Bladder infection battle continues.

[dewie27]

I was doing so good these last few years with using Microcyen AH and drinking aloe juice once a week. I was maybe having a infection a year for 3 years. December I got hit with one and haven’t been able to get past it. I’m on infection 5 since January. I read the study about people using gentamicin and saline for bladder flushes. My Uro wanted to try it too. So I was doing mircocyn 30ml for 25min at night and we used Tobermycin instead of gent and saline in the morning. 20ml of saline and 3ml of tober and it helped a tiny bit bit over the last 3 months I have been on it I‘ve had 1 infection treated with oral antibiotics and I can feel another one is brewing and I’m on the doorstep of being symptomatic again.

Im so beyond frustrated and scared out of mind about being full blown resistant to all antibiotics. I don’t know what to do, I‘ve called my Uro and will have to wait months just to see Him. I’d love to hear any new tips or tricks if there are any. I’m just lost. Thanks

[gjnl]

I was doing so good these last few years with using Microcyen AH and drinking aloe juice once a week. I was maybe having a infection a year for 3 years. December I got hit with one and haven’t been able to get past it. I’m on infection 5 since January. I read the study about people using gentamicin and saline for bladder flushes. My Uro wanted to try it too. So I was doing mircocyn 30ml for 25min at night and we used Tobermycin instead of gent and saline in the morning. 20ml of saline and 3ml of tober and it helped a tiny bit bit over the last 3 months I have been on it I‘ve had 1 infection treated with oral antibiotics and I can feel another one is brewing and I’m on the doorstep of being symptomatic again.

Im so beyond frustrated and scared out of mind about being full blown resistant to all antibiotics. I don’t know what to do, I‘ve called my Uro and will have to wait months just to see Him. I’d love to hear any new tips or tricks if there are any. I’m just lost. Thanks

Try getting an appointment with an infectious disease doctor. Most urologists either don't want to spend the time or don't have the knowledge to manage antibiotics for frequent and recurring urinary tract infections.. Infectious disease doctors are expert in this practice.

There is a recent discussion you may want to read at http://sci.rutgers.edu/forum/showthr...uti-prevention

[dewie27]

Thanks GJNL
yeah that’s a good idea to book an appointment with a specialist. I briefly seen a infectious diseases DR when I was in the hospital in February but no follow up


yes the link you attached was that study I was referring to. But my URO wanted me to use Tobermycin not Gentamicin. It has briefly extended the time before I get symptomatic but I still get sick. For some reason all the things that worked for me for years no longer works. Not microcyn not aloe and tried this gentamicin flush that works for everyone else but not me. This is why I feel frustrated and hopeless at the same time. I’m desperate and would try anything at this point. Any other help is appreciated. And thanks again GJNL.

[hlh]

What kind of infections have you been having? Were they the same bug(s) and/or were they becoming more resistant?

Did your Urologist do a full work up for causes of recurrent UTIs? For example,urodynamics to check bladder pressures? Cystoscopy? Renal ultrasound? Any possibly of prostatitis, and if so, did they try an extended course of antibiotics for 4-6 wks? Have you reviewed your cathing technique, in case there is anything else that can be optimized?

Were you completely UTI free, with a negative culture, before starting the Tobramycin flushes?

Do you know why your doctor isn't using Gentamicin? How did the doctor decide how much Tobramycin to use? Has he/she used Tobramycin before for this, using your dose and frequency of instillations? If you aren't following the protocol used in the published paper, who knows... maybe that's why it isn't working.

What kind of UTI did you develop while doing the Tobramycin instillations? Was it resistant to Tobramycin?

My Dad's urologist started him on the dose of Gentamicin that was used in published paper, and she started him on twice a day. She said she often does that, and if things go well, she decreases to once a day. She has been directing patients to use Gentamicin instillations for years, with good success. She is a very good neuro-urologist.

Maybe you should be dumping the microcyn and try Gentamicin instillations twice a day until you UTI free for at least 6-12 months.

We were not able to find an infectious disease doctor that was helpful. They tend to not be familiar with treating recurrent UTIs in SCI cases. They can recommend antibiotics, but not techniques/work-ups etc...

