Vanco after Flagyl- deplitating urgency to urinate Help!!

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Sempurna
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Vanco after Flagyl- deplitating urgency to urinate Help!!

Postby Sempurna » Thu Sep 15, 2016 2:16 am

New here but you have already been my thread to sanity. Thank you.
38 yo female acquired C. diff from 2 rounds of Cipro for uti and again for an arm infection. Diagnosed 2 weeks ago and dod 2 weeks of flagyl. 2 days later the symptoms were back and worse. Based on the information here, I asked my Dr. To put me on Dr. Kellye's in RI protocol and he agreed, so I've been on Taken 3 Vanco so far today on day 1 of the whole 8 week journey. My guts stabilized right away and I've been drinking lots of water.

Though I have lots of questions my most burning is the urgency to urinate I am experiencing. A few days ago I felt it while on flagyl and immediately took d mannose like crazy and it went away plus I was ending my course of meds right at that time. Now that I'm only one day back on meds and no end in sight, it's back and I can't get any sleep and dying with this sensation and don't know what to do. I have been taking d mannose daily all Week, including this am. I am deathly allergic to Macrobid. I see that this can be a side effect of vanco and can't possibly manage 8 weeks let alone one day. I was balling yesterday with all the active Diarrhea and the general decline in my life. I've lost 12 pounds. Does dificid have this side effect? Can I beg to go to FMT? Does it even work without the tapering before hand?

What do I do? I'm losing it? (And I mean that in a don't give me advice but your experience kind of way : )

georgina
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby georgina » Thu Sep 15, 2016 3:01 am

Sempurna
Welcome to the site , cheack the first forum for rules of posting.
So sorry you are dealing with Cdiff. I was on Vanco for months and never had UTI symptoms from it , although there are people who complained about that. If you feel like Vanco isn't a option you might wanna discuss Dificid with your doctor. I don't know if Dificid has this side effect because I was never treated with it , but I read many posts about it and it seems that it can be a bit harsh on you gut.
Even if your doctor accepts to perform FMT you still need to prep with meds if you want it to be successful. I had a nasogastric FMT without the antibiotic prep and it failed.

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Thu Sep 15, 2016 1:24 pm

Thank you for the info!

Here is my plan today:

GI Specialist cannot get me in sooner than Oct 5th. Unbelievable. I was sobbing on the phone even just asking.

I want to make an appointment with my GP but he is booked until Tuesday am. I can't take the Vanco becuase if these uti symptoms progress, I cannot take Macrobid and I certaibly cant take another antibiotic which is how I got C Diff to this extent in the first place!

I have a skype consult this afternoon with a Naturopathic GI in Portland, OR (3 hours away so doable) who does fmt series.

So I'm in the wood between the worlds. And I'm not coping well. Today I have barely made it home from dropping the kids at school but my frequent BMs have not been painful and have the characteristics that they did when I first started Flagyl maybe better. But if I don't continue with some meds soon, the c diff will progress! If I take the vanco, my uti will progress and then I'm back to zero. I cant get into a GI or GP today- do I go to the ER?

I'm taking Michelle Moores protocol today because its better than nothing ( I hope) drinking kiefir (sp) and taking probiotics ( Florastor should come today also), d mannose and unsweetened cranberry for my bladder and eating no other carbs. I cant think of anything else I can possibly do. I can't seem to get any help within the system. I'm losing all my courage and hope. I see now that this is going to be a war, a lengthy, ugly war with this bacteria.

roy
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby roy » Thu Sep 15, 2016 2:06 pm

Vanco will not cause a UTI.
It might cause an irritation that mimics the feelings of a UTI.
You should follow your Dr's advice and treat the C.diff.
If you did opt for an FMT the normal prep for it is a course of vanco so that the c.diff is reduced before the new bacteria are seeded.
If I had to make the decision and I had frequent watery D I would take the vanco.

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Thu Sep 15, 2016 2:46 pm

I wish I could but I couldn't sleep at all for the burning and need to urinate. I can hardly eat so if I hardly sleep, I don't think I can survive. I've cried all morning. I'm losing my courage.

roy
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby roy » Thu Sep 15, 2016 3:15 pm

Are you having frequent watery D at least 3 times a day?

It's probably not the 1 day of vanco causing the burning.
Some Dr's prescribe vanco alongside a UTI med in an attempt to prevent a c.diff relapse.
If you have c.diff and it's causing frequent D you can't ignore it.
In fact you would not be able to ignore it!

