UTI getting worse.

[Martiniani77]

5 years post injury T9 and still struggling with UTI.
Last urine-culture analyse showed 300.000 load of Klebsiella pneunoma infection.
Until this day ive been self catheterising with no success because ive almos always had accidents and could keep more than 300ml max in my bladder. *in cases of infection no more than 100

Its 3 months that im forced to use a folley catheter which limits my activity a lot. Im 24yo and hopefully trying to be a father....infections obviously are a big obstacle in my fertility.
Since im not staying more than 2 weeks without an infection and doctors prescribing every times antibiotics i wanted an opinion from you guys.
From doctors i keep hearing that i should treat it with antibiotics and drink a lot of water.
Been using simple antibiotics in the beginning now im on a hospital kind of antibiotic because every other one was resistant.
What cure do you suggest ? Is it a problem that im switching from folley and intermittent catheter program time to time ?
And is there a way to increase my bladder capacity and remove infections from my life ?

[SCI-Nurse]

Have you tried Ellura? You have to start after infection treated with antibiotics?
What meds did you try to increase bladder capacity? or Botox?
What is the pressure? High pressure can contribute to UTI.
Gentamycin/saline instillation- intermittent cath then put amount in twice a day.
Have you taken a longer course for 2-3 weeks? Prostatitis? bladder or kidney stones?
CWO

[Martiniani77]

Have you tried Ellura? You have to start after infection treated with antibiotics?
What meds did you try to increase bladder capacity? or Botox?
What is the pressure? High pressure can contribute to UTI.
Gentamycin/saline instillation- intermittent cath then put amount in twice a day.
Have you taken a longer course for 2-3 weeks? Prostatitis? bladder or kidney stones?
CWO

I had not heard Ellura before. Checked it online and going to try after finishing my cure with Ceftazidima antibiotics.
I have used oxybutinin 5mg when intermittent cathing but recently quit since im using a folley cath.
Urodynamics were done and they told me i have a high bladder pressure but told me it is ok using oxybutinin only. I asked for a botox injection therapy myself and am currently on a waiting list for them to call me. Dont know how long that will take.

I had not heard before about the gentamycyn saline instillation too.....Can you tell me more about this ?
I have no stones in my bladder or kidney....recently did 15 days of niddle antibiotics

[SCI-Nurse]

Oxybutynin 5 mg how often- 10 mg three times a day is max or long acting 30 mg once a day or some prefer to split and take every 12 hours. Some can’t take the side effects and long acting doesn’t have the peaks like short acting. Recent research shows concern for dementia. FDA has not made a black box warning. I tell my patients and they decide- switch to Trospium, May need Mirgabetron with it or there is Botox. The worry about pressures are the chance of backing up in to the kidney and over a period of time can cause kidneys damage. Think of it like your blood pressure- (bladder pressure) - want it within a certain range - a little high ok but it too high. It rarely happens now because urodynamics is the test to check your pressure before any issues. And it is the first to be picked up. After I change a bed, have person comeback in 3 months for UDS to check pressure and see if within the range. Always start at low dose and go up if needed. So Oxybutynin 5 May be good for you. Most renal failure in SCI is from uncontrolled Diabetes, hypertension- just like the rest of the population. CWO

[Martiniani77]

Ive been on oxybutinin 5mg three times a day unsuccesfuly. Maybe i need the max dose ?
I think i might have a high pressure since my bladder becomes strong and contracted when i have more than 250ml in my bladder. I start feeling dizy , hot and cold and thats the moment when my bladder leaks.
Going to talk with my medic all the topics mentioned above but urodynamics seems to be a must havent done one check in two years.

Some time ago I passed a sepsis. A high infection which had gone into my blood and it was life threatening. After being dismissed from the hospital the doctors amond other meds suggested to divide by half my oxybutinin dose because they thought it had some side effect in my bowel program.
They told me it might be an incomplete bowel movement that caused all these infections because the bladder wall is near the bowel and the bacteres can pass.
Myself I think it is the overuse of catheters because my bladder cant hold urine.
If i fix my bladder to be calm i could use less catheters therefore less bridges for bacteres to pass

[crispy1981]

Ive been on oxybutinin 5mg three times a day unsuccesfuly. Maybe i need the max dose ?
I think i might have a high pressure since my bladder becomes strong and contracted when i have more than 250ml in my bladder. I start feeling dizy , hot and cold and thats the moment when my bladder leaks.
Going to talk with my medic all the topics mentioned above but urodynamics seems to be a must havent done one check in two years.

Some time ago I passed a sepsis. A high infection which had gone into my blood and it was life threatening. After being dismissed from the hospital the doctors amond other meds suggested to divide by half my oxybutinin dose because they thought it had some side effect in my bowel program.
They told me it might be an incomplete bowel movement that caused all these infections because the bladder wall is near the bowel and the bacteres can pass.
Myself I think it is the overuse of catheters because my bladder cant hold urine.
If i fix my bladder to be calm i could use less catheters therefore less bridges for bacteres to pass

How did you make out with all this? Better now i hope?

