Need Advice 6 YEARS post FMT

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MSLOANE
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Need Advice 6 YEARS post FMT

Postby MSLOANE » Sat Sep 21, 2019 8:38 pm

6 Years ago I received a FMT via colonoscopy after Flagyl, and Difficid failed. Methodology was large dose of vancomycin, bowel clean out, colonoscopy transfer. I have not taken antibiotics at all during this time and have been in overall excellent health absent a pretty nasty anxiety disorder and some serious flare ups of IBS, which always resolve.

Fast forward to 2 weeks ago. I have some bad hemorrhoids that were flaring up really bad and I just could no longer tolerate them. I sought treatment and received injections called scelrotherapy. After day 1, the lower roids shrunk but i had a lot of intense and extremely painful swelling internally. After about a week, I felt that I was having chills and had a mild fever and worried that i had developed an abcess or some kind of infection. Additionally, I was also noticing some looser stool, possibly ibs, and leaking mucus, which could also have come from the roids.

In a panic, I went to the ER who tested me and said i had elevated white count (which could have been from scelerotherapy), and lots of swelling in my anus (also from sclerotherapy). They never bothered to do a stool sample. ER Dr was convinced that I had an infection and urged me to treat it with abx... I was in so much pain I acquiesced. I am now finishing up a 7 day script of Flagyl 4x500(INSANE) and Cipro 2x500. The Falgyl is to protect for cdiff, and cipro for the infection, as i told dr my history. I have had diarrhea of some sort for all 7 days of the script, along with abdominal pain and cramps. Diarrhea is usually big in the morning with cramps and some mush during the day. No blood. No fever. No copious mucus. I am not woken up at night. To me it seems like abx diahrrea and IBS but in the back of my mind im very worried and not convinced.

My question is to the experts here, how likely is it to have a relapse this many years out after a successful FMT? I have read a lot items on internet and feel I am likely more safer than not, but i just don't know what anecdotal reports have surfaced or experience of patients says for people who are this far out of an FMT.I am going to go back to the dr that did my FMT for a consult but i am really quite scared and worried and the old cdiff PTSD has come back with a vengeance and is really affecting my life. Also anxiety from cipro/flagyl is insane. Any help would be appreciated.

NanciT
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Re: Need Advice 6 YEARS post FMT

Postby NanciT » Sun Sep 22, 2019 8:44 am

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

First, sorry you are going through this. It is a terrible fear we all live with. I always tell posters to check in with their GI( the one that treated them). As you know, any antibiotic can cause diarrhea, especially while you are taking it. Once you have completed it, its a watch and wait. If the D continues talk with your GI.
It has been 6 years and it sounds like you were doing great before this. Hopefully since you have completed the meds, things will improve.
If not, you may need to get an actual appt and decide if you should test. If it were me, I would be taking a probiotic, not sure if you used them in the past. I recently started again after having D for a month.

Hopefully you will start feeling better soon

NanciT

georgina
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Re: Need Advice 6 YEARS post FMT

Postby georgina » Mon Sep 23, 2019 12:19 am

Flagyl will not protect you against Cdiff , Flagyl on it's own can actually give you Cdiff back . This combo of Cipro and Flagyl can definitely put you at risk for a relapse . Now it just a "wait , watch and worry" game. If it's IBS in a few days your symptoms will start to get better , with Cdiff everything gets worse. As Nanci suggested , i too would take a probiotic for a couple of weeks.

beth22
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Re: Need Advice 6 YEARS post FMT

Postby beth22 » Mon Sep 23, 2019 1:18 am

I relapsed after 4 years and I think Bobbie after even longer when she took an antibiotic. If your symptoms continue, get tested, but taking a probiotic is a good idea.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Sep 23, 2019 12:29 pm

I’ve been off meds for 2-3 days and my stools are definitely on the loose side but improving. Yesterday was diahreea, followed by mush but only three stools. Today is a very large pile of semi formed mush, some people may actually like these. Trajectory seems to be going in right direction as that nasty flagyl leaves my system. That stuff is hell I will never take it again. Just having extreme anxiety at every peristalsis motion. Bowel movement patterns are the same as my ibs. Wake up at 6am with heart racing and knowbits time. No m or b yet hopefully
Not ever.