Jill79
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Jill79 » Fri Sep 16, 2016 7:17 pm

I've also been experiencing some burning, frequency and pain but I'm now almost three weeks off Vanco after I relapsed after Flagyl. "Bladder pain" is listed as a possible side effect of Vanco, but I tend to believe that everything gets irritated down there when fighting an active infection. Your colon could be irritated and swollen and pressing on your bladder or urethra, but I would definitely see your GP Tuesday and GI in October (even if you're feeling better).

The one night I had a lot of burning and pain I used an ice pack wrapped in a towel down there for 15-20 mins along with some Tylenol or Ibuprofen and it helped me get some sleep. You definitely should drink a lot of water to stay hydrated and help your bowels but are you able to cut down before bed and only sip if you are thirsty? Again, not medical advice, just some things that seem to help me.

Please let us know what your doctor says. I plan on seeing my OBGYN as soon as I can get an appointment to rule out a UTI, YI or bacterial infection.

Bobbie
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Bobbie » Sat Sep 17, 2016 1:13 am

You might try a heating pad for,the cramping and pain. Get one with an auto shut off. It won't "cure" anything but the heat is soothing.

Remember, everyone on this site is suffering. You are not alone.

If you continue to have UT problems, see a urologist.

Best to you. Hang in there.

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Sun Sep 18, 2016 2:56 pm

Thanks all! Here is where things stand today:

UTI Iike symptoms remain even off the meds the last few days. Because I stopped the meds, the C.Diff has fully returned today. I received a script for Dificid on Friday but no one (at all) has it in stock in the area and it will arrive sometime tomorrow. In the meantime, I am taking the red pills for the uti symptoms- (culture came back neg).I cannot get into the GI earlier despite my tearful begging and my Dr. Calling but that is how I got the dificid.

I have had several episodes of WD this am and had the Vanco in my hand but my bladder has been almost worse to my mind and so I am resolved to wait it out until the dificid comes tomorrow. The Flagyl and Vanco hit my system pretty hard and now I have thrush too. I have no idea why he didn't give me diflucan as I asked but some tablets I have to suck on 5 Xs a day for 10 days!! Like I don't have enough to take : (

I have an appointment with a GI/Urinary practice Naturopath tomorrow am to try to get some support for my system while I go through this. I'll take the dificid the moment it arrives. And I should also hear tomorrow when I start FMT series at Bright Medical (They are stacked and she needs to work with the lab to see when).

In the meantime, I am eating very few carbs, drinking d mannose powder for urinary support, taking ultimate flora, sachrydes b (sp), Olivirex x2 x2, Biocidin tincture, eating Bulgarian yogurt that tastes like lemons and kefir, vitamin C, Vitamin D and those nasty lozenges, and lots of water. I bough the hospital cleaner wipes and wipe the bathroom like crazy. But I've been doing all this for a while and I wonder if it helps at all. I'll never know, I guess.

The C Diff definitely responds to Vanco but at a price for sure. I'm praying the Dificid at least stays contained in my GI until I can get to the FMT series. Mentally, I was at the end of my rope on Thursday. I keep telling myself that I WILL BEAT THIS and sooner than later. Meanwhile, I found a show to binge watch and try to distract myself!

But what I can say for certainty is that without this forum, I would have been lost. Thank you!

roy
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby roy » Sun Sep 18, 2016 4:24 pm

Those things you suck on for thrush will kill the S boulardi, any thrush med will kill it.
Your taking a LOT of suppliments!
None of them are probably needed and can cause GI upset.
What do you mean by "red pills"?
Check if the yoghurt is natural live yoghurt, most flavoured yoghurts are not as good as the yucky natural ones.
One spoon of kefir has more live bacteria than a whole bottle of probiotic pills.

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Sun Sep 18, 2016 5:03 pm

roy wrote:
> Those things you suck on for thrush will kill the S boulardi, any thrush
> med will kill it.
> Your taking a LOT of suppliments!
> None of them are probably needed and can cause GI upset.
> What do you mean by "red pills"?
> Check if the yoghurt is natural live yoghurt, most flavoured yoghurts are
> not as good as the yucky natural ones.
> One spoon of kefir has more live bacteria than a whole bottle of probiotic
> pills.
Oh no! Ok, good thing I can see the naturopath tomorrow to find an alternative for the thrush.
The red pills are the peridium (Sp) that numbs your urinary tract and makes your urine orange in the process. I think I'm going to stay the course until tomorrow on the supplements (all are my regular dr prescribed regimen except for the Olivirex and Biocidin). I eat nothing raw, nothing with 'ose' in it besides the d mannose and have been living on green juice, chicken breast, sautéed squash, avocado and boiled eggs, cultured cottage cheese, plain Bulgarian yogurt (says it's mega probiotic) and kefir (although I admit to using the fruit ones because I mix in the Bulgarian which is so sarse!) yesterday, I tried a little quinoa. I'm just trying my very best not to feed the beasts while the meds kill them. Maybe I'm just making it harder on myself but it probably helps my mind to think I'm doing something.

