C Diff Since 2017

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Bryle
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C Diff Since 2017

Postby Bryle » Wed Aug 01, 2018 11:59 pm

I am a 35 yo Male and I was diagnosed with Cdiff by PCR in November 2017 after I recommended it to Provider. I had limited knowledge of the disease but knew enough because I work for a PBM. Previous to November in a duration of 3-4 months I had taken three 10 day courses of antibiotics: amoxacillion (twice) and Doxycycline. All most likely unnecessary for possible sinus infection/upper respitory. I presented to the Prescriber diarrhea off and on throughout couple weeks. No more than twice a day and no more than couple bouts a week. My normal for 35 years has always been one healthy BM 1/day. I knew something was off and PCR confirmed.

I have been on Vanco 125mg throughout the year possibly 4 times and the last time being a pulse taper. I always end up with the smelly loose stool daily and 1-2 diarrhea per week about 2 weeks after stopping therapy.

Also, I want to highlight after my first relapse I have extreme inflammation feeling under my left rib off and on that goes down my left flank.

Currently today I am on my last day of Dificid (first time taking and 10 day course). I have FMT on 08/10/18. The whole 10 days I felt worse than on Vanco. During I have had 2 diarrhea’s and 3 very loose stool episodes. I still go 1-2/day however. The left flank inflammation is bad and can only be escaped by laying down.

I have the FMT on 08/10 and My last pill of Dificid is morning of 08/02. They want me off antibiotics for a week before.

I feel today depressed/anxiety of not betting this. I read this board a lot, but “broke” down and had to share.

georgina
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Re: C Diff Since 2017

Postby georgina » Thu Aug 02, 2018 12:32 am

Sorry you are going trough this Bryle. Hope the FMT will do the trick , although the guidelines say that antibiotics should be stopped 48 h before the procedure , a week is too long , you can experince quite a relapse in this time frame.
I have never taken Dificid but i read a lot of posts here when people complained that this can be a harsh drug to tolerate , some had tolerated pretty well but most complained about having D during the course. Also , are you keeping a diet? Diet is very important if you want your gut to heal faster. For the pain you can use a heating pad , or try a cup of peppermint tea.
Hope you get relief soon!

beth22
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Re: C Diff Since 2017

Postby beth22 » Thu Aug 02, 2018 1:18 am

I have not heard of stopping the antibiotic that far ahead of FMT either. Check with your doctor to make sure it is correct. FMT made me feel better. Vanco gave me pain and looser stools too. After FMT those things improved, although not immediately. Hope it helps you as well.

roy
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Re: C Diff Since 2017

Postby roy » Thu Aug 02, 2018 6:41 am

I agree that stopping antibiotics a week before FMT is not normal.
BUT a Dr treating a patient for c.diff who has 1-2 diarrhea per week is not normal either (even if a test is positive).
It can take weeks or months to return to normal after treatment, your body has to recover and clear up any remaining c.diff naturally.
Possibly what your describing is IBS.
A positive test after treatment is common and NOT a reason to treat, only symptoms indicate if treatment is needed.
1-2 diarrhea per week after FMT is also common and does not indicate failure, it can take many weeks to return to a new normal so dont panic into treating unless symptoms increase substantially. (3+ diarrhea per day)

Bryle
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Re: C Diff Since 2017

Postby Bryle » Thu Aug 02, 2018 3:48 pm

Wow you guys are amazing! I will call Prescriber today and ask about that. It kinda sucks because if they put me on Vanco than all that potential good Dificid did by keeping some good bacteria is gone. Now that I finished 10 day course of it I don’t know what to do. When I call I can only work through thec NP who arranged the FMT with Dr. I have met bins once. Very confident man, but PA earlier today reiterated 1 week before.

Bryle
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Re: C Diff Since 2017

Postby Bryle » Thu Aug 02, 2018 4:17 pm

Also, hearing that it remains positive for some time is good too and th 1-2 diarrhea/week. I think I get alarmed call, they test, and they medicate.

