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**SCI-Nurse** · 2 Jan 2021, 5:17 PM

There are a number of compounds under research and development as new antibiotics, but I am very skepticalskeptical of any that claim to guarantee no bacterial resistance development. This has been claimed by many antibiotics over the years since penicillin...and all of them have had serious problems with resistance, largely due to overuse and inappropriate usage.

The study done with the chemical corbomycim was done in animals only (mice) and only for topical MRSA lesions, not for systemic or urinary tract infections.

Some more information on this one, which is not available commercially yet:

https://blogs.sciencemag.org/pipelin...otic-candidate

https://healthsci.mcmaster.ca/news-e...nsGd-nyh4Hmr6g

https://asknature.org/strategy/corbo...its-cell-wall/

https://research2reality.com/health-...gs-resistance/

(KLD)

**hlh** · 2 Jan 2021, 5:46 PM

Is there one specific bacteria you are having trouble with right now?

What are you taking daily for prophylaxis?

What does your infectious disease doctor say? Urologists should not be managing resistant UTIs. They just don't know enough.

Has the antibiotic fosfomycin worked for you? Are you adding that to the list of antibiotics that are checked when you drop off a urine sample? How are you taking it?

Are you doing microcyn instillations daily? Once or twice? And changing your foley more frequently to see if that helps?

My Dad has a long history of resistant UTIs. He is also now using a foley indwelling. He is keeping them in check by doing microcyn instillations at least once a day and changing the foley when the odor and sediment gets bad and it is clear bacterial load is high. So usually that is every 1-2 weeks. Insurance covers the foleys - no problem. So far all of his UTIs have been susceptible to fosfomycin, even if resistant to most other antibiotics.

He also takes D-mannose/Vitamin C/methenamine/cranberry daily and drinks a lot. He also makes sure his bowels are moving well and takes a probiotic.

**dewie27** · 3 Jan 2021, 6:43 PM

Thanks KLD. I can only understand so much in those articles. I never did well in school and didn't even take biology so that is giberish to me honestly. Wish I could fully wrap my mind around it.

HLH - Thanks, I've had ecoli after ecoli every 2 months basically for 5 years. Its been a tough bug to tame. I always send in samples and get the culture back before starting me on a antibiotic..
Currently against everyone's suggestion here I was using collidal silver. Most people I've talked to use 500ppm bladder rinse once a month. That 500ppm didn't work for me. I bought stronger stuff like 6000ppm 10ml for 25min max like once a week. It was working great honestly, the smell would go away for a week at first. Then after week 6 and 7 the smell doesn't go away. I've read in multiple site bacteria can't be resistant to silver. But then do a different google search and I found multiple articles saying there are 20 different germs that have the ability to become resistant to silver and Ecoli and Psudamonous where on the list!

Before silver I was Adding 2-3x the amount of D Manouse they recommend to my water. I'm drinking 5-6L a day now with the D Mann inside. Taking Utiva crannberry concentrate 1x a day. Was taking a low dose of Akebia Moist Heat and worked great for 6 months now doesn't work at all. And I've been doing Microcyn AH flushes for 8 years or so 1x 30ml in the AM. For the first 4 years it worked great and only sick once a year. Now it doesn't work at all. I've stopped the flushes to see and I get sick every 2 months with or with out it.

When I had Psudomonous infections I used aloe gel and it worked great, but doesn't work with ecoli.
Last year I bought and tried the Urosheild vibrating cath device and was a massive waste of time, money and effort.
I've been to a Natural Path and had no luck.
I never could intermediate cath, so had indwelling cath. I tried a SP tube and that made it worse.
I reluctantly tried the Gentamycin bladder flush after that study came out. And 8 months later I'm resistant to Gentamycin.

