Replapse/FMT/Mucus - C diff still or relapse again?

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dianes
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Replapse/FMT/Mucus - C diff still or relapse again?

Postby dianes » Sun May 06, 2018 12:00 pm

I'm new here and to keep this brief for now - I tested positive for C diff, took Vancomycin for 14 days, symptoms completely gone then started up again, another positive test, so I decided to DIY FMT and symptoms subsided but now I have some vague pain and tiny amounts of mucus about a week and half after my FMT. Is mucus common after FMT or is it common to linger after C diff, especially after relapse?

I can supply more details if needed - time-frames or whatever but thought I'd keep it brief so as not to take up too much of anyone's time. I would love to get up to speed on all of the wisdom of this forum - is there any way other than just going back through the topics and reading? Is there a post somewhere that summerizes or answers FAQs?

Mindy
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby Mindy » Sun May 06, 2018 8:36 pm

I have read that if you are doing your own fmt, it's probably via enema? If so, you'll need to do it about 3 times from my understanding.

dianes
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby dianes » Sun May 06, 2018 9:37 pm

Hi Mindy,

Yes, I did it via enema and I did it 3 days in a row. I had also read that it takes 1-3 times for C diff. I wasn't sure how you would know whether you need 1 time or 3 so I figured I would err on the safe side and just do 3. I sort of made it hard for myself to tell right away whether it had worked immediately. I fasted for about 24 hours before the first enema to hopefully "clear the decks" for the new "cargo". But that just made it so that I didn't poop for awhile afterward so I didn't know whether it had worked for a few days. In the meantime, I decided I should eat regular healthy food to give the new bugs something to eat to establish themselves with but that seemed to kick up more looseness so then I restricted my diet to mostly liquids (protein shakes mostly) which served to constipate me so then I decided to take a laxative which gave me outright diarrhea again for a couple of days. The pitfalls of DIY, I guess.

I've been reading other topics on the forum and I wanted to comment about something but I am not sure where so I will just do it here. It has been said that if you don't have watery D then you don't have C diff even with a positive test for the toxins, which I find very confusing. I had a set of very particular symptoms both in my original bout and my relapse bout but never had watery D. My stools were formed but looked like undigested food. The frequency was crazy - like 9-12 movements per day, around the clock. If there was no food left to come out then it was just mucus with much pain and a very strange painful FULL feeling in my rectum even after evacuation. I had painful cramps and pain in my bladder which I think stemmed from the very inflamed rectum. I seem to have hospital acquired C diff so I am having trouble believing that despite all of these indicators that I do not truly have C diff just because I never had watery D. I will add that I have always tended toward constipation and I do not normally get watery D under any circumstances so perhaps that is the mitigating factor in whether one has watery D with C diff or not.

Diane

Mindy
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby Mindy » Mon May 07, 2018 3:47 am

I am by no means an expert, but I for one can tell you I did not have watery diarrhea to start, but lots of M and B when I would go. However, I felt horrible. On relapse after the antibiotics given, then it went to full blown D. Will your GI not send you fir FMT via colonoscopy?

beth22
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby beth22 » Tue May 08, 2018 1:01 am

I have done my own FMTs as well. 3 enemas are not many. Most recommend doing 8 - 10. What I did if I remember right, was about 3 to start and then a week or 10 days later a couple more, then another one, etc. so that in the course of a month I had done about 8.

dianes
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby dianes » Tue May 08, 2018 8:18 am

Beth - Thanks for the response! The only place I found about DIY FMT that addressed C diff specifically was thepowerofpoop.com and that said 1-3 transplants for C diff. Can you point me to other sources of info on DIY FMT for C diff? How did you know you yourself needed to do 8-10 transplants over a month? Did your symptoms continue until you had done that many?

My symptoms have dwindled down to where I think I may have it licked!

beth22
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Re: Replapse/FMT/Mucus - C diff still or relapse again?

Postby beth22 » Wed May 09, 2018 1:20 am

The original protocol that I had was from the Center for Digestive Diseases in Australia where they have been doing FMT for many, many years, even before it was allowed here in the US. When done in enema form, the recommendation was 10, with a laxative prep before the first one.

Yes, my symptoms would come back some and I would do more. Also, I had been on Levaquin for an infection after I had a colonoscopy FMT 4 years before and I started to relapse. My GIs told me to start with 3 and then do 1 or 2 each week for about a month. I did and I got better and tested negative. That was in 2014. But, in 2016 I was hospitalized and treated with some heavy antibiotics and tested positive about 6 weeks later. I did the FMTs, not as many this time, and symptoms got better, but to this day I still test positive on PCR, negative on EIA. That means I am colonized, but no active infection.

Having M can mean simply that you have inflammation and not necessarily that there is c diff present. See how you feel. You can always do a few more if you need to, but it may just clear up on its own.


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