Severe Pyelonephritis / kidney infection reco... - Pain Concern

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Severe Pyelonephritis / kidney infection recovery

Cymraes84 profile image
8 Replies

Hi all,

I'm not too sure whether this is the most appropriate community in which to post this particular query, however I couldn't really find another relevant community either, and as I'm already a member here just thought I'd plonk it here anyway!

Basically, I had a nasty acute kidney infection just under two weeks ago. I had symptoms of a lower UTI for a few days which seemed to be abating of their own accord with plenty of fluid intake etc, however by the Sunday I began to feel quite unwell, and by the afternoon had began shivering uncontrollably and sweating profusely. By the evening I began to experience pain in my loin region and put two and two together. 

I got an appointment with the nurse practitioner at my local surgery on the Monday afternoon who swiftly diagnosed a UTI and prescribed a three day course of antibiotics. Despite this I became worse overnight with a terrible fever, vomiting and worsening pain. Had an emergency appointment with one of the GP's the following day who, given my symptoms, decided that a hospital admission for IV fluids and antibiotics was necessary. I uncharacteristically agreed to this as I felt truly dreadful!

I had a couple of rough nights, but the antibiotics they were pumping into me thankfully began to work their magic, and I was discharged a couple of days later with a course of oral antibiotics - Trimethoprim - to take at home. I finished the course on Friday, and whereas I am feeling much better than I did, I am still super tired. My GP gave me a week off work to recover which I have been appreciative of, but am still feeling pants, and don't really know what's 'normal' for patients recovering from Pyelonephritis. 

To be honest, the tiredness I had kind of expected as I was quite poorly, missed out on a lot of sleep and haven't been eating well either. But I have still been having the odd twinge of pain in my side and ache across my back, which again, I had expected to an extent, but it seems to be getting a little worse and not better. Not excruciating by any means, but very much notable at the same time. I also need to pee more often than usual (though this is pain free and my urine seems to be a normal colour etc) which could be attributed to fluid intake, but I'm pretty good at keeping myself hydrated anyway and wouldn't say that I'm drinking more water than is usual for me. I also still have little to no appetite and feel nauseous despite taking anti-sickness tablets as prescribed by my GP.    

I'm 31 years old, normally fit and well and don't tend to be 'sickly' person with bugs etc. I have also never really had trouble with UTI's other than one or two VERY mild, self limiting lower infections that have never become anything more than slightly irritating for a day or two.

I'm probably just being a bit paranoid or whatever, but would appreciate any input or advice from anyone who may have had a similar experience and could perhaps comment on recovery time etc. I've not long had my second bout of spinal surgery and would gladly chose to go through a third bout over another kidney infection!

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Cymraes84
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8 Replies
EOLHPC profile image
EOLHPC

hello cymraes.  am vvv much feeling for you.  i have a lot of experience of recurring persistent complex pattern utis with pyelonephritis invovling extremely severe sympomatology (true agony), and also of predisposition to persistent infections of other sorts (but that's another story). and i've had surgery on my spine.  and i know what it is to end up an inpatient on IV drip due to GP surgeries underestimating my need for high dose long course antibiotics.  gp surgery staff can be great, but they really do seem prone to thinking we're all average patients who must take minimum courses on antibiotics. In your case, already vulnerable due to the strain of surgery, my experiences would've led me to urge you be prescribed at least 1 week of antibiotics

perhaps there is something in my experiences that can be useful to you:

am 62, my version of recurring persistent UTIs with pyelonephritis  started in my mid 20s. because my gps failed to recognise the causes underlying this until 5 years ago, i had to do my best to cope...so i researched all the lifestyle management techniques & followed these conscientiously for decades, while taking the antibiotics i needed....eventually my gp did refer me to nhs womens health services physios for various trainings in pelvic floor fitness (i thought my pelvic floor was v fit due to years of conscientious pilates, yoga etc, but even so i did benefit greatly from the lessons these wonderful physios gave me)

i now have this predisposition to UTIs with pyelonephritis FINALLY under control, but it has taken my whole adult life to FINALLY get referred to urology.  last year, after 5 months of recurring utis with pyelonephritis, i saw the chief surgeon urologist who was horrified my gps hadn't referred me to urology many many many years ago.  he referred me to his female urology surgeon colleague who has been wonderful

in my experience, weakened by other medical issues eg surgery, you may take some time to recover stamina & resilience generally from a really bad experience like the one you've had with this infection.  meanwhile, i would stay close to your gp, submit a fresh early morning midstream specimen of urine (MSU) for lab analysis to make sure you aren't having a recurrence of grumbling infection...tiredness like that you're describing is definitely my indicator of persistent infection.

my feeling is that you may do well to do these things if you haven't already:

Make sure your GP is actually sending your urine samples in for lab testing (historical lab results are the first thing urology want, and gp's notoriously scrimp & save by neglecting to do lab tests....but you now have a proven predisposition to severe organ threatening infection which means lab tests are reasonable & appropriate)

