The Post-FMT Files, Part Deux

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
georgina
Long Time Contributor
Posts: 2635
Joined: Sat Sep 12, 2015 10:07 am

Re: The Post-FMT Files, Part Deux

Postby georgina » Tue Aug 08, 2017 4:07 am

Glad you are feeling better today , hopefully the second FMT will be successful ,and changing the donor may increase your healing chances.

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: The Post-FMT Files, Part Deux

Postby roy » Tue Aug 08, 2017 6:52 am

Part of the FMT is a full course of c.diff meds before the procedure, make sure you have it this time.

DrMike
Contributor
Posts: 99
Joined: Sat Jul 15, 2017 5:16 am

Re: The Post-FMT Files, Part Deux

Postby DrMike » Tue Aug 08, 2017 10:36 am

I'd amend that, Roy, to say a full course *with clinical response.*

Because I'd been on meds for over two weeks but only five days of DIFICID and I'd started to respond to that, but it hadn't quite been five days.

Yesterday I ate a meal and didn't immediately have to go. I only did have to go five times the whole day. Felt like a vacation. Not even 24 hours out from DIFICID.

:sigh:

Oh, you know what's really good? I steamed rice with banana slices.

NikaNik
Long Time Contributor
Posts: 699
Joined: Wed Mar 11, 2015 11:52 am

Re: The Post-FMT Files, Part Deux

Postby NikaNik » Tue Aug 08, 2017 11:07 am

Dr. Mike,

Did you submit your sample before you took the Dificid? When will you know the results? I ask because I've seen a few posts from people having IBS flares (going many times for a few days in a row) and then it settles down and they are c diff negative. Either way, glad to hear you're feeling better already! For several folks, the second FMT was the cure! Hang in there!

Nikki

Musings
Regular Contributor
Posts: 313
Joined: Tue Nov 01, 2016 8:38 am

Re: The Post-FMT Files, Part Deux

Postby Musings » Tue Aug 08, 2017 11:16 am

I am one of those people, Nikki. I had a day where I went around 12 times (thank you, pizza...) but the next day dropped back to my "normal" 3 times so I chocked it up to an IBS flareup due to poor food decisions on my part. Given your diet of not-exactly-easy-to-digest food items, would not be shocked if this were an IBS flare versus a recurrence but if it is a relapse seems the second FMT really does help a lot of people.

amg
Regular Contributor
Posts: 275
Joined: Sat Oct 01, 2016 3:16 pm

Re: The Post-FMT Files, Part Deux

Postby amg » Tue Aug 08, 2017 11:22 am

Dr. Mike, if this is a c diff relapse, then you appear to be having an excellent response to Dificid. Why put yourself through another FMT when you have the option of trying a long Dificid taper? That's what cured my daughter after 4 relapses on vanco and flagyl. She took 14 tabs bid, then 14 tabs qd, the 7 tabs qod.

Here is a paper detailing experience with Dificid tapers in patients with multiple recurrent c diff refractory to standard therapies:

https://academic.oup.com/ofid/article/d ... r-Patients

and here is a study detailing Dificid's effect on an in vitro gut model which helps explain why it has a lower relapse rate than Vanco or Flagyl: https://www.researchgate.net/publicatio ... _gut_model

I hope you are cured of this monster soon!! Hang in there. If I were in your shoes, I'd discuss the Dificid taper option with my doc. You can always return to the FMT option if all else fails.

DrMike
Contributor
Posts: 99
Joined: Sat Jul 15, 2017 5:16 am

Re: The Post-FMT Files, Part Deux

Postby DrMike » Tue Aug 08, 2017 3:54 pm

So a few things about IBS. The clinical criteria specify that unintentional weight loss should lead to strong consideration of a different diagnosis. Fever absolutely excludes the diagnosis. I had both. Also, while extreme flares of IBS can be debilitating, this was going on for two straight weeks.

I did collect two samples prior to treatment. And then there was that: within six hours of my first dose of fidaxomicin, I *dramatically* improved and my fever broke. I went eight whole hours without a BM yesterday. I haven't gone that long since the day prior to the bowel prep. Obviously, all is not happy and normal yet down in my belly, but I'm improving.

As for why I want to do FMT again, I want the c. diff GONE. Shoo! Vamoose! I want to reconstitute my microbiome and move on with my life, avoiding antibiotics as much as I can until the vaccines hit the market.

beth22
Long Time Contributor
Posts: 10852
Joined: Tue Apr 07, 2009 2:23 pm

Re: The Post-FMT Files, Part Deux

Postby beth22 » Tue Aug 08, 2017 5:23 pm

I just saw a GI specialist thst I see for my SIBO. If my test comes back positive, he recommended Dificid followed by FMT via colonoscopy and the laxative prep. But, I have been dealing with this off and on for 9+years.