I currently have a GP Dr appointment. I'll ask him about the methenamine. What dosage does your dad take? Its a daily antibiotic? 11 years ago my old urologist put me on Macrobid daily and it worked for a month before it stopped. I don't have luck with prophylactic antibiotics

My GP Dr knew my Urologist was thinking of doing the Cystectomy "when our backs are against the wall" so she got me into another urologyst. He reviewed my chart and said to try silver dipped caths and if that doesn't work do the surgery. I told him I'm starting silver flushes and he seemed interested in that but said if I could give you surgery today I would. He said every person whos had it done in my situation said they wished they done it a long time ago. From my understanding the surgery has 1/3 where they never have another infection, 1/3 who gets infections but not like before like once a year, and 1/3 who doesn't make a difference at all. Not great stats but maybe it works great. I don't look forward to peeing out of my stomach but what ever keeps me alive to watch my daughter grow up.The Urologist who I got the 2end opinion said if his daughter needed a cystectomy he would take her to the urologist I'm seeing now. The Uro I have is a great Dr and has good reviews and is on the Alberta Urology board. I liked both Urologists actually and if they both say get the surgery I guess I should get it.

I'm open to try other methods but I don't know how I can shake these Ecoli infections for another 20 or maybe 30 years. I just turned 40 days ago. I mean I didn't want a colostomy but it was the best thing I could have done too

**hlh** · 3 Jan 2021, 11:32 PM

I'm so sorry you have been through such a struggle. My Dad as also had recurrent EColi, but not as frequent right now as yours. He has a couple UTIs clustered every 6 months or so.

Methenamine is 1g twice a day, and as the nurse said you need to have acid urine for it to be most effective. It is not an antibiotic per se, but can kill bacteria. My Dad takes Vitamin C 1g twice a day to help create the acidic conditions that allow the methenamine to be metabolized most effectively. But she is also right that these supplements work best when you don't use a foley, so that they have time to sit in the bladder and are not washed out immediately. My Dad does respond to the Dmannose, which should be most helpful for EColi, but it is not cheap when you are taking it 4 times a day or more.

My Dad has tried the silver foleys too, but they didn't really help much. I keep debating going back to those....

Does the microcyn do anything at all to your urine/bacterial load? If it clears your urine at all, have you tried it twice a day when you feel a UTI brewing?. Twice a day for 5 days is a protocol I read for a microcyn like product sold in Asia for UTI treatment. Maybe you can help keep things in check by just going to twice a day x 5 days every couple months when things get worse.

It was an infectious disease doctor that introduced my Dad to Fosfomycin, which has helped. Are you able to see an infectious disease doctor where you are? You could ask your GP about it. To be honest, ID doctors often are not very interested in these chronic problems, but they can have ideas and are better with antibiotics than urologists. If my Dad started having even more UTIs, the next step ID recommended was fosfomycin prophylaxis - 1 dose a week. But before that, he would probably try microcyn instillations twice a day (he uses about 50cc).

I can see your point though. You are very young, and to be suffering with this for so long is very stressful, and potentially life threatening. And honestly, once you are using a foley, the bladder is kind of a useless organ. I'm glad the colostomy worked out so well for you. Cystectomy would be much easier than that one!

Let us know what you decide. Good luck. Hang in there.

**rollenrye74** · 4 Jan 2021, 3:55 PM

Originally posted by dewie27 View Post

Thanks KLD. I can only understand so much in those articles. I never did well in school and didn't even take biology so that is giberish to me honestly. Wish I could fully wrap my mind around it.

HLH - Thanks, I've had ecoli after ecoli every 2 months basically for 5 years. Its been a tough bug to tame. I always send in samples and get the culture back before starting me on a antibiotic..
Currently against everyone's suggestion here I was using collidal silver. Most people I've talked to use 500ppm bladder rinse once a month. That 500ppm didn't work for me. I bought stronger stuff like 6000ppm 10ml for 25min max like once a week. It was working great honestly, the smell would go away for a week at first. Then after week 6 and 7 the smell doesn't go away. I've read in multiple site bacteria can't be resistant to silver. But then do a different google search and I found multiple articles saying there are 20 different germs that have the ability to become resistant to silver and Ecoli and Psudamonous where on the list!