Ask your GP if the lab results on your urine sample indicated amoxycillin or co amoxiclav would be appropriate antibiotics in your case.  Many of us find trimethoprin ineffective even when it's indicated partly because it's often combined with a sulpha antibiotic to which immune dysfunction patients badly react resulting in infection recurrence 

ask your gp for referral to NHS Womens Health Services physios for a pelvic floor fitness review

make sure you're conscientiously doing ALL the important conservative measures to protect yourself form UTIs (lifestyle management) and e.g.beware of cranberry juices which have too much added sugar: go for daily concentrated supplements instead

if any symptoms persist and if another UTI occurs within the next year, tell your GP to refer you to urology

i could give you lots more detail about my version of all this and the underlying cause/s, but i think i've gone on long enough.  the fact this is happening to you so early in life seems relevant to me: many women don't have this predisposition until menopause is approaching

wishing you all the very best with this

coco

Katiedoodle profile image
Katiedoodle

Keep an eye on it. I had an obstructed infected kidney 2 years ago, the first time I was admitted to hospital with sepsis then released as they missed the kidney stone (the kidney was blown up like a balloon so they new there was a problem just thought it was a bad infection) a month later I was plopped back into hospital by ambulance with a second more severe bout of sepsis.

In the intervening month I had been complaining that I wasn't well. 

That said the pain lasted well beyond the clearing up of the infection and obstruction. Even now the kidney sometimes gives me a bit of pain. I felt tired for about 12 months -  however I was very very ill. 

So whilst I wouldn't be too worried  please keep an eye on it

SazRah profile image
SazRah

Hi! I've had pyelonephritis twice so I can def sympathise with you, it's awful! I don't think you're being paranoid, it sounds to me like maybe the infection hadn't completely gone when your antibiotics finished. I would make an appt with your GP and take a sample with you, and ask for it to be sent off so you can get some targeted antibiotics. (I think this was mentioned in a previous reply!). It could just be that you are healing though, but it is better to be safe than sorry with these things.

When I had my first bout of pyelonephritis I was given trimethoprim and it worked, this was well over 15 years ago, but it is now considered an out of date antibiotic as bacteria mutate over time and become resistant, which is why we have such a problem with resistant infections now! You may also need a blood test to check your kidney function, if it hasn't been done, as you may have a bit of damage there...I wouldn't panic, lots of people have a bit of damage and not notice anything on a day to day basis, it's just something you need to be aware of to respond quickly at the first sign of an infection in future! I do remember having some pain without an infection once, and my GP, who was an older man, said that in the past they would call it renal colic...but I can't remember if they did anything or gave me anything other than painkillers, but you're prob on those anyway!

I had a spell of recurrent infections after my pyelonephritis and was sent for an IVU test. It's done in the X-ray dept, you drink some vile aniseed flavour water(!) then they X-ray your kidneys and can see your waterworks in action, you then go to the toilet, then come back in for another X-ray which shows your urethra. I was found to have a double ureter (the tube from the kidney to the bladder). Because my tubes join before the bladder, I have bacteria living in the join area, so am more likely to have an infection ascend from the bladder to the kidney itself (pyelonephritis) as opposed to a reg bladder infection...a UTI is normally the bladder to urethra that is infected. It might be worth having this test just to rule out a structural problem. 

Another thing I would recommend is giving yourself a two to three week course of Actimel or Yakult after any antibiotics. I was until fairly recently a research scientist  and have researched the importance of our good bacteria in our gut to help us fight infections for ourselves. We couldn't live without our gut bacteria, they are actually responsible for making enzymes that help us break down medicines/other chemicals we ingest, and for a lot of other processes too. Unfortunately when we take antibiotics it isn't just the bad bacteria that are killed, we disturb our natural balance of good bacteria too, and this can actually affect our ability to fight infection or even use the antibiotics we are taking properly! I wouldn't recommend continuing to take the Actimel or Yakult permanently though, only when you've had an illness or antibiotics, as despite what the adverts tell you, it isn't necessary and in some cases can lead to undesirable effects on your body! 

I hope you feel better soon, sorry I've written an essay! Take care xxx

Cymraes84 profile image
Cymraes84

Thank you all for taking the time to reply, I really do appreciate it! 

I had a plethora of blood and urine tests while I was in hospital, but I think these were more focused on infection markers etc as opposed to kidney function so I might ask for a blood test to check on this in the coming weeks if I don't feel better. My urine samples indicated that I'm sensitive to Trimethoprim so was given a 7 day course to take at home. I was also given oral Ciprofloxacin and then switched to Gentamicin while I was an inpatient in addition to Tazocin IV several times a day/night right up until I was discharged. I also had a chest and abdominal x-ray, kidney and bladder ultrasound to check for stones/scarring which was clear, and an ECG (during one of several rigors so Lord knows what the results were like) as I had fever related tachycardia. Super grateful to have the NHS at my disposal - it may not be perfect but it's there for you when you need it.

