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Plagued with UTI?s; Frustrated and lost.

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    Plagued with UTI?s; Frustrated and lost.

    I need help. I cannot keep doing this.

    I'm a c5/6 quad for 13 yrs with a supra pubic catheter. I use an 18fr silastic catheter which gets changed every 4 weeks. I have it irrigated Daily with saline.

    I have always had infections. Averaging every 3 months. They are excruciating, and the dysreflexia is unbearable. I can no longer take it.

    Recently I?ve had recurring staphylococcus aureus uti infections. After the last 2 catheter changes it stirred up the infection. First time went on Cloxacillin for 10 days. Seemed to work.
    After the next catheter change >3 weeks later, it came back. Started on cloxacillin again, but this time had a reaction (some hives). So I did 7 days of Keflex.

    Now I?m due for a catheter change tomorrow and I?m a mess. I am feeling slightly symptomatic since yesterday and I know it?ll stir something up.
    I cannot describe how this dysreflexia consumes me when I have an infection, it?s fucking brutal and relentless.

    I am done feeling this way and I?m done with these infections. My urologist offers no solutions. Supra pubic catheters WILL produce infections, and that?s that.

    Had a cysto and kidney ultrasound last month. The lingering dysreflexia from the cysto is too much to bear and these doctors cannot comprehend that. It?s isolating.

    What can I do? Please.

    #2
    Have you tried antibiotic prophylaxis? An urgent care doc was nice enough to start me on nitrofurantoin prophylaxis one day when I showed up with yet another UTI on a weekend. I’ve been on it for a few years now and while I’m sure my piss is dirty if I was ever to get a UA or a culture l, I don’t end up in the hospital twice a year with a horrible UTI like I used to.

    My urologist and PCP never offered this as a solution (urologists like to do procedures, not boring prophylaxis and abx prophylaxis is a bit outside the comfort zone of most young PCPs, what with antibiotic resistance and all). Might be worth asking about. It’s not benign, but it’s been well worth it for me. I get infections so easy that if I miss two doses of nitrofurantoin I start getting feverish and my piss smells like it’s brewing a whole host of bacteria.

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      #3
      I'm wondering if the daily irritations are the source of your problems? I have an SPC and don't ever irrigate. Also change the catheter monthly.

      Comment


        #4
        If you have bladder stones, your doctor would have seen them in the cystoscopy. Just the same, ask your doctor if stones are a possibility. Bladder stones can harbor bacteria and when you stop taking antibiotics the infection will return quickly. But instead of a cystoscopy to check for stones, there are imaging studies that can be done that are non invasive.
        • Computerized tomography (CT). CT uses X-rays and computers to quickly scan and provide clear images of the inside of your body. CT can detect even very small stones and is considered one of the most sensitive tests for identifying all types of bladder stones.
        • Ultrasound. An ultrasound, which bounces sound waves off organs and structures in your body to create pictures, can help your doctor detect bladder stones.
        • X-ray. An X-ray of your kidneys, ureters and bladder helps your doctor determine whether stones are present in your urinary system. But some types of stones aren't visible on conventional X-rays.


        Are you using a sterile foley cath kit to change the supra pubic catheter?

        Do you maintain a closed system? See diagram below (provided by SCI Nurse KLD, post 33 at https://www.carecure.net/forum/showt...ght-bags/page4)

        Why do you irrigate with saline daily? Do you have sediment that clogs your catheter? A better option may be Microcyn instillations or Gentamicin washes.
        Gentamicin threads on Care Cure Community:
        https://www.carecure.net/forum/showt...ght=gentamicin
        https://www.carecure.net/forum/showt...ght=gentamicin
        Microcyn Instillation threads on Care Cure Community:
        https://www.carecure.net/forum/showt...ght=gentamicin
        https://www.carecure.net/forum/showt...ght=gentamicin

        Do you clean around the supra pubic stoma once a day. Soap and water wash and rinse is good. MicrocynAH Wound and Skin Care Liquid is good too.