Before silver I was Adding 2-3x the amount of D Manouse they recommend to my water. I'm drinking 5-6L a day now with the D Mann inside. Taking Utiva crannberry concentrate 1x a day. Was taking a low dose of Akebia Moist Heat and worked great for 6 months now doesn't work at all. And I've been doing Microcyn AH flushes for 8 years or so 1x 30ml in the AM. For the first 4 years it worked great and only sick once a year. Now it doesn't work at all. I've stopped the flushes to see and I get sick every 2 months with or with out it.

When I had Psudomonous infections I used aloe gel and it worked great, but doesn't work with ecoli.
Last year I bought and tried the Urosheild vibrating cath device and was a massive waste of time, money and effort.
I've been to a Natural Path and had no luck.
I never could intermediate cath, so had indwelling cath. I tried a SP tube and that made it worse.
I reluctantly tried the Gentamycin bladder flush after that study came out. And 8 months later I'm resistant to Gentamycin.

I currently have a GP Dr appointment. I'll ask him about the methenamine. What dosage does your dad take? Its a daily antibiotic? 11 years ago my old urologist put me on Macrobid daily and it worked for a month before it stopped. I don't have luck with prophylactic antibiotics

My GP Dr knew my Urologist was thinking of doing the Cystectomy "when our backs are against the wall" so she got me into another urologyst. He reviewed my chart and said to try silver dipped caths and if that doesn't work do the surgery. I told him I'm starting silver flushes and he seemed interested in that but said if I could give you surgery today I would. He said every person whos had it done in my situation said they wished they done it a long time ago. From my understanding the surgery has 1/3 where they never have another infection, 1/3 who gets infections but not like before like once a year, and 1/3 who doesn't make a difference at all. Not great stats but maybe it works great. I don't look forward to peeing out of my stomach but what ever keeps me alive to watch my daughter grow up.The Urologist who I got the 2end opinion said if his daughter needed a cystectomy he would take her to the urologist I'm seeing now. The Uro I have is a great Dr and has good reviews and is on the Alberta Urology board. I liked both Urologists actually and if they both say get the surgery I guess I should get it.

I'm open to try other methods but I don't know how I can shake these Ecoli infections for another 20 or maybe 30 years. I just turned 40 days ago. I mean I didn't want a colostomy but it was the best thing I could have done too

Man, sorry to see this. I'll tell you know, by flushing your bladder that often, you're increasing your chances to introduce bacteria. Plus, studies have been done to see if irrigating the bladder will help. All found they don't.

The key to good bladder health with a foley is to change the tube twice a month and drink lots of water and/teas. You got to keep urine flowing at all times. This keeps the bacteria from having time to grow. At least 88oz per day!

I get up at 9am, drink 32oz by 4pm, another 32oz by 11pm. I get in bed between 11p-12a but sit up watching TV until 1:30-2am. During that time i drink 24oz. This flushes my bladder. My urine will have almost no color.

The Foley doesn't allow urine to totally drain out because the urine has to pool higher than the balloon. When we stay in one position and don't drink enough water, the urine stagnates, allowing time for the bacteria to grow. Bacteria love warm moist areas.

I'll get off that routine at times, especially during the day where I only drink one 32 ounce bottle of water the whole time I'm up in my chair. I like to eat salty food so that just dehydrates me even more. (Once you're thirsty you're already dehydrated.) This is when I typically end up with a bladder infection. I'll get them twice a year. Once I feel the onset of a bladder infection, the bladder spasms, the stinky dark urine, ect, I jump back on my routine and try to resist calling in for an antibiotic. It's only after I start to void through my p**** when I call for an antibiotic.

First thing I do is call my doctor to put in culture order. The next morning, before I get up, I'll put in a new catheter so I have a clean sample. (I also change all my bags and tubing.) Using one that's been in awhile will have all kinds of stuff in it and take longer for the lab to figure out what is the dangerous bacterium. I have lots of those sample cups here so I can get a direct sample before any other outside contaminants can botch the culture. Typically it takes 2 days for them to figure out what I got going on when I use a clean sample . it can take up to I week to figure out if I use a catheter that's been in awhile. My doctor won't call in an antibiotic until they know exactly what they need to treat. I've had the same urologist for the last 15 years so she's pretty used to my routine.

