Symptoms Different BUT not gone?

[RRP]

I am so thankful for this site, and it has helped me understand.

Was diagnosed Feb 27, 2016, with PCR, had IV saline. My GI saw me for 2 minutes, said to finish meds, keep on probiotics and see him in a month unless I get worse. I finished the nasty Flagyl 3 days ago, and although I don't have watery D 15 times a day anymore, I still experience very soft, urgent, massive, C.Diff smelly, yellow BM's 5-7 times within 24 hours, even at night. Also, have had some painful bloating, but was able to calm with simethicone, allowed by doctor. I have tried numerous times to reach my doctor, but they don't return my calls and say if it's an emergency to call 911. I will keep trying, but the office is only open on Tuesdays and Wednesdays. The nearest other GI is 150 miles away and I would be on a waiting list.

YUCK. So, my question is this:

Is this normal course of recovery or do I need to seek additional antibiotic treatment?
No fever, general exhaustion, tender abdomen, lost 6 lbs.

I really appreciate others' ideas, while dealing with recovery.

[Lisa33]

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Welcome to the site, but so sorry you are dealing with c-diff. I am not convinced that the c-diff is gone, given your current symptoms, but it's really hard to tell since it's not watery D. You definitely need to be under a doctor's care who knows and understands c-diff. I am not sure where you live, but there is a list of doctors under "Doctors" by state under the Board Index. You can always go to an ER if you are feeling ill and to find out if you need further treating. It can be very difficult to know the difference between a relapse or recovery. If you are feeling ok other than the urgent BM's 5-7 times per day, you can wait and see how the next day or two goes. If things get more frequent, then it's time for a round of vanco or dificid.

So sorry that you have to deal with an absentee doctor. That is really terrible. If need be, go to an urgent care or ER for medical help in determining whether your symptoms warrant additional treating. I feel like your symptoms can go either way at this point - relapse or recovery. I'm sorry I can't be more definitive.

Lisa

[georgina]

Hi RRP
Welcome to the site , sorry you are struggling.Like Lisa said , it seems that you may not be Cdiff free , the frequent , loose smelly BM and at night indicate that you may not be cured but to be sure of that you need to get tested , although if you test to soon it may come back false negative.There are many strains that are Flagyl resistant these days .Stay on a bland diet for a few days and try some probiotics like Saccharmyces boulardii or Lactobacilus GG .And about your doctor , she seems a bit disinterested , maybe you should look for another one , a doctor that knows how to treat CDiff.Hope you feel better soon!

[RRP]

Thanks for the prompt ideas of support. I was able to get in to dr today, now have oral thrush. Going on Vancomycin with taper, as well as continue VSL#3DS and Saccharomyces probiotics, as he doesn't think infection is gone. My GI office is simply inept and it takes many contacts to get prescriptions sent to the right place in the right amounts and strengths. I hope they finally got it correct, or my insurance won't cover. $$$

Couldn't get a straight answer, so I'll ask:

How long until diarrhea should subside after beginning vanco? Days? Weeks?

Also, he said the thrush will go away on its own. Will Vanco make it worse?

Sorry, I know I should be able to get these answered medically, but need to know others' experiences so I don't seem like a hypochondriac.
Thanks...

[iamsick]

Hi RRP,

Sorry you are still suffering through this awful illness. I too was on Flagyl and then was prescribed Vanco because the Flagyl did not eradicate the cdiff. My D slowed down about the 4th day and each day was better. It was a slow process for me but today I am just 2wks shy a 1 year recovery. You'll get there. It just takes time. Each one heals at a different pace. As for the thrush, I did have a mild case, took nothing and it just went away on it's on. Wishing you wellness:)

[georgina]

I had trush from Flagyl but when i started Vanco it did go away.

[Lisa33]

I also relapsed on Flagyl, and was cured by Vanco, so hopefully you will be the same. It's also great that you are doing a taper, which gives you an even better chance of kicking c-diff's butt for good. You are doing everything right. I think around Day 4 of Vanco is when I really saw great improvement. Vanco was like night and day for me from Flagyl. I felt terrible on Flagyl - terrible nausea, no appetite, fatigued, foggy, and mild oral thrush as my tongue was white and furry feeling. I had zero side effects on Vanco. It felt like a God send compared to Flagyl.

