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    I have an ecoli ESBL uti

    And it's such rotten timing.

    The only oral drug susceptible is 'Nitrofurantoin <=16 susceptible'
    I am on day 4 out of 7 of treatment and it doesnt seem to be working. My urine is clear but I'm feeling the urge to pee sooner then usual. I started taking a high dose vitamin d at the same time so I googled and found that it can cause an increased urge. Also Mayo clinic said it could increase the chance of getting a uti but many other sites say the opposite including a study . Who do I believe?

    Also is this saying I could've gotten this bacteria solely by taking antibiotics previously? I have a couple times this year. I havent cathed in a hospital lately altho I did in a public bathroom.
    Transmission
    Known risk factors for colonization and/or infection with organisms harboring ESBLs include admission to an intensive care unit, recent surgery, instrumentation, prolonged hospital stay and antibiotic exposure, especially to extended-spectrum beta-lactam antibiotics (15). Use of extended-spectrum antibiotics exerts a selective pressure for emergence of ESBL producing GNRs. The resistance plasmids can then be transferred to other bacteria, not necessarily of the same species, conferring resistance to them.
    Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

    #2
    No, I am so sorry, this is the uti I have been trying to fight the last 5 years. Here we say it is a hopital infection and the only thing working for me is 14 days of Invanz(ertapenem) IV in the hospital. Then I have been ok for maybe 4-6 month after and then it is back again. And it is contagious through air so they put me in isolation. But nobody close to me has got it yet.

    I am on Nitrofuradantin prophylatic and has been for six month and it is keeping it away, but every time I stop, it is coming back after two weeks. The urologists I have been with say that if I can stay away from antibiotics for 1,5 year it will disappear, I have tried but I get too sick and ends up in the hospital and it has given me sepsis twice because I was waiting so long.

    I really don't know what to say who can help, if I find a solution I'll tell you. I have tried so many things, I even have a long thread about it in Women only. But I have had trouble with UTI for at least 35 years and let us hope you are more lucky than me Anyway, I have tried Vetericyn but it is not working.
    TH 12, 43 years post

    Comment


      #3
      There are many theories regarding resistant bacteria. sometimes it is a recurring organism that mutates and no longer working for antibiotics it used to, other times, not afully cleared organisms and other times it is an organism that occurred for the first time and is resistant. There are no longer hospital acquired organisms that aren't out in the community also.
      Wash your hands all the time and use hand sanitizer.Clean surfaces and clothes and equipment and personal belongings with a good wipe down daily. But some of these organisms can live on surfaces for days.

      CWO
      The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

      Comment


        #4
        Originally posted by leschinsky View Post
        And it's such rotten timing.

        The only oral drug susceptible is 'Nitrofurantoin <=16 susceptible'
        I am on day 4 out of 7 of treatment and it doesnt seem to be working. My urine is clear but I'm feeling the urge to pee sooner then usual. I started taking a high dose vitamin d at the same time so I googled and found that it can cause an increased urge. Also Mayo clinic said it could increase the chance of getting a uti but many other sites say the opposite including a study . Who do I believe?

        Also is this saying I could've gotten this bacteria solely by taking antibiotics previously? I have a couple times this year. I havent cathed in a hospital lately altho I did in a public bathroom.
        You've been around here for a long time and by now you must have seen/read the posts about Vetericyn. Re-read the posts, give it some thought, and maybe try Vetericyn. What do you have to lose?

        Comment


          #5
          Originally posted by woman from Europe View Post
          No, I am so sorry, this is the uti I have been trying to fight the last 5 years. Here we say it is a hopital infection and the only thing working for me is 14 days of Invanz(ertapenem) IV in the hospital. Then I have been ok for maybe 4-6 month after and then it is back again. And it is contagious through air so they put me in isolation. But nobody close to me has got it yet.

          I am on Nitrofuradantin prophylatic and has been for six month and it is keeping it away, but every time I stop, it is coming back after two weeks. The urologists I have been with say that if I can stay away from antibiotics for 1,5 year it will disappear, I have tried but I get too sick and ends up in the hospital and it has given me sepsis twice because I was waiting so long.

          I really don't know what to say who can help, if I find a solution I'll tell you. I have tried so many things, I even have a long thread about it in Women only. But I have had trouble with UTI for at least 35 years and let us hope you are more lucky than me Anyway, I have tried Vetericyn but it is not working.
          how often do you cath bente? I havent gotten that sick my symptoms are only dizziness and bladder spasms maybe because I dont go any longer than 5.5 hours and I drink 10+ glasses of water a day. I waslucky for about 26-27 years but now have uti prmblems almost continuously.

          gjnl, I used vetericyn for awhile then it stopped working. but i will try it again now that i have this super bug.
          Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

          Comment


            #6
            Damn, I hope you mend, Nicole. I hate UTIs!

