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Thread: bladder infection problems

  1. #1
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    bladder infection problems

    Hey everyone,

    Its been a while since Ive posted anything on here cause things were going good for a few years. I am a 37 year old male T2 and 9 years post injury. Right after my accident I used in and out caths until my bladder spincter had enough and became so tight I couldn't do those caths anymore. They switched me to a foley in dwelling cath for a bit and then the infections came. I was on marcobid a lot and cipro too. Around this time I heard about Vetercyn and started using that and I would go 3 months infection free. Then my uro did a super pubic cath which I like but the vetercyn never stayed in and would just pee it out and infections where like once a month.

    So I went back to the indwelling foley and used vetercyn, and I was told from another para his Uro told him to eat the goo inside aloe plant. So i tried that with the Vet and drinking 4L a day and it worked!! These last 3 years I was only having a infection once a year and life was good. Until December that is, I lost my dog and wasnt drinking like I should and had a infection come bad, I never had time to culture it and Macro worked for me last year so I took it. And didnt work so took Cipo. I was good for a couple weeks and got sick again and found out I had ecoli and needed IV anti biostics for 10 days. That was my very first IV AB and I hated it. The first night I was in the ER they gave me Gentamicin and once they cultured it and found ecoli they switched me to antipenan for the rest of the treatment. And after that IV AB I started taking D manosse and cranberry pills again. I took them in the past but stopped once I started Vetercyn.

    They never told me to send in another sample but I started to get sick 2 weeks after the IV anti biotics. Chills, fever, headache vomiting the normal UTI symptoms for me. I sent in another sample, and my family DR was on holidays and they told me cipo would work, and it took the edge off but after 4 days I called the Dr office saying its not working and still symptomatic but better. Then I was told Macrobid was the anti biotic not cipo OMG. So I finished my 5 day dose of cipo and on 5 days of Macrobid and I still dont feel well. I wish I knew the name of the bug but I dont.

    I know it sounds like I take AB by guessing and normally I dont but when I was only having a infection once a year I wasnt worried. Now Ive been on 5 anti biotic in 3 months!! Now I'm going insane thinking I'm totally resistant to both cipo and macro and only IV anti biotics will work and how long will that last? I have three goals in life, one to watch my daughter graduate, get married and see my grandkids. What other uro options are out there that can reduce the number of infections and give me quality of life? I meet with my Uro in a few weeks to see whats next and I want to see what you guys think.

    Appreciate any help,
    Duane.
    Mark 9:23 - All things are possible for those who believe.

  2. #2
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    I think I understand that you are no longer using a supra pubic, but once again using a indwelling urethral foley catheter.

    That said, there shouldn't be much difference in the rate of infection.

    I think you need to go back to the basics...when you have symptoms of infection, don't self medicate...get a urine analysis (UA) and a culture & sensitivity (C&S). Based upon the results of those urine tests, have your doctor decide which antibiotic you should be taking. Make sure that your urologists understands that as a person with a neurogenic bladder, you have complex urinary tract infections. That means that any antibiotics you are prescribed should be take for 12-14 days. After the course is finished, wait 2-3 days and then have another UA and C&S to determine if the infection is still lurking about. If another course of antibiotics is required, your physician may change the antibiotic.

  3. #3
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    Thanks gjnl

    yeah your right about the SP and foley being the same for infections. But when I had the SP and instilled the vetercyn id just pee it out. And with the foley it stays in. I don’t know but that’s what happened.

    I have gotten back to sending urine samples and culture. The first infection in December I didn’t but the last 3 infections I have. The Drs office made an error and told me the wrong anti biotic, but I’ve been on both AB for a week and I’m still symptomatic. My Drs try to keep me on a week dose AB, I don’t know longer dose would help me anymore if I’m not feeling better by now I know it won’t get any better.

    Just loosing my mind if macro and Cipro don’t work? Does that mean it will never work again and I’ll always need IV ABs from now on?
    Mark 9:23 - All things are possible for those who believe.

  4. #4
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    Quote Originally Posted by dewie27 View Post
    Thanks gjnl

    yeah your right about the SP and foley being the same for infections. But when I had the SP and instilled the vetercyn id just pee it out. And with the foley it stays in. I don’t know but that’s what happened.

    I have gotten back to sending urine samples and culture. The first infection in December I didn’t but the last 3 infections I have. The Drs office made an error and told me the wrong anti biotic, but I’ve been on both AB for a week and I’m still symptomatic. My Drs try to keep me on a week dose AB, I don’t know longer dose would help me anymore if I’m not feeling better by now I know it won’t get any better.

    Just loosing my mind if macro and Cipro don’t work? Does that mean it will never work again and I’ll always need IV ABs from now on?
    Macrodantin and Cipro aren't the only oral antibiotics that maybe therapeutic for you. There is Bactrim, Levaquin, and Ampicillin to name a few. Your doctors need to explore all the possibilities that your culture and sensitivity results reveal and select other possibilities based upon the outcome of the sensitivity.

    If appropriate antibiotics are being prescribed, you should be feeling better and a longer course of 12 to 14 days is appropriate in the case of your complex urinary tract infections.

  5. #5
    Your question about which antibiotics to take is a legitimate one. A better question is why are you getting so many UITs?

    For me the reason was kidney stones. I was pulling my hair out trying to figure out which choices would reduce UTI including technique, catheters, diet, lifestyle, meds/supplements, and procedures. None of it mattered much. I would run a course of antibiotics and still have the symptoms.

    Getting rid of the stones was the trick. It's a way better solution than managing the symptoms. Now, I can do whatever I feel like and never get a UTI or any symptoms. I just pay attention to basics like drinking of plenty of water, voiding often, and good technique. Even if I don't I can get away with it. Before, I couldn't get away with anything. One slip and bam... another UTI.