Good luck and hope you feel better soon.
Lisa

[RRP]

Many thanks to all! You are very kind and helpful...I am hopeful and already know it was necessary to start the Vancomycin, having slept through the night without D for the 1st time in a month after only 2 days of treatment. Flagyl was wicked and didn't even work!

The oral thrush is not any worse, so I'm fine with that for now. Going to keep on the probiotics, spacing between antibiotic, and wait.

God Bless you for taking the time to support and inform with your experiences.
RRP

[Lisa33]

I'm so glad the vanco is helping you. Thank goodness. Wishing you continued improvement. Keep us posted.

[georgina]

Hi RRP
I'm glad you started Vanco and you are already seeing improvement.I hope it does the trick for you and you will be cured soon.

[hledgess]

Sorry you're not well.. I had thrush as well from flagyl .. I used coconut oil and swished it for as long as I could tolerate and brushed my tongue well and it went away without more medicine .. Or maybe you'll be lucky n it'll go away on its own.. I also read s. Boularrdi. Can help with thrush too

[RRP]

Thank you all for your ideas and support. You have been exactly right and it is very comforting to be able to dialogue with others who have experienced this complicated disorder. To date, the Flagyl-induced oral thrush is almost gone and unformed BM's remain, 4-6 daily, not watery, not during night. No fever, just tender, gurgling "guts" and tired, generally. My question:

After 14 days of Vancomycin 125mg, four times a day, I am to begin a rapid taper with three days of three times a day, then three days of two times a day, then three of days of one a day, then off. I am concerned, as I haven't gotten "better" really yet, on the four times a day. I also take Saccharmyces boullardii and VSL##DS, drink small doses of unflavored Greek Kefir, as directed by GI. He had me reschedule in 3 MONTHS. So, here I am, not knowing what to expect, what to accept without additional support as I begin the taper.

Should I forge on with the plans unless watery D 3 times a day for 3 days? I am so afraid of having to get emergency rehydration as this has happened to me several times in my life. I was hospitalized for 3 days once while nursing, for example. Seems I have a low threshold to being dehydrated, can't replace fluids fast enough orally.

Many thanks for ideas and those shared experiences.
RRP

[NanciT]

Hello RRP,
I think many including myself become concerned as we start a taper. I felt the same with my Vanco taper and did watch for Diarrhea 3xday/3days. As far as dehydration, I had a difficult time with this throughout my treatment for CDIFF. I started drinking "Smart Water" with electrolytes and that did help but if you are prone just watch for signs and call your GI. I kept a close watch on my Potassium(through blood work) though out this period also. Make sure your GI is aware of your history of dehydration also.
It is a process as you taper and hopefully you will start to feel better soon!
NanciT

[RRP]

Thank you ALL, all suggestions were spot on and very helpful. Update:
Finished Vanco taper one week ago, doing better. Added small amount of soluble fiber supplement and BM's are more formed.

3 days ago: UTI! Tried to treat with lots of water, green tea, cranberry capsules, D-mannose, probiotics, to no avail. Threw in the towel today and went to Urgent Care who confirmed severe UTI and sent culture/sensitivity in. I brought in the list from this site of least offending antibiotics, was prescribed Bactrim. GI had initially said that I should always take Vanco with any other antibiotic, so I have a request in for that refill, yet to be sent to the pharmacy.

I am concerned that C Diff will return, but feel I really have no choice at this point but to try the Bactrim.

Your insights and experiences would be most appreciated.
RRP

[Lisa33]

There is another poster, Ismaila, going through a UTI at the end of her vanco course right now as well. Her culture came back positive for e-coli. You may want to read her threads as there are a lot of replies from posters with experience with UTI's. You can also do a search on UTI's and a ton of posts will come up. UTI's seem to be very common among females who have taken vanco. It seems that vanco causes bladder issues. If you test positive for e-coli, see if you can take macrobid as it is a low offender, and many have done well on it, without a relapse.

Also See:
viewtopic.php?f=4&t=671

Hope you feel better soon.
Lisa