My GP's are generally very good to be fair and I've seen the results of my initial urine sample (which resembled bog water!) with my own eyes so they definitely sent it off to the lab. My GP said the only antibiotic I'm resistant to according to the results is Amoxicillin, so the initial antibiotic that the nurse practitioner prescribed (Nitrofurantoin) would theoretically have worked, but my infection became too nasty for oral antibiotics. I'm not one for pro-biotics etc, but will get some Actimel in for a couple of weeks to see if helps restore the balance - thanks for the tip.  I've taken more antibiotics this year between this and my recent surgery than I have in the past decade so wouldn't be surprised if everything is a bit skewiff.

It's the frequent urination and loin/flank pain that concerns me the most at present as I'm struggling to decide whether it's just normal to experience some discomfort after treatment, or whether the treatment hasn't quite cleared the infection or something. It's obviously not as bad as it was, but it's niggling away quite notably so I'll keep an eye on it and make an appointment to see one of the GP's if it doesn't relent or worsens over the next week or so. I'm taking Paracetamol and Tramadol as required (I need a small amount each day anyway as I'm trying to taper off the stuff) which helps, I also have Naproxen which really does help with my post-op back pain but I'm reluctant to take it as I've read that NSAID's aren't the best best of drugs to be taking if your kidneys are somewhat compromised. I've been getting plenty of rest and drinking enough water, avoiding coffee, alcohol or anything that might irritate my kidneys or cause dehydration.

I'm sure I'll be fine and am just worrying over nothing, but would prefer to err on the side of caution on this occasion given how evil kidney infections are! 

Thank you all again, and I hope you're enjoying the bank holiday :)

EOLHPC profile image
EOLHPC in reply toCymraes84

Good reply

You're clearly an experienced patient

In my experience, if I were having the symptoms you tell us you're experiencing now, I'd take a MSU for lab analysis to my local hospital E&A tomorrow, or (if you just are willing to delay) on Tuesday morning, with a view to starting a 2 week course of co amoxicillin 625mg immediately, only altering that antibiotic if you're profile or the lab results indicate an alternative is more suitable

You are not worrying over nothing.  You've experienced the sort of organ threatening infection that any good healthcare professional would take very seriously. 

Take care

Katiedoodle profile image
Katiedoodle

I have compromised kidney function due to the blockage, NSAIDs should be ok short term, I suffer from severe neuralgia and take indomethacin when it flares up. They prescribed me ibuprofen too whilst I was in hospital. So whilst not ideal shouldn't be a big issue - but as always check with your GP. 

Did they X-ray your kidneys? My stones didn't show on an ultrasound only on the ct scan and a later X-ray. 

Cymraes84 profile image
Cymraes84

Yeah I'm pretty sure they took an x-ray of my kidneys, though it was 6am and I felt like death so didn't really ask too many questions, but the radiographer took two x-rays of my abdomen and another one of my back so I assumed my kidneys would have shown up. I didn't have a CT scan but my ultrasound was apparently clear of any abnormalities.

I've been taking Naproxen alongside Tramadol pretty much daily for over two years due to problems with my back, however after my recent surgery I'm finding I can manage with less and less so am trying to do without the Naproxen when I can. I have Omeprazole to take alongside it to protect my stomach and none of the hospital Doctors nor my GP have suggested ceasing its use so I guess I should be OK.

Despite being concerned I don't feel rotten enough at present to seek medical advice over the bank holiday to be honest, but will keep tabs on the pain, nausea etc and get in touch with my GP if I don't improve or worsen. It's never a problem to get an appointment with a GP or nurse at my local surgery, even for fairly menial complaints so I'm not concerned about having to wait around for ages. And it's a friendly rural practice so you always see a familiar face. 

I don't have a high temperature, rapid heart rate, vomiting or any of the other lovely symptoms I had when I was bad, but this pain - though mild enough in comparison with how it was - doesn't feel right so I'll definitely get it checked out if it continues. Hopefully it will subside as I'm due to commence an (already delayed thanks to kidneygate) phased return to work on Tuesday after 11 weeks off to recover from surgery and am super keen to get back into the swing of things. But, health comes first so will not ignore any worrying signs.

Thanks again guys

Paper_Butterfly profile image
Paper_Butterfly

Hi all

Have you heard of D - MANNOSE? My Urologist suggested it as I have severe UTI's and Pylonethritis. It comes in capsule and powder form. I prefer the caps.

D - MANNOSE - How does it work?

D-mannose might treat the deficiency caused by a genetic defect that causes abnormal breakdown and production of mannose. D-mannose might prevent certain kinds of bacteria from sticking to the walls of the urinary tract and causing infection.

Hope this helps!

Sweet - cures website talks about e.coli etc

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