UTIs and CIC

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I am now in the middle of my 3rd UTI since starting CIC in earnest last Sept. ( 4 times per day ). The first time was just inexperience but the last two were due to severe irritation of the urethra which rubbed off part of the protective mucous lining and allowed opportunistic bacteria to take hold. The first irritation was caused by not usinf sufficient lubrication and the second was from holding it in for 16 hours during a trip and not cathing.

The latest lab report is the same as the others: colonization with Enterococcus species. My symptoms are also always the same: rapid increase in burning and pain while urinating over the course of an hour or two followed by pink urine and having to pee every minute a few drops while also screaming.

The first time I was given Macrobid and the last two times Cipro. In all three cases the symptoms all but disappeared within 3 hours of taking the first pill! But of course I have to finish the whole 5-day bottle.

I wanted to invite everyone who has had experience with UTIs due to CIC or cathing in general to share their knowledge about this dark-side of cathing. Also guys who have avoided UTIs are welcomed to share their secrets.

Thanks to everyone.

Neil

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  • Posted

    Be careful with cipro. The side effects can be bad. It's one if those meds uros tend to over prescribe. Look up floxed .

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  • Posted

    I will weigh in for what it is worth.

    It sounds more like you are just super sensitive and it does not take much send you into a UTI.    I have been self cathing for about a year with no problems, (4-5 a day)

    If you are not using the "Speedee cath" mfd. by Coloplast, I would highly recommend it.

    This last month I realized it was going to be necessary to Increase my usage and was a little afraid that I was going to run out before next shipment and since I was in between Uros ,  and basically had no one to increase my scrip, I was able to reuse the compact 1 time by rinsing it with 91% alcohol and rinsing it with bottled water then putting it in a new 1 gallon zip lock baggie and then dumping the remainder of the lubrication into the zip lock baggie and that was plenty of lube for them to be reused.  Smooth as silk too!     I did this at least 30 times to stretch my 90 count to a 120 count,  I know it sounds risky but after the first couple of times it was like a very simple process,  my point is that even doing that there were no problems, and the lube was plenty.    Just something I did but it caused no UTIs.

    Maybe the ones in the large bags are not as well lubricted as the ones in the plastic compact tubes??  (Those are the only ones i use,  just FYI.)

    Good luck Neil,  not good to have to keep going on antibiotics!

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  • Posted

    Hi Neil,

    If you can add to your story and refresh me on a few things.

    1. Do you know which Enterocccus you had? Is it always the same? How far apart where the UTi's? Three in six  months if I read this correctly?

    2. How much Macrobid did he give you? Did your doc do a culture after you were asymptomatic to make sure the Enteroccous really left your system? 

    3. What catheter are you using these days and what is your routine such as washing hands, type of antiseptic, etc.

    4. What are your natural void volumes if any and what are your cath volumes? Are the totals over 400ml and how often/ How much came out of the catheter after you held off for 16 hours?

    5. How long did you wait from when you had the symptons until you started taking the antibiotics?

    -------------

    I had a couple of UTis when I first started CIC probably due to trauma as my urethra was very sensitive back then. The second UTi was probably because the first one wasn't treated properly. Developed into epidyimytis, no fun. Finally found a uro who treated it properly. Your five day course of antibiotics sounds very short for what is considered a complicated UTI, regrdless if it went away so soon. Since then I've been colonized (asymptomatic UTI) about 3/4 of the time but only symptomatic and treated maybe 1-2 times per year. Always hard to know but I think I can trace the cause to careless/rushed technique and trauma from experimenting with new catheters which never worked out!

    Jim

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    • Posted

      Thanks guys. I have always used the Speedicath hydrophilic 14 coudes. I open the catheter package part way and squeeze in a small amount of Surgilube gel that adds additional lubrication to the hydrophilic coating for a smooth ride through my large prostate. I wait about one minute and the gel slides down nicely and coats the catheter which I then slowly pull out to start the dive bombing.

      I wipe around the tip of the penis and inside the spread meatus with Dynarex sterile towelettes. The spray (Vetricide?) was too harsh for me and caused skin irritations.

      During the day my NVs and PVRs total less than 400ml but at night I am awakened about 3 to 4 am and cannot NV and the CV is 500 to 600ml. I cath just before bed at around 11:30pm and then again at 7 am and those are less than 400ml total.

