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FMT Procedure - 18-months Later

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Posted 11/19/2014 5:36 AM (GMT 0)
Greetings to all my UC brothers and sisters out there. I hope you all are well or as well as can be expected with UC in your life.

This is my bi-annual post to the board RE my FMT procedure/results. I am coming up on the 18-month mark following a self-administered, 10-day, Fecal Microbacteriotherapy (FMT) procedure (poop transplant).

I first discussed my procedure with the board in July 2013, then updated the board a year later. Here is a link to my 12-month update and in it there is a link to my first post:

https://www.healingwell.com/community/default.aspx?f=38&m=3046950

So it's 18 months later and I am happy/relieved to report I am still completely symptom free with and taking no meds whatsoever.

Last week I had a check up with my gastro and she ordered a full spectrum of blood tests. Got a call back today that the bloodwork came back and there are no active inflammation markers - bloodwork completely normal. My doctor said "it's pretty amazing" although she will not (and I will not) say this is a cure...and she was quick to point out she had another UC patient who tried the same procedure and his condition did not improve.

Point of my post is to just say that you owe it to yourself to give FMT a try. Even if I wake up tomorrow with UC symptoms, the last 18 months have still been worth it. Again, it appears to have improved my situation but I realize everyone is different and every donor is different and it's not an exact science. But you owe it to yourself to at least try it.

I'll try to hang around the board the next few days if anyone has any questions. Good luck.
Posted 11/19/2014 6:25 AM (GMT 0)
great stuff! thanks for the follow-up!
Posted 11/19/2014 9:20 AM (GMT 0)
Awesome.
Did you get a donor from a poopbank or anyone among your friends/family?
Are you on any maintenance meds?
Posted 11/19/2014 10:22 AM (GMT 0)
I do not know where to begin with this FMT. How on earth do you self-administer somebody else's poo? And in a hygienic way? I just can't comprehend.....
Posted 11/19/2014 11:26 AM (GMT 0)
outstanding !
Posted 11/19/2014 12:41 PM (GMT 0)
I'm really happy for you.

This is excellent news. For all we know, the disease has vanished and will never come back. I believe Michael Hurst is about to pass the 4 year mark, so for all extents purposes, I would use the c-word in these particular cases. Why? You take no medications whatsoever, eat whatever you like and there is no further UC pathology shown in tests. How are they able to differentiate your colon from a normal person's colon with no UC pathology? I want to hear any counter arguments to this.

I would also like to understand why some FMTs work and why some fail. Again and this is my personal opinion, I really believe it comes down to the donor and the pathogenic counts in their respective stool bacteria. The donor makes or breaks the FMT, so it *probably* would be wise to find someone who 1) eats a diet rich in RS and fermented foods 2) has low stress levels. This kind of disqualifies 99% of Americans.

Post Edited (Guardian7) : 11/19/2014 5:48:16 AM (GMT-7)

Posted 11/19/2014 1:02 PM (GMT 0)
Could be just luck of the draw. You have won the lottery. Good for you. Don't spend it all at once. Enjoy it for as long as you can. I would be curious to know if you have any idea at all if you think the stool used had roughly the same content throughout the procedures.
Posted 11/19/2014 2:43 PM (GMT 0)
deltaforce,

My 40-year-old brother was my donor. He was relatively healthy and regular but unfortunately for those of us attempting this maneuver it mostly comes down to availability. He was accessible...I just moved in with him and his family for 10 days.

I am taking no maintenance meds. I was on Asacal and then Asacal HD for almost 5 years. The FMT procedure was last ditch before I moved on to biologics so I just stopped taking the Asacal when I started the FMT and never got back on them. Honestly, I cannot say with certainty that Asacal ever did anything for me or my symptoms but it did have a significant impact on my bank account.

Posted 11/19/2014 2:49 PM (GMT 0)
happychick,

It's pretty straight forward. Stool sample collector, rubber gloves, saline solution, blender, strainer and delivery device - i.e. enema bag or bottle. There are youtube videos and protocols online you can follow. My protocol was from a doctor at UT Southwestern here in Dallas.

Interestingly enought that doctor picked up and left town once the FDA designated poop as an experimental drug and hos old specialty group at UT Southwestern no longer sponsors the protocol. 

Posted 11/19/2014 3:00 PM (GMT 0)
"Interestingly enought that doctor picked up and left town once the FDA designated poop as an experimental drug and hos old specialty group at UT Southwestern no longer sponsors the protocol."

thanks Fricking Dickhead Administration !
Posted 11/19/2014 3:01 PM (GMT 0)
Guardian7,

I believe you are on to something. It has to be the bacterial content in the donor stool. Personally, I have no reason to believe this procedure is not the solution and that its just a matter of effective application and the right donor sample. To me, its as simple as a clinical study to determine the correct bacterial content needed in donor sample.

