Recovery Symptoms & Duration?

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Rusty S
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Recovery Symptoms & Duration?

Postby Rusty S » Thu Mar 08, 2018 4:41 pm

I’m a 34 year old male, lurking here since November 2017, finally posting for the first time. I’ve searched the site with mixed results, so here I am with 3 questions for you all. First, allow me to give a brief overview of my pathology...

I presented to urgent care in late September 2017 with mild but distracting/ongoing lower abdominal discomfort/irritation, visible mucus (M) in stools, and increased frequency (3-5x/daily), though not full on diarrhea (D). Onsite blood work revealed white blood cell (WBC) count slightly elevated, but those symptoms alone were inconclusive. I was told to come back if it didn’t resolve in a week to 10 days. I randomly bought/tried one of the many probiotics from the grocery store, in which symptoms became worse during the first half of October, including increased M and frequent orange fluffy stool 8-10x/daily. As a result, I scheduled a Gastroenterologist appointment. He ordered a list of labs and a Colonoscopy. The Colonoscopy happened first (on Halloween with the staff in costume - not even kidding) which came back clear; but the lab came back positive for C Diff toxins A & B via PCR. I took generic Flagyl (Metronidazole) for 14 days and apparently tolerated it better than anyone else on the face of the planet (I was on it, with a cold, at Universal Studios in Orlando Florida, and the only symptom I had was discolored urine). I felt fine for the rest of November, but in December I started having ups and downs of colon irritation and malaise. I returned to the Gastroenterologist, in which he told me that if I wasn’t having D or consistent/visible/increased M, that I just needed to be patient; but that he’d give me a lab order for a C Diff stool test that I could use if I started having obvious symptoms again. He advised me to begin taking Florastor until everything calmed back down, and I have been 2x/daily ever since, but still have cycles of discomfort with varying stool consistency. I don’t have D per se, and only have bowel movements (BMs) once or twice a day, but during these distracting discomfort episodes, it ranges from ”softer than normal” to “normal formation with a small amount of M”. This leads me to my questions...

1. How long can bowel function be affected after being treated for CDI? I have two family members that are nurses, and both of them said back in December it can be a couple of months before you feel normal again. I took Metronidazole in November; it’s 4 months later now. Is this par for the course? Seems a bit longer than the 8 weeks I read about.

2. What symptoms are within the range of normal after treatment? I’m aware some have post infectious irritable bowel syndrome (PI IBS), but my situation seems more like a mild version of a mucosal membrane infection; not unlike in your nose with minor inflammation, sensitivity, and increased mucous production. Is this perhaps an immune response to residual spores that my body still needs to kill off as they try to become “active”?

3. Is testing to confirm cure useful? Again, I have the lab order as backup, still, but I was told the PCR test is so sensitive/specific that if you still had any residual spores, or are colonized with C Diff in small amounts from the CDI, that there’s a good chance it would come back positive, regardless. Basically, don’t bother unless I have ongoing D or lots of M. If that’s the case, though, then any C Diff test after D would theoretically return positive, even if it was caused by something else, right? Then again, you all seem to test negative despite having symptoms during recovery, so, that’s why I’m here. It’s taken a toll on me psychologically and has been a lot of information to take in.

Thanks in advance!
Last edited by Rusty S on Wed Mar 14, 2018 12:27 pm, edited 3 times in total.

NanciT
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby NanciT » Thu Mar 08, 2018 11:12 pm

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

I agree, I have not fond anyone that tolerated Flagyl so well! We have had poster who take one course and do recover. It can take some time
My advice always is if there is any question especially about symptoms that continue, return to the GI
Most GI's DO NOT TEST after CDIFF. I did not test until I was a year Post recovery and had D for 4 days.
Follow up, and review your current symptoms. Many including myself get Post IBS which really is an irritation but that needs to be diagnosed my your GI
Recovery can take time, I really stuck to a bland diet. I am not sure where you read 8 weeks, you will find several members on this site including myself that have taken far longer.
The big thing is to make sure nothing else is going on, once that is established there may be a new "normal" for awhile
I hope you feel better soon
NanciT