Bobbie
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Re: Need Advice 6 YEARS post FM

Postby Bobbie » Mon Sep 23, 2019 12:51 pm

MSLOANE,

I've had 3 bouts of c diff - first lasted 4'years (1993-1997), second 1999, and third in 2011, 12 years later. I had a FMT in 2012 - still have GI problems. Broad spectrum drugs involved all 3 times but had severe infections. Last summer was on broad spectrum antibiotics for UTI - no c diff. Maybe FMT? Go figure.

As the others said, you are in the w,w,w period. See the 3 day rule for non -medical rule of thumb I made up years ago.

Hang in there. Keep posting. We will support you as much as we can, but for medical advice, contact your doc.

All the best. We survived. So will you.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Sep 23, 2019 1:20 pm

FMT is supposed to cure it so it’s not hanging around but is eliminated by good bacteria, so that makes sense to me on your cases should on mine as well but just have an overall lack of confidence in all things medical so it sucks having to grind through this anxiety.

Bobbie
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Re: Need Advice 6 YEARS post FMT

Postby Bobbie » Mon Sep 23, 2019 1:35 pm

I have a long history of wrong diagnoses by docs. Well understand how you feel. They are just human BUT oh, to,once again believe!! We need to stand up for US - but listen to docs if it FEELS right.

roy
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Re: Need Advice 6 YEARS post FMT

Postby roy » Mon Sep 23, 2019 4:17 pm

Are you Davidtm?
If you are I can send you a password reminder so you can log on using your old name.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Sep 23, 2019 10:06 pm

No I am not. Can’t remember who I was. Things are progressing, I guess. Roids are still a problem, the sclerotherapy has them inflamed bad and it sucks. That’s painful on its own outside of these miserable, soft and sticky penny roll sized turds I’m pushing out but better than D. Dr said it could take 6 weeks for roids to return to baseline, insane. Can’t get the stool all out at once as the hard tissue in rectum acts like a stricture and also reduces movement of the bowel.

Once I’m through this, whatever path it takes, I've told my wife that I will never go to another dr again, and I mean it!

And I’m seriously considering doing some booster stool enemas from pregnant wife. She’s waiting on my command to crap in a tub. All I have to do is say “huckleberry”.

beth22
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Re: Need Advice 6 YEARS post FMT

Postby beth22 » Tue Sep 24, 2019 1:40 am

I had some kind of injection for roids years ago, before c diff, and I remember it made everything worse and I never did it again. It will subside and you will get better. I did home enemas using my daughter as a donor and it helped me a lot.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Wed Sep 25, 2019 12:25 pm

I’m definitely not doing good. Lots of cramps and pain along with bowel movements. They aren’t WD just yet but are loose. I sent a loose sample to the lab, I’m
Pretty convinced I have it or something else. Dr prescribed me vancomycin but I have not taken it yet though I may start if I don’t improve soon. Will definitely be doing 7 days of home enema if I don’t use abx, dr said he was ok with that. Question: how long can a sample be stored in the fridge?

Should have never done those injections my
God.

roy
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Re: Need Advice 6 YEARS post FMT

Postby roy » Wed Sep 25, 2019 1:02 pm

It's very strange but your posts are coming from the same computer that Davidtm used.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Wed Sep 25, 2019 1:06 pm

Again I have no idea why, but that’s not me. On a cellphone so it might look that way.

MSLOANE
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Re: Need Advice 6 YEARS post FMT

Postby MSLOANE » Mon Oct 07, 2019 8:36 pm

Well, my instincts were right. I have the dreaded cdiff bug. Tried treating with only stool transplants but it did not work am now on vancomycin. Super upset because I have had this this for a while now but only just started appropriate antibiotics. Enough blood and mucus and things really progressed quickly to that stage. Vanco polls I have are expired in 2015 so I’m taking those while I wait for oral Vanco solution. Going to try and convince dr to do stool transplant without relapse as I know my history and I’m confident a relapse will occur.

Drs and their beloved antibiotics should be a huge class action lawsuit.


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