After the culture comes back, I start taking my 7 to 10 day dose of antibiotic. 2 to 3 days before I finish my antibiotic, I'll change my tube again. That way if any bacteria is clinging on the bottom of the balloon, it is removed and I have 2 to 3 days left to kill the remaining that might be lurking around. Antibiotics continue to work several days after you stop taking them.

I use a 32oz Urocare reusable latex bag with a latex extension tube when i'm up in my chair and the traditional large bed bag at night when in bed. Both have anti-reflex valves at the neck of the bags to keep urine from coming out of the bags. However, nothing to keep urine in the tubes from washing back into the bladder. I believe that's where the ecoli and strep is coming from. The bags are cleaned after they are used but the cleanser doesn't really clean the inside of the tubes totally. If left in the bathroom without a cap, when someone takes a dump fecal matter particles will flow through the air and into the tube. A fart is no different then a cough.

I'm working on an anti reflux device that can connect to your tube so you don't have to worry about bacteria filled urine and air from the tubing backwashing into your bladder. This will be something you put on your tube when you change it and stays on there until you put on a new one when you change the tube. It creates a closed system. Hopefully it will be approved by the end of the year for sale.

Well, I hope this helps you. This has really helped me deal with my UTI's. Good luck!

**pfcs49** · 5 Jan 2021, 1:08 PM

When I sanitize my bag (every 4 days/showertime), I put a cup of water and 40cc bleach into the bag through the tubing. I open the drain and squeeze the bag resting on my thigh, until the drain tube is almost overflowing, then connect the inlet tube to the drain tube. This gets almost all the air out of the system and almost everything in contact with the sterilizing solution.
I'll squeeze the middle of the bag so it's separated, and squeeze the bottom which forces the solution back to the top via the tubing. (It's kind of like a two ventricle heart)
This way the whole system is sterilized excepting the catheter itself.
I use the 32oz latex bag as well; allows long runs between emptying.

**dewie27** · 6 Jan 2021, 7:00 PM

Sorry missed coming back here, got UTI sick again and back on Macrobid.

when you guys take the 4000mg of Vit C do you take it all at once or spread it out through out the day 1000mg 4 times a day. I’ve tried this years ago and didn’t work then read a article saying low PH is key to keep ecoli out so never thought about it again. There’s so much information out there you don’t know what to trust.

And that goes also to cath change times. Most everyone says 1 month change time. Then a nurse told me to change it 2 months and it was at the time when things where working well. I’ll try the 2 week method though.

My Urologist email and his only ideas left was to try something him and a urologist In Toronto want to try and I’d be the first person to try it is....... fosformycin bladder flushes lol said no thanks I’ve seen how the gentamicin flushes went for me so no thanks. And fosformycin is one of few AB that still work for me. Another one is Chephalex but I’m allergic to it. And Macrobid kinda works.

So I have a consult in March and surgery June or July. I just pray it stops this non sense and can stop all these infections and antibiotics use.

I never knew there are a few “super antibiotics” out there. I guess they can mess with your hearing but work.

But yes I drink a lot. I have to buy the 4000ml night bags cause the 2000ml ones will burst. I bleach it every 7 days too.

**dewie27** · 6 Jan 2021, 9:38 PM

And I just pieced something together. For Days I’ve been having bad diarrhea and just googled side effects of D Mann and that’s the main side effect. And higher does are bad for kidneys. So I can’t take higher dose. Normally I’m backed up but this is insane. Thank god I got my colostomy. Other wise would be real upset.

**SCI-Nurse** · 7 Jan 2021, 12:01 AM

Bleach does not sterilize it disinfects-which is enough.great summary of your care. Thanks for sharing.CWO

**hlh** · 7 Jan 2021, 11:36 PM

Sorry to hear you are back on antibiotics. I'm amazed that some of the simple antibiotics seem to be effective for you. How long of an antibiotic course do you take?