            Comment


              #7
              Nicole, maybe adding two METHENAMINE MANDELATE/SODIUM ACID PHOSPHATE (sorry caps cut n paste) will at least cut down the urge to pee? It does for me when I feel a uti coming on. You would know after one day, (two in morning, two at night) if it indeed helped or not at all.
              And the truth shall set you free.

              Comment


                #8
                What dose? this is the recommended for uti.
                Regular release: 100 mg( if normal weight) orally 4 times a day for 1 week or for at least 3 days after urine sterility is obtained
                Dual release: 100 mg orally twice a day for 7 days or three days after urine sterility is obtained.
                If recurrent with this same organisms might treat for 10 days. In a man, if worried about prostatitis or if you havekidney or bladder stones might need to treat longer.
                So you should have it tested on day 6 or so so you won't ave a gap in treatment if not cleared. That is one theory of how organisms get resistant also. Stopping and starting and incomplete eradication.
                Or go by your symptoms.
                We stay away from Macrobid if we can and don't give prophylactically because of the risk of pulmonary fibrosis. I am sure other meds will treat but they might have to be IM- ex: Amikacin and Gentamycin can be given in a IM daily dose( okay in thighs) based on your weight and if you haven't taken them before can do three days but if this is a resistant organism then would probably advise 7 days and you need to have normal renal function. I hope you aren't resistant to those.
                CWO
                The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                Comment


                  #9
                  Originally posted by leschinsky View Post
                  I was lucky for about 26-27 years but now have uti problems almost continuously.
                  ditto. I am now also prone to kidney stones.

                  Comment


                    #10
                    No info to help you but I'll say a prayer for you. I hope you get rid of it soon Les!
                    sigpic

                    Comment


                      #11
                      Originally posted by leschinsky View Post
                      how often do you cath bente? I havent gotten that sick my symptoms are only dizziness and bladder spasms maybe because I dont go any longer than 5.5 hours and I drink 10+ glasses of water a day. I waslucky for about 26-27 years but now have uti prmblems almost continuously.

                      gjnl, I used vetericyn for awhile then it stopped working. but i will try it again now that i have this super bug.
                      I can feel the urge so I cath when I can feel it. In the morning I cath once, drink a cup of coffee and cath a little later again. If I go out it can go 4-5 hours before I need to do it again but in the afternoon and evening I drink a lot of water and cath maybe every third hour. I usually drink a bottle of water, 1,5 litre and then some diet coke or 1 litre of cranberry or pomegranate juice. I know it is better with water but I get so bored with all the water and here the doctors are not that strict about other drinks so as long as I am drinking between 2-3 liter and most of it is water, they are satisfied.

                      I didn't cath before, I just went the normal way, so I have tried all the anticolerics meds the last year and cathing and ended up with botox the summer. My urologist thought it was worth a try since my bladder pressure is a little high and that can maybe give UTI, but it did not work for me and now we are only waiting for the Botox to disappear and I am not going to do it again since it did not help anyway. I am going to the rehab to Thomas Glott in December, you have met him I think, and we are going to talk about the next step. I am willing to try everything to get rid of it and the Vetericyn didn't help me. This time I am putting my UTI in my urologists' hands, Tomas Glott and the neurourologist are the best doctor's for people with SCI here.

                      I know you have taken the Mitro, the urologist didn't want to do it on me because he meant I could be unlucky and get more UTI. I have some nightmares in my head, I have had it so long time I am sure the bug is in the membrane in my bladder and I think that maybe the bugs from my bowel program is making the UTI and a Mitro is fare from the anal opening, I can't take the decitions anymore because I am thinking too wild things. I am willing to take out the bladder. But the urologists don't agree and they are proberly right and I have been a little crazy from having the bug so long time and I am close to nervous breakdown everytime I get a new UTI.

                      You are allowed to laugh about my stupid thoughts, they are too wild. But the e-coli ESBL is not usual at all here and it was even in the newspaper how many people who had it in Norway in 2009 I don't know how it is in the US, but I know this bug is a big problem in Great Britain.

                      If I get any new information from the uroterapist I tell you and I hope you tell me if you find anything that work. Just now I take one 50 mg Furadantin in the day and I am clean. I must say I hope you get rid of it quick because I think the longer it is there, the more difficult it is to get rid of. It is like the MRSA and they treat me the same way. I am not allowed inside the hospital with the ESBL except in isolation.

                      If you have been clean for so many years, you could have chosen another bug Ask whatever you want and if you have time read my long thread in women only, I think it is called "In the hospital" and it is loooooong thread and tells all the things I have tried. PM me if you want, here or on facebook.
                      TH 12, 43 years post

                      Comment


                        #12
                        Has anyone tried d-mannose on ecoli esbl? The word ecoli gives me hope that it may be helpful.
                        T4 complete, 150 ft fall, 1966. Completely fused hips, partially fused knees and spine, heterotopic ossification. Unsuccessful DREZ surgery about 1990. Successful bladder augmentation using small intestine about 1992. Normal SCI IC UTI problems culminating in a hospital stay in 2001. No antibiotics or doctor visits for UTI since 2001: d-mannose. Your mileage may vary.

