Well I never

User

Posted 05 Mar 2016 at 10:08

Hi Allison what a terrible run around. I can tell you too what it is like as someone on my own to have constant UTIs. I was very ill four years ago with a constant UTI which was never adequately dealt with until I was hospitalised. What I learnt was the importance of tackling it early. I did three things.

So I purchased (off amazon if I remember correctly) the dip sticks used at the GPs. Whenever I suspect a UTI and I now have a good appreciation from colour changes, to cloudiness in the pee to the pain in the penis, it varies, I immediately test. If there are nitrates present I know I have a UTI.

Secondly I start taking the anti biotics immediately. I always have at least two courses of the anti biotic which it was determined four years ago deals with my type of UTI. It then takes about seven or eight days to clear.

Thirdly because I was still getting them frequently (a problem from self catherisation makes it more prevalent) I now take a prophylactic dose every day of the anti biotic. There are differences of view about this amongst the medics but it has worked well for me and lengthened the time between attacks,

I suppose a fourth stage is I contact either urology or my GP to confirm what I have had and if I remember to take some urine in a bottle before I start the anti biotics they can then test it to confirm.

Over time the medics have trusted my judgment on this and though I have not eliminated UTIs I get at them very quickly before they get hold and thus minimise the impact.

I have to take control as I am on my own and cannot risk becoming too ill before action can be taken.

I cannot speak for John but I now kinda know when a UTI is starting. I always carry around the dip sticks and the course of treatment if I am away so treatment starts instantly.

Hope that helps and hope the anti biotic deals with it and John gets relief.

User

Posted 05 Mar 2016 at 11:31

Poor old NHS, born the same year as me and also feeling the years. What a run around you've been given

Sometimes Allison, we have to take charge of our other halves, especially in your case with a husband on the Stoic side.

I think Paul's way of keeping up with it (ie the dip sticks) is very good.

My poor sister had all of this with her husband. Nobody was interested, there was no cohesive care.

The district nurse doubled as the Macmillan but was most inefficient. When she finally called in, after frantic, then angry calls from my sister, they would find that she either hadn't brought the right bits of they were the wrong size.

Because my sister then became (rightly) a little stroppy at the lack of care and foresight, they became even more unhelpful.

I hope you can get something sorted

We can't control the winds - but we can adjust our sails

User

Posted 05 Mar 2016 at 22:26

Thanks guys

I feel like I am moaning a lot but thanks to the fantastic advice and information given here, I am now sure about buying some dip sticks. Several friends have mentioned doing this and this seems like a good step. I have said to John that in future we will say he has a discharge (he did mention this, he was getting pus coming out of the penis, yuck), he has also been primed to say he has pain, which he did but as he always has kidney pain he didn't think to mention it. Forewarned is forearmed, we do have the consultant's private mobile number but don't want to ring him for something like this, it should be easily sorted really. I know (as I'm on the patient group at our practice) that this is a funding issue. The District Nursing team gets funded to look after catheters, not the GP, hence the battle over who does what. The trouble is that there are not enough district nurses to cope and they told me that they only come out to the bed bound. When I offered to take John to the clinic they refused!

Thanks for telling me how it is for a single person Paul, I think that you have a sensible approach to it and you are an intelligent person, so no doubt that helps. Having an SPC we were told to expect potential infections, we are very careful with hygiene and John has barely left the house since the last op (he's finding the leg bags a real struggle and he is constantly itching, which is a sign of kidney damage (according to Mr Google)).

However, he's getting better again and that's a relief. Next time I won't allow this to happen. Kidney and bladder scan on Monday will see what's happening to those areas anyway.

Thanks all

Lots of love

Allison xxx

Edited by member 06 Mar 2016 at 19:26 | Reason: Not specified

User

Posted 06 Mar 2016 at 12:37

Hi Allison,

What a terrible situation for you and John.
UTIs can be painful, very dangerous, long lasting, and finding the right antibiotics which will actually work is so difficult.

Generally, it's only by trial and error that you find the right combination.
For instance, the likes of Amoxycillin are of no use at all.

I have to say, Paul's posting was spot on. Self testing is the answer, along with finding the antibiotics which will help John's particular type of UTI.

You just can't beat being pro-active at all times.

I do hope that you can now get on top of this and prevent such unnecessary suffering in the future,

Warmest wishes,

George

B2PCa

User

Posted 06 Mar 2016 at 22:07

Hi Alison,

So glad to hear that John is improving, I totally emphasise with what it is like battling the powers that be to get things sorted, or maybe that should be the powers that don't. It just makes life so much harder (especially when it is hard enough already).