I'll report back tomorrow which should be a big day- dificid, naturopath and fingers crossed an FMT schedule.

NanciT
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby NanciT » Sun Sep 18, 2016 10:31 pm

Sorry you are going through all this but happy you will see the doctor tomorrow and also start the Dificid. You don't want the CDIFF to go untreated.
I had terrible bladder symptoms from a 3 month Vanco taper. I saw a urologist who consulted with others and my GI. FOr me, it was an irritation that continued due to the Vanco. I had all the symptoms of a UTI with no infection. I did get a UTI twice while on Vanco but that may not have been the cause. The symptoms just continued. I was not able to take pyridium, I had taken it years ago but it made me very ill. We tried a few other medications but it eventually went away.
Dificid has cured many including me, hopefully that will take care of this for you.
Hope you feel better soon
NanciT

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Tue Sep 20, 2016 11:41 am

NanciT, I have no idea how you did that for months! You are supernatural! Thankfully, my uti symptoms have diminished greatly. It had to be the Vanco. The Dificid finally arrived yesterday and the insurance picked it up. HOWEVER, I saw a naturopath yesterday who consulted with her mentor- a renowned bladder naturopath and she called me back and said that given my compromised state (I passed out in her office which was scary), they were really concerned that the Dificid would be too rough on me and they really felt that I should take Xifaxan instead. She feels like there are other pathogens at this point and better to beat them all back a bit. They also feel that I need FMT immediately and she called the FMT clinic to urge them to get me in. No news on that yet. The insurance needs to auth the Xifaxin (they shoudl just be glad I may never pick up the Dificid!) so my husband bought two days worth. She also put me on Diflucan instead of the wafers for the thrush 3 pills spread through the week. It was suggested twice by providers to go to Taymount in England which yesterday, I was prepared to do only to find out that they are booking consults in November. Argentina was an alternative but that is SO far. Worse case, they want to do some of the DIY versions with my husband if PDX doesn't come through soon.

She believes that based on my thyroid issues (I had a toxic nodule and half my thyroid removed last Christmas), my severe tree allergies, the thrush, the utis that clearly my immune system is on the fritz. Every doctor I see asks about stress and so I've given up Facebook and the news because the state of the world coupled with this illness has made me weary. And I'll be doing the food elimination when able. I also have been wanting to get my breast implants removed- they are 11 years old anyway and I've been meaning to. The second, I'm well enough, they are gone. You just never know!

Here is my new regimen until fmt:

S.boullardi
Probiotic (before bed)
An herbal tincture for my mouth
L-Glutamine powder 1/4 teaspoon 3xs a day in water
Molybdenum- 3 drops under tongue daily
Aloe Juice- NON LATEX- 2 ounces 2xs a day AWAY from any other supplements (she said this is important to soothe my gut
Diflucan- 1 pill every other day (3 total)
Rifaximen/ Xifanxan every 8 hours
Vitamin D 25k once per week

FMT STAT

roy
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby roy » Tue Sep 20, 2016 12:16 pm

I hope it works for you but that's not a recognised treatment for c.diff.
If c.diff is not the problem it might help.
Be very aware that if you get full on c.diff D you might need to review the meds.

Sempurna
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Re: Vanco after Flagyl- deplitating urgency to urinate Help!

Postby Sempurna » Tue Sep 20, 2016 12:28 pm

roy wrote:
> I hope it works for you but that's not a recognised treatment for c.diff.
> If c.diff is not the problem it might help.
> Be very aware that if you get full on c.diff D you might need to review the
> meds.


Definitely! we have the Dificid at the ready. The gal in PDX sepcializes in C Diff and the lady up here sent over her plan so we'll see. If she says go to Dificid, I'll go. She may want to use it in prep leading up to FMT which makes sense. I have seen many on here use Xifaxin with some success. I gather the thinking is to treat the whole gut and only the baddies rather than solely the c diff or everything in your body and then a do a lenghty FMT series to finish the job. I think Bright does 5-7. Taymount does 10. She's worried about running me into the absolute ground with Dificid and leaving behind some other pathogens. My regular Dr. is not knowledgeable about this disease but is agreeable. I have begged to get in to a GI to no avail (even when I went to the ER) so I'm going to have faith and am willing to try anything. Fingers Crossed!


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