                        Comment


                          #13
                          My name is Steve Winter and I worked with Congress to get the Medicare policy and VA policy changed years ago so the patient can have the choice of using a new catheter each time. I have been personally attacked for hidden agendas and I confess I made some personal attacks that were uncalled for as well.
                          For me and hunfreds of others I have talked to as our bladder goes so do we. I am 49 now and it is not getting any easier and the insurance companies are finding new ways of denying catheters.

                          Two things I want to say and I hope I can get support on these issues. I did a project on this forum and I am going on memory what the numbers were but there were over the years hundreds of thousands of posts on bladder problems. It is so common people do not put a face on the individual and the suffering can be unbearable and can make it hard to almost impossible to live a normal life.
                          Between the pain ,infections etc it is like your whole schedule revolves around the bladder.

                          Throughout the years there has been all kinds of solutions that have worked for some or even the lucky ones who can reuse do everything wrong and still no infections. I know people in their 90s that smoke but we know that is the exception.

                          I attended a conference that I was invited to that had all the heavy hitters hosted by the Kennedy family with a lot of Republicans too.
                          In attendance was the Director of the FDA,NIH and Vice President Biden.
                          The goal was to change how research is done and demand that researchers that get federal funds share their data.
                          The goal like the when JFK said we will be on the moon in less than ten years and we were walking on it in eight, this goal is to map out the brain and spinal cord and GET the cure in less than ten years no exception.

                          I personally told the panel I have a goal of seeing my son graduate in three years because when it comes to care in my experience with bladder issues most urologists just do not understand our issues.

                          I told them that for the last three years I have had constant pain and infections etc and am in a state where there are no doctors that understand the SCI bladder.

                          This forum has dedicated nurses that care as well as the doctors but we have to help them with Congressional funding and support. Not every city or state has the type of healthcare professionals that are as educated or as passionate as the select few who specialize in the neurogenic bladder.
                          This is not a negative jab at the medical community it is a fact but it is a compliment to all of the nurses and doctors who run this forum. They could be doing a lot of other things with their time.
                          We have to wake up every day with the pain or worrying if a scheduled event has to be canceled that is heart breaking. I coach and have never missed any of my son's basketball baseball or football games but only because I started taking pain Meds.

                          I am starting an organization called We the People Patient Rights Group where the main goals are:
                          1)Every catheter patient will get the catheter they need and it will be a federal mandate that ALL insurance companies public like Medicare and Medicaid will get a new catheter and the type that is best for them .
                          2)No more guessing and find out what will keep our bladders UTI free and pain free.

                          3)If the forum allows it the patients need to step up and demand this.
                          I personally through my time in Washington have all the support to pass the laws but need help for the other issues of not just existing but have a higher quality of life.

                          4) I am putting together a web page and there will be a link for anybody who currently is not getting their catheters paid for because of insurance I have companies that will provide them for free while we have Congressional pressure asking why they are not being provided for.

                          I know catheters is not the only issue but it was a good start and now with Botox, new oral meds etc that will be the next step.

                          We must find out why we hurt and get Uti's and knock them out.

                          Every person with an SCI has a story where they may always be in pain or missed an event that was important because of bladder issues.

                          I am praying we can honestly say our bladder does not control our life.
                          The web page may take a while so if anybody needs catheters message me. The holiday season is coming up and if we can prevent even one infection for that person it means the difference between enjoying themselves or not have to cancel going to a relatives house for fear of leaking from a UTI.
                          As far as my agenda before people start judging I will tell you I am being selfish. I see where the medical business is going and at this rate I do worry about seeing my son graduate or living long enough to see my grand children but I am also sincere in that I wish none of us had to go through this.
                          I do not know what more I can say. I could sure use some help this time around. The catheter manufacturers who profit off us need to step up as well and the patients can help this.