      I finally did a cath this afternoon after being off for over 2 days. It went well and the CV was 350ml with a NV just before of 100ml though I try not to do a NV just before the cathing to have more bladder pressure to dilate the urethra for easier penetration.

      My first UIT last Fall was because I missed the dive bomb entry and hit an unclean part of the penis and was too lazy to start over, so that one I deserved. I since learned my lesson.

      The symptoms started about mid morning but became very severe early afternnon. I could not reach my PCP so my wife advised me to take a Cipro which I had left over from my biopsy in Feb. This was on Thursday. The symptoms were almost gone by dinner time and I saw my PCP yesterday who gave me 3 more days of Cipro since I already had two days.

      Thanks guys.

      Neil

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    • Posted

      Sorry Jim  - a few more answers to your questions.

      The lab report just says Enterococcus species but not which one. It was the same every time. I do not know how much Macrobid I was given but it also was very effective in a few hours.

      My last UTI was in Dec when I rushed the entry and riped away part of the mucous lining. I was tested again in early Feb and was totally negative then even for colonization just before my biopsy with Dr.K.

      Am I weird?

      Thanks.

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    • Posted

      I was just wondering if the short course of antibiotics was enough to clear the infection and if the other two infections were just part of the same. Therefore the questions on dosage, duration, how far apart were the utis etc. Also, since you cleared so fast was wondering if really a true UTI that's why I asked how long you waited to get treated.

      Anway, if you contaminate yourself like you might of, or traumatize the urethra, that's enough for some of us to get a UTI. You might ask your uro about taking a pholactive dose after a mistake or trauma. For example, I took one Macrobid yesterday and one today prophalactively because I was testing the new flex coude's and didn't want to get colonized. I wouldn't do that very often but it's a strategy.

      Jim

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    • Posted

      Thanks Jim. The wipes I use have alcohol on them which irritates my skin. Can you recommend any good antispectic ones without alcohol? My continence nurse says I should not use antiseptic wipes or spray but just clean wipes as daily use could lead to bacterial-tolerance over time! Seems we just can't win at this!

      I do appreciate all the advice here but my main purpose of this thread was for everyone who has had UTIs to write in and discuss their experience - not many takers so far so maybe UTIs are not that common with CIC.

      Take care.

      Neil

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    • Posted

      Neil,

      Alcohol wipes irritate my skin as well. Stopped using them. Providone Iodine Swabsticks (I like the three packs) do not irritate, are very moist and give good coverage, however they are a bit of a mess so not sure I would travel with them. Dynarex BZK swabsticks also do not irritate, however some of the packets are on the dry side, so you may have to open more than one for coverage. Then there's the Microcyn/Veratacyn/Puracyn/Hydrocleanse sprays. No sting, no mess. They swear by this stuff over at the SCI forums but sometimes I wonder if it has the anti microbial qualities the manufacturer claims. Still I use it sometimes.

      Interesting what your nurse says about antiseptic wipes. Doesn't mean she's right but interesting. What exactly are "clean wipes"? 

      FWIW my cath PA told me to wash my hands but not to bother even wiping my penis head or meatus. She's also the one that ignored my plea for antibiotics which eventually turned into epidymitis. Oh yeah, she also gave me red rubber catheters and told me I could use each one for a week if I cleaned it with soap and water after I used it. After checking with my insurance company (200 a month with Medicare) I declined that offer and threw the catheter away after every use.

      -----------

      So, sorry, my story may have gotten buried in my advice to you, but sounded like you needed a little with all your UTIs smile

      I'll fast forward past the first three months of CIC where I had multiple UTIs due to trauma and bad advice and neglect by the catheter PA's. 

      After that I was colonized not all but much of the time but only needed be treated 1-2 times a year for symptomatic UTI's. I think I touched the catheter once in the middle of the night and was too lazy (or too asleep) to throw it away and probably got contaminated. Another time I tried a new coude and stuck myself which probably created a micro tear. And another time I probably didn't need with antibiotics but since I wasn't cathing much I just wanted to get uncolonized. But keep in mind that I pretty much only cath at home which is more sterile than on the road with public bathrooms. 

