Recurrent UTIs, kidney pain, ?PUJ - do I need pyeloplasty?

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nessie074
Posts: 1
Joined: Wed Aug 19, 2015 11:10 am

Recurrent UTIs, kidney pain, ?PUJ - do I need pyeloplasty?

Post by nessie074 »

Hi there. This is my first post on this forum and I wish I'd found it earlier.

I have been given an option to have surgery. Actually, to be fair, the decision has been passed to me to choose whether to have surgery. Let me explain.

I have a range of urogynae issues going on:

* overactive bladder - did not respond to medication even at highest dose, have now had two cycles of Botox - the last one worked so well it semi-paralysed the bladder so I have been self-catheterising
* stress incontinence - after many years of being very overweight and having had big babies and gynae surgery, I needed surgical intervention and had a TVT sling done three years ago
* gastric bypass - which worked well for weight loss but has left me with some malabsorption issues (which were queried in relation to antibiotic effectiveness) and low B12 levels (now being treated with 3 monthly injections)
* ovarian cysts and pelvic adhesions - these are about to be tackled surgically. The adhesions are thought to be extensive and I have had issues with them previously and also surgeries to relieve them.

For the past two years, I have had a recurrent (almost constant) UTI. After more than a year of cycling through the usual 5 antibiotic meds, I had a PICC line fitted to my arm and received IV antibiotics for a week. The line remained in for 7 weeks whilst the medics tried to decide what to do with me. The antib's worked for a few days and then symptoms returned.

I underwent a CT scan which appeared to show a mild dilatation and possible PUJ obstruction - nothing big though so nobody seemed to jump around until I mentioned a family history of this problem. My grandmother had a kidney 'refashioned' many years ago. My father has an obstruction and kidney scarring. My son was born with a deformed kidney, PUJ obstruction and has had a stone.

I was referred urgently to the Urology team - urgent meaning some weeks away of course - and was eventually seen in clinic there. By this time I had undergone a MAG3 renogram, which showed a slight delay on that side but it was working.

I was then referred to the Infectious Diseases Team and she was the first person who really took any interest in the fact that the antibiotic regimes were not working. I had had over 25 prescriptions for different drugs in the 15 months prior to that appointment. I had it all listed out. The gynae and urology consultants had not even looked at the list. This lady did. I cried with relief. She took a very detailed history, decided to try to coordinate between the different consultant teams to get to a more reasonable outcome. She also put me on Fosfomycin, currently unlicensed in this country but quite effective. Since being on it, the symptoms have been very much kept under control. When I come off it, they return.

Eventually the Urology team decided they would try something and a stent was fitted back in July. Should have been the most simple procedure I've had in years but it turned into a nightmare and after more than 7 hours of the most excrutiating pain I have ever experienced, it had to be removed. I felt a total failure but I know that I have a high pain threshold - it's been tested many times - and this was just an unusually bad reaction. My body seemed quite determined to reject the stent, at whatever cost to me.

It was so disappointing though because we had lost our chance to prove that the PUJ obstruction was real. The Senior Reg has told me that in a small percentage of the population, radiology results will not show anything conclusive but actually the patient does benefit from having surgical intervention. He says I may be one of them. It wouldn't surprise me. If there's a small chance of anything, that's usually me! The only possible positive thing that did come out of it was that they noticed 'turbid urine' being excreted from the right kidney, something which shouldn't have been there given the megadose antibiotics I am and have been taking for some time. This suggests a very determined infection is lurking in there somewhere.

So a follow-up appointment was made with the Consultant. He was unconvinced. Said I might 'grow out' of the infections. Uh?!? I am 44 years old. He said that in many ladies, oestrogen pessaries can be helpful. I researched this. If you are mid or post menopausal, then yes they can. I am neither. The gynae consultant has told me not to take them!

I underwent a repeat renogram two weeks ago. This showed again that there is a 'reservoir' of urine in the centre of the kidney which does eventually clear. It is slower but it does empty eventually. The pain I get when they give the diuretic is horrible, which suggests that the kidney isn't happy when it's forced to work harder.

The Consultant has now written to me. He has suggested that I need to make the decision regarding surgery. This is huge! He says they do not have conclusive proof that there is a substantial blockage on that side. He also admits there are some other symptoms which fly in the face of what they're seeing on the radiology tests. He describes the presence of pain during the renogram as being a 'soft' evidence. I am in pain all the time - to varying degrees - and the infection doesn't appear to really be going away, it is simply being held at bay by the current antibiotic regime. They are concerned at the possibility of my increasing resistence to antibiotic medicines. So am I. I am also concerned about the effect all of this is having on my general wellbeing and my life - both at home and at work.

So what do I do? Do I say 'yes' and go forward with a surgery which nobody seems convinced will help me? I am assuming - and have put this in my response to the consultant - that he is not completely convinced it won't help because he wouldn't offer to do it. He must think there may be some merit in pursuing it or he would just refuse point blank. They can't afford to do surgeries that they can't defend, particularly in this day and age.

I am so sorry that this post is so lengthy but there is so much to explain and so much context to give. I would welcome any constructive thoughts or guidance. I have had many surgeries in my life so perhaps do not have that morbid fear of the operating theatre that others may have. Equally I want to be sure that I am doing this with the possibility of a good outcome. I just want to be well again. It has been so long and drawn out. This might be the only option I have left on this.

Help!
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Recurrent UTIs, kidney pain, ?PUJ - do I need pyeloplast

Post by wagolynn »

Hi nessie074,
That is some story, whew.... No wonder you are fed up.

I am not a medic, just a kidney patient. Reading your post, I think the operation is really the option most likely to make some progress. I am thinking, if they have a look they may well find out what is actually going on.

You certainly need to get off the antibiotics, you probable haven't a 'good' bacteria left anywhere.

Best wishes.
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