                          For a better quality of life,

                          Steve Winter
                          Helper

                          Comment


                            #14
                            If it isn't your bladder- it may your bowels- but that is another subject.
                            Thank you for all your advocacy.
                            The VA prescribes a cahteter with each catheterization and recently I believe Medicare - heard it will pay up to 200 catheters a month so good for 5 caths a day- what if htey do every 4 hours or so and need 6???
                            Recently-Botox has been approved by the FDA and VA has been doing it for years.
                            Every person is different and a majority of patietns with same LOI and ASIA score might - or might not be- similar and may be totally opposite a complete history and evaluation of problems needs to be done and quit this- your level of injury is here and this is what you do and this is what you need. And then as youall know, it can CHANGE.
                            I don't know that there is controversy or lack of knowledge as to why pt's with SCI who cath get infections, or those with bladders that do not contract/empty normally and high pressures and not to mention the sphincter problems and overactivity- all these issues lead to UTIs bladder stones, kidney stones etc..
                            But why do some have bad infections when cathing and others get colonized but never gets worse? How can we prevent the UTIs ? What works, what doesn't? Cranberry or not? mandelamine or not? Vetericyn or not? and on and on. Prophylactic antibiotics such as Macrobid might work for some- of course pulmonary fibrosis can be an issue in long termso we rarely do that anymore.
                            So why? Even people who we switch to not only a clean catheter but a closed system( all in one with bag)- because research years ago showed the closed system could decrease UTI's.And I have put patients on betadine, sterile gloves,checked the caregiver off ike I was checking a new nurse or nursing student off in the best sterile technique possible and they still got a UTI because they cathed but others Can drop the catheter on the floor and not wash hands and while they may be colonized they don't have symptoms or kidney stones or any issues!!! So.. immune system? what??? That is what we are looking at.
                            As I mentioned in a previous post- what we did for years twenty or thirty years ago - we may no longer advocate-Crede' to start voiding ( should always crede' at end of catheterization or when usine flowing ok but not to push it out. That is why Urodynamics testing is important- not only for issues but test what the patient is actually doing during the Urodynamics.
                            Also recently literature indicates those with bowel issues and slow transit time and frequent impactions contributes to UTI. We have totally changed the way we do things but still alot more.
                            Oir SCI ID doctor has been doing research for year on UTI and putting an organism in and also now indwelling catheters with encrustation so..... more to come.
                            So all the help is needed and as far as I am concerned anything in the best interest of our patients is fine... definitely if volunteer and no money being made but to me even if a little money is being made... ok.
                            And if there is something send it to us - can send to SCI nurse or moderator and they can make a decision or send it up the right channels- i.e. me If I wasn't sure I would ask KLD or Dr. Wise to be sure.
                            The other issue-Bowels- slow transit time,high lumen pressures, chemical irritation of rectum from suppositories,diverticulosis/diverticulitis, caused by this gets worse and more impactions etc... Is digital stimulation the best for this? most effective? can we prevent some of these issues? Plus does anyone really like digital stimulation??? if needed, ok but is there a better way or maybe less needed- I was recently told that a nurse in hospital in a big northeast/midwest city couldn't get the Magic
                            Bullet for inpatients because of the cost- per Pharmacy- probably a whole 30 cents more?
                            And they felt if they couldn't get that how could they possibly get Enemeez or Enemeez Plus( with Benzocaine for pain and/or AD)- even if it worked better and saved a lot of nursing time- because pharmacy controls it!!! and probably costs a whole 75 cents more but might save 2 hours of nursing time, not to mention the patients experience.
                            So yes we need input from all and the research on all these things so these hospitals(nursing staff) can present it and do the cost analysis so they can atleast try it on patients.
                            So, yes there is so much to be done in the way of research, using the research that is there and more research especially on clinical issues ( evidenced=based medicine) and the advocacy needed.
                            CWO
                            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                            Comment


                              #15
                              Originally posted by SCI-Nurse View Post
                              What dose? this is the recommended for uti.
                              Regular release: 100 mg( if normal weight) orally 4 times a day for 1 week or for at least 3 days after urine sterility is obtained
                              Dual release: 100 mg orally twice a day for 7 days or three days after urine sterility is obtained.
                              If recurrent with this same organisms might treat for 10 days. In a man, if worried about prostatitis or if you havekidney or bladder stones might need to treat longer.
                              So you should have it tested on day 6 or so so you won't ave a gap in treatment if not cleared. That is one theory of how organisms get resistant also. Stopping and starting and incomplete eradication.
                              Or go by your symptoms.
                              We stay away from Macrobid if we can and don't give prophylactically because of the risk of pulmonary fibrosis. I am sure other meds will treat but they might have to be IM- ex: Amikacin and Gentamycin can be given in a IM daily dose( okay in thighs) based on your weight and if you haven't taken them before can do three days but if this is a resistant organism then would probably advise 7 days and you need to have normal renal function. I hope you aren't resistant to those.
                              CWO
                              the macrobid? i was taking 100mg twice a day, it says on the label nitrofurn mono. so I guess i got too low a dose, great.

                              amikacin is susceptible but at <=2, gentamicin <=1, and imipenem <=1. that's not too good right? the higher the #the better?

                              Joe I've thought about trying that but my bacteria seems to adapt to everything, it's still a possibility tho.

                              Bente I'll let you know if I find anything out. I'm going to try the vetericyn again.
                              Embrace uncertainty. Hard problems rarely have easy solutions. Jonah Lehrer

                              Comment

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