Posted 11/19/2014 3:01 PM (GMT 0)
How often did you have to do it to get results? Just the once?
Posted 11/19/2014 3:17 PM (GMT 0)
garylouisville,

The stool samples varied in consistency over the 10-day procedure but its hard to comment on actual content. My brother was on a high-fiber diet for 2-3 weeks prior to the procedure per the protocol from UT Southwestern. at first, his stools were large and well-formed. As the 10-days proceded, they lost size and form. However, I improved my ability to hold the sample as the procedure went on. The first days I held the sample for just a couple hours maybe. By day 6 or so I was holding the sample all day.

Interestingly enough, my follow up colonoscopy in July 2013 revealed that my colon was healthy 30mm up but diseased past that point. My doctors theorized that the sample only got 30mm in and recommended that I do the procedure again but with a larger sample size and suggested I apply it at night and try to sleep with the sample in so that I could be in a prone position. So apparantly, contact with the sample may have had immediate results and then it took time for the parts of the system not in contact with the sample to heal.

Posted 11/19/2014 3:26 PM (GMT 0)
happychick,

I completed one 10-day procedure. My gastro and the specialist at UT Southwestern suggested I perform a follow up 10-day procedure within a few months but with a larger sample size (more saline solution) and application at night. However, I a lot of things going on life-wise at that point and coudl not get on schedule with my brother again so I never got around to it. Also, the results were speaking for themselves at that point so I didn't feel like it was necessary.
Posted 11/19/2014 4:31 PM (GMT 0)
Here is a link to a fairly recent article on a FMT clinical trial. Results were overall negative but there were individual cases of patients who did improve and they think the trial may not have been long enough.

http://www.medscape.com/viewarticle/824930#vp_1

So apparently it works sometimes in some patients. They just need time and clinical trials to figure it all out.

Posted 11/19/2014 4:57 PM (GMT 0)
I'm a big believer that success rates are much higher with blood relative donors. Who knows what really goes on in there? There are things going on at levels that we really don't understand. Something was actually responsible for your gut microbial imbalance in the first place and just repopulating it probably isn't enough to cure the disease. Perhaps, in a way, it doesn't have one iota to do with bacterial repopulation from a donor but maybe more to do with something in your brother's samples which caused your immune system to reset itself so that it no longer attacked whatever it was attacking before, kind of like using a matching bone marrow donor and doing a bone marrow transplant. If this particular idea is actually true then there is a possibility that you are indeed "cured".
Posted 11/19/2014 5:56 PM (GMT 0)
Stuff like this makes me think that if we could turn FMT into an exact science for UC, the results would be fantastic.
Posted 3/25/2015 10:05 AM (GMT 0)
Good to hear FMT worked for you. I also did 10 FMTs with my husband as my donor. Mine were done in August 2012. That's the way I remember watching the Summer Olympics. Trying to hold it in and rotisserie! I'm still doing well! So thankful to that bacteria!

I am frustrated that the FDA has made my doctor not want to discuss it with me. Especially considering the good results I had.
Posted 3/25/2015 11:17 AM (GMT 0)
that's fantastic and optimistic news!!! I wish you that your remission stays forever :)
Posted 3/25/2015 4:58 PM (GMT 0)
This is awesome! Congratulations!

I've been struggling to find a way to get it in Canada. My GI has tried several colleagues and non will treat me with it since I don't have active c-diff. I have absolutely no donor to do it myself.....it's very frustrating.
Posted 3/25/2015 7:08 PM (GMT 0)
Last year I did 40 DIY FMTs in a similar scenario over a two month period. In my case my donor was my younger brother. I had a temporary one-month remission where I thought I was cured, but went backwards as soon as I stopped. All symptoms returned within 1 week.

Its encouraging to hear the success stories. Looking back, there were so many variables to consider. I'm certain that in the future the science will catch up and we will be able to administer this routinely in a clinical environment with great success.
Posted 3/25/2015 7:31 PM (GMT 0)
Its encouraging to hear the success stories. Looking back, there were so many variables to consider. I'm certain that in the future the science will catch up and we will be able to administer this routinely in a clinical environment with great success.

I'm hopeful of this too, but there was a clinic that reported as high as a 70% success rate and it got shut down by the FDA once they heard of it. I honestly don't think the FDA is interested in people shifting away from the traditional medication paradigm of disease management. It's unfortunate, but I think the only UC medications in the pipeline are more biologics...

I feel that it will be an off the grid kind of thing given the fear mongering that goes on about it. It may be hard to fathom, but I do believe in a world where doctors don't have their patients coming back for repeat visits and using stronger medications.

I strongly believe the cure is in refining the procedure to compensate for the recipient's missing flora.
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