Last, anybody know of inflammation that comes and goes in general left side Colon area during recovery. I am telling you it’s uncomfortable but not lingual. It’s constant.

MKW
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Re: C Diff Since 2017

Postby MKW » Thu Aug 02, 2018 7:44 pm

Hi, as someone who was cured by a first FMT, I wanted to tell you to think positively about having this procedure. It has an 85% cure rate. But, also, I too have not heard of anyone stopping the antibiotic a week ahead of time. I went to an FMT clinic at University of Virginia, and that doctor does several FMT's a week for years. She had me stop 48 hours before the procedure, and this seems to be what other posters have done also.

Bryle
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Re: C Diff Since 2017

Postby Bryle » Fri Aug 03, 2018 2:09 pm

Thanks for the replies! I just want to give an update. I called and gave rationale and support documentation that antibiotics should be used to pretreat until 48 hours prior. She stated that it’s actual ThedaCare, which is a huge medical network with many hospitals and clinics policy they cannot take antibiotics 5 days prior. I am still doing the FMT. What do you guys think we are only talking 7 days. I stopped Dificid yesterday and I had no BM yesterday and had formed BM and last 1/3 kinda formed pieces. Not 100% but my gut is probably healing?

Bryle
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Re: C Diff Since 2017

Postby Bryle » Sun Aug 12, 2018 6:39 pm

Hi Roy and everyone - I had my FMT via Colonscooy on 08/10/18. I held it in for 2 hours than I had released it all in 3 desperate diarrhea’s same day.

Now later that night I started feeling better and I started to have passing gas again. Also the next day all day tooting gas!

I went a whole 48 hours without a bowel movement until today I had diarrhea twice at 2:05 and 3:05pm.

I am scared and worried now and I read everywhere not to take probiotics after FMT and I haven’t started them yet. Is this normal or should I be worried?

Bryle
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Re: C Diff Since 2017

Postby Bryle » Mon Aug 13, 2018 5:47 pm

Just an update. I had formed stool today. Normal color and smell! I am sure I will have ups and downs?

beth22
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Re: C Diff Since 2017

Postby beth22 » Mon Aug 13, 2018 11:34 pm

You may have had the D at first because the laxative prep was still working or because you still had some of the slurry that was put into your colon. But, yes, you can have ups and downs and different consistencies of stool. You may have some reactions to foods that did not used to bother you as well. I was not able to tolerate dairy, fruit, or many vegetables for example. So, if you get D, don't assume it is C diff that came back.

georgina
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Re: C Diff Since 2017

Postby georgina » Mon Aug 13, 2018 11:57 pm

You will have lots of discomfort after FMT until the new bacteria adjusts into it's new enviroment. Alternations between C , D and formed stool are very common in recovery , it will take a few weeks until things start to level out. Until the irritation heals i would suggest that you stay on a safe diet.

Bryle
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Re: C Diff Since 2017

Postby Bryle » Tue Aug 14, 2018 4:32 pm

Thank you Beth and Georgina! I will keep my head high and stick to safe diet. Try that is lol. I already don’t eat dairy because I developed an intolerance at 28 after the Army. I do drink Almond milk and I now just before FMT have even chosen to eat antibiotic free meat (chicken and hamburger). So far no bowel movement since last update. The anxiety from this is horrible. I have a 2 year old and 7 month old and it’s affected the whole family.

Bryle
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Joined: Wed Aug 01, 2018 11:26 pm

Re: C Diff Since 2017

Postby Bryle » Tue Aug 14, 2018 5:33 pm

Update 2! So like clockwork 4pm like yesterday another formed stool. Just low abdominal “pings” before and after.

beth22
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Re: C Diff Since 2017

Postby beth22 » Tue Aug 14, 2018 5:36 pm

That sounds like good news. Expect ups and downs and introduce new foods slowly.


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