Relapsing again I think?

This forum is for discussions related to C. diff. including symptoms, doctors, medical advances, medications, If you are a new poster (joined within the last month), you can post more often for two months from your date of joining. After that time, one post per day only about "you." You can post more often to support others. Post other topics in Free Form Discussion and Chat Forum.
Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Relapsing again I think?

Postby Ali-Mar » Sat Jul 04, 2020 4:04 pm

It has been a very bad day, severe cramping and watery diarrhea, 3 BM last two were 5 mins a part and mainly water and some mucus. Sorry for TMI.

I am 14 days post Dificid taper. This is very stressful, why always happens on the weekends where there are no drs

I am on bland diet and haven’t eaten anything new in last 48 hours , so it cannot be food. I don’t know what else can be beside a relapse.
Last edited by Ali-Mar on Sat Jul 04, 2020 5:16 pm, edited 2 times in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

DaveMal
New User
Posts: 25
Joined: Sat Jun 27, 2020 1:24 pm

Re: Relapsing again I think?

Postby DaveMal » Sat Jul 04, 2020 5:11 pm

Sorry to hear you're having a bad day, Ali-Mar. It's completely understandable this would be discouraging for you. Still, try to relax and avoid jumping to conclusions just yet. Hope you are feeling better.

David

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

Re: Relapsing again I think?

Postby NanciT » Sat Jul 04, 2020 8:26 pm

I am sure I have written this same thing in 2015 as I recovered. Now I am recovering again and I get bad days. I also stick to a very bland diet but some days are just "off" for no reason.

I have tried to figure it out but so far have come up with no answers. I try not to panic and let that fear take over.

It is not easy. I have had days where I have gone 4x, then days when I go 1x. It is all over the place, I have to remind myself I was exactly then same 5 years ago as I recovered.

Hang in there, hopefully is was just a bad day

NanciT

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Sat Jul 04, 2020 8:46 pm

Thank you Nanci, I really hope it is just bad day, but I don’t normally have severe watery stool on my bad days, just mushy

It is not the number of bm that is scaring me and causing me to panic. It is the watery d and mucus. The last BW I had was all water hardy in stool in there and had som mucus. I haven’t had any BM in last 5 hours which is giving my some hope
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Sun Jul 05, 2020 10:34 am

Called the on-call dr yesterday, he said the lab does tests for inpatients only on the weekends, I have to wait until Monday or go to urgent care.

He prescribed dificid for 10 days and said take it if you don’t get better by Sunday (today). I already picked up the med but I think I should try to wait until Monday to do the test frist. I was on Dificid tape for almost 50 days ( took 3 bottles, 60 pills total). Took the last pill on Jun 20 ( 15 days ago) , I really don’t want to take any more antibiotics if I can.

At my GI request I sopped taking Florastor last week. He said Florastor is good when you have on active CDI. I was on it for 3 months. I take 500 mg ( 2 pills) in AM and 2 pills at bight. I stated taking it again yesterday and it seems to help quite a bit. Haven’t had any BM in last 17 hours since started taking Florastor. But still my gi is making so much loud noise, it kept me up most of the night. I have no appetite and lost 4 lb in last 2 days.

I just hope I can hold off taking Dificid until I can test on Monday. My GI hospital ( Scripps) does FMT for inpatients only due to short of openbiome supplies I might have to change to GI at Sharp or UCSD
Last edited by Ali-Mar on Sun Jul 05, 2020 12:52 pm, edited 2 times in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Caligirl
Contributor
Posts: 63
Joined: Sun Mar 03, 2019 6:48 pm

Re: Relapsing again I think?

Postby Caligirl » Sun Jul 05, 2020 11:34 am

I’m obviously not a doctor, but it’s very surprising to me that your GI is adamant about not taking Florastor. There are a lot of doctors that think it is only necessary during an infection (my dr included), but even he said to continue taking it for 6-8 weeks after my treatment ended and to take it again anytime that I needed to take antibiotics. If it is helping you, maybe continue taking it for a while. A lot of people take probiotics every day when they aren’t sick just to help with gut health.

poppy86
Regular Contributor
Posts: 197
Joined: Sun Mar 29, 2020 10:23 pm

Re: Relapsing again I think?

Postby poppy86 » Sun Jul 05, 2020 2:25 pm

I'm sorry you're having a rough time Ali-Mar. I really hope it's just an off day and not a relapse and that you're feeling better very soon.

Bobbie
Administrator
Posts: 12688
Joined: Sat Aug 06, 2005 8:00 pm

Re: Relapsing again I think?

Postby Bobbie » Sun Jul 05, 2020 2:35 pm

Ali-Mar,
Probiotics are a "maybe " thing - might help, might not.. In premise, it sounds like a good idea to replace good bacteria. In reality, however, stomach acid kills many of the good bacteriak before they get to the gut.

Probiotics are like the now popular face masks - what type, how much protectiom, etc? Lots of different opinions.

If you think probiotics help you, take them. Lots of info on the site about probiotics that people swear by.

Keep a food diary, The mind sometimes "disremembers" especially when stressed.