Rusty S
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby Rusty S » Fri Mar 09, 2018 11:31 am

By 8 weeks, I was just referring to the 6-8 week post antibiotic period I've seen consistently discussed. To be fair, I'm not fully sure if that's the prime window for relapse, or the time period the colon will be the most prone to upset, some combination of the two, something else all together, etc. As mentioned, I'm relatively new to all this and it's been a lot of research. I even write down a list of questions before doctor visits and document approximate times symptoms start/change. Also, I've had quite a bit of gas during this post Flagyl, Florastor period. This leads me to another related question...

Is gas normal with Florastor even after the first few days? I've had an increase ever since I started it right after finishing the Metronidazole. I'd hate to stop taking the Florastor to find out considering it supposedly counteracts A & B C Diff toxins during recovery. After 4 months, I'm just ready to be done with this so I can get rid of the lingering anxiety of whether I'm going to relapse at some point. :\
Last edited by Rusty S on Fri Mar 09, 2018 3:09 pm, edited 1 time in total.

NanciT
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby NanciT » Fri Mar 09, 2018 2:18 pm

As far as the probiotic, Florestor is the one alot of people use, I could not tolerate it and switched to VSL#3. Talk with your GI about it
The anxiety tends to go along with this illness, as far as relapse my personal experience was between 2-4 weeks. It does vary, make sure to clean the bathroom etc with bleach so there is no reinfection. I also washed all my clothes in bleach during this time.

The Post IBS can last awhile, make sure to discuss this, there are medications that can help
I took Levsin and still continue to take it now on and off.

One thing you will find throughout this site, no two GI's think alike. They all have different opinions and it can be very confusing
NanciT

Rusty S
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby Rusty S » Fri Mar 09, 2018 3:18 pm

Hmm. Regarding what you said about your relapse being between 2-4 weeks, that's the time frame after Metronidazole that I started having the spells (a week to 10 days at a time) of discomfort accompanied by cycling soft stools and small but present M. However, that's been the case intermittently for 4 months now. I do know that if I'm under a lot of stress (be it physical or psychological) that exacerbates it. Maybe the effect stress has on the immune system? I'm going to my General Practitioner (GP) on Monday for an unrelated appointment, so I'll get his (3rd, after urgent care and my GI) opinion while there. Like you said, doctors seem to have varying experience with C Diff. My GP has been my doctor for the longest consistent amount of time (10 years) and I'm sure he's encountered it more than once in his career. Thank you for your responses thus far, by the way. This has been easily the most enduring illness I've ever had in my life; I just want to feel normal again.

NanciT
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby NanciT » Fri Mar 09, 2018 5:56 pm

You WILL get there, nearly everyone states the same thing, most difficult, unrelenting and causing fear. There is a GUT/Emotional relationship. We recently had a researcher that had a survey about it, we are awaiting their results. I tell every doctor and Nurse I deal with to beware of this illness, the medical community has no idea how very difficult this is. I am sure I have had some worried, but that is OK.
NanciT

itsnotez
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby itsnotez » Fri Mar 09, 2018 9:16 pm

I just finished Flagyl dose for 10 days 500 3x day and had NO side effects. My doctor was surprised saying that taking it is normally hard on some people. The only possible side effect of this was that I would have severally low low blood pressure in the mornings. Suffering from many painful autoimmune disorders and taking many pain medications I was also surprised that my joints hurt terrible! Especially in my hands. Not sure if it was a combination of flagyl and other drugs I am on.
I will follow this post since I would like answers to the same questions as this members post.

13kwoods
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby 13kwoods » Mon Mar 12, 2018 10:08 am

Hi Rusty,
I just finished Flaygl. Unlike you though, I was sick the whole time up till the last day, when I finally started to feel some what decent. 6 days off and my BM's are still baby poo yellow, mucus, and loose. Not quite the saw dust I had previously. I too am taking probiotics, Florastor and kefir. I attribute the reduce # of bms to these probiotics.
Bloating and gas have increased and vomiting has returned along with rapid heart rate, nausea, and gut pain on left side and lower abdomen.
Calling my GI today.
My opinion is the flagyl suppressed the symptoms only.
My family and friends advice to me and mine is to you: "stay on them"
You have to be your own advocate.
These docs (no offense to docs) but they are overworked and see too many patients to give each individual the required focus and personalized care they need. Be insistent and persistent!

