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Repeated UTI's - What can I do myself to help?

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    Repeated UTI's - What can I do myself to help?

    Hi All,

    I'm a 20+ year MS Gal. I'm still fairly mobile and have had what they call a mild course.

    I'm still RRMS, but my Bladder was one of my first symptoms - retention, difficulty urinating properly at times, hesitancy. I also go for periods when thinks are almost "normal".

    I've never been catheterised or had meds for this. In the last year - partly due to a reduced WCC on Avonex which i'm off now - I've had 9 UTI's, 4 i fixed myself by drinking loads of water to flush out. 3 - including the one I'm having now - have progressed to kidney infections.

    Antibiotics sort it, and also I drink 2 litres water+ every day. I do the stand up sit down, hum a tune, relaxation etc which has kept me going through the severest bouts.

    Is there anything else that I can do to help prevent UTI's?
    I've even considered having a wax on my nether regions , as although I'm meticulous with my personal hygiene, I wondered if it would further reduce bacteria in that area.

    Any suggestions, supplements, behaviour etc would be helpful
    Thanks
    Rach

    #2
    You could try some cranberry tablets that acidify the urine. The most common bug grown isE Coli and it is unhappy in acid environments!
    This is the tip given to me by my neurologist (I have to self cath) and has seemed to have helped. That or I'm very much better at passing the catheters!

    Comment


      #3
      Well, I'm not sure I have all the answers. I've been having repeated UTIs and I've had all the tests, am doing all the "right things" and still getting them.

      But here's where you need to start with a visit to a urologist. They'll do a test called a urodynamics test and determine if you have retention problems. Retention problems can cause UTIs because the urine stagnates within the bladder and thus a UTI. If need be, and you're retaining a lot, they'll teach you to self cath (it's not as bad as it sounds) but that way you won't have the urine retention issue.

      There are also some medications that might help, short of self cathing, if retention is your problem.

      You also need to get established with a urologist because when you have a UTI, you need to get a sample to the doc so they can culture it. Or your GP could do this, as well as a walk in...but you need cultures. As happens more often, than not, with me, they start me on an antibiotic once they determine I have UTI, but then call a couple days into the treatment and switch the antibiotic because the culture lets them know which antibiotic works best on that particular bacteria that causing the UTI.

      There's also a powder called D-Mannose that helps prevent UTIs for some folks...you can buy it on Amazon (it's cheaper than the health food store.)

      Right now I'm on a pill called Methenamine Hippurate that helps acidify the urine...bacteria don't like acid environments so some people use cranberry juice or ascorbic acid as supplements too.

      All things you should start to look into because kidney infections are not good...they ramp up your MS and they can cause kidney damage.

      Are these things foolproof and a guarantee that you still won't get UTIs...no...it sort of goes along with MS, but they should help. I've had a bout of them lately, and I do all the right things, so we're trying to figure it out.

      They're miserable things, and not uncommon with MS, but someone with MS definitely needs a urologist on your team of doctors.

      Comment


        #4
        I have had good results using D-Mannose.

        Comment


          #5
          I have had trouble with recurrent UTI's too, and I agree with what rdmc said. You start with a thorough urological exam, which for me included at CT-KUB (a CT scan that looks at the Kidneys, Ureters, and Bladder) to be sure that the plumbing was all lined up properly, and then the cystoscopy and cystometrogram to look inside the bladder and to measure its function.

          My studies showed that I tend to retain urine because my bladder does not empty properly, making me prone to infection. I drink lots of fluids to stay hydrated and keep things flushed out, though I stay away from caffeine which is a bladder irritant. I take cranberry tablets and Vitamin C as recommended by my neurologist, to keep the urine acidic and inhospitable to bacteria.

          I have not had much luck with medications to make the bladder contract better, but at times I have gone on prolonged courses of prophylactic antibiotics - one tablet daily of Macrodantin (nitrofurantoin generically) to prevent bacteria from developing into a UTI. I have done this for about 6 months, then stopped, and managed to stay UTI-free for over a year. If the UTI's start coming back, then it is "rinse and repeat" with the prophylaxis.

          Though it is a good tactic to have a standing order for a urine culture at the local lab or hospital, I also keep a supply of antibiotics on hand (a standing paper Rx to take to the pharmacy would also work) that I can start if I get typical UTI symptoms. That often happens nights and weekends, and after you have had a few dozen UTI's you recognize the symptoms and you know that the culture would show "the usual suspects" so why waste time in the emergency room?

          Bladder infections can be common with MSers, and a real nuisance, but having the infection extend to the kidney ("pyelonephritis") where it can cause real damage is even worse. I work hard to keep on top of this to avoid the pyelonephritis, and I have been mostly successful.

          Comment


            #6
            I would also recommend seeing a urologist or uro-gynecologist.

