Chronic UTIs

[Jodiebell]

I am now getting UTIs every few weeks.Nitrofurantoin works but after a one week course it comes straight back.Often the lab results come back as mixed growth so no sensitivities performed as attributed to contaminants ( not always- sometimes a single organism is isolated ) Had urodynamics last week which showed my urethral sphincter does not relax so they are now recommending SNS .The test showed a massive residual of 450 mls which I had no idea about because I felt my bladder was empty.Im not sure if I need a longer course of the nitrofurantoin.Got a really bad infection post procedure-MSU prior to procedure showed mixed growth , so probably shouldn’t have gone ahead with the urodynamics.Getting so frustrated -have one kidney( other one destroyed by repeated inf cation so removed) and have ended up in hospital twice this year with urosepsis .Dont know what else I can do

[Manchesterlady]

Hi , uti infections are miserable. Like you I have had several, my doctors thought it was because I had a kidney stone , however after seeing a urologist, who did a ct scan , the stone was no longer there. He did a cystocopy , and since then I haven’t had any infections 🤞🤞🤞my doctor says this is because he stretched my uretha and my bladder is emptying.

[PMRpro Ambassador]

That's really not nice is it! But at least the urologist is taking it seriously - do hope the SNS works.

But it is always worrying when you only have one kidney isn't it - my daughter has hydronephrosis, one kidney in particular the renal function is not good and she was really worried at not yet 40, But at least now they know what it is: endometriosis! And the same for you - that much residual urine is bound to lead to infections. Have you to wait long for the SNS procedure?

[Linny3]

After a year of not having any uti's I am now experiencing them again. Like you, every time I turn around I have a new one. I started on methotrexate 3 months ago and I'm starting to wonder if that is the cause. Metho.can make the body less able to fight infection..

Good Luck

[Jodiebell in reply to Linny3]

Methotrexate can suppress the immune system.Not so much as other chemotherapy medications, but it does .Its just so miserable having constant UTIs and I think people see them as a minor inconvenience, but I’ve had days when I can’t get up off of the sofa as I feel so ill .Have you discussed this possibility with your GP ? X

[YuliK]

Try drinking cranberry juice. There is sugar free cranberry juice on the market.

Source: health. Cleveland Clinic.

google.com/amp/s/health.cle...

For years, people have used cranberry juice to prevent and help cure urinary tract infections (UTIs). ... Pure cranberry juice, cranberry extract, or cranberry supplements may help prevent repeated UTIs in women, but the benefit is small. It helps about as much as taking antibiotics to prevent another UTI.

[Jodiebell in reply to YuliK]

Yes I’ve tried that and still do take cranberry supplements ( also eat a lot of blueberries-which are supposed to help too )

I’ve read about biofilms in the bladder and wonder if that’s what is happening ( bacteria almost becoming part of the cellular structure so antibiotics don’t reach them) It was also suggested to me many years ago that I could be admitted to hospital for huge doses of IV antibiotics.Was told that this would make me feel very ill for a while , so declined .Now wonder if that would still be a possibility x

[YuliK in reply to Jodiebell]

I have suffered for Yonkers with uti's. Since having my hysterectomy 11 years ago

Funny though, since starting with the pmr medication I stopped taking the small dose of

anti-biotics, preventive, and touch wood, until now, 18months on, no UTI symptoms...I do drink loads of water and no alcohol.

I can really empathize with you, UTIs are a darn curse.

Drink water as much as you can, especially in this hot weather.

YuliK.

[Gosingen]

Hi I don't often join in here, but saw your post and having had many similar problems myself I sympathise, it's miserable. You may know this already of course, but just in case you don't... I was told by my urologist some years ago that when I empty my bladder I need to wait after the 'first lot' then bend foward and carry on emptying the bladder. I'm still amazed on how much more urine I can empty with this advise. I too had too much residual urine and my urethra was been stretched, which did improve matters. Dreading another UTI and kidney infection as I'm intolerant to so many antibiotics. Wish you all the best and hope something works for you.

[Jodiebell in reply to Gosingen]

Thank you .I will try that .Im really not looking forward to having an electrode placed in my back, so if I could find another solution that would be great.You are right it’s thoroughly miserable

[Hidden]

Hi Jodie

I’m in a similar situation to you, the Pain started in my flank, kidney area last December & it was unbearable at times.

As I’d registered with a new Doctor in January, I took a urine sample with me just for checking and it was positive for everything!

I started with the course of Antibiotics on the 30th of January I’ve pretty much been on & off antibiotics since.

I am scheduled for a cystoscopy in two weeks, I have already had a CT scan to check if I kidney stones but that came back clear.

I only ever have the pain in my back, no urine issues as such. The GP said that could be being dampened down by the Prednisolone.

I have my urine tested each time & it’s invariably when l send back in the sample to check it’s clear, they find another infection!

l’m waiting now to see where we go from here after the Cystoscopy.

Kind a Regards

MrsN

[Jodiebell in reply to Hidden]

Hope they identify a reason with cystoscopy

I’ve now just been put on continuous antibiotics as my last sample cultured a very resistant organism.So waiting to see what my consultants plan is - likely SNS which I’m not looking forward to x

[Hidden in reply to Jodiebell]

I’m more convinced it’s my kidney as l have no bladder issues l’m aware of. I’ve not heard of SNS so l’ll look it up.

Take Care x

[Jodiebell in reply to Hidden]

Its sacral nerve stimulation- I know it involves placing an electrode into the back to make the urethral sphincter relax , but don’t know anymore than that.Urodynamics picked up massive retention because me brain doesn’t tell my urethral sphincter to relax .Im convinced it’s been caused by the fact I’ve worked as a nurse for 39 years and don’t get time to go to the toilet on a 12 hour shift, so I’ve lost the sensation to go

[Hidden in reply to Jodiebell]

Oh doesn’t sound pleasant, the not going to the loo when you should can be a problem later on.

I hope it helps for you, when you have it done.

Let’s us know how it goes.

Good Luck 🍀

MrsN

[Hidden in reply to Jodiebell]

I know that performance. Along with shift work outdoors years ago, damage from back surgery I only rarely get the urge to go. Or if I do I still seem to "ignore" it....silly thing I am. I have started to double void now so have a little more control. I am surprised I haven't had any UTI but keeping fingers crossed.

[PMRpro Ambassador in reply to Jodiebell]

It certainly does store up problems! The nurse daughter doesn't - the paramedic one does!!

[Jodiebell in reply to PMRpro]

Yes my consultant has told me that this is a common problem with nurses , paramedics and taxi/ bus drivers !!

[yewtree]

After many years of UTI's my doctor put me on ovestin cream which rehydrates the tissues and I have not had an infection for over a year (touch wood). She said I will be on it for ever but at least I can eat and drink acid foods now (used to burn the vagina) and can have occasional glass of alcohol!