      Overall the literature talks about UTIs with CIC, but hard to tell the real incidence. Here, it seems that the incidence of UTIs is low. But if you've been only doing this 6 months, my guess is that you will have less UTIs in the next year than you had in the last 6 months.

      Jim

       

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    • Posted

      Thanks as always Jim. By clean wipes she meant alcohol-free as she thinks repeated use of alcohol can cause bacterial resistance after a while. But I agree it wan't to clear. I will call her tomorrow to clarify.

      I also wanted to ask you if the next time I get these acute symptoms if I should just tough it out for 24 hours rather than reaching for the antibiotic bottle? I was reading that acute UTIs tend to resolve themselves anyway just like the flu but it is one thing to read about it and another to experience it!

      Maybe the lack of response to this thread means that most guys don't have UTI issues with CIC. But then those are the ones I would really like to hear from here so they can share their secrets with all of us. But I guess when things are going well most people just get on with their lives and don't follow forums and blogs.

      Thanks again for all your good advice. Maybe my Gat Goren procedure in May will open up my urethra like the Niagara river in Springtime and then I wouldn't need CIC!

      Neil

       

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    • Posted

      Neil,

      Did a little research and I emphasize "little" so please take the following with that caveat...

      Alcohol and therefore in theory alcohol based wipes d onot cause bacterial resistance. Problem here is that alcohol should not be used on sensitive tissue or damaged tissue. That's why it stings. 

      Providone Iodine does not cause bacterial resistance.

      BZK wipes (Benzalkonium Chloride) and some other antiseptics may cause bacterial resistance. More study needed. These are alcohol free wipes that do not sting and are commonly found in urologists offices.

      Anti bacterial soaps may cause bacterial resistance.

      That said, all of the above are often recommended by doctors and in the literature for CIC, with the exception of alcohol which can sting and irritate. 

      Is this another "who knows?". Who knows smile

      --------------

      It's the weekend. I think you'll probably here from more fellows tonight and tomorrow, however based on what I've read here, most people here who CIC don't have very many UTIs -- maybe one a year or less. Not to say it isn't a problem for many, and is so listed as one of the side effects of CIC. Don't know how much those statistics take into effect the SCI (spinal chord injury) community however. They have their own challenges, among them no feeling when they cath which makes them more suseptible to micro trauma from cathing which can cause UTI's.

      Jim

       

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    • Posted

      Not sure if this helps but my old knee doc used to rub down my knee with alcohol before giving me injections. My new knee doc uses iodine. I asked what's the difference? She said alcohol evaporates so fast, the area can become contaminated before they do the injection. Iodine doesnt evaporate and maintains the stearyl field before and after the procedure.

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    • Posted

      Hi Jim - thanks for this but now I am really confused! The Dynarex wipes I use contain both alcohol and BZK so if I drop the alcohol the BZK may develop a bacterial resistance and if I keep the alcohol then I wouln't get that but I will continue to irritate the skin (I use polysporine for relief).

      Iodine is messy and stains. So maybe I should try the sprays again but the one I have here did sting somewhat (MicrocynAH).

      Maybe my post for this thread was too personal and it looks like I just want help for myself rather than being a thread for all things UTI? I may try a different tack in a few days and make it just a general request for guys doing CIC and not discuss me.

      I will talk again tomorrow with my continence nurse and see what she says but unless someone is doing CIC I take their advice with a grain of salt (around the rim!).

      Thanks

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    • Posted

      Can you give me a product number or PM me a link to the Dynarex wipes you use. The ones I have are alcohol free. Are you getting a burning or stinging from the Dynarex with alcohol?

      Yes, Providone Iodine is messy and can stain sinks, etc, if you don't wipe off right away. I still use it however, but since I only cath every once in awhile not a big deal.

      Microcyn doesn't sting at all but again not sure it's just snake oil. Still, I do use it sometimes and in fact used it the other day to spray off the Providone Iodine!

      I'm sure you will get more responses but sometimes people here don't get notified about new threads on a timely basis. I got notified on this, but sometimes I don't. 

      On the bright side, maybe not a lot of UTI issues with CIC here and my guess is that with time your UTI's will diminish their frequency.

      If you speak to your continence nurse, ask her for a source for her statements. Well, maybe that's not the way to make friends with the medical community but you get my drift smile

      Jim

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    • Posted

      Thanks Jim. I recall the nurse who tried to teach me CIC last summer (nurse cratchet) said not to use sterile wipes or sprays unless they contained alcohol since I would quickly develop a bacterial resistance.

      So the wipes I continue to use which she gave me and I reorder from amazon are:

      Dynarex Obstetrical Towelettes Cleaner and deodorant

      NDC# 67777-244-01

      with a small amount of BZC and alcohol and other stuff.

      Also they are made in China and since changing production to there from here there have been some quality control issues.

      Thanks Jim.

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    • Posted

      Yes, unlike the Dyranex BZK wipes, these have a little alcohol, probably not enough to sting. Hopefully enough to kill the bacteria on its own and overcome any resistance ordinary BZK wipes may or may not cause. The alcohol would not be necessary with Providone Iodine, but again a little messy. What I did like about the Providone Iodine (esp the three pack) is that they were very moist while the BZK were often dried out. Some of the  Amazon reviews of the ones your nurse recommends mention that they are sometimes dried out. A dried out pad suggests to me that the alcohol may be gone and that there may not be enough BZK to do the job. Anyway, I'll order some for my arsenal. smile  Made in China, with some quality control issues? Go figure.

      Jim

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    • Posted

      Hi Jim - I never had a dryness problem with these wipes but the skin uder the penis head on the bottom and around the opening get red a lot. I use cornstarch powder after CICing to dry it out and that helps.

      Jwrhn mentioned below about just toughing it out when the infection starts. I wanted to ask you about that. The pain just gets so intense and the frequency gets to be very minute with a few drops of pinkish pee that I cannot imagine toughing it out. On this last one I tried holding an ice pack to my scrotum but it didn't help. Still, loading up with antibiotics for 5 days whenever this happens is not attractive as well. What has been your experience - do you try to tough it out as jwrhn does or does that risk the infection moving up into the kidneys if not treated asap?

      Seems like being between a rock and hard place but not the kind of my youth!

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    • Posted

      I generally wait a bit and up my fluids, etc, if the symptons are borderline like a very little pain, urgency, etc. Then I pretty much always wait for a culture to come back to see what I have. Sometimes by then it's better.

      What you describe sounds like a full blown UTI, however, Unless, it's a bad case of non-bacterial prostatitis masquerading as a UTI. A culture should tell you that, but it's a judgment call whether waiting is productive.

      That said, always best to get a culture if you can wait rather than just down some antibiotics. But if you can't, you can't. I still think 5 days is too short a course. Assuming it is bacterial, you should at least have a follow up cuture to make sure its out of your system. 

      I don't really know how long is too long a wait in terms of kidney damage, although my very non professional guess is that a few days waiting for a culture won't make any difference. On the other hand, if you're in a lot of pain maybe you shouldn't. What does your urologist say, not that they always have the right answer smile

      Jim

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    • Posted

      Hi Neil,

      I've been tangled up with other things, and haven't been on this site in weeks, so I'm coming in late about CIC and UTIs.

      I've been cathing for 2 1/2 years (with a few months' break, when I had a Urolift that worked, and then didn't.), with a few UTIs each year.  Most of them happen when I am distracted and forget to prep, and usually during one of those (infrequent) "wee hour" (sorry) visits to the loo.  One happened famously in France while we were on honeymoon.  I was, um distracted... Had to quickly learn a few terms en français that most tourists don't have to know...

      I have mostly used Cipro, although twice have had the super-UTIs that needed the "nuclear option" response.

      My last UTI, not confirmed, occured last November, when I was 200 miles from home, and fully engaged in creating a family event.  Again, I was distracted.   And I forgot to prep, just dive-bombed in, yes, a public rest room.  I felt in just 15 or 30 minutes, my body reacting. But instead of going to a doc-in-the-box, I chose a different route, as I was concerned about overdoing the Cipro (Previous UTI, also distraction-created, was in October '16).

      So I downed a bunch of Kombucha, bought a bag of limes, bought some apple cider vinegar, made a lot of juices and dranks liters of fluids.  The UTI never developed.  I cannot recommend this approach per se, only report, that with this Pilgrim, in this situation, it appears that a likely (and well deserved!  :-)  wink UTI never developed.  Nothing suggests that I've been colonized.  Food for thought...

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    • Posted

      Hi cartoonman,

      Thanks for your response. That is interesting - so you made your bladder really acidic real fast so any new bacteria could not take hold. I bet you had heartburn that night when you lay down.

      What form was the Kombucha that you downed? Do you make it yourself? And what was the "nuclear option" - probably not changing the Senate rules!

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    • Posted

      Hi Neil,

      No heartburn, thankfully!  Strong, vegetarian stomach (40+ years' worth!)!  

      I just grabbed a bottle of kombucha from the supermarket shelf, mildly sweetened.  My daughter makes her own, and a friend just gave me a "mother" (starter), so after taxes are finished, I will start my own.

      I've used Cipro on most of the UTIs.  The "nuclear option" is the big block-buster antibiotic whose name I've forgotten, but I'm sure JimJames knows!  I don't like to take it any more often than necessary.  Any more than I like partisan Senate rules-changing...  :-/

       

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    • Posted

      When you said "nuclear option" my first thought was IV antibiotics. Other than those, I would think CIPRO is more of a nuclear option then most, since it's so broad spectrumed and therefore non selective. I've tried when possible to stay away from CIPRO and other Fluoroquinolone antibiotics because of reported tendon related side effects. Lately, I have take Macrobid (nitrofurantoin) when warranted but I think something my dentist gave me for some oral surgery may have worked better as it seemed to clear up my colonization 100%. Or, maybe I just cleared it myself since I don't have to CIC these days.

      Jim

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    • Posted

      Hi Jim - do you recall what your dentist gave you? My last round of Cipro really caused me a lot of tendon discomfort. I did not have that problem with my last round of Cipro. I am back to (ab) normal now.

      On another topic, my urinanalysis has been sowing a steadily decreasing specific gravity and low creatinine levels (which probably go together). Also the color is almost clear (straw).

      But I have always noticed that my cath pee is very dark. That is, my NV pee just before CIC is almost clear but the CV pee right afterwards is a dark yellow. This makes sense of course.

      So I asked my PCP if we could do a urinanalysis of both my NV pee AND the CV pee I take out right afterwards. She though that would be interesting so I will take in two bottles next Monday. Also I will recorde the relative volumes of each void so they can be properly weighted in the analysis.

      I CIC about every 6 hours. Between those times I do maybe 2 to 3 NVs of about 150ml each. So i would guess that the residual pee that accumulates in the bladder during this 6 hours gets progressively concentrated in the solutes.

      For this test I will not do any NVs between the CVs so both samples will be representative of the actual kidney release during that time. I will have to shorten the CIC interval from 6 to 4 hours.

      Have you ever looked at the different compositions of the NV and CV samples?

      Neil

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    • Posted

      He gave me Amoxicllin 875mg.  Took 2 tablets one hour before dental procedure and then 1 tablet 2x/day for several days after. Keep in mind two things. First, not sure this really cleared up my colonization, but it might have. Second, you really should only take antibiotics for UTIs based on a culture and sensitivity test which will tell you which antibiotic is best for which UTI. They hand out Cipro a lot because it's so broad spectrumed but even Cipro won't work for anything. Lately, I've taken Macrobid (Nitrofueron) because it's not a Fluoroquinolone. 

      Catherized urine will give more accurate data than NV urine because less likely to be contaminated. Other than that, not sure what the testing will accomplish. It's possible the cath urine is darker because it's coming from the bottom of the bladder, so maybe the SG will differ. If you want to explore more on your own, get Siemens 10G dip sticks and test your urine. I think you will get similar results from both cath and NV but let us know. 

      Jim

       

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    • Posted

      My PCP is getting concerned my SG is way too low. So I suggested the heavier stuff (waste products and creatinine) are collecting at the bottom over the time beyond voids and not mixing in with the rest of pee which would occur during a normal pee test from someone with no PVR.

      She has seen these low SGs with other men who self cath so if that is the answer to these low SGs (which otherise would be indicating kidney problems along with the low craetinine levels) then it means not to worry for self-cathing men and just collect 2 samples from them: one NV and one CV. So that is the point of this test.

