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Recurring c-diff with no symptoms, has anyone had this ?

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Ulcerative Colitis
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Posted 8/6/2019 1:46 PM (GMT 0)
Hi,
My daughter had a scheduled colonoscopy after her loading doses of entyvio last week.
The biopsy reports have all been coming back fine, until c-diff showed up from a biopsy.
This happened last year too, and she was put on oral vancomycin. Followed up stool and blood tests showed it was cleared.
She was not having d since before the colonoscopy, and small a amount of inflammation was found on the scope.
She has been plagued by body pains for over a year and had to stop remicade after 5 years of remission. The pains had stopped for about a month recently but are returning.

She's on ldn, plaquenil and now entyvio. Before the entyvio she was on prednisone for about 2 months because a flare was beginning, she was tapered off the prednisone, finishing with the first loading dose.

I thought c-diff would be very obvious, but both times she didn't know she had it, nothing was out of the usual set of symptoms.

Has anyone had this happen to them?

Thank you
Posted 8/6/2019 2:39 PM (GMT 0)
Sorry to hear she's struggling. C Diff can be sneaky, and act just like a flare. Some veterans here claim to be able to distinguish C Diff due to it's very fast onset and the ungodly awful smell of the C Diff poops.

I'd expect them to hold-off on the entyvio until the C Diff is cleared. As taking Entyvio now will only make the C Diff stronger (as entyvio weakens the immune system).
Posted 8/6/2019 5:52 PM (GMT 0)
The symptoms are usually quite severe. Did you ask her doctor about this? Be happy she doesn't have any symptoms, I guess.
Posted 8/6/2019 6:06 PM (GMT 0)
She’s just talked to the nurse. They put her on 2 weeks of oral vanco, the last time she had this was 2 about 2 years ago,after a trip a tropical country.

The odd thing to me now is they tested her stool before her first loading dose and after her 2nd. Both times negative. Could the entyvio cause it??

I poop - she’s going to ask if it’s ok to have her next treatment. Good idea.
Thanks
Posted 8/7/2019 11:08 AM (GMT 0)
That is so strange. I don't think the Entyvio could cause it. Does she get it at a hospital though? Hospitals are cesspools for c diff. After getting c diff in 2016, I am extra careful to wash my hands a lot and try not to try door handles, etc. when I go to hospitals.
Posted 8/7/2019 1:56 PM (GMT 0)
If your daughter test was a PCR and is positive then it just means she is a carrier but may not have active infection which means no treatment . If her toxins are positive then it means active infection but c diff causes pain and bad smelling stool. It’s rarely symptom free.
Posted 8/7/2019 4:28 PM (GMT 0)
This is so odd. C diff usually comes on strong, and second plus relapses are even stronger and more serious.

If it was me, I'd get to a GI who has some expertise with C diff and isn't diagnosing from a medical google ;-)

Better yet, an Infectious Disease physician, again with C diff experience, might even be more appropriate. Remember, unlike UC or Crohn's, C diff can be a killer! Good luck.
Posted 8/7/2019 6:42 PM (GMT 0)
I had c-diff 4 times in just over a year and each time vancomycin seemed to halt the problem.
However I got a feeling that vancomycin never really eradicated it fully.
I joined a study on FMT at our main hospital and this really cured the problem for me.
The success rate for curing C-diff this way is quite high.
I have been clear of c-diff for over 2 years now
Posted 8/10/2019 11:43 AM (GMT 0)
Thank you, she will ask about the transplant now in case this isn't eradicated..

Garyi, the Dr is a very experienced IBD dr, and is well sought after so I'm in the right place. I will question the reason that their are no symptoms, and find out why it showed up on tests.
I'm concerned about her health and transmission to others.
It is strange when I look at the graph, it was definitely not there before the entyvio infusions,
she was tested for it when the flare started, and then after loading doses, tested again during her colonoscopy.
There where no symptoms I would have expected everything you described.

Maybe it was,contracted from the sigmoid a couple of weeks before the colonoscopy??


Thank you

Post Edited (jayce) : 8/10/2019 6:26:09 AM (GMT-6)

Posted 8/10/2019 1:50 PM (GMT 0)
I just read about it at the Mayo Clinic's website & it said that not everyone needs treatment for c-diff. They can test positive & not have symptoms. I'm not sure if your daughter would qualify for FMT without any symptoms, still would be worth asking. I have had c-diff & ended up in the hospital.
Posted 8/10/2019 5:59 PM (GMT 0)
Some facts about C Diff from the CDC: https://www.cdc.gov/cdiff/risk.html

Post Edited (garyi) : 8/10/2019 12:05:32 PM (GMT-6)

Posted 8/12/2019 6:30 PM (GMT 0)
Standard treatment is prolonged use of antibiotic but doesn't do any favors on IBDers where the gut flora is already messed up.

Ask her to read this paper (or you read it if she is a minor) https://www.sciencedirect.com/science/article/pii/s0014579399007061 If she is interested in trying it out, make sure to get enteric coated NAC as other forms get easily oxidized upon exposure to the air rendering them useless. I personally use https://www.jarrow.com/product/323/n-a-c_sustain I never had C.diff but I like to cover all my bases. I can't afford to have another full-blown flare.
Make sure to talk to the physicians before using as she is on many meds. No idea if it interacts.
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