15 replies to this topic

[hipcrip]

I've always had problems with UTIs -- it started long before I got my Foley put in. It was so bad at one point that my docs put me on a daily low dose of Macrodantin as a preventive, which worked great until it caused such bad scarring in my lungs that I had trouble breathing and I had to go off it. (Apparently long term use can cause this allergic reaction.) I also developed an allergy to sulfa drugs over the years.

With me being unable to take two categories of drugs that are most commonly used to treat UTIs, and occasionally getting a bug that's resistant to all oral antibiotics, my docs have become concerned about prescribing me antibiotics every time I get a UTI -- especially those that are e coli based. I get a lot of those despite taking extraordinary hrgeine measures, drinking a gallon of water a day, and taking cranberry capsules and D-Mannose as preventives.

The docs, in consult with an infectious diseases specialist, have now recommended not treating any UTIs that are e coli based, instead letting the bugs colonize my system so we can "save" the oral meds for the really severe infections I may get down the line (especially lung infections -- all that scarring caused me to get another lung disease that creates pockets where infections get into that are very hard to cure).

I'm all for not overusing antibiotics, but can ignoring an e coli UTI and letting the bug colonize be healthy for you? I've read that prolonged bladder infections can increase your chances of bladder cancer later, so I'm more than a little concerned.

Does anyone have any experience or knowledge of this? I live on a small Caribbean island with no urologist and not a lot of options for changing primary care docs, so until we can get our house sold and get back to the states I'm kind of stuck with the medical care I've got. Any guidance or advice is greatly appreciated!

[longhaul]

Have you tried Olive leaf extract ? It's an excellent anti biotic that the bugs don't develop a resistance to and since Ive been taking it I haven't had any UTI's. You can get it mail order on the net I use "Solaray 250 mg." 4xday. Have you tried taking a dose of D-mannose at night so it stays in the bladder longer and are you sure it's real D-mannose .

[hipcrip]

Hey longhaul! Thanks for the uber fast response, and on Xmas no less. You're this year's Santa for me.

I'd never heard of the olive leaf extract before coming across it on the boards here, but after seeing so many positive comment about it here, I will be giving it a try. Does it have curative properties, or is it just used as a preventive measure? If it can be used to cure, what are the dosage instructions?

I take a 1500 mg dose of real D-Mannose every six hours, plus a booster dose of 1500 mgs after each bowel movement. If I start seeing the telltale white globs and residue that indicate infection floating about in my cath drainage tube, I will switch to taking 1500 mgs of D-Mannose once every hour for 24 hours. That usually clears up the floaters, but I have never had a culture run right after that home-based treatment to see if it has truly cleared the infection or just beat it back a little.

Thanks for taking the time to help -- like so many others of my crip brothers and sisters, I'm just fed up to overflowing with having to devote so much time, energy, and brain cells to managing bodily functions!!

[edlee]

Just saw something on The Food Network show Good Eats, regarding cranberry juice. It seems that the capsules and tablets aren't as good for utis than the real thing... And we aren't talking cranberry juice cocktail, here,,,,, only three full glasses of the real ( nasty as it tastes) juice, per day, will work.

Can't say for sure, as I only saw the show yesterday and haven't tried it yet.
ed

[longhaul]

Another thing that is worth a look is pro-biotic s they're destroyed when taking anti-biotic s, they keep the bad bugs in check. It seemed like every time I took the anti-biotic s after the infection was gone I would get a new infection a couple of weeks later but if I take the good bugs I didn't, go figure. For a maintenance dose I take 2 caps a day but for an infection 4 will do. Olive leaf can help to stabilize blood sugar levels and is good for colds, flue and candida . It has been used for hundreds of years and I have been taking it for about 10 with no side effects so it's considered safe. I have low blood pressure but I had it before I started taking olive leaf it's said it can lower BP so you should watch for that. It's an antioxidant which is a good thing for cell protection. Hang in there..............

[allis53ca]

i got off the antibiotics and succumbed to colonization...lifes been easier

[hipcrip]

allis....

I'm so glad to meet you and glad you replied -- you can always get the best info from someone who's BTDT (Been there, Done that).

Would you please explain in more detail about why letting the infection go untreated is better for you and easier? How do you cope with the symptoms of infection, or do they eventually subside as your body get used to the situation? Do you get regular cultures done to make sure that no other bacteria/infections have set in? I just can't get my head around how inviting these bacteria to stay can be done without serious consequences occurring.

Thanks!

[edlee]

The key here is that the E coli are always in there anyway. The actual problem is when they cause inflamation of the linings, causing the body's defenses to kick in,,,

Once the body does it's job, the danger is over, but those little guys are still in there. One school of thought is that we should allow the body time to do it's thing before we resort to medications,,,, and only if the defenses are overwhelmed.

I don't think I'ld go there with some of the worse bugs,, but E coli is generally,, fairly innocuous,,,,,usually.

I'm interested in hearing Trin's opinion.
ed

[hipcrip]

Quote

The key here is that the E coli are always in there anyway.

Sorry, ed, but I have to respectfully disagree that e coli are always present. If they were, they would show up in every urine sample that's submitted, and the only way to truly tell if you were infected (i.e distinguish between those bacteria that are just floating around v. those that are in the lining] would be to do a biopsy of the bladder walls. Since that's not standard operating procedure (pun unintended), it stands to reason that unless colonization has occurred, the normal state of the UT is e coli free.

If you're hoping Trin shows up, so am I! I'm also hoping our resident nurse and generally smart person all around Kewlkatz (apologize if that's misspelled) will contribute her insights into this.

