UTI 1 YEAR POST 2ND FMT

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okaylo
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UTI 1 YEAR POST 2ND FMT

Postby okaylo » Fri Dec 08, 2017 4:00 pm

I've had 2 FMT's after long battles with cdiff. 1st one was in June 2016 - unsuccessful. 2nd one was in October 2016 - successful. I made it through over a year without requiring an antibiotic. Got a UTI a little over a week ago which was confirmed via culture. In the 2-3 days that the culture was being processed, I tried to flush my system naturally with 100% cranberry juice, D-Mannose, and water. My symptoms were severely lessened and I felt a lot better. My doctor contacted me to tell me the culture had returned positive but due to little symptoms we cultured again and it came back negative, doctor said good job treating your infection without antibiotics. I was feeling a little iffy after a few days had passed so a 3rd culture was performed. In the meantime, I took a 3 day course of Macrobid 2x a day. Symptoms were lessened but I still didn't feel 100%. A 4th culture was performed and my doctor has called in an RX for Levofloxacin (Levaquin) should things get worse over the weekend while we wait for the culture. I know Levofloxacin is a high offender for cdiff and I am terrified to take it. I have been taking probiotics since I started the Macrobid and have continued with them post treatment. One of the probiotics is Sacchromyces boulardii which is said to be helpful in preventing recurring cdiff. I have also spoken to my GI doctor who performed the FMT's and had him review the culture results/antibiotic sensitivities. He said that Levofloxacin holds a higher risk for developing cdiff as do all of the other ones that are listed on the sensitivity page. He also said that the Macrobid should have knocked the UTI out even if I waited a week to take the meds and that Macrobid is a low offender as is primarily targets the bladder and leaves the gut alone. Has anyone taken Levofloxacin and not relapsed? I should have the culture results by Sunday or Monday and am trying to hope for the best here.

NanciT
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Re: UTI 1 YEAR POST 2ND FMT

Postby NanciT » Fri Dec 08, 2017 5:42 pm

Hi

Sorry you are back with a UTI, I remember you well and how difficult your battle was. One point I noticed, ask the MD WHAT drugs it is sensitive to. The Levaquin is a HIGH offender and I am sure there are other's on the list that are Sensitive. Also, what is the colony count for the infection?
Just to tell you my experience:

I see a Urologist because Post CDIF and VANCO I sadly had these all of the time. The urologist did not treat unless the colony count was over 60,000. I also had a very difficult case with CDIFF and relapse 5 times over a year so my urologist is being extra careful. I did have ONE infection over 100,000 colonies which he felt has to be treated and I took Keflex for 5 days, it is also a high offender but it worked and thankfully NO CDIFF.

I did everything you are doing, D Mannose, water, Probiotic etc. It sounds like you are doing all you can, that is all we can do!!

Hang in there, maybe all will be well with this final culture and I would continue with D Mannose. I still take it everyday, and so far no more UTI's

NanciT

okaylo
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Re: UTI 1 YEAR POST 2ND FMT

Postby okaylo » Fri Dec 08, 2017 6:46 pm

Hi NanciT. I remember you as well and am so happy to hear from you. I have a list of the drugs that are sensitive from the lab sheet and have been told that taking any of them poses as a risk for cdiff by my primary care doctor. I spoke with my GI doctor who did my FMT's and he said the Macrobid was the safest of all for me to take due to it primarily targeting the bladder. I've already taken it and still don't feel like the UTI is 100% gone. After he reviewed the sensitivity list, he said that they are all pretty much of equal risk and that they all touch the gut. He also agreed that the Levaquin definitely holds a higher risk for cdiff. The colony count of the infection was greater than 100,000 cfu/mL of E coli.

I remember your posts and battle as well and I am so sorry for all you had to endure. I am glad you are in good hands with your urologist and are being extra cautious. That is what I am trying to do as well...

I'm not taking D-Mannose right now as I think it's more a preventative measure than a cure/treatment for UTI and that it just suppressed the bacteria but never fully made my infection go away given the following culture results... D-Mannose and the large amounts of pure cranberry juice I was consuming gave me a run for my money with diarrhea. Since stopping, my stools are better.