            Keep in mind that there are other issues that can cause UTI-like symptoms. If you have not been tested and had positive bacteria results for each instance, it leaves open the possibility that there is something else going on.

            Good luck !

            Comment


              #7
              I also get uti's at the drop of a hat. I didn't know it was a possible MS! Problem I get then every time I have sex if I don't have an antibiotic to take after. I also found out high blood can mimic a UTI. I'e
              A friend hears the song in my heart and sings it to me when my memory fails .
              (unknown)

              Comment


                #8
                Might try wiping front to back.
                Cranberry juice is the other thing I've heard of.
                Some people are just 'lucky' to be built with a short ureter.
                techie
                Another pirated saying:
                Half of life is if.
                When today is bad, tomorrow is generally a better day.
                Dogs Rule!

                Comment


                  #9
                  I'm butting in to emphasize that the Cranberry Juice NEEDS to be the REAL THING!! NO "Cranberry Juice Cocktail" stuff!! Read the ingredients, if it says sugar or sugar added, skip it.

                  One thing (ok, two) that I haven't seen mentioned that I know Dr's suggest- NO loungeing in the bathtub. If you don't have a shower, wash and get out, keep your nether regions above the waterline once soap is in the tub and use a big pitcher to rinse off. #2 is never ever bubble bath, oils, any of that additive stuff.

                  I have 3 girls, one of whom seemed to get frequent infections. The no bathtub worked for her.

                  Comment


                    #10
                    No tight pants was a suggestion given to me years ago. I suffered from 3 or 4 UTIs every year for years before getting MS. Getting urine cultured is also a good idea.

                    I went to a urologist early on, because my PCP kept giving me macrodantin, and I'd get the UTI back. (Sulfa didn't work cuz I ended up allergic to it.)

                    That urologist gave me an RX for Cipro that could be refilled as needed for a year. That seemed to keep me only getting one a year.

                    Then after 20 years, Cipro quick working! Did culture, and macrodantin was recommended, and it cleared up an especially nasty round (lasting several months!)

                    Since then, I drink real cranberry juice, about 1/4 c. every day and I haven't had a UTI since!
                    Brenda
                    Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

                    Comment


                      #11
                      Originally posted by 4boysmom View Post
                      No tight pants was a suggestion given to me years ago. I suffered from 3 or 4 UTIs every year for years before getting MS. Getting urine cultured is also a good idea.

                      I went to a urologist early on, because my PCP kept giving me macrodantin, and I'd get the UTI back. (Sulfa didn't work cuz I ended up allergic to it.)

                      That urologist gave me an RX for Cipro that could be refilled as needed for a year. That seemed to keep me only getting one a year.

                      Then after 20 years, Cipro quick working! Did culture, and macrodantin was recommended, and it cleared up an especially nasty round (lasting several months!)

                      Since then, I drink real cranberry juice, about 1/4 c. every day and I haven't had a UTI since!
                      You bring up a really good point that we need to be aware of. I've been at this for awhile, and I guess I'm just one of those people that are susceptible to them. Used to only get 2 or 3 a year, but seems as my MS progressed so did the UTI problem.

                      That brings me to antibiotics. The reason you want a culture, is you don't want to be taking antibiotics that are not effective for that bug...in which case you're wasting your time. I've become allergic to the major UTI treatments over the years, Bactrim and Macrobid, and have always had an allergy to Cipro, not because of overuse, just did.

                      Then Keflex worked for me, so before I started getting cultures, the doc would just say take Keflex...I did, no allergy. I kept a Rx on hand at home, and would use test strips, and if I had a UTI take Keflex for 3 days.

                      Then when UTIs became more often he put me on a long term course of Keflex...as a result I now have Keflex resistent E-coli. Those "bugs" are smart and you want to find the med that works and take it for the shortest course possible for uncomplicated UTIs. Sometimes complicated ones take longer.

                      If you read about the bacteria that cause UTIs, so many of them are becoming resistent to the meds we normally take. A few months ago I had to be admitted to the hospital for 4 days for IV antibiotics, not because I was so sick, but that particular bacteria only responded to two meds (one I was allergic to, and could only be given by IV.)

                      So just like steroids, which doctors like to pass out and yet can have devastating long term effects. We have to be diligent to make sure we're not getting overdosed with antibiotics, because they can lose their effectiveness, and then the UTIs get harder and harder to treat.

                      Just my 2 cents (but the voice of experience because that's where I am now.)

                      P.S. Many urologists will now recommend a 3 day course of antibiotics, and then retest. The more recent thinking because of bacteria resistence is the shorter the course the better.