[ChesBay]

I don't have any advice that hasn't already been mentioned. I do recall a period where about 25 years post injury the UTI's started hitting me in a relentless way and I was starting to feel pretty helpless with the whole thing, almost resigned to where it felt, " I guess this is what is going to take me out...". Lousy feeling after a couple decades of a pretty good quality of life, work, raising a kid, physically active, etc.

My urologist talked me into installation and it has been a major game changer for me almost 15 years. I do it the last thing at night and leave irrigant in all night. Seems many people use different methods but this is what I found works for me. I use 50 to 60 cc's of generic Neosporin irrigant (Neomycin and Polymyxin B) , Gentamicin has also been excellent.

Bob Vogel describes methods and procedure in this older "New Mobility " article. It's pretty close to method that has worked for me, now I can deal with other issues of aging with SCI. (the gift that keeps giving) .

Wishing you luck and don't give up, keep looking for solutions. Years ago when I was in a situation that seemed similar to what you are describing I did not think I would be sitting here writing a post about getting recurrent UTI's under control.
Wishing you the best.

2011 New Mobility article on instillation method and info:
http://www.newmobility.com/2011/04/neosporin-gu/

2015 New Mobility , Bob Vogel on instillation:
http://www.newmobility.com/2015/12/b...ant-solutions/

[SCI-Nurse]

Agree with posts above
recommend cystoscopy and complete review of your medical history by urologists
and yes infectious disease-your treatment although it is a flush could still be causing drug resistance
keep us posted on your progress
pbr

[fuentejps]

got to be some underlying cause. i was nailed with constant uti's for 2 years. my uro kept trying different things. for me i had hydronephrosis from my kidney not draining. turns out the ureter from kidney to bladder wasnt letting urine drain from kidney completely. took a stint for 3 mths to fix the problem. that was 11 mths ago. i have had 3 follow up ultrasound since, all normal now. i instill gent 2 times per day. at night i instill 50ml of hydrocleanse with gent in it then morning 50ml gent in saline.
i would insist on gent, the studies all use gent not the other.

biggest thing. you have got to be totally uti clear before using the gent instills, its to prevent not treat.

[dewie27]

Thanks guys for all the tip and support. That’s the one thing I love about this forum cause when I feel alone and no one understands there are great people like you guys and gals to help. But I can’t stop thinking about the worst case scenario and what I’m gonna miss in my daughters life.

For the previous 3 years I mainly had pseudomonas but the aloe goo I drank once a week helped a ton. In December I lost my dog and couldn’t eat or drink and got hit with the first one. And normally I take cipro and I’m good. That’s what the routine was for years and my Dr just let me take it with out a urine culture. Yes I know I should have done it cause it didn’t work. So obviously got sick in January and it was ecoli. So they have me 10 days of antipenan. That’s when I seen my Uro and we started the the Tobermycin flushes and Continued my vetercyn and got sick again with ecoli again. The Drs wondered if my instestine connected to my bladder and took CT scan and didn’t see anything abnormal. So this time was 14 days on ertapenam. Still doing my 30ml of Vetercyn and Tobermycin flushes and drinking tons of water and started Dmannouse again and this time got sick with a skin infection inside my bladder. I forget the name of the bug but was like a staff infection?? Took tetracycline for that a month ago and today I can feel I’m on the doorstep of another infection.

I live in Canada and yes our health care is “free” and taxes heavily for it but it take for ever to see a Dr let alone a specialist. Last time I seen him he wanted to me try these Tober flushes for three months and get back to him. He didn’t was to do a scope cause my bladder was so infected he didn’t want to risk it.

I habe a indeelling foley cath. I have tried in and out Caths and my spincter muscle was so tight I couldn’t pass a cath. Then tried a super pubic and that made my infections worse so back with this dumb foley.

If it wasn’t for the peeing and pooping being in a chair would be a hell of a lot easier. I called my Uro for a update and see what he thinks, and called my family Dr to go see her and get referred to a infectious disease specialist. Both will take months I’m sure.

