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Urine infection is e-coli

Posted , 9 users are following.

sandy67
sandy67

Hi, has anybody been told that their urine infection is e-coli and may be very difficult to get rid of? I never had a consultation with GP just given a prescription and told I may need injections to get rid if it. I have suffered urine infections on and off for years but never like this. I have had high temp for over a year but not looked into. Only when cystitis started a few weeks ago and I took a sample in has it been looked into. First sample showed nothing at gp surgery so he said to do another one to be sent to lab. Just come back with this e-coli which has scared me a bit. I have lots of pain under my left rib and pelvic aches and pains but have had them for ages, could that be connected? He has given me Nitrofurantoin to take for a week but said it is very likely they won't clear it. What causes this? I am very careful with food and hygiene but do eat out a lot and used to buy ready made sandwiches a lot too, so could it be from that? I also have an auto immune disease and have suffered dreadful chest pain for a long time. Could this have been around for a lot longer and I haveen't known about it? 

Any advice would be very much appreciated. Thank you.

1 like, 40 replies

40 Replies

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  • doloroso
    doloroso sandy67

    Posted

    Me again sandy67. Just read this specific post again.If you never had a consultation with a GP, who prescribed your antibiotics?? You have suffered on and off for years and yet you have never seen a SPECIALIST??? Can't get my head around this.
    • sandy67
      sandy67 doloroso

      Posted

      I was referred a few years ago when my cystitis was regular and the urologist said it was cos my bladder was not emptying so suggested I stay on the loo for longer when I went. This stopped for a while so,this particular infection is actually new now and it has never been ecoli before, they were always stumped as to why I kept getting infections years ago. As this one only started last month it is probably very soon to start asking to see a specialist.  I never had a consultation with the first gp as he apparently had tried ti ring when the results came back, then wrote to me telling me what it was and sent a prescription. However i was in with my son before I got the letter and asked him at the end of his consultation. He was reluctant to go into anything as it was not my appointment, just said "it is ecoli infextion and oral antibiotics tend not to be effective, so if it doesnt work after this course you will need injections". When my next urine spec was showing infection, whilst I was at the surgery another doctor just said we dont want to be sending you into hospital unnecessarily for 5 days to a week, we will try more antibiotics. I argued with her thaf I had already been told the first lot was the only one that could have helped as I had been told by a second gp in the phone, and he had also said if they didnt work it was a hospital job! Believe me I am extremely frustrated at all of this! I have RA too so if this isnt slowing me down I also have that to contend with, but my hands appear to be tied
  • julie01285
    julie01285 sandy67

    Posted

    Apparently there are 2 vaccines that deal temporarily  with a base of e-coli .One is based in Reading Berks private clinic expensive .The other has been given by European Doctors.

    I have multi bacteria including metranizadole one[ trichomonas]   so investigating effectiveness.

    Hospital extended cultures dio not always reveal theproblem.Take antibiotics away & I get nasty boils & also long term breathing /mobility problems [ nitrofurantoin? Why are some utis linked to kidneys & others not ? Why are they alsolinked to pyuria/sepsis  with A&Es not testing?

  • julie01285
    julie01285 sandy67

    Posted

    Could we have an update? I used to go to Sexual Health Clinics to get immediate treatment .Antibiotics are a quick fix till the next time .
    • sandy67
      sandy67 julie01285

      Posted

      I am now being investigated and having a scan hopefully soon. It could be perimenopause apparently. I am not taking antibiotics now. I have another blood test and an exam booked in two weeks. The pain has subsided but now getting discharge and a lot of groin aches
  • pam1234
    pam1234 sandy67

    Posted

    hi sandy how have u been gettin on-reading a story is same as me--so awful i was diagnosed with ecoli 7 wks ago and antis would sort it and i would be ok--3rd lot different antibiotics and still no relief   --iv had all this pain for 6mths now but took ages to get referred--then 7wks ago i had gen anesthetic to look at bladder -thats when they said biopsy showed ecoli

    just cant get rid of all pain  so thats why i know antis are not working

    i get constant lower back pain and bladder pressure .

    im goin back urologist next wk and  i dont know what to suggest as they seem stuck >>??pam

    • sandy67
      sandy67 pam1234

      Posted

      Hi, I am still getting pain now and again but no innfection is showing. I did spend last week in hospital however after attending a and e with abdo pain. It was dreadful! Pain started in and surrounding bellybutton then on right side lower down. They thought appendix but that was quickly ruled out after ct scan, they did findcysts  on my ovaries but said they wouldn'tcause that pain. Then 3rd day in hospital I starting bleeding so thought a period had startd and put on a pad but I was bleeding another 3 days only when I had a wee! My pad was bone dry. They said it was just a period but there was no flow and I kept arguing it ws nothing like a period! They just discharged me still in pain, stillbleeding and feeling like they think I am a hypochondriac!!!the pain is now manageable but if it gets bad again I am going to a different hospital. I am fed up of constantly being in pain but dont know what to do as apparentlyno infection has shown. One of the junior gynae doctors saw me and said my urine test had shown no bloo. I laughed at her cos the sample I gave in was pure red! Lol then she changed her mind and said I mean it was clear of infection. I don't even think it was tested cos the first one they asked me to do and leave in the toilet was still there in a bowl, along with someone else's for at least 8 hours! It had then just been thrown away cos I saw the two empty cardboard bowls in the waste disposal in the toilet. I give up! I am sick of the sight of doctors now! Hope yours gets sorted x
    • sandy67
      sandy67 pam1234