    I encourage you to ask many questions of your urologist. The urologist may want to give you a script and move one. Because that may be his comfort zone. Push him to break out his comfort zone if necessary. If you are treated with antibiotics and symptoms persist, then return immediately to your urologist for another culture. If you wait too long they'll write another prescription and be done with you. But if you return immediately (a couple days after completing the script) with the same serious symptoms, there is only so much they can keep giving you more antibiotics back to back. Eventually, they will be forced to try other options.

    For me, the turning point was when my urologist gave up and sent me to an infectious disease specialist. The infectious disease specialist said he wouldn't do anything until I got rid of the stones and so he sent me back to the urologist. The next time I saw the urologist he looked frustrated to see me and reminded me he referred me to the infectious disease specialist. I told him the infectious disease specialist refused to treat me until you get rid of the stones. It was at that very moment that I could see a different look in his eyes. He knew he had no other choice. He got rid of the stones. Why it took so much to get him to this point, I don't know. May be because they were uric acid stones and requires a surgery. Whatever the reason, I doubt it would have happened anytime soon if I was more passive. Don't settle. Persist and find the root case.
    Last edited by August West; 03-04-2018 at 05:50 PM.

  6. #6
    Antibiotics are determined by the bacteria overgrowth evident in the bladder. A urine culture will determine the bacteria and the antibiotics sensitive to address it. If you haven’t had an infectious disease (ID) consult it would be a good idea. ID will advise on treatment which is recommended only with symptoms.

    pbr
    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.

  7. #7
    get full scope and ultrasound, if all is well then try gent instillation. this has been life changing for many, contrary to popular belief this actually reduces abx resistance. its not systemic, just stays in the bladder. here is a recent study by u of m.
    http://www.cuaj.ca/index.php/journal...File/4434/3273
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  8. #8
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    I have never tried gentmycen. Ill read the info attached and ask my Uro what he thinks. I forgot to mention I am allergic to Chephalex which is a AB for the skin but the IV antipenan I took is in the same family as Chephalex but I didnt have an reaction. So I don't know what other oral AB I have left to take that I wont be allergic to. I've never had the Bactrim, Levaquin or Ampicillin that was listed above and dont know if they are in the same family as Chephalex. Ive always been given Cipo or macrobid.

    Also have a question about Vetericyn or Microcyn AH. Does it completely wipe out all bacteria in the bladder good and bad?? And would taking Vet long term for years help make the bugs more resistant and stronger? My family Dr is asking me those questions while I wait for my Uro appt in a few weeks. I know with some infections like this one my bladder spasems and gives me AD and if I dont get it out it will bypass the foley cath and pee it out. How often and how much Vet do most people use? I do 35min in the morning with 35ml and roll around, should I be doing it twice a day? I dont know if I could clamp my cath for 35min at night when I'm peeing a whole bunch.

    And thanks for the stone idea, I did get booked in for a ultra sound next week before I see my Uro. It takes forever to get into my Uro and want to make sure I got all my ducks in a row.

    Thanks guys and gals for the help and keep it flowing, I'm feeling a little bit more hopeful after this.
    Mark 9:23 - All things are possible for those who believe.

  9. #9
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    Quote Originally Posted by dewie27 View Post
    Also have a question about Vetericyn or Microcyn AH. Does it completely wipe out all bacteria in the bladder good and bad?? And would taking Vet long term for years help make the bugs more resistant and stronger? My family Dr is asking me those questions while I wait for my Uro appt in a few weeks. I know with some infections like this one my bladder spasems and gives me AD and if I dont get it out it will bypass the foley cath and pee it out. How often and how much Vet do most people use? I do 35min in the morning with 35ml and roll around, should I be doing it twice a day? I dont know if I could clamp my cath for 35min at night when I'm peeing a whole bunch.
    Microcyn is a proprietary formulation of oxychlorine compounds based upon the Microcyn Technology platform. Microcyn's base ingredient, oxychlorine, is similar to that produced by healthy cells in the body. The ingredients in Microcyn are Water, Sodium Sulfate, Sodium Phosphate, Sodium Chloride, Hypochlorous Acid.

    Microcyn was originally developed for wound treatment. It is not an antibiotic. It may more properly be characterized as an antiseptic. The fact that Microcyn does not contain antibiotics is significant due to the concern that overuse of antibiotics promotes resistance. The repeated and extended use of Microcyn wound bed has no adverse consequences and does not promote resistance. In addition, if there are regulatory limitations for use of antibiotics, those limitations do not apply to Microcyn since it is antibiotic-free. Microcyn has a safety profile comparable to saline. It is non-toxic and non-irritating while safe to use around eyes, nose and mouth. It contains no steroids or antibiotics and can be easily applied with no mixing or dilution required.

    There are no specific instructions for using Microcyn for bladder instillations. See post #90 at http://sci.rutgers.edu/forum/showthr...crocyn+ZEaland. That post discusses a product available in New Zealand based on Microcyn Technology that is labeled for use as a bladder rinse. It is called Microdox. The label suggests 50cc instilled in the bladder and retained for 15 minutes. I don't know how that guideline was established, but most of us have developed our own techniques for our own circumstances. I have a supra pubic catheter and instill 30cc into the bladder, one time per day, and retain it for about 5-7 minutes. Some people who manage their bladders with intermittent catheterization instill 30cc and retain the liquid in their bladders until the next time they cath. You've got to decide what seems to work best for you.

  10. #10
    DEWIE,
    i do hydrocleanse(microcyn) b4 bed and leave it in until next void or cath.
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