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User
Posted 05 Feb 2016 at 09:01
Hi Alison

O my goodness, how scary for you!! Glad he's overcome trauma and is back home. Hope all goes a little more smoothly from now on for you both.

Take care

Lesley x

User
Posted 05 Feb 2016 at 09:25

Hi Allison,

here's hoping things settle down and you and John are able to get some rest and peace. Sending love,

 

Fiona.

User
Posted 05 Feb 2016 at 10:08

Morning Alli - how is he today?

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

User
Posted 05 Feb 2016 at 11:28
He's quite tearful today Lyn, he's been through a lot of trauma to his private parts and it's very distressing. He's an incredibly strong man so I know he will feel better soon. I think there's often a down after an operation as you assess what's happened, I think it's that.

Basically every move he makes pulls on the catheter and causes pain, being himself he won't take the painkillers as he had done in the hospital, given by the nurses he felt obliged. He's very constipated too so I'm feeding him Jason Vale's unblocking juices, they usually work.

We both have horrible cold viruses and I'm shattered if I'm honest. I'm trying to do as little as I can get away with today so that I can expend my energy where it's needed.

He's dreading the TWOC, I must admit I am too, poor man.

Thanks for asking.

Allison xxx

User
Posted 05 Feb 2016 at 11:42

Wishing him a speedy relief Alison.

As far as jobs to do are concerned, well they'll still be there for another day. Just do the bits you can see and that will fret you and leave what you can.
Plenty of vitamin C for you perhaps?

We can't control the winds - but we can adjust our sails
User
Posted 05 Feb 2016 at 12:14

I am so sorry - this has been a trying few months for you both. And even time with D will not be much comfort in these next fews days as John will be frightened of cuddles pulling on his catheter. I hope everything settles down soon my friend xxx

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

User
Posted 05 Feb 2016 at 14:03
D

I know we all different and cope with things in our own way. Has he got his leg / thigh straps on correctly ? just moving about did not pull on my catheter. I found the urethral catheter irritating and slight uncomfortable but not painful,same with the SPC, yes if you pull on it at the entry point it does hurt for a short time. On one occasion one of my ward nurses fitted my straps and did not have a clue, fortunately I knew how they should have been fitted. I wore elasticated short type underpants tight enough to keep it all in place but not to tight to cause discomfort. I imagine the trauma in his urethra was worse than mine was, I did pass some clots between the urethra and the catheter that wad painful made worse by a doctor pulling the clot out. I also had urine leaking into the soft tissue of the penis that was painful and made the penis swell.Is he draining from both catheters ? I have never had much trouble with the twoc and I have done five so far, just need to relax and not get anxious. Drink the water the way you are told by the staff. The first urine did sting a little but it soon passed.

Hope it all starts to improve soon.

Thanks Chris

User
Posted 05 Feb 2016 at 16:36

All the best and good luck to him on the 17th.

User
Posted 05 Feb 2016 at 17:12
Thanks Chris

He's got various leg straps and is trying them all to find a solution. The circumcision is what is causing extra pain as he has stitches there and the catheter coming out (it's huge, a size 20) is pulling on the stitches. He's leaking outside of the catheter too. The SPC seems fine, he's not using it at the moment. It'll all settle down I'm sure but I do feel for him, seeing how this has affected him.

Lots of love

Allison

User
Posted 05 Feb 2016 at 17:23

Alison
My heart goes out to both of you. I'm wincing reading this and you are both being so amazingly brave with everything going on. And circumcision too. It's the only thing I remember about being 5 yrs old. Just terrible for John. I so hope you can both stay strong and that things calm substantially.
Chris

If life gives you lemons , then make lemonade

User
Posted 05 Feb 2016 at 18:17

Alison

Ouch and double ouch, your man deserves a gold medal for bravery.  Just in case I have sent you a link to a thigh strap picture , but I was amazed at the some of the images shown. The link shows a picture of how I have always attached my catheter to the thigh strap, but with the strap higher up the thigh. A lot of pictures show the retaining strap (green in the picture) just round the pipe, to me that does not prevent the pipe being pulled down. I would then have the top strap of urine bag above the knee to stop it slipping down and pulling on the catheter.

https://cdn.activeforever.com/media/catalog/product/cache/1/image/9df78eab33525d08d6e5fb8d27136e95/0/0/0054081_dale-foley-catheter-holder.jpeg

Some other odd things, if he is double draining the urine in one bag was often a different colour to the other bag. The way the bags filled at night was also strange some times the SPC would be full and the urethral almost empty, sometimes it was the opposite way round.

Send him my regards.

Thanks Chris

User
Posted 07 Feb 2016 at 21:04
Thanks Chris

That is extremely helpful. The SPC isn't working at the moment for some reason and he gets going with the urethral one using the flip flow but it stops after a few seconds because he gets a spasm. He's using a bag right now so that he can get on with healing. I've asked him to change the SPC valve to check what's going on there.

Thanks so much

Allison

User
Posted 07 Feb 2016 at 22:08
Hi Allison

SIZE 20! O my goodness THAT IS BIG!! On a positive note because it's so big it's less likely to block.

Have a couple of points, you may already know,that may or may not help.

Constipation can cause the catheter to bypass - movicol is a good laxative to ask gp for.

Pain from around circumcision site - ask gp for some instillagel, this is an anaesthetic gel which could help by applying around the area that painful.

Not sure why SPC isn't working, can't help you with that problem.

Hope he starts feeling better soon.

Lesley x

User
Posted 08 Feb 2016 at 10:50
Chris and Lesley

Thanks so much for your advice. We have an oncology appointment today so will discuss with the consultant. I'm not able to go with hubby today as I've got a dreadful cold and cough and can't justify taking germs into a place where immune compromised people are, so will send himself in with a list of questions. Lots of pain today. I feel a bit concerned that no one is looking at it until the 17th to be honest. I'll probably call our nurse and ask for someone to review the wound, if they don't look at it today at oncology.

Thank goodness for this forum and the generous members.

Lots of love

Allison

User
Posted 08 Feb 2016 at 14:48

Hi Allison,

Yes, that seems a long time to wait for a review given everything John has been through. Neil would have benefited from circumcision, not that he would have entertained it but it would a relieved pressure on the glans which he was always having to put cream on caused by the pressure from the foreskin being swollen. At least with John, the glans will have plenty of exposure to the air and be less likely to get soreness and inflammation, eg balanitis, I think is the term. Hope you feel better soon, Sending love,

 

Fiona.

User
Posted 09 Feb 2016 at 22:52
Well oncology was good, all remains under control and no change of treatment needed, which is fantastic news, especially after them telling us that the cancer had spread to the kidney and then fifteen minutes later told us, oh nothing to worry about, it's nephohydrosis!

Both catheters blocked yesterday and guess what? Yep, same again today, we are currently waiting for the night shift district nurse service to come out. I must admit the SPC wasn't any trouble compared to this.

Allison

User
Posted 09 Feb 2016 at 23:16
Alison constantly thinking of you and John , I have just managed to track down the cuddle blanket and it is know winging it's way to you😘.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 Feb 2016 at 23:49

.... and if Julie's blanket fails, I will send you a nice cup of tea & a large valium!

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

User
Posted 10 Feb 2016 at 07:37

Glad you have had some good news. Hang on in there! Hope your cold is better too.

Rosy

User
Posted 10 Feb 2016 at 08:25
Allison

Is he flowing again ?

Hope is sorted.

Thanks chris

 
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