I am not opposed to taking the D-Mannose down the line. I'm taking a 15 billion Renew Life probiotic which has 10 different strains and a 5 billion Jarrow Sacchromyces boullardi along with it. I took a 50 billion Renew Life along with the Jarrow a few times while I was taking the Macrobid but it seemed to be a little too much. I asked my GI and he said I may be overdoing it a bit with the probiotics.

I've never had a UTI before and this whole experience has been terrifying especially since all of the cdiff history. It makes me never want to be intimate with someone ever again and risk getting a UTI. At 27, I know that's not a good way to feel but I know it's the only way I'm going to feel safe.

When you were taking the Keflex did you take probiotics during treatment and after?

NanciT
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Re: UTI 1 YEAR POST 2ND FMT

Postby NanciT » Fri Dec 08, 2017 7:47 pm

yes, I take VSL#3 but only 1/day. I took 2/day while on Keflex. I take D Mannose everyday, I have been taking it since I went off Vanco which caused a bladder irritation and I felt I had an infection constantly for 2 years. I had all the symptoms, but often the cultures were negative. I was on Vanco a total of 4 months.
The D Mannose should be taken when you have an active infection, check out the information online about it. I actually never have cranberry juice at all. It can be a bladder irritant and also upset the GI. It sounds like the opposite of what most do and what you also find in health food stores, but I have worked with several urologist who do not recommend it and my own experience of taking it has not been good.

If you have an infection great than 100,000 colonies, I would move forward and take what your physician recommends, you don't want to leave an infection untreated. We can only do so much to avoid them but sometimes they are necessary.

I wish you the best with this!

NanciT

okaylo
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Re: UTI 1 YEAR POST 2ND FMT

Postby okaylo » Fri Dec 08, 2017 8:26 pm

Thanks for the info NanciT, it is all very useful. Especially the part about cranberry juice because everyone including doctors seems to push the idea. I think I'll go home and take some D-Mannose after work.

I've tried VSL#3 in the past and mixed half a capsule with water and it had me spinning and feeling sick for days after along with diarrhea. I think it's way too potent for me give my IBS and other GI issues.

I already took the Macrobid 2x per day for 3 days prior to receiving the culture results that had come back with the greater than 100,000 colonies. So I have done one treatment already but am still not feeling 100%. I am trying to wait until the next culture comes back to know exactly what I am currently dealing with, might have an answer by Sunday. The Levaquin is such a high offender and my gut is telling me to wait, wait, wait. My doctor said he'd call it in in case things got really bad over the weekend but why don't we take one thing at a time and see what the culture results show. So I am trying to wait, I have a feeling the culture might give new information or a different antibiotic option might show up. I don't know, I guess I'm just nervous, confused, and upset at this point. I was doing relatively well before this and now my anxiety is through the roof and all of the bad memories are flooding back in.

Thank you for your help, I appreciate it.

cdiff454
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Re: UTI 1 YEAR POST 2ND FMT

Postby cdiff454 » Sun Dec 10, 2017 4:14 pm

I'm not sure why your doctor would prescribe levaquin for an ecoli UTI if you're a woman. It would certainly be effective, but it's hardly the safest bet, and fluoroquinolones are not even recommended for first line UTI treatment (Black label).

I'd ask your doctor about fosfomycin (Monurol). Ecoli and enterococcus are its specialty and it is basically marketed for treating UTIs. It is also a low risk offender for c diff and has fewer serious side effects than levaquin.

Full disclosure, I relapsed while on it while treating a prostate infection, but I was on it for two months straight. Standard treatment is a couple days so your risk would be far, far lower.

okaylo
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Re: UTI 1 YEAR POST 2ND FMT

Postby okaylo » Wed Jan 03, 2018 2:45 pm

The Macrobid ended up resolving the infection. It has been almost a month since taking the Macrobid and I have continued with probiotics. My bladder started bothering me again a few days ago after sexual activity. The dipstick at the doctors has showed negative as well as the partial urinalysis results they have received. They are awaiting the culture results and my doctor has suggested taking AZO Urinary Pain Relief to help with bladder spasms and the discomfort. Has anyone had success with this before? My doctor told me this is not an antibiotic and will not cause cdiff but I'm still hesitant to take anything....

