Results 1 to 10 of 10

Thread: Bad UTI going on

  1. #1
    Senior Member
    Join Date
    Feb 2010
    Location
    North of the 49
    Posts
    399

    Bad UTI going on

    a quick background on me is a 34y/o male T2 6 years post. I have always always had problems with my no good bladder. Right after I left the hospital I was using in and out cats until my spinster muscle got so tight I couldn't cath any more that way. I used a foley indwelling for a couple years, the infections where so bad I tried everything that I could find to help. Cranberry juice, Dmannouse, drinking 4L a day which I still do, 5000mg of Vit C and I found Vetericyn VVF. It worked great, only getting maybe 1 infection a year. Then I went with a S/P tube to free up my penis and that was a horrible decision for me. I got insane pelvic floor pain from it and when I did my VVF flushes I bypassed all the time giving me more infections cause the VVF won't stay in. I went back to the Foley and my bladder still bypasses it. I stopped VVF cause I was literally pissing away money and I now only change my cath every 3 months. And thats only when I get real sick from a infection is 2 weeks after a cath change. I would switch between Cypro and Macrobid to knock back the bugs but never totally killing them off.

    May I got a colostomy done and I was in hospital for a week and got really sick. Worst sickness I have never had from infection. I took Cipro for 2 weeks and put in a fresh cath and two weeks later got real sick again. Sent in a urine sample and just got a urgent call from a Dr covering for my family Dr saying I have a horrible bug that only gentamycyn (SP?) or another IV A/B will kill.

    I am scared sh!tless and don't know what to do? I feel OK on macro bid and know it will get worse once I stop. I know going down the IV AB isn't good and I don't want to shorten my life span any more than I have. Any advise is greatly appreciated. I tried doing VVF again this morning and bypassed it again..

    Called my uroligyst but I just missed him for today..
    Mark 9:23 - All things are possible for those who believe.

  2. #2
    Go to the doctor/hospital as soon as is feasible. If the bacteria are resistant to the nitrofurantoin (macrobid) you're taking, then you're just killing off their competitors and leaving more real estate for the resistant bugs to take over.

    All drugs have their side effects, but I think you're over blowing the risks of IV antibiotics. Certainly it's safer to get started on them then to leave your infection untreated. I don't think a course of IV antibiotics is going to significantly shorten your life span as you said...

    If I was you I'd be on my way to the doctors office or hospital ASAP with or without an appointment.

  3. #3
    You may want to get another opinion from a different urologist; ideally one who specializes in neurologic urology. You may also want to consult with an infectious disease specialist.

    While there are no set guidelines on how often indwelling catheters should be changed, 3 months is a long time. You will have a lot more biofilm on the catheter if you go that long. Most people change very 4-6 weeks.

    Have you been evaluated for possible stones? For possible prostatitis? For bladder diverticuli? Strictures in your ureters or urethra? All of these things can increase your risks for UTI. I assume what you are calling a UTI is a true UTI (fever, chills, AD, severe leaking around the catheter, flank pain, severe, malaise, etc.) and not just colonization (positive culture, stinky urine, cloudy urine, etc.).

    A Foley is a type of catheter. It can be inserted either as an indwelling urethral catheter or an indwelling suprapubic catheter. Other types of catheters other than Foleys can also be used (such as the Duette, a mushroom catheter or a Mallacot catheter).

    Catheterization is usually abbreviated "cath", not cat), and the muscle that closes your urethra is a sphincter, not a spinster (which is an old maid). Learning and using the proper terminology will get you more attention from your providers.

    There is little evidence that cranberry juice or vitamin C helps to prevent UTIs. D-Mannose has only been shown to be helpful in preventing (not treating) e. coli infections, and it sounds like you have other bugs.

    By taking Cipro and Macrodantin like you have, you have created "superbugs" which are resistant to these medications. The use of preventive antibiotics in people with neurogenic bladder is rarely a good idea.

    You probably at this point will need to be hospitalized to get a round of the IV antibiotics, but ONLY if you are symptomatic (not just based on a positive culture, as above).

    (KLD)

  4. #4
    Senior Member
    Join Date
    Feb 2010
    Location
    North of the 49
    Posts
    399
    thanks for the replies. Yes its a full blown UTI but I still am on Macrobid and my urine cleared up but its still a little bit red in the AM and I feel fine. I talked to my Uro this morning and he said he was going to call me and tell me to get in for IV. But like KLD said I am not symptomatic right now and actually have a big weekend planned and would rather do that than sit in a hospital all weekend away from my family. But if I'm sick I will go in for sure.

