Urine culture is back!! I need some help or advice

Hi Amy,

I really feel for you for what you are going through. I have had this infection and this one happens a lot when in hospital my consultant told me. There are antibiotics that will get rid of this, but only specific ones. Keep flushing through as much as possible. They should be keeping an eye on your kidneys as it sounds like it could be getting into them by the symptoms you describe. That’s when things do become serious. Demand to see a urologist and get some answers. Don’t presume they know that things have worsened for you. Make sure that you tell them. I really hope that you feel better soon. There is always the marvellous charity called Bladder UK. You can call them and get some really good advice too. 

Take care of yourself and update us all. 

Sam 😁

Hi Amy, I agree with Sam. I have no idea why they won't check your kidneys (at least they should take the time to explain why!)

Pseudomonas is a serious bug and I'm guessing it's not a coincidence that you've got it since (or during?) surgery - and MSRA too!  It's very dangerous if you have a weakened immune system (i.e. from HIV or something) but you should be able get rid of it OK.

I don't know what antibiotics they've given you so far but they will need to be strong - it's possible that the ABs for the MRSA allowed the pseudo bug to get a grip.  My husband  is permanently catheterised which means he's liable to get all sorts of bugs and he has had a pseudomonas infection in the past which cleared up quite quickly.

They may decide to give you an antibiotic called Ciprofloxacin (or Levofloxacin).  These are from a broad spectrum class of serious ABs called the fluoroquinolones.  They will kill just about anything but unfortunately they can give you a lot of serious side effects which may turn out to be permanent.  Most doctors don't realise just how bad these side effects can be but there is a big review going on about them in Europe at the moment (in the EMA).  If you switch to this discussion here:

  https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

you'll get the idea - and can show it to your doctors.  Many people affected by Cipro say they wish they'd been warned of the dangers beforehand.  I'm warning you.  You could also do a quick search for 'problems with Cipro' to see it's a global problem.

Pseudomonas is a gram negative bug so there's no need to hit it with a broad-spectrum AB such as Cipro. Using a targeted AB will be more effective.  Broad spectrum ABs are used mainly when doctors don't actually know what is causing the problem but in your case they do know. 

It's very possible they've already given you Cipro to treat the MRSA - that's another good reason not to take any more.  You may have not experienced any side effects already but Cipro effects tend to be cumulative rather than immediate (my husband was ok after his first course and in agony with his second!).

I'm sorry if this is frightening for you as I know you're already very scared at what is happening to you.  Pseudomonas is a serious infection and you do need serious antibiotics to treat it but my advice is to ask them for a targeted AB and not a potentially dangerous all-purpose one.

So sorry that you're suffering like this!  First of all, I would suggest that you have that mirena coil removed, because it is a foreign body. If you haven't already, read what the possible side effects are of having the mirena coil.  I think that docs in the UK typically try using it for endometriosis--very popular. And they don't often inform the patient of what harm it can do. But in my opinion the risks are too great.

Your urinary tract, reproductive system and gut, and the bacteria that occupy them are all connected.  Some doctors act as if they are discrete systems, but they're not. And so called "bad" bacteria exist in all of them, along side the "good" bacteria.  The point is that the good bacteria need to be more prevalent than the bad to keep your system in balance.  Start taking a women's probiotic.    

Then, get yourself to a urologist to get properly diagnosed and treated as soon as you can.  The docs who had a part in infecting you are telling you what they won't do to keep you healthy, i.e., check your kidneys.  My thought is that they are reluctant to find out what other harm they've done. There may be "mild" forms of MRSA, but they don't seem too concerned with your health.

I am so sorry that this is happening to you! Please take control of your health and find a doctor or doctors who take their roles seriously. xx  

The n you all for your responses. I am on 500mg ciprofloxacine and last night my hearing went in one ear. Seems okay now. I keep getting pains in one arm like shooting pains and my back pain is just getting worse and I know it's not nerve pain because I already take gabapentin. I'm at my GP today so she will moan that I went the hospital only 5 hours after seeing her but she knew I was sick. Im seeing my gynae consultant on Monday so I hope they agree to remove it otherwise I'll be going s family planning clinic to have it taken out. They just don't take me seriously because I 'look okay' I also have an auto immune disease and I am B12 dificient too. Hope it eases off soon for me. Thank you all for your replies x 

I wasn't familiar with Pseudomonas Aeruginosa UTI, so I researched it a bit.   The floroquinolones (Cipro, etc.) are the only oral antibiotic that works for it.  The recommended antiibotics are all IV or IM.   Why a hospital surgeon never heards of this bacteria in the urine boggles my mind.  

Amy could have various things causing her symptoms.  I don't like Cipro either and I am certainly aware of all the websites and warnings about it.   I would rather take the risk of taking Cipro than deal with what can happen if Pseudomonas A. gets in the bloodstream.

 

Okay, I just read about it.  It says it can be deadly for patients in critical care.  You’re not in critical care, correct?  It’s a widespread bacteria that lingers in hospitals. That’s probably where you got it. Good news is it can be treated with antibiotics!!! Thank God, and I’ll pray for a good outcome for you.  These infections can be scary and very stressful I have one right now and it’s very upsetting so I know how you feel, but  obviously you’re going through  than me though, and I will pray for you

Well my GP completely ignore me went off on one because I'm on cipro and not what she prescribed which was trimethoprim. Told her trimethoprim never works for me and doesn't kill any infections I've had in the past. I asked her to repeat the urine culture maybe a week after I finish these antibiotics and she was a bit blahhh about repeating it. She said it's something I have to speak to my gynae surgeon about on Monday at my post op review. The general surgeons words were 'what the hell is that' when reviewing all my results in the past. This was left a week untreated whilst waiting for the sample to come back from the lab so I've probably had it in my symptom for a few weeks but she's adement it's got nothing to do with the Mirena coil. I told her that I still wasn't well and she just said well you look fine just s little clammy and asked why did I go to the hospital after seeing her on Monday and I explained 3 times I had fainted and she was just like erm oh!! She doesn't take me seriously. So I have to wait until Monday to be seen by gynae and on top of it I've got horrible stomach pain from constantly passing blood and discharge and now I'm passing discharge that literally looks black.. sorry for the horrible info. Just got to hope I get through this and not any worse because right now alls I want to do is sleep I'm so cold but then I go so hot too and my bowels and sickness full on hate me right now 😢X