Moaning certainly not my friend.

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 07 Mar 2016 at 21:28

""(he's finding the leg bags a real struggle and he is constantly itching, which is a sign of kidney damage""

Is the itching related to the leg bags or is that a separate issue.

Thanks Chris

User

Posted 08 Mar 2016 at 20:23

Hi Chris

No, it's on the trunk and legs and side and lower back. He has had a lot of itching in recent years related probably to the cancer. The leg bag has now been ditched and the valve is being used again (yay) also he managed a small pee today (well a dribble but yay all the same), no pain this time (must have been th infection/healing) before. I can see a leg bag being useful if worried about particular situations but as a full time solution, it's not great. Anyway, he had the kidney scan yesterday, it's still swollen and we go on the 16th for a Change of SPC and also to review the kidney issues. We will talk about the constant itching then. Funny isn't it, one blessed annoyance after another but each time I feel things are getting better and probably that's why the itching is taking centre stage.

Cheers

Devonmaid

User

Posted 08 Mar 2016 at 20:45

Thanks for the reply, I was wondering if he had an allergic reaction to the leg bag straps or even the SPC.

Having even a small pee is at least a step in the right direction.

Hope things start to improve soon.

Take care of yourselves.

Thanks Chris

User

Posted 16 Mar 2016 at 23:39

Hi guys

Just an update from our consultant visit tonight. He changed the SPC, confirmed from the biopsy done after the TURP, the initial diagnosis of a Gleason 10, put OH on a low dose of antibiotics for the foreseeable future. He also told him to drop the Vesicare (solifenicin) as he thinks it's responsible for the intense itching and blurred vision. Also he diagnosed water retention in the legs and feet, which we have mentioned loads of times (swollen legs and ankles). He said this is why the night bag usually contains about 2 litres as when you lie down the water travels back to the heart and then put through the kidneys. He said that the left side pain is not the left kidney but is bone pain. The left kidney has improved since the TURP. We will continue with an SPC, but to clamp it off as much as possible and try to pee through the urethra as much as he can. He is only voiding 100mls through that but an improvement all the same.

All in all, a good result so far, slowly but surely things may be turning and maybe, in three months, the SPC can come out, no promises but lots of hope.

Cheers

Devonmaid

User

Posted 17 Mar 2016 at 00:03

Glad to hear things are a bit better with some positive news. Hoping it continues.

Best wishes

Rosy

User

Posted 17 Mar 2016 at 01:14

I really hope that this is the start of a better phase xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 Mar 2016 at 06:45

Fingers crossed a corner is being turned

Bri xx

User

Posted 17 Mar 2016 at 06:59

I hope things continue on a more positive path albeit still distressing.
Chris x

If life gives you lemons , then make lemonade

User

Posted 17 Mar 2016 at 07:21

Good to hear there is some improvement and still having the SPC is a bit of insurance. My volume was pretty low for quite a while after my catheterisation but has slowing got better.

Thanks Chris

User

Posted 17 Mar 2016 at 10:24

Dear Allison,

It's about time John turned the corner, and I think his consultant talked a lot of sense. So good to see your hopes very much restored after so many long, painful months.

Positivity shines through your post, just in time for sunnier, happier days.

Warmest wishes to you both,

Never surrender,

George

Edited by member 17 Mar 2016 at 11:45 | Reason: Not specified

B2PCa

User

Posted 17 Mar 2016 at 10:55

Allison

so very happy to hear that things really are improving, that is quite a Z bend you have been through this last year. Defiance in the face of adversity and the love of a fabulous wife and family seems to be working so far!!

I hope to see you all soon

xxxxxx

User

Posted 17 Mar 2016 at 14:05

Sounds like short steps in the right direction. Hope it continues. Thinking of you!

User

Posted 17 Mar 2016 at 19:57

Hi Allison

So lovely to read your latest post. Hope things continue to improve for you both. Maybe a relaxed trip to the seaside and a few glasses of wine maybe in order. We've been having some beautiful sunny days of late.

Take care

Lesley xx

User

Posted 18 Mar 2016 at 15:30

Hi Alison,

So glad to hear that things are a bit more positive, at least you have got more answers. Time to breath again.

Lots of love

BFN

JulieX

NEVER LAUGH AT A LIVE DRAGON

User

Posted 18 Mar 2016 at 18:54

Glad that life is finally on the "up"

We can't control the winds - but we can adjust our sails

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