    I admit I don't have a great education on IV AB but I was told once you start them you will always need them after wards and there are only so many IV AB on the market no??

    Also I used full strength VVF and it stayed in my bladder for 40min. Is there any hope VVF can wipe out a super bug? Pseudomonas was the name.

    I doubt its stones, I always have battles with UTIs shorty after cath changes and thats why I go 3 months to do changes. My family Dr went to a seminar where a infectious Diease Dr was speaking and he said 3 months for people with UTI battles is fine and it worked for me. I was doing it every 4 weeks and that caused more infections and I was doing everything clean as possible during the change.
    Mark 9:23 - All things are possible for those who believe.

  5. #5
    Macrobid has a tendency to turn the urine an orangey color.

  6. #6
    I admit I don't have a great education on IV AB but I was told once you start them you will always need them after wards and there are only so many IV AB on the market no??
    There is no basis for the expectation that once you have had an IV antibiotic for a UTI that you must always have IV antibiotics in the future. That is simply not true. It is the case that there are only so many oral AND IV antibiotics available, which is why you should not be taking antibiotics such as your Cipro or Macrodantin "preventatively", as they won't prevent UTIs, and will end up resulting in you being colonized with superbugs that may not be touched by any antibiotic, IV or oral.

    (KLD)

  7. #7
    Senior Member
    Join Date
    Feb 2010
    Location
    North of the 49
    Posts
    399
    Yes I understand that. I was just stating the only thing I can tell I might have an infection is my urine is reddish or a bit bloody but there are no more chunks coming from my bladder. It all looks fine.

    Anyone thing VVF can knock back the Pseudomonos??
    Mark 9:23 - All things are possible for those who believe.

  8. #8
    Quote Originally Posted by Patrick Madsen View Post
    Macrobid has a tendency to turn the urine an orangey color.
    That would be unusual with Macrobid (macrodantin). Perhaps you are confusing it with Pyridium (which is not an antibiotic).

    (KLD)

  9. #9
    Quote Originally Posted by SCI-Nurse View Post
    That would be unusual with Macrobid (macrodantin). Perhaps you are confusing it with Pyridium (which is not an antibiotic).

    (KLD)
    From uptodate.com under adverse reactions for nitrofurantoin:

    "Genitourinary: Urine discoloration (brown)"


    Having taken it for a couple years I'd have to forgive someone for calling the true color "orangey" it's just several shades darker than your classic bright neon pyridium laced urine.

  10. #10
    I am not sure if this is any use for your situation Dewie.
    I used to use a leg bag and Eurotip but found I was getting infection all too frequently. As I was ignorant of the potential harm I was placing myself in, I would ignore the symptoms and 'soldier on'. Thick smelly goo in the bag..nasty. So off to the Dr for anti biotic many times.
    This went on for some time until I had an episode that required an emergency visit by the ambulance service with morphine for the unbelievable pain.
    I thought that I had experienced a spine bleed.
    Long story short, after a week at the hospital, I ended up at the dedicated Spinal Unit , one of only two in New Zealand.
    It is a wonderful facility with even more wonderful, dedicated staff.
    For the very first time I received the real oil on correct care and importantly, the serious potential of ignoring UTIs.
    I have tried in dwelling catheter but am not comfortable with the rigmarol involved in that nor the incomplete emptying of the bladder nor the leakage I experienced.
    I spoke with others about Supra pubic and their experiences. I decided against that option too.
    The drug oxybutynin was suggested but I declined after reading of the potential side effects, especially with family health history.
    I self catheterise.
    It is a bugger but I can be sure that my bladder is emptying completely.
    It has been three years now without antibiotics.
    If and when I notice my urine beginning to smell, or that cloudy effect, I gather two good sized Aloe leaves from my garden and remove the gel. Mix it with some water into a glass then throw it down the hatch; with a water chaser because it isn't the best tasting medication lol.
    I also try my best to minimise my sugar intake and the amount of processed foods I eat.
    I avoid cooking with oils unless it is rice bran or similar. My preferred option is lard that I render down myself.
    The Aloe Vera works for me; it also saves me a small fortune, and time at the local GP.

    My situation is a progressive one; a major sized AVM.
    I had slipped between the cracks of our health service and as such, I had poor diagnosis and treatment for years until my admittance to the Spinal Unit and their care.

    See people who specialise in SCI, especially your urologist.

    I do hope that you can resolve your situation.
    Last edited by slow_runner; 06-20-2015 at 08:47 AM.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •