UTI rant

dewie27 · 08-28-2010, 12:00 AM

I'm so frustrated with bladder infections, I got home Nov 9th 2009 from a T3 injury. I was doing intermitent caths till Jan. During that time I had 2 or 3 infections, I ran into some problems cathing and was forced to have a foley or indwelling cath since then. I am booked to have botox done this monday so hopfully I can go back to intermitent and cut down on UTI's. A indwelling cath is like having a constant infection for me, I was having back to back infections untill Cypro wouldn't work, then I was put on a daily antibiotic Macrobid. Then today when I woke up I seen my bed bag was full of blood. So Macrobid is no good, now its Norfloxcin. When I get off this I should be back to intermitants cath. I'm stopping the daily anti biotic chain after this works it's term

Its so frustrating to hear all the people who have no issues over 15 years and I can't go 15 minutes. Its like banging your head on a ridged brick wall. I'm afraid of all the consquences for a badly effected bladder and kidneys, and the horrible idea of living on antibiotics and becoming imune scare the poop out me.

Just had to vent, and I'll keep hoping something works for me in the Avoiding UTI's sticky here.. keep on rolling

tooley · 08-28-2010, 12:24 AM

geez.. what are you using for cath lube? tabasco sauce?

ask the doc what type of bacteria is causing the uti's.. if it's E.coli then find some D-Mannose. E.coli is one of the most common bacterias that cause uti's. This stuff works awesome. I don't always do the cleanest caths - anytime I start seeing any sediment in my urine I'll do about 2 days worth and things clear right up. I use the powder that you mix with water. 1-2 grams in water every 3-4 hours not with food. Tablets also available. You can find it at the health food store. The product name here in Canada is "UTI-Cleanse" - www.aor.ca

don't bother with cranberry extract, etc. Blueberries contain the same thing, so fresh ones can't hurt and are far more effective than pill-form.

bob clark · 08-28-2010, 01:52 AM

Quote:

Originally Posted by dewie27

I'm so frustrated with bladder infections, I got home Nov 9th 2009 from a T3 injury. I was doing intermitent caths till Jan. During that time I had 2 or 3 infections, I ran into some problems cathing and was forced to have a foley or indwelling cath since then. I am booked to have botox done this monday so hopfully I can go back to intermitent and cut down on UTI's. A indwelling cath is like having a constant infection for me, I was having back to back infections untill Cypro wouldn't work, then I was put on a daily antibiotic Macrobid. Then today when I woke up I seen my bed bag was full of blood. So Macrobid is no good, now its Norfloxcin. When I get off this I should be back to intermitants cath. I'm stopping the daily anti biotic chain after this works it's term

Its so frustrating to hear all the people who have no issues over 15 years and I can't go 15 minutes. Its like banging your head on a ridged brick wall. I'm afraid of all the consquences for a badly effected bladder and kidneys, and the horrible idea of living on antibiotics and becoming imune scare the poop out me.

Just had to vent, and I'll keep hoping something works for me in the Avoiding UTI's sticky here.. keep on rolling

Hi Dewie,

Read this thread thoroughly:

http://sci.rutgers.edu/forum/showthread.php?t=133414

To simplify things, first try to get yourself UTI-free with antibiotics so you can start with a clean slate. When you get back to intermittent cathing just give your glans (head of your penis) a couple squirts of Microcyn or Vetericyn or whatever it's being called now. Then squeeze open your meatus (hole in your penis) and put 2 or 3 squirts in there. Try to get it in there an inch or 2 and let it set for 30 seconds to a minute. Then give your catheter a squirt and maybe even a squirt inside the catheter and catheterize as usual. That should work for ya. I don't use lube but you can if you want or need to.

Microcyn etc is pretty expensive so you may find a way to use it more frugally as you go along.

Of course wash your hands thoroughly before cathing.

I do it this way but I use 3% hydrogen peroxide instead of Microcyn. I wouldn't recommend HP for others because it may be too caustic for mucous membranes. I've been uncolonized and UTI-free for 5 years. My urine is and has been perfect all this time. I don't even think about UTIs anymore until I come here to the CC Cure forum. I feel so bad for you people. UTIs aren't a given just because we need to catheterize... I assure you.

Bob.

SCI-Nurse · 08-28-2010, 10:50 AM

Hi,

I agree that UTI's are one of the biggest sources of problems with SCI and folks have many questions and solutions- as evidence by the number of comments and questions on this site! I'm glad you are venting-its helpful.

You seem to be taking the right approach. Increasing your knowledge through reading and discussing and getting as much info as you can, to help you arrive at the best process for you-keeping in mind that someone elses approach is often worth a try but may not work for you.

I agree that having a foley catheter should be avoided whenever possible if urodynamics shoow that you are emptying fully. Keep asking questions as information is constantly changing.

AAD

quad79 · 08-30-2010, 01:45 PM

Ask your uro for Uroqid(Methenamine Mandelate)& take add Vit. C with it.

I've been in your boat, scared & sick forever! This drug has been a godsend & I feel better than ever, truthfully. Many here rave about it. This is a urinary antiseptic unlike an abx destoying your resistance.

It's very possible you may need to get that catheter out too like I mernioned to you b4.

Good luck!

dewie27 · 08-30-2010, 10:09 PM

your right SCI nurse it is good to vent. I was just going to go to a naturopath but I'm going to a health store tomorrow and pick this stuff up.

I had to botox done today, and bladder wall was still red from the infection so he only could botox in a few places so I hope its enough.

I've had more things suggested to me here than I've heard from all me Doc's in 10 months since I've been home

EllDee · 08-30-2010, 11:22 PM

Queston. Is the Constant feeling that you need to go a sign of uti? I can usually feel when i have to go and hold it until it was time to ic. For the last six or so months I would have a constant feeling off and on. When I have had that constant feeling, a uti followed within a few days. Main symptoms were cloudy, smelly urine. Well, for the last five days, I have had this same feeling but the difference is no cloudy urine. a couple times when I felt I had to go, i really did and I couldn't even hold it long enough to get the cath in. Needless to say, I had to change clothes those days. So now, when I get that feeling, I don't know if i really have to go or if it's just the feeling. This is causing me to cath way to often and most of the time I didn't need to go. It's driving me crazy because I can't hardly get a good nights sleep because I feel it and think I'm going to wet the bed. If it makes any difference, it's more noticeable/uncomfortable when I lay on my stomach (which is the way I usually and like to sleep). Any opinions?

highmigh · 08-31-2010, 05:11 AM

Okay first of all, I am looking for a professional...or knowledgeable opinion...no guesses please, no opinions based on hypothetical. Those type of answers can kill............

Millard · 08-31-2010, 08:17 AM

Quote:

Originally Posted by highmigh

Okay first of all, I am looking for a professional...or knowledgeable opinion...no guesses please, no opinions based on hypothetical. Those type of answers can kill............

Most of us here are not doctors. I would recommend visiting a urologist.

SCI-Nurse · 09-01-2010, 01:43 PM

The constant feeling that you need to go can be a symptom of a neurogenic bladder or can be a sign of UTI if it isn't one of your usual symptoms. It is the overactive bladder.
So if it isn't normal fo ryou or it is worse than usual- yes it can be a symptom of a UTI, increased bladder spasms also.
CWO

08-28-2010, 12:00 AM	#1
dewie27 Senior Member Join Date: Feb 2010 Location: North of the 49 Posts: 256	UTI rant I'm so frustrated with bladder infections, I got home Nov 9th 2009 from a T3 injury. I was doing intermitent caths till Jan. During that time I had 2 or 3 infections, I ran into some problems cathing and was forced to have a foley or indwelling cath since then. I am booked to have botox done this monday so hopfully I can go back to intermitent and cut down on UTI's. A indwelling cath is like having a constant infection for me, I was having back to back infections untill Cypro wouldn't work, then I was put on a daily antibiotic Macrobid. Then today when I woke up I seen my bed bag was full of blood. So Macrobid is no good, now its Norfloxcin. When I get off this I should be back to intermitants cath. I'm stopping the daily anti biotic chain after this works it's term Its so frustrating to hear all the people who have no issues over 15 years and I can't go 15 minutes. Its like banging your head on a ridged brick wall. I'm afraid of all the consquences for a badly effected bladder and kidneys, and the horrible idea of living on antibiotics and becoming imune scare the poop out me. Just had to vent, and I'll keep hoping something works for me in the Avoiding UTI's sticky here.. keep on rolling