[Martiniani77]

How did you make out with all this? Better now i hope?

Still the same,
Probably worse. Im on a fixed catheter with a drainage bag. Been off the oxybutinin for a while and off the antibiotics last cure was 15 days.

Now im trying to take off the catheter and go back to intermittent every 3-4 hours
Do you know any medicine that can help to prevent infections ? Currently im not taking anything else except drinking water.

[Patrick Madsen]

Methenamine is one Rx prescribed for me. My urologist also has me increase Vit.C. when I feel one coming on. I normally take one or two in the morn. and one at night. Works okay. The goal is to keep the environment in the bladder etc. acidic to kill the bacteria.

[crispy1981]

Still the same,
Probably worse. Im on a fixed catheter with a drainage bag. Been off the oxybutinin for a while and off the antibiotics last cure was 15 days.

Now im trying to take off the catheter and go back to intermittent every 3-4 hours
Do you know any medicine that can help to prevent infections ? Currently im not taking anything else except drinking water.

Of the 5 years you've been managing your bladder have you always been getting UTis or were things working well for a while? Have you had a follow up culture to make sure the last round of Anti Biotics worked?

[Martiniani77]

Of the 5 years you've been managing your bladder have you always been getting UTis or were things working well for a while? Have you had a follow up culture to make sure the last round of Anti Biotics worked?

I remember in the beginning just out of the hospital i could hold a lot 1 lt around...later infections came on most ecoli but also other names like klebsiella etc.
And i could hold less and less over time. All the time used oxybutinin 5mg 3 times a day for the spasms but without success.

[Martiniani77]

Methenamine is one Rx prescribed for me. My urologist also has me increase Vit.C. when I feel one coming on. I normally take one or two in the morn. and one at night. Works okay. The goal is to keep the environment in the bladder etc. acidic to kill the bacteria.

Vitamin C what dosage ? I might start using it

Methenamine is an antibiotic ? I read that it does not fight a current infection but is used to prevent the growth of bacteria in bladder

[crispy1981]

I remember in the beginning just out of the hospital i could hold a lot 1 lt around...later infections came on most ecoli but also other names like klebsiella etc.
And i could hold less and less over time. All the time used oxybutinin 5mg 3 times a day for the spasms but without success.

I wonder if you are just on a never ending roller coaster of Anti Biotics? I would start by taking in a post AB therapy culture to see if you are clean then try to stay that way with some of the preventions like Vit C, Gentamicin but most of all a good throughput of fluids (harder to do when doing IC).

[Patrick Madsen]

Vitamin C what dosage ? I might start using it

Methenamine is an antibiotic ? I read that it does not fight a current infection but is used to prevent the growth of bacteria in bladder

I think my Vit C. is 1000mg. Depending on how the urine looks in the morning; I'll take one or two. If murky may take another with more water in the afternoon and evening. A friend started using 500mg, a couple months ago with it being good so far. He's barley over a year
post injury. I'm close to 47 years post injury so am pretty sure I'm colonized by now.

I start out by increasing the Vit. C and H/20.I use a 4 cup measuring cup as a drinking cup, I know how much water intake I do daily. Voiding, I use a larger plastic picture with measuring lines to know how much I'm voiding and get a look at the color etc. at the same time.

Methenamine creates a formaldehyde environment in the bladder. I'm not sure how well it works. If I go on Cephlex, I discontinue the vit.C and methenamine the ten days I take it.

[Martiniani77]

Thank you just started the vitamin C ill see how it goes.

[crispy1981]

I remember in the beginning just out of the hospital i could hold a lot 1 lt around...later infections came on most ecoli but also other names like klebsiella etc.
And i could hold less and less over time. All the time used oxybutinin 5mg 3 times a day for the spasms but without success.

The reason i ask about if your post AB therapy showed 'no growth' (no UTi) is because a UTi can create the illusion of lower retention/cause more frequent urination. So obviously knowing that you are not infected is the starting point to getting you back to normal.

[Martiniani77]

I wonder if you are just on a never ending roller coaster of Anti Biotics? I would start by taking in a post AB therapy culture to see if you are clean then try to stay that way with some of the preventions like Vit C, Gentamicin but most of all a good throughput of fluids (harder to do when doing IC).

Thats what ive been doing mostly antibiotics 1 month free repeat culture analyse...
Now its time to do a therapy culture to check.
Its hard to drink a lot of fluids when doing intermittent catheter it can fill pretty fast and in my case i get all hot and dizzy with a high heartbeat.
Thats how i understand its time to go to the bathroom which usually leaves me no time.

A few months ago i was on a nitrofurantine cure. Practically this medicine disinfected the bladder, was an antiseptic not an antibiotic.
While being on this cure i was mostly alright but it was stoped by my doctor after surviving a sepsis.
He said it lowered the imunity and made the antibiotics more resistant.

Vit C is a must also Gentamicin, going to check as soon as possible with my doctor.
Thanks for the useful information.