[gjnl]

How often are you changing your catheter? When you change the catheter are you using a sterile catheter insertion kit and maintaining a sterile field?

How often are you changing your leg bag?

Do you switch to a night drain bag? If so, how do you clean the night drain bag? How often do your get a new one?

What is your procedure for cleaning the leg bag?

Any chance the catheter tubing is getting contaminated during a bowel program? Do you wipe down the catheter with either microcyn or alcohol or soap and water in the AM and in the PM and after bowel programs?


I have had just the opposite experience, i.e., supra pubic catheter vs indwelling urethral foley catheter. When I used the urethral foley I had many more urinary tract infections than I have now with the supra pubic catheter?

If you are not getting urinalysis (UA) and culture & sensitivity (C&S) tests when you have symptoms, and just start an antibiotic, yes you are setting yourself up for problems.

If you are not getting urinalysis (UA) and culture & sensitivity (C&S) tests after a course of antibiotics to see if the infection is totally clear us, you are setting yourself up for problems.

If there are any bacteria left behind after a course of antibiotics and your doctor doesn't put your on another course of antibiotics, you are going to stay on the frequent and recurring infection path.

[Tetracyclone]

I decided about 4 years into being a quad that the whole antibiotic resistance thing was just too scary. One woman I knew on a forum only lasted 2 years after her injury! I started searching, just as you did and had good luck with Microcyn for 2 years, then started getting infections again. Over the next 6 years I also developed one large kidney stone and now two 1 inch X 1/2 inch pockets of "sand" can be seen in the right kidney, which has suffered hydronephrosis for about 4 years. My urologist waited to treat the large stone until it demonstrably impaired kidney flow and I suspect that was an error. now the kidney has little function and takes about 30 minutes to drain, where the left one takes 7 minutes, so it's a swamp.

Like you, in my case using antibiotics just leaves me with a new infection in a short time. I no longer bother to get a C&S every time, since my urologist wants me to grin and bear it unless I am sick, and he and I disagree on what constitutes "sick."

About 4 years ago I started using an herbal formula from Traditional Chinese Medicine (TCM). It helped a lot for awhile, but then I got an infection it could not handle. This last December I started using a new Acupuncturist in my new location. She looked up the recommended dosage of the formula I had used, Akebia Moist Heat, and found it was TWICE what is recommended on the bottle when dealing with an active infection. As soon as I'd used the new dosage for 5 days I was feeling much better, and continued for 2 weeks before tapering off.

This is no panacea. I'm returning to use it about ever 10-14 days, but it does work and, given the complexity and number of molecules in the med it is unlikely bugs will develop a resistance. Thus says my pharmacist. It is expensive and self-pay. My understanding is that in Canada you do not have access to pre-prepared formulae of TCM. Canada does not allow import. You must go to an Acupuncturist for diagnosis and he/she will call her script in to the local Chinese Pharmacy, who will make it up specifically for you.

The cost of this path will be prohibitive for most Canadian SCIs, but I wanted people to know it does exist as an alternative.

One last point about my efforts to help my kidneys. I noticed, when I did floor exercises after neglecting them for a long time, that I would pass a lot of cloudy urine and sand. So I started back doing floor exercises that put the kidneys in many more positions, have me face down a lot, and I use mild percussion on the kidneys to stimulate. One simply beats gently on the kidneys with one's fist- an old technique from chi gong. Over perhaps 8 months I got a lot of discharge this way. Then twice, in the last 2 weeks, I passed not just mucous but big plugs of mucous about an inch across. Now I am passing just some mild cloudiness post exercise and I wonder if that mucous had been seriously blocking flow in the right kidney. I try to think positive!

Certainly it is both useful, and perhaps self-evident, that moving around a lot is good for stimulating circulation everywhere, not just the kidneys, but I am a lot more motivated than I once was. After I changed house I joined a gym in 2012 and quit bothering with floor exercises. When I changed house in 2016 I didn't even join a gym until 2 months ago, so my exercise had become quite limited for awhile and I think I paid for that. 2018 is my Year of Better Health. We can't know what we need until we learn it.

Best of luck.