E coli persistent in urine and not responding to antibiotics

[stirling]

Can anyone help at all?

I'm very worried. At the beginning of April, I got sudden cystitis type symptoms but had had ongoing urinary problems (slow flow) for a few years, for which I eventually saw a urologist in May.

I've had 4 courses of antibiotics since April : 3 day nitrofurantoin. Then 5 day Co moxiliclav. Then 2 weeks back to back nitrofurantoin. And the e coli still won't shift.

Bizarrely, since April I've had numerous urine tests via GP and hospital visits (ended up in A+E twice in May because of severe bladder retention, on both occasions urine was clear. )

I had a cystoscopy and urethral dilation recently and all that highlighted was an extremely tight urethra and a diagnosis of IC.

However, through a private appointment - twice my sample has come back with e coli. I'm being told by private urologist that I need to take amoxillin. But that's another penicillin - like the co moxiliclav I took before.
Been reading some awful stuff about antibiotic resistant e coli and how it can end up life threatening if leads to sepsis.

Why would the private clinics findings conflict with the NHS tests? My cynical mother is suggesting they're trying to make money out of me - but that can't be true can it? My symptoms are very much still there, they're either IC or e coli infection.

Any advice?

Thanks in advance

I've heard d mannose is supposed to be very effective of the E. coli type.

Haven't tried it myself because mine wasn't E. coli but I read that much on the internet about it and on mumsnet.

Are the GPs actually sending your sample off for culturing or just doing a dipstick test? I think it doesn't show with dipsticks. If you have symptoms I'd go with the private clinic's findings.

I've had recurrent urine infections for years now. The test results (after culture) show which AB it is resistant to. But I had numerous incidents of GP surgery telling me nothing was showing on dipsticks so they wouldn't send a sample off to be analysed.

Thanks both.
Purplecollar, what's the outcome for you then? Do you have e coli that's resistant?

Has it not ever shifted?

My infection is E coli. The AB NitroF does work for me. I became resistant to Trimeopthrin. Not surprising really - I was taking the 3 day course monthly.

I get them repeatedly. I probably need surgery really - I have a double prolapse (one straight after childbirth, the other due to IBS for 20 years). I have had TVT put in (mesh tape), about 10 years ago. But I think it's caused these repeated infections now. The TVTs are nigh on impossible to remove because they grow into your flesh.

My GP gives me a pile of prescriptions for AB basically. Because you can't get an appointment for maybe 10 days. So I have a supply. But really, I need to push to be referred to urology and probably surgery.

In answer to your question - it does shift for a bit, but then just comes back again.

Purplecollar that sounds awful. Have you tried Ciprofloxacin? I've just been prescribed it - my 5th round of ABs.

But the advice came from a private urologist who who had sent off the sample to the Doctors Lab in London - the breakdown indicates whether or not the strain is sensitive or resistant.

I've yet to see if these ABs work. Feeling cynical and low. They're very harsh.

A urine culture should include sensitivity testing to see what antibiotic is required to treat the bacteria. It's quite common to have bacteria resistant to some antibiotics.

Thanks sweetpotato. I've just been reading about the side effects of Ciprofloxacin. It sounds like a dangerous drug. Don't feel good about taking it at all...

I can recommend Ciprofloxin.
I had to take it when other antibiotics failed to clear up a UTI.
My GP called it the 'Domestos' of antibiotics.
Have never needed it again as Nitrofurantoin does the trick now.
Trimethoprim has never worked for me.
If your urine has been sent for culture and sensitivity, your GP should know the right antibiotic to prescribe.
I don't think Amoxicillin is used for UTI's very often these days

Ciderwithposie - thank you so much for that very helpful reply! I've not slept all night, been worried sick after reading so much awful stuff about the drug. Feeling a bit more reassured.
Thanks again

No I haven't tried that one yet op. I will take a note of it though and speak to my GP.

I hope it works for you.

Good luck purplecollar

Hi, I had my spleen removed a few years ago and was prescribed prophylactic antibiotics (penicillin) for life (!).

I started suffering from repeat UTI's. Symptoms were very frequent trips to the loo, severe pain in lower back and side, exhaustion. With courses of additional antibiotics every time (on top of the penicillin) and constant thrush (which was chicken and egg with the UTI) I was referred to urology. I had private healthcare so asked to be referred privately. The antibiotics were becoming resistant and there was only one or two which were sensitive to the E Coli like yourself. I stopped taking the penicillin as although it was not directed at the UTI and it was generally more broad spectrum I felt it was adding to the resistance problem.

I had the urethra stretched as you mentioned and also a weekly procedure for 12 weeks where they inserted a catheter and washed it out and added a liquid which was to line the bladder. This kept infections at bay for a few months. At one point I also had a one off antibiotic which was imported from Germany and I did get relief for a few months.

The urologist and a nutrionist both separately recommended D Mannose and by taking this every day things were much calmer. I fell pregnant and was advised to stop the D Mannose. Unfortunately I contracted an infection at 8 weeks and it lingered on and at 11 weeks I went into hospital with Urosepsis. They managed to get it under control with 2 different IV antibiotics but unfortunately I had a missed miscarriage. The fetus had stopped growing at 9 weeks (thought to be caused by the UTI). I fell pregnant for a second time quickly, but again had symptoms of UTI (although no bug was grown) and miscarried.

I was then told that as soon as I fell pregnant again I would be under consultant care and prescribed a second prophylactic for the prevention of a UTI specifically. So when I did fall pregnant I restarted the penicillin and was prescribed nitrufurantoin / trimethoprim. I did have a couple of UTI's during the pregnancy but thankfully all was ok , they just switched the antibiotics and I recovered.

I now have a beautiful 3 month old

Do order the D Mannose and take it religiously, drink plenty of water and don't hold it in if you need to do. I would also recommend Vitamin C.

All the best x

Purpleviolet, your story is so moving. I'm sorry about your miscarriages but incredibly glad you have a baby now.
Thanks for the advice. I went out to buy some high dose vitamin c today.
I've got the d mannose, it hasn't been helping this time - I don't know why.

This is the one I can recommend.. also if there is a possibility you have thrush do treat it sooner rather than later. Thanks Stirling, it's been a tough few years! I had the spleen removed alongside 80% pancreas because I was diagnosed with pancreatic cancer. The surgery went well thankfully and I'm so grateful for that but the recovery with all its issues was really hard going... I've lived to tell the tale though!

Dear Purpleviolet,

I can't find the words - I'm just so stunned to hear you've been through that and yet here you are, a mother and able to advise others.
I'm going to try to order the same one. Though losing hope - been taking it religiously now for 3 days, and the domestos antibiotics Ciprofloxacin aren't helping at all - in fact, my symptoms are worse since I started taking them on Thursday.

Take the D Mannose 2-3 times at least initially to get on top of symptoms. Also do you take probiotics? I can recommend these ones - around £25. The strain in these ones survive antibiotics whereas a lot of probiotics are killed off with antibiotics.

Thank you Stirling. That's made my day. Not many people 'get it'. They just don't seem to appreciate exactly what it means.

Thanks Purpleviolet, I've ordered it from Amazon - never heard of it before. Also sent you a pm.

I know this thread is old, and likely wont get a response but @Stirling how did you get kn with the ciprofloxacin? I'm in a similar boat to what you were and just been prescribed them today xxx