Help.. Where to turn FMT

If you have had or are considering an FMT please share your experiences here.
Mmm
New User
Posts: 18
Joined: Mon Jun 18, 2018 9:28 am

Help.. Where to turn FMT

Postby Mmm » Wed Aug 21, 2019 10:38 am

I’ll try and shorten this. First two cdiff +stool June 2018 Sept 2018

Had urine bleeding/ assumed kidney stone or UTI and kidney infection so was about to be given ceftriaxone- settled on Bactrim July 2019. Didn’t finish called gastro started vanc test was - . UTI again two weeks later restarted Bactrim and vanco things seemed ok - but had to go to the hospital as my son had day surgery.

Aug symptoms began exact as # 1 and #2. Flu like, then bloating, fever etc. then WD 35x a day. We were CAMPING thankfully in our RV and I had brought some vanco. I started 5 pills. When home the on call doc only would order stool no blood work so I went to ER.

Stool was - but elevated WBC, and after stopping vanco that day WD increased. I was finally dx by on call gastro and ER with cdiff based on elevated WBC and they did a cat scan. Left with vanco and instructions to follow up with Gi for a taper, difficid or a FMT.

My Gi had no record as of Monday (ER was Sunday) but said next appt could be Oct!!. Tuesday they called to say we have your record. Weds they called to say your stool is - . I basically lost it at the woman on the phone and said well I was dx by one of the docs and the ER doc (gave them his name) and sent home with Vanco. Obviously they dx’d It. Just got a call now for an appt 3 weeks from ER visit.

My question. I’m emailing and calling new offices. Having to get my records to Brigham’s and Young. Trying to find a teaching hospital or what not. I want this over. But is my last round going to be considered + if the stool was -

They started assuming maybe the 5 pills of vanco affected it. I feel left high and dry. We live rural and there’s only one hospital the rest are over and hour and I’m not a patient at their GI offices.

We have great insurance and even if need be paying OOP is not an issue. Please advise.

M

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

Re: Help.. Where to turn FMT

Postby beth22 » Thu Aug 22, 2019 1:18 am

If you took vanco, that will throw your test off. When FMT was first done, you needed two have had two relapses. Now, that is no longer the case for most places. I would look into finding who does FMT and schedule an appointment with that doctor, even if you don't need to have it done in the future. Ask for a consultation and see what your options are. If sometime in the future you need FMT, you will already have made the contact.

Mmm
New User
Posts: 18
Joined: Mon Jun 18, 2018 9:28 am

Re: Help.. Where to turn FMT. UPDATED

Postby Mmm » Thu Aug 22, 2019 7:30 am

Mmm wrote:
> I’ll try and shorten this. First two cdiff +stool June 2018 Sept 2018
>
> Had urine bleeding/ assumed kidney stone or UTI and kidney infection so was
> about to be given ceftriaxone- settled on Bactrim July 2019. Didn’t finish
> called gastro started vanc test was - . UTI again two weeks later
> restarted Bactrim and vanco things seemed ok - but had to go to the
> hospital as my son had day surgery.
>
> Aug symptoms began exact as # 1 and #2. Flu like, then bloating, fever etc.
> then WD 35x a day. We were CAMPING thankfully in our RV and I had brought
> some vanco. I started 5 pills. When home the on call doc only would order
> stool no blood work so I went to ER.
>
> Stool was - but elevated WBC, and after stopping vanco that day WD
> increased. I was finally dx by on call gastro and ER with cdiff based on
> elevated WBC and they did a cat scan. Left with vanco and instructions to
> follow up with Gi for a taper, difficid or a FMT.
>
> My Gi had no record as of Monday (ER was Sunday) but said next appt could
> be Oct!!. Tuesday they called to say we have your record. Weds they called
> to say your stool is - . I basically lost it at the woman on the phone and
> said well I was dx by one of the docs and the ER doc (gave them his name)
> and sent home with Vanco. Obviously they dx’d It. Just got a call now for
> an appt 3 weeks from ER visit.
>
> My question. I’m emailing and calling new offices. Having to get my
> records to Brigham’s and Young. Trying to find a teaching hospital or what
> not. I want this over. But is my last round going to be considered + if the
> stool was -
>
> They started assuming maybe the 5 pills of vanco affected it. I feel left
> high and dry. We live rural and there’s only one hospital the rest are over
> and hour and I’m not a patient at their GI offices.
>
> We have great insurance and even if need be paying OOP is not an issue.
> Please advise.
>
> M

UPDATED - the office called weds evening asking first for another sample - there was a ‘lab error’. I explained yet again no, I left the ER being treated on Vanco and it’s now been 3 full days of treatment so things are ‘solidifying. The woman didn’t understand, put me on hold to speak with her manager, came back and explained the lab messed up all cdiff orders recently!!!

I demanded my file to me ammended which she apologized and said yes it has, it states there was a lab error on that day, and it now states positive for cdiff #3. What a mess!!! Also the doc who is on vaca (of course) will want to see me even sooner since ‘this is the weirdest case ever’ per them - to discuss FMt or referral. I explained my disappointment in everything.

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

Re: Help.. Where to turn FMT

Postby beth22 » Thu Aug 22, 2019 12:55 pm

Ask for a copy of the lab report. If you do eventually have FMT, you should have all positive test results, whether amended or not.


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