Chronic UTIs - Nearing the End of my Rope!

[RuthWells]

Hi everyone,

I haven't posted in a very long time, but I hope that you all won't hold it against me.    I am a second-generation PKD patient, almost 4 years post-transplant (whoo hoo!) thanks to my very generous older brother.  I'm running into issues now that my neph and urologist seem to be having a hard time addressing, and I'm hoping that some of you here might have some advice or wisdom.

I have been prone to UTIs since I was very young, and after the transplant (and immunosuppression) they seem to have really taken off.  For the last two years my urologist had me taking Macrobid prophylactically to prevent infections, which worked pretty well for a while, then it stopped working all together -- I seem to have become resistant to Macrobid.  We are trying Cipro instead, but Cipro does not seem to be as effective for me, and I'm allergic to all sulfa meds, which cuts the playing field down even further. 

I can anticipate, within the next few years, becoming resistant to all of the effective broad-spectrum antibiotics, which is a scary thought.  Without getting too graphic, I do every thing that you're supposed to do to prevent UTIs (including taking cranberry supplements), and I'm still getting them pretty regularly.  Short of blowing out all available antibiotics, what could/should I be doing?  Has anyone else had this issue?


R

[Charlie B53]

being a 'Guy' I know very little about UTI's.  Little Sister used to have them far too regularly.  She changed her diet, not just adding cranberry juice but something else.  And it dropped the occurrence to only a couple a year.   Sorry I can't ask her.  A stroke took her a couple years ago.  Pretty sure it changed the pH of her urine which made the bladder far more resistant to infections.

But there is hope.

Have you Googled UTI Prevention to see what comes up that you haven't already been trying?

[RuthWells]

I'm sorry to hear about your sister, Charlie, but thank you for sharing.  I have googled, asked lady friends, asked doctors..... I guess I am hoping that someone with kidney failure might have more insight than I've been able to find thus far.

[cassandra]

Way back when I still had my dad's kidney I used to have near constant UTIs. They suddenly stopped after started eating yogurt a lot, drinking cranberry juice, peeing and washing a lot after sex, and never sitting on anyone elses toilet anymore ever. Don't know which one did the trick.

Lots of luck, and love, Cas

[kitkatz]

Check out some of the supplements in the local health food store if you can take something from there with your transplant.
Always consult your doctors before taking anything.
Check your water and fluid intake.
Drop sodas out of your diet of your drink them.
Check your diet and eat healthier, if you are not already.

[kristina]

Hello Ruth,
I sympathize with everyone who has to endure UTI’s, because I know how irritable and bothersome they can become..
I also went through a time, when UTI’s appeared on a regular basis and as a result of this, doctors put me on different antibiotics again and again.
But the antibiotic-treatment was a complicated and painful process in itself, because of my allergies to so many different antibiotics ...
In my desperation I started to drink every day at lunch one glass of half a squeezed fresh lime, mixed with (filtered) fresh water and it helped.
Of course it could just have been a coincidence that the UTI’s happened to stop at that particular time,
but - just to make sure - I still drink one glass of freshly squeezed lime-juice every day at lunch ... and I have been UTI-free for many years ...
... and, as an added bonus, it looks as if my daily glass of fresh lime-juice has assisted to keep my (very poor) kidney-function "plotting on" 
despite my starting dialysis in December 2014 ... ( ... touch wood it continues like that) ... 
... Please ask your nephrologist for his opinion ... and good luck with your transplanted kidney !
Best wishes from Kristina.

[Athena]

Hello Ruth,

I've only ever had an UTI once before in the past and boy that was enough for me. These things really can make you feel miserable and being on antibiotics felt almost as bad as the UTI itself because I always seem to have a bad reaction to them.

Cassandra's advice about peeing and washing straight after sex is what I was told will greatly reduce the risk of getting this again (sexual activity is unfortunately a risky business for woman who are prone to UTIs). So extra hygiene measures may be called for. Constipation is an additional risk factor for UT1s as well. It's all about preventing certain bacteria from being able to travel through the urinary tract (which is always more easier in female anatomy).

I wish there was some sure-proof way to guard against this nuisance. If you find some non-antibiotic way of keeping this at bay, please post your findings here. Many of us sure could do with this advice.

[kristina]

.

Cassandra's advice about peeing and washing straight after sex is what I was told will greatly reduce the risk of getting this again (sexual activity is unfortunately a risky business for woman who are prone to UTIs). So extra hygiene measures may be called for. Constipation is an additional risk factor for UT1s as well. It's all about preventing certain bacteria from being able to travel through the urinary tract (which is always more easier in female anatomy).

I wish there was some sure-proof way to guard against this nuisance. If you find some non-antibiotic way of keeping this at bay, please post your findings here. Many of us sure could do with this advice.

... Sometimes there may be other factors "at play" as well : in my case it was all due to recurrent SLE/MCTD flare-ups  ...
Best wishes and good luck from Kristina.

[Charlie B53]

Ding!  (That's when a light goes on in my head)!

Sister pretty much quit wearing jeans.  If she wore pants or shorts at all they were very light material, breathable fabric, so as to help the area remain drier.  Mostly went back to skirts or loose long dresses, often with NO underwear.

[RuthWells]

Thanks for the input and validation, everyone.  The only thing I haven't really tried is the lime juice trick, and I may just add that to my arsenal!  I'll report back; if it works for more than one person, maybe it will work for more.  Thanks so much!

[talker]

Not sure  how this fits in for those with transplants.

Take a look also, at myrrh and golden seal herbs.

(Remove the @, then copy and paste.)

@http://eatbeautiful.net/2014/08/27/5-herbs-that-heal-utis-within-hours/

@http://www.livestrong.com/article/280775-herbal-treatment-for-bladder-problems/

[Angiepkd]

I am also a PKD patient with a transplant.  I have had UTI's since my teens. I found that besides all of the "normal" recommendations, I have to completely avoid oranges and orange juice. After my transplant, I started eating halo's (small oranges) because I assumed my new kidney would now allow me to have them again. Wrong!  UTI within a week.  A neighbor who is a retired urologist told me that PKD patients should avoid citrus at all times. Not sure why, but I do find it to be true for me. The problem is, I love oranges and orange juice lol!  Not sure if you are an orange juice drinker, but if you are, try cutting it out of your diet. I still get a random UTI occasionally, but they are few and far between.  Mine now occur mainly after I have had a terrible bout of diarrhea from the cellcept. Sorry if that was too much information!  Hope you find a solution!