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Ulcerative Colitis
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Posted 3/31/2015 2:35 PM (GMT 0)
Question for all the long-time people I see here on HW who have posted thousands of messages, tried everything, etc.

Have you done fecal transplant, and why or why not?

(I have done some and saw a dramatic improvement, but then went back to bad UC, and now am gearing up to do more. I now know that I have to do it 30 days (every day or every other day), then 3x per week, 2x per week, etc. It has to be long term. I saw short-term results and stopped because a) I was better and b) the scheduling of donation vs. using is difficult.)

Thanks for your replies.
Posted 3/31/2015 2:37 PM (GMT 0)
What medications are you taking for uc? There's plenty of topics about fmt, perhaps one of those will answer your questions?
www.healingwell.com/community/default.aspx?f=38&m=3247529
www.healingwell.com/community/default.aspx?f=38&m=3361113
www.healingwell.com/community/default.aspx?f=38&m=3262069
Posted 3/31/2015 2:45 PM (GMT 0)
iPoop: Yes thank you for the info. I have read all of the threads. I was wanting to know if people like you have done it and why or why not?
Posted 3/31/2015 3:01 PM (GMT 0)
No, I have not. As i'm currently in remission (that is, no uc symptoms). My gastroenterologist said fmt works for cdiff not uc based on studies. Pretty much been my opinion on it, I pulled up some studies with very mixed results on uc and fmt. I know someone here said the protocol used (briggs was it?) made a big difference in success rates. Have no immediate need for fmt, so I haven't had the need to research it further and validate/disprove that claim.
Posted 3/31/2015 3:36 PM (GMT 0)
I have crohn's colitis and flared for 23.5 yrs straight with no remission ever...so maybe that counts for something in to this topic, but no, I have never tried it, or honestly even thought to. My GI finally put me on Humira because I ended up developing a recto-vaginal fistula and it put my crohn's colitis into remission (still dealing with the IBS-C but working on that issue)

I saw a show about how they do the fecal transplant in the UK, sticking a tube down a patients throat (that had IBD) and then administering the feces liquified through the tube and into the guts, thought it was so gross, although I understand the benefit it has had for many, I don't recall if they explained that it worked for every patient they did it on or not.

I know having IBD in itself is gross and maybe it takes something gross to put a patient in remission, but thankfully for me the Humira did the trick...so far, who knows for how long (that drives me a bit nuttier than I usually am when it comes to having this lifelong crap illness.
Posted 3/31/2015 3:38 PM (GMT 0)
www.healingwell.com/community/default.aspx?f=38&m=2758195
Posted 3/31/2015 3:43 PM (GMT 0)
I don't have thousands of posts, but I have had UC for years and trust me when I say I know my crap. I haven't done FMT because I haven't had a dire need to try it. If things were to go south on me I would more than likely try that before attempting any of the big gun pharm drugs out there. But I think there needs to be a lot more to learn about FMT, I truly believe for a certain amount of patients the FMT will be a life savor and for others it won't do much for, this I think has to do with the various underlying issues people have that the end result is UC, we all have UC but I think that is the end result to other problems which is different between people. This is why we always hear that something works great for some but does nothing for others.

I think there is a lot at play than just finding a donor, I think you need to find the "right" donor, my hope is with further research they will learn how to match up donor/patient for the best possible chance of help. Currently I see to much stats based on a handful of same donors, way to many ways to adminaster the FMT, etc. Hopefully they will learn a lot more and get down to a proper way to determine a solid donor and a solid practice of applying it prior to my absolute need for it. In the meantime I willing to wait, until I can't wait anymore.
Posted 3/31/2015 4:29 PM (GMT 0)
I'm currently in remission and sorry but I can't mentally wrap my head around FMT. So, no I've never tried it.
Posted 3/31/2015 5:23 PM (GMT 0)
I wouldn't know where to start!
Posted 3/31/2015 5:36 PM (GMT 0)
if I had low quality of life, and could work out donor issues, I am not opposed.

from the available clinical data for UC (not c-diff), it seems to help a small sub-group of people, and maybe moreso if antibiotics and probiotics and other factors can be combined to get the gut microbiome in the right place. (figuring out your "right place" and getting there is a large part of the success rate problem in my opinion.)

it does seem like it needs to be done multiple times initially, and then periodically. it is, imo, a probiotic therapy and not an actual cure (except for c-diff).

also imo, it seems to deliver some of the anerobic microbes that cannot be done in probiotics exposed to oxygen. this might be a good argument for mixed not blended - to minimize the amount of oxygen introduced.

it think for many who have not tried it, the donor issues, lack of availability at medical centers, and the ambiguity about protocol, are barriers. that and the costs of properly screening donor stool.