        Have you seen an infectious disease doctor about your frequent and recurring urinary tract infections (UTI)? I have found that infectious disease doctors are more interested and adept at using antibiotic than urologists. for complex, frequent, and recurring UTIs.

        I don't know where you live. If you live in the United States, you may want to contact Poiesis and request free samples of their Duette catheter. They have sterile cath kits. The Duette catheter has two balloons with the drainage eyelets between the balloons. The tip of your catheter may be irritating the wall of your bladder. http://www.poiesismedical.com/products/duette/
        Attached Files

        Comment


          #5
          Funklab, I have not tried antibiotic prophylaxis. I have discussed a long term antibiotic with my urologist, though either of us are keen on it. Strictly because of building a resistance, and if/when that does happen what do you do?
          I’m allergic to sulfa and now reacted to cloxacillin which is a penicillin. So my choices are limited and I can’t afford any more antibiotic resistance.
          I’m thrilled at the prospect of being uti free, but when you say if you skip a few doses you feel symptomatic that greatly concerns me.
          I may end up doing that option as a last hurrah, which could be sooner rather than later.


          Rusty James, I irrigate daily and have done so since I got the SP 12 yrs ago. I thought it was a standard thing up until recently. I used to get a lot of sediment which would plug my catheter and cause severe dysreflexia, so I assumed irrigation was the solution to that. I change my leg bag 3x a week and night bag once a week.



          Gjnl, Yes I use a closed leg bag system. I switch to the night bag at bedtime. They are not joined together during the day like in that photo.
          I have read the microcyn threads and they looked very promising, However the later posts were not so. Some saying the microcyn may have precipitated a uti!
          Perhaps using it to clean the outer site, I will look into this. We use betadine now.

          I’ve been wanting to see an infectious disease doctor for a while. Both my urologist and GP didn’t think much of the idea.
          I see my GP this week and will have him refer me. Unfortunately here in Canada it’ll probably take a while.

          These infections have caused a great deal of distress in me. My already poor outlook has been pushed to the brink.
          I am not active socially with other quads and don’t reach out online much. I struggle mentally and find it hard to cope socially. I just want to be rid of these brutal infections.

          Comment


            #6
            Originally posted by eskay View Post
            Gjnl
            I have read the microcyn threads and they looked very promising, However the later posts were not so. Some saying the microcyn may have precipitated a uti!
            I don't recall reading that, but I doubt that there have been many comments of that nature.

            I have used Microcyn Technology for nearly 8 years and in that time have had less than a handful of urinary tract infections. I had a cystoscopy in July 2017. My urologist is completely impressed with how my bladder looks and the success I have had. I have a supra pubic catheter.

            Gentamicin washes are an option worth exploring with your urologist.

            Comment


              #7
              Originally posted by eskay View Post
              Funklab, I have not tried antibiotic prophylaxis. I have discussed a long term antibiotic with my urologist, though either of us are keen on it. Strictly because of building a resistance, and if/when that does happen what do you do?
              https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228625/

              You're right to worry about antibiotic resistance, however nitrofurantoin has essentially none. If you get a "really bad" UTI, no one is going to treat you with nitrofurantoin anyway (it is oral only and doesn't reach high enough concentrations in the kidneys to be effective if the infection ends up going that high). It's certainly not without it's risks, and it straight up doesn't work against some of the nastier UTI bugs (pseudomonas for example).

              I'd bet the Infectious Disease doc will have a much better idea how to treat your UTI's than your urologist. It seems much more in his field of practice. Hopefully you get to see him soon.

              Comment


                #8
                It shouldn't take long to see an Infection Diseases doc. If you're in Canada, I'd go to the ER next time you're suffering and ask to see one. I wonder if changing out the tubing more often would help? I had to go from once per month to twice per month for an indwelling foley.

                What are you drinking?
                Roses are red. Tacos are enjoyable. Don't blame immigrants, because you're unemployable.