08-30-2010, 01:45 PM	#5
quad79 Senior Member Join Date: Jul 2007 Posts: 3,843	Ask your uro for Uroqid(Methenamine Mandelate)& take add Vit. C with it. I've been in your boat, scared & sick forever! This drug has been a godsend & I feel better than ever, truthfully. Many here rave about it. This is a urinary antiseptic unlike an abx destoying your resistance. It's very possible you may need to get that catheter out too like I mernioned to you b4. Good luck! __________________ ______________________________________ Proud owner of an AR15

08-31-2010, 05:11 AM	#8
highmigh Banned Join Date: Aug 2010 Posts: 1	Okay first of all, I am looking for a professional...or knowledgeable opinion...no guesses please, no opinions based on hypothetical. Those type of answers can kill............ __________________ BactiumTHEY ARE SAYING THAT WELCOME...........

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08-28-2010, 12:24 AM	#2
tooley Senior Member Join Date: Feb 2010 Location: Alberta, Canada Posts: 1,332	geez.. what are you using for cath lube? tabasco sauce? ask the doc what type of bacteria is causing the uti's.. if it's E.coli then find some D-Mannose. E.coli is one of the most common bacterias that cause uti's. This stuff works awesome. I don't always do the cleanest caths - anytime I start seeing any sediment in my urine I'll do about 2 days worth and things clear right up. I use the powder that you mix with water. 1-2 grams in water every 3-4 hours not with food. Tablets also available. You can find it at the health food store. The product name here in Canada is "UTI-Cleanse" - www.aor.ca don't bother with cranberry extract, etc. Blueberries contain the same thing, so fresh ones can't hurt and are far more effective than pill-form.

08-28-2010, 10:50 AM	#4
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,318	Hi, I agree that UTI's are one of the biggest sources of problems with SCI and folks have many questions and solutions- as evidence by the number of comments and questions on this site! I'm glad you are venting-its helpful. You seem to be taking the right approach. Increasing your knowledge through reading and discussing and getting as much info as you can, to help you arrive at the best process for you-keeping in mind that someone elses approach is often worth a try but may not work for you. I agree that having a foley catheter should be avoided whenever possible if urodynamics shoow that you are emptying fully. Keep asking questions as information is constantly changing. AAD

08-30-2010, 10:09 PM	#6
dewie27 Senior Member Join Date: Feb 2010 Location: North of the 49 Posts: 256	your right SCI nurse it is good to vent. I was just going to go to a naturopath but I'm going to a health store tomorrow and pick this stuff up. I had to botox done today, and bladder wall was still red from the infection so he only could botox in a few places so I hope its enough. I've had more things suggested to me here than I've heard from all me Doc's in 10 months since I've been home

08-30-2010, 11:22 PM	#7
EllDee Member Join Date: Aug 2010 Posts: 76	Queston. Is the Constant feeling that you need to go a sign of uti? I can usually feel when i have to go and hold it until it was time to ic. For the last six or so months I would have a constant feeling off and on. When I have had that constant feeling, a uti followed within a few days. Main symptoms were cloudy, smelly urine. Well, for the last five days, I have had this same feeling but the difference is no cloudy urine. a couple times when I felt I had to go, i really did and I couldn't even hold it long enough to get the cath in. Needless to say, I had to change clothes those days. So now, when I get that feeling, I don't know if i really have to go or if it's just the feeling. This is causing me to cath way to often and most of the time I didn't need to go. It's driving me crazy because I can't hardly get a good nights sleep because I feel it and think I'm going to wet the bed. If it makes any difference, it's more noticeable/uncomfortable when I lay on my stomach (which is the way I usually and like to sleep). Any opinions?

09-01-2010, 01:43 PM	#10
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,318	The constant feeling that you need to go can be a symptom of a neurogenic bladder or can be a sign of UTI if it isn't one of your usual symptoms. It is the overactive bladder. So if it isn't normal fo ryou or it is worse than usual- yes it can be a symptom of a UTI, increased bladder spasms also. CWO