at that point.

I'll be back around if anyone has any questions.

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It's been 3 years since I completed an in-home fecal microbacteriotherapy protocol (FMT or poop transplant) and I am still UC free. I've been back here every year to 6 months to give an update. My intention is to provide some hope to those of you suffering with UC.

I know there is no reliable science on the efficacy of this treatment (yet?) and my situation is purely anecdotal to this community. But I have had zero symptoms since 2013 after 5 years with active UC (2008-2013). I finally decided to do the transplant after being hospitalized in April 2013 when my inflammation had finally stopped responding to oral prednisone (60mg/daily).

After the transplant, I have been back to my gastro for biannual and now annual check ups and she "cannot explain" the results. My blood work is clean (no inflammation markers). Furthermore, I have terrible eating habits, three kids under the age of 5 and my work/life balance is a nightmare...in other words, my life has become MORE stressful in the last three years since the transplant, yet I am still UC free today. I now have 1-2 BM daily, no urgency, no blood, etc.

I know many are skeptical of FMT but this appears to have "worked" for me for the time being. Based on my experience I would be remiss not to encourage any UC sufferer to attempt this or at least look into it.

Link below to my 2-year check in.

www.healingwell.com/community/default.aspx?f=38&m=3420378

Good luck.

Post Edited (UC_Hater) : 6/8/2017 9:09:26 PM (GMT-6)

Did you have c.diff prior to the FMT?

I do not discount, but I do not draw same hypotheses. My speculation is that there was residual c-diff not detected, or other similar infection for which there is no test. I would speculate you were misdiagnoised with UC, or had colitis due to gut microbe dysbiosis.

FMT is a massive probiotic therapy. I think you took out the infection and re-alligned the gut microbes. End of symptoms and end of gut-microbe induced colitis.

I think anyone not responding well to meds should first check for food intolerances, and then consider some sort of probiotic therapy (including FMT). Especially if someone does not respond to steroids, then I would encourage FMT just to rule out infectious source.

DBwithUC said...
I do not discount, but I do not draw same hypotheses. My speculation is that there was residual c-diff not detected, or other similar infection for which there is no test. I would speculate you were misdiagnoised with UC, or had colitis due to gut microbe dysbiosis.

FMT is a massive probiotic therapy. I think you took out the infection and re-alligned the gut microbes. End of symptoms and end of gut-microbe induced colitis.

I think anyone not responding well to meds should first check for food intolerances, and then consider some sort of probiotic therapy (including FMT). Especially if someone does not respond to steroids, then I would encourage FMT just to rule out infectious source.

Just FYI, I was not always unresponsive to prednisone. Took it for 4+ years off and on before it started failing. C-diff came two years after diagnosis of UC and immediately after a colonoscopy, so thinking was that I picked it up during that procedure. Was also negative for C-diff for three years after initial contraction while UC was active.

I'm curious to know of anyone else doing a home transplant and to hear their stories. As well as procedure. I tried an at home vitamin e enema which resulted in increased cramping and am Leary about experimenting at home. Do GI docs do this in their offices?

Also, what about a probiotic enema? Do those exist?

Post Edited (ILEDE) : 5/25/2016 12:16:21 PM (GMT-6)

ILEDE said...
I'm curious to know of anyone else doing a home transplant and to hear their stories. As well as procedure. I tried an at home vitamin e enema which resulted in increased cramping and am Leary about experimenting at home. Do GI docs do this in their offices?

Also, what about a probiotic enema? Do those exist?

my thinking is the location has very little to do with the success rate - i'd pretty much rather do just about anything at home vs a docs office -

if you have a suitable and willing donor there is no reason not to try it -

UC_Hater:

Thank you for taking the time to update. I would give everything I own to be able to write those words.

I did FT at home a couple of years ago and saw some dramatic results. I did not know that you have to keep it up a while. Schedules and busy-ness got in the way and I didn't continue. I tried a couple of times last year. Recently I tried again and got flu-like symptoms for 24 hours. I am currently in the process of planning a trip to Taymount for the 10-day treatment. (I think I can purchase more that they can ship frozen for continued at-home treatment.) One difference they have is inserting via long tube instead of just an enema bottle. When I put liquid in via enema bottle, I have an extreme urge to expel that right away. (I know people say it doesn't matter, but I'm pretty sure you need to hold it at least 20 minutes.)

So happy for you and thanks for finding time to update in this forum!!

I am a firm believer of FMT - DD leading a normal life after DIY home fecal transplant.


Best wishes....

more research to support FT:

http://www.medicalnewstoday.com/articles/310496.php

Ulcerative colitis patients may benefit from fecal transplantation
MNT Knowledge Center
Written by Catharine Paddock PhD
Published: Tuesday 24 May 2016

The results of a trial presented at a meeting this week show that 1 in 4 patients with ulcerative colitis found their symptoms disappeared and their gut linings had healed or substantially improved after receiving fecal microbiota transplantation - without the use of steroids.

The findings feature at Digestive Disease Week 2016, San Diego, CA, 21-24 May, 2016.
...

For the trial, researchers in Australia - including Dr. Sudarshan Paramsothy, a gastroenterologist from the University of New South Wales - recruited 81 patients with ulcerative colitis from three different study sites.

The team randomly assigned the patients to receive either FMT treatment (41 subjects) or placebo (40 subjects). All patients had failed to respond to standard non-biologic treatments.

The participants received the first FMT and placebo through a colonoscope. After that, they gave themselves enemas 5 days per week for 8 weeks.

The results show that 11 of the 41 (27 percent) FMT patients achieved the study's two main goals: they reported their symptoms had gone away, and their digestive tract showed signs of having healed or improved (as evidenced via endoscopic examination). Both improvements were achieved without the use of steroids, note the researchers.

In contrast, only three of the 40 (8 percent) patients treated with placebo reached these two goals.

Dr. Paramsothy explains why their study is significant:

"Our study is the first multi-centered trial that uses an intense therapy of FMT infusions, 40 over 8 weeks, and has been able to show definitively that fecal microbiota transplantation is an effective treatment for ulcerative colitis."

He says previous studies using FMT to treat ulcerative colitis have been limited to small case series and two single-center trials and have produced conflicting results.

Another important feature of the study is that each FMT that the patients received contained fecal material from at least three donors.

This was to avoid the possibility of a "donor effect," where individual patient results might be unduly influenced by the gut microbes of a single donor.

"By using fecal microbiota transplantation, we aim to treat the underlying cause of ulcerative colitis instead of just its symptoms, as opposed to the majority of therapies currently available."

Meanwhile, experts are expressing concerns regarding FMT, particularly in relation to long-term effects. There is, for example, a theoretical possibility that infectious agents could be transmitted, or conditions and diseases could develop from changes in the gut microbiota.

There is evidence that human FMT from obese people to rodents may promote obesity, and FMT from lean people to obese recipients with metabolic syndrome has led to increased insulin sensitivity, say the authors of a review of FMT, who note:

"Clinical follow-up of patients over many years, ideally combined with analysis of banked donor and recipient specimens, will be crucial in assessing the possibility that FMT may increase (or decrease) the risk of a number of common chronic conditions."

This is amazing UC Hater!!! What a fabulous success story!!! I hope you will continue to check in with us from time to time. Great to hear!
B