3rd recurrence, considering FMT

If you have had or are considering an FMT please share your experiences here.
3charmer
New User
Posts: 7
Joined: Mon Jul 25, 2022 8:30 pm

3rd recurrence, considering FMT

Postby 3charmer » Sun Jul 31, 2022 2:14 am

Hi all,

I posted here in the past under the name notheidi, but as yet unable to reset my password. It is nice to see some familiar faces! I hope everyone is well.

I am on my third recurrence in a 12 year timeframe and strongly considering requesting FMT with lab grown bacteria mix. Infections 2 & 3 I wasn't taking antibiotics after. #2 I got from visiting a nursing home and #3, the current one...no idea. I suspect I probably reinfected myself somehow because I haven't been around anyone else and I haven't been on antibiotics recently! Currently on vanco 125 mg for 14 days, day 5 now. Improving every day but still terrified and traumatized.

I'm considering FMT in the hopes of a cure. I'm also alarmed at this point because if I were to get some other kind of infection and need to take an antibiotic, it's quite clear that I can't tolerate them without getting c diff. That really scares me. I am very careful to try not to get infections for this reason and I would continue to be the same way post FMT, but I just want a fighting chance.

Wondering if anyone has any experience with Kaiser Permanente northern california non-emergent FMT in Walnut Creek or Oakland, and if you can recommend a doctor or give any advice?

Thanks so much!

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: 3rd recurrence, considering FMT

Postby NanciT » Sun Jul 31, 2022 6:30 pm

Hello and Welcome to the site. Please read the first thread for all new posters

Sorry you are going through this, especially for a 3rd time. I also have had CDIFF 3 times. In 2014-15 for a year. Also in 2020 twice after antibiotics.

It sounds like you are looking for a permanent cure but I am not aware of any. If you are able to get an FMT, generally it is a cure for now. If people take antibiotics in the future, I believe they can still get CDIFF.

There have been some recent articles on DIficid preventing future occurrences but I believe that is for short time relapse.

You may want to request an Infectious disease specialist and since this is the 3rd time, I can't imagine Kaiser not allowing that. I would push for that.

Another option is to go out of Network. DR. Neil Stollman is a top GI in Oakland and known for doing FMT's. I saw him at one point in 2015 when I had been treated by my GI for a full year. I was on a DIficid taper at the time so he felt I should complete that and see how things go. I finally was rid of it so I never had the FMT.
Look up Dr. Stollman, he really is the Top in this field with FMT's . Maybe Kaiser would refer you? I am unsure about that but may be worth a try.

Wishing you the best with this!!

NanciT

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

Re: 3rd recurrence, considering FMT

Postby beth22 » Mon Aug 01, 2022 1:08 am

Dr. Stollman did my FMT back in 2008 and I have seen him for some consults afterwards even though I don't live in Northern CA. He is considered an expert on c diff. You may want to just get a consult, but he is not with Kaiser.

notheidi
Regular Contributor
Posts: 266
Joined: Sun May 17, 2015 11:24 am

Re: 3rd recurrence, considering FMT

Postby notheidi » Thu Aug 04, 2022 8:13 pm

NanciT wrote:
> It sounds like you are looking for a permanent cure but I am not aware of
> any. If you are able to get an FMT, generally it is a cure for now. If
> people take antibiotics in the future, I believe they can still get CDIFF.
>

Thanks, Nanci! I'm sorry you have had this 3 times and one of them for a full year!!! Awful.
Yes, this is exactly what I'm wondering about FMT, if it makes sense to do it in my situation because at least so far, I do get over the infection without an extended bout; I just get it again about 4 years later. :(

I guess I am wondering with FMT if I would be at least LESS likely to get it again if I had to take antibiotics in the future? Right now I can't tolerate antibiotics at all without diarrhea which scares me.

Beth, thanks for the advice about Dr. Stollman. I will consider this. As I think about it, I'm doubtful about whether I want an FMT done by a kaiser doctor (if I end up getting an FMT) because I want someone with a lot of experience doing them.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize


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