Good luck. Monday is tomorrow.

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 2:45 pm

All thank you for your kind notes! It looks like I have relapsed see my test, it says positive :-(

To be frank it is very confusing. All this started on Saturday, Sat AM, I had my regular one semi-formed bowel movement of the day. But around noon, I had severe cramps that resulted in two bowel movements, 5 mins apart. The last one being WD and mucus. I took two Florastor right away and 30 minutes later I noticed some improvements, took two more at night, and have been taking it since. Sunday I had one bowel semi-formed and some mucus. Today( Monday) I had one bowel loose and mucus. And one bowl only small amount mucus no stool. The DR called me and said I am positive for ToxinB and should start taking Dificid if I have any, which I do. But I haven't taken any yet.

Here is the copy and past of my test result; what is QL? Is this a Toxin test or Gene test. It looks like this is to test if I am a carrier or not? I realize this is not a medical site, but I thought to reach out since most here have more experience than this GI dr. I had some old containers from my old GI Dr, whom I don't trust when it comes to C Diff. I know, but it was the quickest way to get tested.


CLOSTRIDIUM DIFFICILE
TOXINB,QL REAL TIME PCR DETECTED
The stool sample is POSITIVE for toxigenic C. difficile.
This result is suggestive of C. difficile infection
(CDI) if accompanied by appropriate clinical symptoms.
Simultaneous testing does not identify a genetic marker
of the hypervirulent 027/NAPl/BI strain of toxigenic
C. difficile.

This test is for use only with liquid or soft stools;
performance characteristics of other clinical specimen
types have not been established.
This assay was performed by Cepheid GeneXpert(R) PCR.
The performance characteristics of this assay have
been determined by Quest Diagnostics. Performance
characteristics refer to the analytical performance
of the test.
For additional information, please refer to
http://education.QuestDiagnostics . com/faq/FAQl36
(This link is being provided for
informational/educational purposes only.)
Last edited by Ali-Mar on Mon Jul 06, 2020 3:43 pm, edited 2 times in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapsing again I think?

Postby roy » Mon Jul 06, 2020 3:34 pm

Many if not most would test positive by this test for months after having c.diff.
it's the PCR that amplifies and detects the DNA marker that c.diff leaves in our gut.
it detects the tiniest amount.
It goes on to say " if accompanied by appropriate clinical symptoms"
Those symptoms are frequent watery D!
This is EXACTLY why the guidlines say never test to see if it's gone!
ONLY symptoms say if it's gone and your symptoms are not typical of a c.diff relapse.
You have taken a hell of a LOT of treatment, much more than an experianced Dr would recomend for the stage you were at in your c.diff infection so dont be surprised if you have off days or very off days as your gut recovers from the onslaught you put it through.
My experiance from the 13 years I have been on this journey is that the LEAST amount of meds that do the job is better than going straight into months of daily antibiotics.
A 10 day course of dificid is shown to spare the gut flora but no trials have been done on taking it for several months!
Another round of meds might just hit the reset button and you have to start recovery all over again.
Obviously if it gets worse fast you might need treating but dont just judge the need to treat by a test result.

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 4:08 pm

Thanks, Roy, yes, agree.I have taken too many AB for this in the last 3 months. I am also thinking not to treat unless my symptoms get worst or the Toxin test result comes out positive. At the same time as the PCR test, I dropped off two samples, the other sample was for culture test,to test for Toxin, the container kit has the red liquid in it, the result is not back yet.
Last edited by Ali-Mar on Mon Jul 06, 2020 4:53 pm, edited 1 time in total.
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

roy
Administrator
Posts: 4193
Joined: Sat Aug 02, 2014 1:05 am

Re: Relapsing again I think?

Postby roy » Mon Jul 06, 2020 4:21 pm

Even if a toxin test is positive you still treat on symptoms alone!
Toxins are not the disease, neither is the bacteria.
It's the host response to toxin that causes the disease.

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 4:52 pm

Thanks, Roy - that great to know
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 6:38 pm

For what is worth, forgot to mention, for last 3 days in addition to mucus, I have had constant abdominal pain and pressure around middle, some distend /enlarged, sensation of fullness, no apatite and last 4 lbs in 3 days..

This beast is unbeatable, feeling hopeless and helpless at this point, all my research indicated the odd of relapsing after Dificid taper was very small around 5% ... none of this makes any sense. I was counting so much on Dificid

My new UCSD GI dr has no opening until Sep 15, I will go crazy until then.. waiting to hear back from her nurse
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020

Ali-Mar
Long Time Contributor
Posts: 463
Joined: Sat Mar 21, 2020 4:17 pm

Re: Relapsing again I think?

Postby Ali-Mar » Mon Jul 06, 2020 8:57 pm

It starting to look like a relapse more and more- just had a BW, that was only mucus :-(. This has been my most common C Diff Symptoms. i will wait one or two more day before starting treatment, see if it get worst tomorrow
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020


Return to “General C. diff. Discussion”



Who is online

Users browsing this forum: No registered users and 20 guests