      Posted

      also just thinking about it now, even if they did test the wee on the ward it was only dipsticked and that doesnt show ecoli, as my gp did that too, and it showed no infection, but after being sent to the lab it showed ecoli! I kept telling doctors there I had had ecoli for a while too! But I am certain none of my wee samples went to the lab!!
  • pam1234
    pam1234 sandy67

    Posted

    its a nightmare i think unless u need a operation to fix a broken leg ect   docs dont have a clue with ongoing pain issues etc-----they just fob u off with more antibiotics--i never had one posituve uti had about 10 sent to lab over 4months but urine on diptick showed pus and blood,,,they only diagnosed by looking at my bladder and scraping  for the biopsy--so i would never trust aother urine culture anyway --always will just go off the pain    ,,xx
    • sandy67
      sandy67 pam1234

      Posted

      Yeah its getting pretty frustrating now! I am sick of doctors rolling their eyes when its them thats not doing their job properly! If they would just do a thorough investigation we wouldnt have to keep pestering them!! You would think thats so simple but they just dont seem to see it x
    • pam1234
      pam1234 sandy67

      Posted

      hi sandy  im at hospital thursday

      want load info to blast at consultant because been suffering 6months now

        i was wondering if u ended up getting injection for ecoli--iv heard them mentioned in america and wondering if do injetions in uk   -

      thanks

       

    • sandy67
      sandy67 pam1234

      Posted

      Hi, they do do injections here. My first doc said i woukd have them, subsequent gps said no need! Even though they kept showing infection!
  • julie01285
    julie01285 sandy67

    Posted

    Hi ,

    Investigated injections [ vaccine?] not yet licensed for NHS very expensive privately -  at Reading & may only work for a month .

    Was wondering whether sacral stimulator [ pacemaker ] may help.Just given medication for depression which don't have,instead vof oxybutinin   when inquire ??!!

    Fortunately my pain was taken away via a keyhole urethrotomy, as targetted Research in late 1960s  found spina bifida [ occulta ] with abnormal EEG & double ureters [ should have one].This is in 10% of population yet charities pretend there are no problems.

    However still have stress incontinence & retention plus the infections becoming acute 3 weekly affecting spinal area via pyuria [ pus ].The Prof saw 3 weekly in London , kept kidneys clear ,but when spina bifida area involved  or transferring appts when moved were  not his remit.

    The Dept saw here  last year ignored spina bifida findings & infection  even though late Mother died of uti & severe multi infart dementia .

    I eventually had a cardiac arrest because NHS refused to address issues of disability/mobility utis  disregarding the spina bifida as Low Priority .

    I think it is downright discrimination of disability , age & gender .

    My Aunt 90+ fully compus mentus has been hospitalised x5 this year as her Addisons & utis not specialist monitored as before .Sepsis is not taken seriously enough with A&Es not testing until too late  .

    This is Care in Community I don't think.

    This  does not make sense & totally unreasonable.

  • JulieGee
    JulieGee sandy67

    Posted

    I suffered with recurrent UTIs (always e-coli) for over 10 years until I discovered a product by chance on the internet many years ago.  It's called D Mannose and it was truly my miracle find.  I had an e coli based infection at least every other month and the doctors just filled me with endless different antibiotics most of which I am now resistent to.  I had all tests available carried out and the doctors could not establish why I would get so many UTIs.  I ordered D Mannose because I read the reviews and had nothing to lose - I was desperate.  I took 1 large teaspoon of powder every 2 hours and the burning stopped!!!  I continued to take 1 large teaspoon every 3 hours for 5 days and for the first time in years I was UTI free and stayed that way for over a year.  If you have an e coli based infection this powder cannot fail to work.  There are 1000s of success stories and reviews on this product and they are all real.  I have never had to take an antibiotic since discovering D Mannose - it works every single time for me and for loads of other UTI suffers.  The one thing I think that is important to add is that some people have said it has not worked for them and I truly believe this is because they have not taken enough of the powder - some people need more some less.  My UTIs tend to be very resistent and I have to take a much larger dose than most ie 2 heaped teaspoons for the first 2 days and then reduce down to 1 heaped.  Also, most people can stop taking it after 3 days but I have to take it like I would an antibiotic for 7 days.  Taken in larger doses does mean that you could have diarhhea but I would must rather have that problem than to have eye watering burning every time I go for a pee.  An upset tummy resolves if you reduce the dose.  D Mannose can be expensive £20 a 50g packet but I have managed to find it for £11 for 80g.  I do still get the occasional UTI but I now also take a femine probiotic which has all but kicked them out!!  D Mannose changed my life.  Please try and let me know how you get on.
  • Lisa5472
    Lisa5472 sandy67

    Posted

    Hi Sandy, I recently went for a colonoscopy and then a couple of days later I felt the pain and burning of a UTI.  Went to the urgent care, they confirmed I had an infection and prescribed Keflex.  Got a call today which said the culture had come back and it was E. Coli.  Since I'd never had that kind of infection before I went online to find out more.  From what I read, E. Coli often lives in the colon and I can only imagine with all the cleansing and lack of drinking water that's how I got the infection.  The nurse said to stay on the Keflex since that was the antibiotic of choice and let them know if there were any other problems.

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