                      Comment


                        #12
                        One more item regarding antibiotics: My urologist has me take trimethoprim rather than macrodantin when I have to go on an extended antibiotic prophylaxis (to prevent UTI). The trimethoprim is the one part of the macrodantin that doesn't cause possible side effects. It is very rare, but Macrodantin use long term can cause a lung problem which is dangerous. Sorry I can't recall exactly what the lung issue is. Pulmonary fibrosis? Don't quote me. Ask your doctor about Trimethoprim. I take 100 mg. Every few years or so after I finally clear up a string of UTIs. Works for me. Good luck!

                        Comment


                          #13
                          I totally agree with rmdc and tapdancer. I was given Cipro because it seemed to work, and no one bothered to culture! When the doc said macrodantin/macrobid I cringed because I knew it didn't work years ago. But luckily I tried it, and by golly, the dang UTI cleared up!

                          So for me, drinking the cranberry juice has kept me from continually getting a UTI, so I'll just keep drinking it every day!

                          We do need to watch our antibiotic use! Between UTIs and sinus infections, I was always on something, it seemed. It scared me when I became allergic to pencillin, sulfa, and clindamycin. I drink cranberry for the UTIs, and rinse with Neil Med for nose along with Mucinex D daily.

                          Better than overexposing to antibiotics!
                          Brenda
                          Adversity gives you two choices in life: either let it make you bitter, or let it make you better! I choose the latter.

                          Comment


                            #14
                            Originally posted by Tapdancer View Post
                            One more item regarding antibiotics: My urologist has me take trimethoprim rather than macrodantin when I have to go on an extended antibiotic prophylaxis (to prevent UTI). The trimethoprim is the one part of the macrodantin that doesn't cause possible side effects. It is very rare, but Macrodantin use long term can cause a lung problem which is dangerous. Sorry I can't recall exactly what the lung issue is. Pulmonary fibrosis? Don't quote me. Ask your doctor about Trimethoprim. I take 100 mg. Every few years or so after I finally clear up a string of UTIs. Works for me. Good luck!
                            Since I've had MS I've become allergic to lots of antibiotics. Some are more reactions than allergies, but they list them as allergies.

                            Macrobid gave me a pulmonary hypersensitive reaction....it took me taking it a few times for the doc to figure that out, but when I took it I'd get short of breath, and have a fever that would seem to wear off just before I had to Take the next pill...once I was even treated for pneumonia because the reaction was so severe. Eventually we figured out that since it happened when I took Macrovid, it was the pulmonary hypersensitivity mentioned in the warnings.

                            Cipro and Levaquin give me an arrhythmia, which my urogyn says he finds is common in women with valve issues like mitral valve who take a quinolone antibiotic.

                            After taking Bactrim for years , off and on, of course, one day I took a pill and developed a rash. Same thing with Vancomycin..was on it for 5 weeks to treat a post op infection with no problems and then big time rash developed.

                            I took a lot of antibiotics as a teenager for sinus problems, but never developed allergies. that is all new with the MS.

                            What's scary too is that so many of the bacteria that cause UTIs are becoming resistant because of the frequent use of antibiotic. None of the usual preventive methods have worked for me, that's why I'm hoping this methenamine works. the neuro urologist prescribed it, but my GP says it's an old way of dealing with UTIs. Well, old is not always bad, and I'm crossing my fingers it works

                            Comment


                              #15
                              i know this is a really frustrating problem and like the situation you describe, the urinary issues for me were some of the most severe and earliest symptoms of MS. the hipprex someone else mentioned has helped me somewhat (methanmine hippurate), keeping fluid intake up, wiping from front to back, cotton underwear instead of man made fibres etc etc but even so i still had recurrent and quite severe infections- i was put on low dose long term antibiotics but my urologist did not want to keep me on the for more than a couple of months- mainly because she said that for those of use with chronic urinary issues the risk of antibiotic resistance was far too high and it is true that the frequency of resistant microbes is increasing. Moreover she said that even though it seems as though i was doing every thing i could to prevent UTI's there had to be an issue that we had not been able to address and that was when she sent me for urodynamic studies, she had already done a quick ultrasound to check for "residual volume" while i was at here rooms- she sent me to empty my bladder then used a simple handheld scanner to read how much was left in my bladder- if there is more than 150mls we are not emptying properly and this is a major risk factor for UTI's - this and the urodynamic tests confirmed neurogenic bladder and the need for intermittent catheterisations- for me for other disability reasons, a permanent catheter was more appropriatte and at first i was really loathe to go down that track but the thought of getting a UTI/kidney infection that was resistant and therefore developed to septicemia, potentially lifethreatening! that was enough and i accepted the catheter since then i have only required antibiotics once. Intermittent catheterisation is easy to do - have they checked to see if you are retaining urine after peeing, if that is the case, no matter what you do, infection is an increased risk and long term antibiotics may help in the short term but only at the risk of creating more severe issues down the track

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