      Neil

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    • Posted

      How much fluid are you taking in a day? If too much that could account for low SG. I also assume the other bloodwork is negative for diabetes? That's Interesting about SG in cathed vs uncathed urine. I'd test it myself but I'm not self cathing much these days. Can't hurt to test it both ways but you can do it a home as well with the dip sticks I suggested. Maybe mix them up to get a diagnostic value?  Because if what you say is true, then neither cath nor non cathed urine would be accurate. The other thing you might want to do -- again a home test would help -- is to test the SG of your natural void ASAP after you cath. That way the solulates wouldn't have as much time to drop to the bottom of your bladder as if you tested a NV right before you cathed.

      Jim

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    • Posted

      Well, JimJames, I have thought (erroneously?) that Cipro was the "go-to," every-day, "conventional warfare  answer, and that some other pill, whose name I've forgotten, was the block-buster response (hence, my over-blown "nuclear option" reference) when the weekend (several day) culture showed the UTI to be Cipro-resistant.  I could be wrong, that's just how I remember things!  :-)

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    • Posted

      Hi Jim,

      What kind of resolution does the Seimens test kit have - my SG is down to 1.002. There is a digital one available with 0.001 resolution but it is pricey.

      To get my true SG that is representative of what my kidneys are clearing I wanted to weight the lab values for my NV SG and CV SG with the volumes of each that I measured at the time.

      So for example if my NV is 200ml and the SG is 1.002 while the CV right afterwards is 400ml and its SG is 1.02, then the weighted average would be 1.014 which is ok. It would be the same as if I just collected both the NV and CV and mixed them together and then measured the SG.

      My PCP thinks this could explain why many of her elderly patients who self-cath have low SGs since they only collect their NVs. She says the usual diagnosis is some kind of renal problem since the creatinine levels are also low. But a full lab anlaysis will also provide both sample protein levels and specifically creatinine which can also be weighted as above like the SG.

      She had been talking about sending me to a kidney specialist over these  values but I think it is just a sampling problem. I have cut down on my daily fluid intake to 1800ml. But even so, while high fluid intakes could explain a low SG, that cannot explain a low creatinine absolute level. I think it is because the particles settle where they are not naturally voided and so collect.

      Anyway we will see - always something new to worry about whenever I visit the doctor!

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    • Posted

      It's the same kit a lot of urolgists use. Shop around as the price can vary, just make sure you ask about the expiration date in advance.  

      Got me on a weighted average, I was just thinking you do a NV into a cup, then cath into a cup, then mix the two up, then put in the dipstick. 

      Did you say a PCP is involved? A urologist would know better as well as what tests to run re your kidneys. When was the last time they did a kidney ultrasound? I'd do the uro before a kidney specialist.

      Jim

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    • Posted

      Hi Jim,

      I will send in the 2 separate samples for complete urinanalysis which includes electrolytes, protein, creatinine, SG and a few other things. Both samples will be taken at the same time ( NV; CV) so it will be interesting to compare them. It is just a one-time thing.

      I had a kidney ultrasound a month ago and it showed that the hydronephrosis that showed up last year was gone. Also there was no mention of bladder trabeculation which was also seen last year.

      So I owe it all to you and CIC!!

      I sure hope continuing CIC will lead to further improvements. I got the most awful email today from a urologist in New York familiar with my case. He said directly that with my sized prostate and my PVRs I need to have my prostate removed immeditaely or risk kidney failure! He said I was wasting my time with CIC! 

      It ruined my day so I read your story again and again to give me hope.

      Take care

      Neil

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    • Posted

      I would be surprised if you find significant differences other than contamination related markers and perhap SG as was discussed earlier, but definitely let us know what you find out. 

      Great that your bladder trabeculation has resolved! Not sure if mine is better or not as I haven't had a bladder ultrasound in years other than my home scanner which in theory might tell me. Guess I will have to do a quick online radiology course!

      Your NYC urologist sounds like an idiot if he is actually saying CIC will not prevent kidney damage. Giving him the benefit of the doubt, maybe he's just expressing his dislike of CIC over surgery, which unfortunately is a knee jerk response of some urologists.

      Fact is that CIC will protect your kidneys as well, if not better, than any surgery since it empties your bladder 100% every time you cath. Few surgeries achieve that and most docs are more than happy with post surgical PVRs of 100ml or less. 

      My last uro agreed with what I said, just didn't understand why I would want to self cath when he could do a TURP and "pee like a horse". Now if he promised I still could ejaculate like a horse smile

      Jim

       

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