recurrent UTIs

[agatha]

Hi there
I've been getting recurrent urine infections for some while now (about every 2-3 weeks).  I actually think it's the same infection which never quite goes and flares when I get tired - antibiotics do help but they never seem to get rid of it completely.  The doctor is starting to talk about a 6 month course of antibiotics.  I'm keen to stop having the UTIs but not so keen to take antibiotics for so long.  I do find that alkalising my urine with sodium bicarbonate helps a great deal but I don't know if it's safe to take this every day - does anyone know about this or have any other ideas for what to do?
Thanks
Agatha

[Scottietottie]

Hi Agatha 

I suspect that you're right and that if you are getting UTIs that regularly, that it is something recurring. (I'm not a doctor, not a medic)

I know I've read in here about somebody who was put on a long course of antibiotics for a similar problem and I believe it helped.

Have you been referred to a urologist? Personally, I think that if something keeps recurring, an expert could be needed.

Take care - Scottie   

[jaygee]

Have you tried drinking pure Cranberry Juice?  I am sure I read somewhere that there is something in it which prevents bacteria adhering to the walls of your bladder and that this helps with infections.  Hope you are feeling better soon.  xx

[hoping]

My urologist says cranberry pills are better than juice, you get more cranberry in the pill form than in juice.  Since I have taken them I have not had a recurring UTI.  However I think I am suffering from one now or from interstitial cystitis, something else sjogies can get.  Need to get in and have urine tested again.  It was ok a couple weeks ago, but having more pelvic pain and urgency now.
On i. cystitis in SjS:
http://www.mayoclinic.com/health/sjogrens-syndrome/AN01893 
For more on interstitial cystitis:
http://www.mayoclinic.com/health/interstitial-cystitis/DS00497/DSECTION=coping-and-support
FYI article on UTIs:
http://www.mayoclinic.com/health/urinary-tract-infection/DS00286
This probably answers nothing in your question, but just some more info to digest.  Do follow up with a urologist though.

Karin

[Dolly Dimples]

  Agatha, my Doctor told me that one golden rule of ITU's  is the lack of completely emptying the bladder..

            Don't rush your visit to the loo, sit and wait till you pass the last drops, so that you can't pass on any infection that could be been still laying in the bladder..   the other tips  sent  can be help ful  too. and also drinking plenty of water.

             I have done this religiously since and touch wood , kept clear..  
                                                                  hope this helps, Dolly.

[ktfabian]

Agatha,

I had the problem that Dolly Dimples just mentioned.  When referred to the Urologist,  they had me empty my bladder til I felt it was totally empty, then did a quick ultrasound, there was still 6-1/2 ounces still in there.

The urologist said if the problem continued, I'd have to go through some tests that I'd been through before and would rather not repeat.  So I really concentrated on relaxing and waiting for the second wave (so to speak) and I realized it takes 2 tries to completely empty my bladder.  At my next visit, I was completely empty.

This may not be your problem, but if you haven't seen a urologist yet, I would recommend it.  They can do a bit more than just test the urine to see if there's an infection.

I hope you get some relief and an answer to your problem very soon,
Tracy

[Dolly Dimples]

  Tracy is dead right,  that is what I was trying to get over to you..

   Sometimes I think I have passed all my water, then I get as far as the bathroom door, go back squeeze again and hey presto I pass a few more drops..

    You will soon learn the art of all this Agatha!   Dolly

[LAU]

hi agatha, sorry to hear that you're having such a problem with UTIs. i understand how painful they can be!
i agree with taking cranberry pills, making sure you pee completely, but also something that was important for me but not mentioned here yet is peeing after sex. if i have sex and don't force myself to pee immediately afterwards, i'm sure to get an infection. no idea if that tip applies to you, but thought i'd put it out there. i know it helped me.

also drinking tons of water helps.
and sleeping with no underwear. 

[lynnmarie219]

Hi Agatha!

I have had the same problem that you describe and I agree that a urologist is the one that needs to be consulted with...I had repeat UTI's close together and my doc referred me to one right away....it would go away while on antibiotics and then come back rather quickly when I was off the antibiotics for a short time.

Between my rheumy and urologist it was decided to put me on a 6 month dose of antibiotics and this is what helped me. I was also of the mind set that it was one long infection that never really went away as my body would not (could not) fight it off completely.

I also did many of the tests that Tracy referred to...not fun...but necessary I felt. I also still had urine in my bladder (which showed up on the bladder scan) after I thought I was done going so this probably also contributed to my problem. My urologist told me to try to put myself on a schedule of not going for more that 2 hours without trying to go to the bathroom...I'm one who "forgets to go" when I get busy...especially at work!

Good luck to you...and I hope you get some answers soon....recurring UTI's can be not only uncomfortable but painful and irritating. Let us know how you make out.

[agatha]

Thanks for all these helpful tips - I will try them.  It's nice to know you guys understand how debilitating UTIs can be  when they keep happening so frequently - most people think of them as a minor ailment.  I also have MS and the UTIs tend to trigger new neurological symptoms so it's doubly horrible.  I was recently in hospital with pyelohephritis (ie infection going up into the kidneys) but the docs wouldn't give me antibiotics because I had no fever - I rarely get fevers when I have an infection since all this autoimmune drama started (just feel really cold and shivery) - does anyone else find that their temperature control is rubbish?
bw
Agatha

[LAU]

yes agatha, i too do not get fevers like no matter what. sucks cause its just another thing that makes some people think i'm not really sick. so annoying.
i can get very cold and shivery or hot and terribly sweaty. its no fun. i thought it was unrelated to SjS until reading many others complain of the same thing on this board.
i was only diagnosed last week so its hard for me to connect everything just yet.

[ktfabian]

Agatha-

I don't get fevers either, anymore.  I just had pneumonia, and the highest it went was to about 100 degrees, which isn't considered much of  a temperature.  But the CAT scan showed the pneumonia was there. While I was in the hospital, my temperature was usually something like 97.6, and the nurses would check the thermometer twice just to be sure, but that's what it was.

Good luck getting the UTI's taken care of.  Feel better soon,
Tracy

[agatha]

Thanks for these replies re no fever - it's nice to know I'm not completely bonkers!  Lau - hope you're doing OK with the diagnosis - it's a bit of a shock but then things can get better because you know what you're dealing with.

love to all you lovely people
Agatha