[Trinity]

Ok......
Normally urine is sterile, or close too it, the only time ecoli or any bacteria are found is when there is an infection, however, if you are not symptomatic then there is generally no need to treat a UTI. I think most people who have catheterise, whether intermittent or have an indwelling catheter will have some bacteria present.

Hipcrip, it is probably a reasonable idea for your doctor to withhold antibiotics as the bacteria will become more resistant especially as the choice of what you can take is already limited.

(can I just point out my area of expertise is anaesthesia and critical care and not urology! lol)

Edited by trinity, 28 December 2008 - 07:15 PM.

[hipcrip]

Thanks for the medical opinion, trinity -- even if this isn't the specialty you trained for, your personal experience plus degree makes your contributions invaluable.

I understand, and agree with, not using antibiotics unless absolutely needed. My problem is that I am symptomatic. I have pus in my urine all the time (not to mention the darn crystals that join with the pus to gunk up my collection bag tubes and are impossible to remove just through soaking with a vinegar solution), and my urethra is irritated as hell. (Being that I am an incomplete SCI, I still have feeling there and this pain can get pretty bad near cath change time.) I always run low grade fevers thanks to that lung condition (bronchiectasis)I mentioned in my OP.

I used to be able to use these symptoms as a way of telling that I had an infection. No that we've gone with not treating the e coli infections, how am I supposed to know if/when I get an infection from some more "potent" bug? Should I be getting regular C&Ss run to make sure it's just e coli swimming around in there? Will the symptoms eventually calm down as colonization occurs?

There's also that concern I mentioned earlier about the risk of bladder cancer increasing with the presence of infections.

It seems to be another case of damned if you do and damned if you don't.

Sorry to get all melancholy -- I'm having one of *Those* days today.

[edlee]

Far be it, for me, to argue points with experts in their own field,,,,,,,BUT,,,,,,,

After an hour googling and reading I have to disagree with your statement that urine is sterile. According to the tracts I have found, we,, SCIs,, do indeed ,,, as a norm,,, have quantites of bacteria present at all times,, in our bladders,,, and thereby , in our urine.

E coli , being one of the most common on earth,, is one of the many. The common practice of doctors, without a grounding in matters sci,, is to prescribe antibiotics when ever any urine test shows positive for any of them. But ,,, again, from what I have just read,,, more knowledgable doctors refrain from such presriptions unless actual signs of infection,,,,as apposed to colonization on a lesser scale,,, are indicated.

http://sci.rutgers.e...read.php?t=7451

This is one of those I looked at,, and one that seems apt for this thread.

Again,, I apologize Trin,,,, yours are not the toes I would choose to tread upon.
ed

[allis53ca]

...i guess i just got used to the sympts as part of daily coping schedule....when i was on anti-bios, my body was always worn out from fighting infect as opposed to now just living with it....kinda like the bitchy spouse thats easier to live with b.s. instead of fighting over b.s. every day...if you can't kill it, adapt...........

[hipcrip]

allis53ca, on Dec 29 2008, 08:52 PM, said:

kinda like the bitchy spouse thats easier to live with b.s. instead of fighting over b.s. every day...if you can't kill it, adapt...........

~LRL~ Good analogy, allis. I can get my head around that!

[doublelibra]

I have a suprapubic catheter, and I used to get frequent UTI's, even having sepsis with a couple of them. We used to treat them if the urine had any more odor than usual, or had a lot of sediment or mucous present, after performing a culture. Now my home health agency is much more negligent, and I think less vigilance has led to less unnecessary treatment! That's rather ironic. It is true that normally urine is sterile, but if you have any cath type, there is a pathway for bacteria to enter. The trick is to keep the number of colonies down. I keep the site very clean, washing it with soap & water 2X/day. I don't use a leg bag. I put my bedside catheter bag inside a cloth bag, which we hang on part of my chair between and behind my legs, so the catheter bag is not visible. All you could mayme see is a couple of inches of the tubing. It's no less subtle than the big old Popeye leg look you get going when the leg bag gets full. I only change to a brand new bag midway between cath changes, or if one springs a leak. This keeps the system closed at all times. I have the whole tube and bag changed every 3 weeks. I'd never go more than 4.

I can't afford pure cranberry juice, and I don't drink it. However I do take 500 mg. of vitamin C 3X/day, and I think this is important. Another important thing: I do not drink soda pop. It is very bad for the urinary tract, and has been associated with the formation of stones. Regular or sugar-free are both bad for you in a number of ways.

That is my prevention regimen, and I have not had a UTI for over two years!

doublelibra

Oh yeah, I forgot to say that I drink a LOT of water to keep the bladder flushed out. That is VERY important. I drink some coffee, which doesn't seem to affect the bladder one way or the other.

Edited by doublelibra, 30 December 2008 - 05:11 AM.

[hipcrip]

Hey doublelibra -- thanks so much for your detailed reply.

It's refreshing to hear from someone who has a system that really works for them. I'm sure that your infrequent bag changing contributes quite a bit to the lack of infections. My current chair doesn't have a place from which I can hang my overnight bag so it will be below the level of my catheter -- otherwise I would join you in using the same bag all of the time. Perhaps the chair I just ordered will allow me to do that, if it ever gets here (Medicare paperwork red tape -- grrr!).

You say that you used to get infections -- was that prior to getting the suprapubic cath or after? From what I have read, the incidence of infection is supposedly far lower with suprapubics than with Foleys.

And yes, it is pretty ironic that you're actually doing better infection-wise now that you have a less attentive home health agency!