I also went to the rheumatologist and one of the things that he is testing me for is the ankylosing spondylitis. Negative for rheumatoid arthritis. Whatever the muscle/joint problem is, it flared up badly last year when I tested positive. Apparently c diff flares up fibromyalgia too.

Hope you feel better soon.

DrMike
Contributor
Posts: 99
Joined: Sat Jul 15, 2017 5:16 am

Re: The Post-FMT Files, Part Deux

Postby DrMike » Tue Aug 08, 2017 7:15 pm

https://goo.gl/images/QPk5pp

I'm just gonna leave that link. OMG. I'm dying of laughter (and I can laugh without fear). And relief.

MKW
Regular Contributor
Posts: 392
Joined: Mon Sep 26, 2016 9:49 am

Re: The Post-FMT Files, Part Deux

Postby MKW » Tue Aug 08, 2017 8:35 pm

Hi DrMike, wanted to tell you around the time I had my FMT in March, during the month or two before/after my procedure, there were 6 people actively posting on here that had FMT's. Two were successes (one was me) and 4 were failures with 1st FMT. Three succeeded with 2nd procedure, and the other poster chose to try Dificid instead of a 2nd FMT. She quit posting so I don't know her outcome. From what I've seen on this board, there is not an 85% success rate with first procedure! Many succeed with the second. Who knows why, and everyone's doctor has different recommendations. I took Vanco for 8 weeks (4 weeks at pulse dosing) prior to the procedure. Then post procedure, no probiotic pills, only kefir/yogurt 2-3 cups a day with diet 2/3 fruits and vegetables. My PI-IBS symptoms/food intolerances didn't start till weeks later. Also, I did NOT hold it in for any time - so that did not affect success with me. My doctor says "holding it in" does not effect success rate, and she does several FMT's a week at UVA.

I am curious too, about your statement you want C Diff gone. I have no medical education, so all of the mixed info in the gazillion medical articles about C Diff on the internet continues to be unclear to me. Is there any evidence FMT eradicates C Diff bacteria any more than successful Vanco/Dificid treatment? - Melanie

NikaNik
Long Time Contributor
Posts: 699
Joined: Wed Mar 11, 2015 11:52 am

Re: The Post-FMT Files, Part Deux

Postby NikaNik » Tue Aug 08, 2017 8:52 pm

MKW - glad you are doing well! Dr. Mike, I was wondering that too. From what I've read there is no way to tell if the FMT or any treatment eradicates the c difficile spores inside the gut (as a test may be show up negative but the spores can still be dormant). Another thing I've noticed is that most of the folks I chat with have some level of IBS or food intolerances after c diff no matter what type of treatment they had (Dificid, FMT, Vanco, Flagyl, Rebiotix, Allinia etc). I had guts of steel before c diff. Now, two years after my treatment, I'm doing very well, but I occasionally get some minor IBS (too much garlic and salads seem to be triggers as well as that time of the month). My c diff specialist in NYC said it takes the gut a long time to heal and the P-IBS is common (hopefully you won't have it after this FMT, just letting you know in case things are a little off sometimes). He said for some it disappears in 1-2 years or less, for others it's a new normal. I hope this FMT works absolutely perfectly for you, and that you get back to feeling great soon!

OCmama
Regular Contributor
Posts: 257
Joined: Sun Mar 12, 2017 10:44 pm

Re: The Post-FMT Files, Part Deux

Postby OCmama » Tue Aug 08, 2017 9:32 pm

I would also like to read any studies that show lower amounts of sporulation with FMT. It is my understanding that following an FMT you still are at high risk for CDI, which tells me that spores are still present in the gut post FMT.

So far the only answer I have been able to get from the specialists here is that it is a combination of time and personal constitution that gets you to the other side of a C. diff infection (2 years seems to be our doctors general guess, as that is how long it takes your gut flora to recover).

Ril
Long Time Contributor
Posts: 1837
Joined: Sat Oct 27, 2012 2:45 pm

Re: The Post-FMT Files, Part Deux

Postby Ril » Tue Aug 08, 2017 10:51 pm

Sorry to say this post has reached maximum length. I have to lock it now.
Please feel free to pick up with Part Trois Dr. Mike, or start another with a new name.


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 22 guests