I personally hope before I ever need it, that enought of the microbes have been isolated, and the anerobic problem worked out, so that I can just take a manufactured probiotic cocktail.
Posted 3/31/2015 8:28 PM (GMT 0)
I would have liked to have it when I probably had c diff a couple of years back and reoccurred last year. However, no one offering it here in the UK in a medical environment and I really don't think I know any donors with good digestion! I also ideally would like there to be some more research evidence about why it goes wrong sometimes, such as people developing IBS afterwards, I wonder if blood type or genetics might impact for instance. If I still have my colon in another 10 yrs I think the "poop pills" might be out and I will definitely try them or if I get c diff again I will campaign for it via the hospital.
Posted 4/1/2015 12:46 AM (GMT 0)
Maybe it would help for you to understand that when we were diagnosed (1984 for me) there was really only prednisone (not even mesalamines).

If diagnosed today I would try the simplest naturals I could find first then hit FMT. By the time FMT was anywhere close to being viable for UC I was already on Imuran and Remicade (back around 2006). After a brief remission, coming off those, I flared again. I tried other things but nothing but steroids and strong immune modulators/suppressants seems to help me.

When did FMT catch on? - I just recall all these posts where spouses poop was used in blenders at home (I followed the results and wanted success but wasn't seeing it in what I read; we saw a handful of success stories which may seem like a lot but I only saw one severe case it helped and non as severe as mine). Some tried their children's poop then folks said their baby's poop wasn't 'dirty' enough. It's still not working for most and dreadful compared to other naturals.

My question would be why try FMT over SCD when so many claim diet cured them. Or, 2 say nopal; 2 said clay; one said AMP Florecel; several claim aloe vera gel; one guy said sarsaparilla cured him and there are so many others it's so crazy to name.

I wonder why one would think to try poop before sarsaparilla? Alkaline diet, garlic enemas, AID (diet similar to SCD), gluten free, salmon and yogurt. I had a person at work telling me just yesterday that cocunut juice cure a friend's ulceration colitis. I just can't imagine these people were anywhere close to the severity of my disease. but i tried many just not poop.

FMT progressed to where GI's were doing it but you had to take strong antibiotics to kill everything first. I lost hearing in one ear after taking strong antibiotics and suffered through a terrible flare afterwards.

That is risky for my condition as I am hanging on by a thread in life (just able to work and function as a husband and father).

Meanwhile from 2007-2009 I went in and out of remission and tried SCD a second time (sure wasn't reading FMT was ready then).

Through 2009 I got my last bad flare and tried a flurry of naturals (again) but nothing was helping and ended up hospitalized almost losing the colon (again). How far along was FMT in 2009 (still infantile). So you follow your GI and try all the stuff in here and elsewhere and continue to decline until you're only pooping blood and have fever, chills, anemia, extreme pain, dehydration et al. and you have a family to take care plus a job pushing you (asking the wife for her poop to mix up in a blender at home crossed my mind at that time but results coming back in here and elsewhere were poor still poor).

Hospital, IV steroids, back on Imuran and Remicade plus Lialda then Apriso - that's my story so what would you do now if me?

I'm in a 5 year remission with 1 solid poop each morning. Should I go off my off my meds and try FMT and risk losing the colon or just stay with strong prescriptions...it's tough but at this time I'm afraid to even miss one Apriso.

Good question though

You allowed me to whine. thanks
Posted 4/1/2015 1:23 AM (GMT 0)
I did 40 FMT over a 70 day period and experienced what i would describe as temporary remission. However as soon as I stopped my symptoms all came back very quickly.

It's a big topic with lots of variables. I believe that donor compatibility is the single most important factor. And that means its a lottery in the absence of an intelligent screening process. It's very easy to get it wrong, too. Believe me, you don't want to be getting it wrong. You'll be committing to an hour per night lying in all manner of positions after having squirted someone else's fecal matter where the sun don't shine. It is reasonably gross and can be logistically challenging. Its not something I'd ever want to do long-term.
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