                T-11 Flaccid Paraplegic due to TM July 1985 @ age 12

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                  #9
                  Gjnl, can you please help with microcyn. What do you get, microcyn, microcynAH, or vetericyn?
                  You mix with saline?, do you instill daily into SP tube? Do I have to plug the catheter and leave it in? My bladder is extremely sensitive I wouldn’t be able to hold it long.

                  I just want to know your regimen as we both have SP catheters.
                  Please

                  Comment


                    #10
                    Originally posted by eskay View Post
                    Gjnl, can you please help with microcyn. What do you get, microcyn, microcynAH, or vetericyn?
                    You mix with saline?, do you instill daily into SP tube? Do I have to plug the catheter and leave it in? My bladder is extremely sensitive I wouldn’t be able to hold it long.

                    I just want to know your regimen as we both have SP catheters.
                    Please
                    I instill between 20-25cc of MicrocynAH Liquid Wound and Skin Care Spray mixed with 5-10cc of saline into the bladder one time per day and retain it for between 5-10 minutes. That may or may not work for you. You will have to experiment until you find a technique that works for you.

                    My suggestion would be to retain the liquid for at least a minute or two.

                    Comment


                      #11
                      Hey eskey
                      im going my own infection battle but it started from me not drinking enough, my normal 4l was like 1 for a few days and I got nailed and still fighting. But I was doing real good before, I used the Microcyn AH skin and wound liquid not the gel and used 30ml straight first thing I'm the morning and roll around every 5 min for 40min total. And I was still having infections once every 3 months but it was better than once a month or less!

                      this where is gets weird and I can't explain it. A para in New Zealand reached out and said his uro over there told him to scrap the goo out from inside a aloe leaf and do the once a week and he's been infection free for years. I like natural remedies so found some aloe plants at first and did it less like once ever 2 weeks and then I was infection free for a year at a time. I'd normally take a AB in winter when I was peeing way to much blood but for 3 years I had two infections. This last December I lost my dog and didn't care about much for a while and the infection came back to kick my ass but that was my fault. I recently found you can buy aloe juice or aloe goo at Natual health stores so that's what I'm trying now and take it a couple times a week now. I'm also back trying cranberry pills and Dmannose. But try the aloe if you can. It did wonders for me
                      Mark 9:23 - All things are possible for those who believe.

                      Comment


                        #12
                        This is an old post , I know but, I'm curious what are you doing with the aloe gel? Using it topically , I assume. Curious how it's been helping since you posted this?

                        Comment


                          #13
                          Originally posted by oncetherwasagirl View Post
                          This is an old post , I know but, I'm curious what are you doing with the aloe gel? Using it topically , I assume. Curious how it's been helping since you posted this?

                          Hi, I am the para that dewie27 mentioned in his post.
                          ( I wonder how you are dewie?)
                          I take the Aloe as a drink and chase with water - because it tastes terrible. The natural product is nothing like those sweetened(?) commercial preparations.

                          I hit upon using Aloe internally myself after using Aloe for all manner of injuries, burns etc.
                          Then did some reading- digesting Aloe certainly is not a new discovery.
                          There are many others who use it successfully.
                          Mind you, in my experience, if an infection is allowed to gain ascendancy through being slack with the maintenance regime, you will need something orthodox.
                          I had some issues in recent times and became casual to the point I developed sepsis and had a fortnight in hospital on intravenous.
                          Now that is another story....
                          If you wish, check out my posts and others, on the benefits of Aloe. Or PM me if you wish.
                          Usual PC BS disclaimer - this is my personal experience with Aloe, it may not be yours.
                          Do research.
                          Earlier on when deciding on what type of bladder drain I was going to adopt, I do remember speaking with some wheelchair rugby boys about catheters. they both had supra pubic; one mentioned that he had a silver trace and didn't suffer from UTI. Both said that the main benefit of supra was being able to get on the piss with mates and not have to worry about the obvious.

                          That is all I can recall and I didn't pursue it further as I opted for intermittent catheter. It is a bore at times but I like the means to drain the bladder more completely and allow it to 'function' near as it should.
                          Be safe, keep clear of the Corona.
                          Last edited by slow_runner; 22 Mar 2020, 4:18 AM.

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