MKW
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby MKW » Mon Mar 12, 2018 7:04 pm

Hi, I wanted to post this updated info here for you all concerning prescribing Flagyl for C Diff.
The new IDSA/SHEA recommendations are not to prescribe it unless Vanco is NOT available.
I was given Flagyl my first two rounds, both failed.

http://www.idsociety.org/New_Recommenda ... _2018.aspx

Rusty S
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Re: Recovery Symptoms & Duration? (New Member 1st Post)

Postby Rusty S » Tue Mar 13, 2018 12:02 pm

I asked my GP about C Diff recovery yesterday during my otherwise-unrelated visit. He said that two things; one of which concurred with what I’d researched, and one that didn’t.

1. The concurrent statement: My GP said this is A) far from the first time he’d seen a community acquired CDI in a patient with no known risk factors, and B) that it wasn’t an uncommon phenomena to still have digestive upsets for up to 6 months after treatment, in his observation (I’m assuming some longer, as evidenced by this forum).

2. The contradictory statement: He said at 4 months into recovery, if my symptoms were distracting me from daily activities, there would be benefit in testing to confirm negative, and if positive, he'd recommended another round of treatment despite not having D or abnormally increased M. Not sure where to go with that one.

Rusty S
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Posts: 36
Joined: Thu Mar 08, 2018 3:23 pm

Re: Recovery Symptoms & Duration?

Postby Rusty S » Tue May 15, 2018 11:17 am

Recovery follow-up FYI: I’m now 6 months into recovery and am *almost* normal again. While the up/down waves still come and go, they’re getting milder and more sparse. At worst, I feel about 80% recovered, and at best, I feel >90% recovered. I’m assuming this means 1) my gut flora is almost back to where it should be, and 2) the majority of any residual C Diff spores must’ve already activated and been killed off. I stopped taking the Florastor about two weeks ago and the chronic flatulence I had gradually went away over that same period.

To everyone currently going through all this: Don’t lose your patience. It’s easily the most stubborn infection I’ve ever had and I can totally empathize with what you’re going through. After treatment, you’re potentially looking at *months* of ups/downs and being prone to GI upsets, but you’ll eventually get through it. It’s just so unpleasant to have that stupid colon irritation feeling for so long that it gets emotionally tedious… but you’ll win. Hang in there and try to look at the long game. :)

Rusty S
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Posts: 36
Joined: Thu Mar 08, 2018 3:23 pm

Re: Recovery Symptoms & Duration?

Postby Rusty S » Tue Sep 04, 2018 3:03 pm

UPDATE: I'm now 10 months into recovery and would like to give a timeline of my experience so that others will hopefully be relieved if they encounter the same. I can break this down into what I'll call "The Sixes"...

* 6 Days: The number of days after finishing Metronidazole before I had my first wave of recurring discomfort, food sensitivity, and abnormal bowel habits.

* The Following 6 Days: How long it took for the first wave of discomfort, food sensitivity, and abnormal bowel habits to subside.

* 6 Weeks: The amount of time recommended to finally test negative (though spores may still remain).

* 6 Months: The duration of multiple/repeated waves of discomfort, food sensitivity, and abnormal bowel habits, decreasing in intensity each time.

* The Following 6 Months (up to 1 year mark, projected): The duration of continued flatulence and occasional slightly elevated mucous production following other symptoms subsiding.

...This has been the craziest thing. I took antibiotics, yet it'll have taken a year to fully recover from. I never in my life knew there was an infection that would take so long to get rid of and wouldn't wish this upon anyone. However, this forum provided much comfort during the darkest days, and for that, I'm truly grateful. If anyone every needs any info, please feel free to reply or message me. Thanks!


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