Yes, it is a good idea not to leave the foley in for 2 months if you are getting UTIs every 2 months. Let us know how the 2 week method works.

Yes, divide the vitamin C into separate 1000mg doses. My Dad only takes 1 or 2 a day, maybe 3 if we are worried he is getting a UTI. You are going to just pee out the excess....

Curious, how do you manage your foley every day... do you use a leg bag? Do you keep the same leg bag attached until you change the foley (closed system) like the nurses recommend now, and just hook up the overnight bag to the outlet of the leg bag? Do you clean the overnight bag every night? How? Why do you only bleach it once a week?

My Dad's bags get nasty quick as his bacteria are always multiplying..... Since he does an instillation every day, he changes his leg bag every day. After he disconnects the foley from the bag and instills, he lets the microcyn dwell for 10-30 minutes (uses a catheter plug or leaves the syringe sitting in the foley as a "plug") and then attaches a new or clean (always bleached and cleaned with an alcohol swab before connecting) leg bag. Then at night, he attaches a new or clean (always bleached) large overnight bag to the outlet of the leg bag. If the bags have been used before and have any bad/bacteria smell to them that doesn't clean out, we throw them away.

Did you just recently change your D-mannose dose? My Dad has never had diarrhea that we could associate with D-mannose, although I have read that can be a side effect. He has sometimes had diarrhea when he has a UTI though!

Do you take a probiotic?

**dewie27** · 11 Jan 2021, 8:06 PM

Thanks HLH

I haven’t had Macrobid for a long time and just started going back to it. My Dr wrote my a Rx for 100mg 2x a day for 10 days. I’m thinking of cutting it to 7. Question more for the nurses. When we have reoccurring infections is it a good habit to rotate antibiotics so we aren’t using the same one time after time? My old GP Dr did this and my new GP doesn’t. Might keep the AB from becoming resistant quicker.

Yeah with my Indwelling foley I use a leg bag at day time and night bag at night. I spray the connecting inside and out with Microcyn and then alcohol wipe the outside connection. Since Microcyn doesn’t work for my Ecoli I wonder what else I can use to spray inside the tube?? I know I said Microcyn doesn’t work before and could be introducing germ into my bladder that way, but when I’m close to an infection my bladder get pissed with the microcyn and give me AD and bladder spasems so I know in a week I’ll be deathly ill and time for a AB.

Yeah I know D Mann only works for Ecoli so last year especially I was taking a Hefty scoop of D Mann in a each 1L water I drink x 5-6L a day. Last week I tried 2 hefty scoops per bottle and was bloated and diarrhea. So that was to much apparently.

Besides Vit C And spreading it out like you said I’m out of ideas. I’m so desperate I’m trying Body Talk. I did this 6-7 years ago when I had no infections but it’s all about our energy and apparently the bladder is where we hold all our anger. So trying anything and everything like I have these last 2-3 years especially.

thanks for the suppose guys/gals.

Duane.

**hlh** · 14 Jan 2021, 6:07 PM

So, it was unclear from your post.... but are you disconnecting the leg bag every day and removing it and replacing with an overnight bag directly attached to your foley? Or are you connecting the overnight bag to the bottom of the leg bag? Are you spraying microcyn directly into the open end of the foley every day?

Maybe you need to switch to the method the nurses recommend and do not disconnect the foley from the leg bag at all. When you place a new foley, attach it immediately to a sterile leg bag. Don't disconnect them until the next time you change the foley (in two weeks?). Then every night, connect a clean overnight bag (cleaned with bleach every day!!) to the bottom of the leg bag using a piece of tubing to connect them. In the morning, disconnect the overnight bag and drain/clean with soap/bleach and leave to dry. Forgive me if you are doing this already, but you didn't make it clear in your post.

My Dad doesn't do it the way the nurses recommend because he does an instillation every day so has to disconnect the leg bag. But any bag that gets disconnected does not get reconnected without getting cleaned/bleached/air dried.

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New antibiotic that won’t become resistant!?!

New antibiotic that won’t become resistant!?!

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