NanciT
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Re: UTI 1 YEAR POST 2ND FMT

Postby NanciT » Wed Jan 03, 2018 3:14 pm

Azo is the drug pyridium and has been used for years for bladder symptoms. It's not an antibiotic and treats the pain discomfort. No risk of CDIFF.

I don't recall how long you were on Vanco but it did not irritate or cause bladder pain for me until after I had taken it, there are also many on the site that end up with bladder irritation due to Vanco. This can be a side effect of Vanco. Often the urinalysis will be negative but symptoms persist.
If it continues, you may want to consult a urologist. I did see one although there was not much he could do, I tried a few medications. It took a lot of time for me but did resolve.

Hope you feel better soon

NanciT

okaylo
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Re: UTI 1 YEAR POST 2ND FMT

Postby okaylo » Wed Jan 03, 2018 5:00 pm

Hi NanciT. Thank you for the information regarding the AZO. I have not taken it yet as it says it can affect the accuracy of urine tests so I am waiting to see how the coming results play out. I am supposed to have an answer on the culture by tomorrow, if not Friday morning... They also took another sample when I was at the doctor today as the irritation has gotten worse.

I was on Vanco for months and months on end but did not ever experience bladder irritation from it and have been off it for over a year... The bladder irritation didn't start until sexual activity and developing the UTI a few weeks ago and then became noticeable again this past weekend. I agree with you about the urologist. My doctor said if the cultures continue to come back negative, I can be checked out by a urologist but it will probably be diagnosed as irritable bladder. I'm hoping my urinary tract just needs time to heal and is irritated and that I will not have to deal with another infection as I just got over the scare of the last one and taking an antibiotic.

I am also extremely on edge because I have had loose stools/diarrhea for 2 days which I'm assuming is from a mixture of heightened stress/anxiety, probiotics, and poor diet recently. It seems that the flu and illness is going around which also adds to my fear of getting sick. I just feel run down and quite icky. Hoping this calms down soon. Appreciate your help!

NanciT
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Re: UTI 1 YEAR POST 2ND FMT

Postby NanciT » Wed Jan 03, 2018 6:00 pm

FYI my real bladder symptoms did not occur until I was off everything, I was on Dificid for 3 months, treatment for a year. I would look Vanco up on Drugs.com and print out the side effects for your MD. It can occur later, does not always occur right away.

Ril
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Re: UTI 1 YEAR POST 2ND FMT

Postby Ril » Wed Jan 03, 2018 6:30 pm

A couple of things just FYI
There are a lot of illnesses going around now so between that and the anxiety I certainly wouldn’t be crazed over somewhat irregular stools.

And for future reference, “just in case”, many GI drs recommend Florastor 2x/day when you are taking antibiotics as long as you don’t have a problem with it....during and a while thereafter.

Hopefully this is the end of your UTI.
Rita

okaylo
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Re: UTI 1 YEAR POST 2ND FMT

Postby okaylo » Wed Jan 03, 2018 6:45 pm

NanciT, thanks so much for the info! I was on treatment for close to a year too. :( Vanco for close to 9 months and then Dificid for a while and then back to Vanco before the most recent FMT in Oct 2016. I also took Flagyl with my first bout of cdiff.What you're saying totally makes sense. Do you think it would also make sense that maybe the irritation was kick started by the sexual activity after nothing going on down there for over a year?

Ril, thanks for the reassurance on that. You're right. As far as the Florastor goes, you're right on that too... I take Jarrow Saccharomyces Boulardii + MOS, 5 Billion Organisms Per Cap either once or twice daily (which is the strain that is in Florastor)... While I was on the Macrobid, I took this twice a dayy along with another probiotic that offers a variety of other strains (Renew Life Ultimate Flora, 15 Billion) twice a day and have continued with both of these daily following the Macrobid treatment. I have been told that Saccharomyces Boulardii is the only probiotic strain that has been proven effective in preventing recurrent cdiff. Probiotics are hard for my stomach to handle but I have kept up on them and I have been off the Macrobid for almost a month. I hope this is the end of the UTI too. Fingers way crossed.

NanciT
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Re: UTI 1 YEAR POST 2ND FMT

Postby NanciT » Thu Jan 04, 2018 6:27 pm

Let us know how you do! Hoping the culture is negative!

NanciT


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