GregJ’s Journey - To Infinity And Beyond!

Greg, I have a permanent suprapubic catheter and find I drain better when I am laying down. Keep up the water intake,in this hot weather urine output can go down. You probably don't need telling this but make sure the leg bag is below the bladder and the night bag is below the leg bag. Make sure there are no kinks and ideally the night bag should be supported on a stand.

Thanks Chris 

Greg, you don't need to be thinking of long term catheters just yet , in a few weeks things will have settled down and your will be back to your new normal. 

Catheter bags have changed since I started this journey over nine years ago, back then the bags didn't have an anti back flow arrangement. If the catheter blocked up you could lift the bag above the height of the bladder and urine would help move a blockage, probably not a good idea but it worked for me.

The permanent SPC does affect my QOL but it's amazing how we humans can adapt to a new normal. I much preferred carrying my urine inside my body rather than in a bag on my leg. Your comment got my brain whirring, I do miss just getting up and having a good long pee. One advantage of ED is not having to try and aim that upright morning glory down into the toilet bowl. 😃. 

I like to know facts and data, I like to know where I am heading , even if it isn't a good place to go.

Hopefully the catheter removal we be straight forward but ,be prepared for the possibility it might have to be in a bit longer. If it does stop in a bit longer you won't be getting up in the night to go for a pee. 

My overnight urine production varies from 300 to 1500 mls the lower the volume the darker it is. 

Thanks Chris 

For goodness sake! 
I don’t think I can handle anymore of this. 

More blood down the tube tonight and the bag is very very slow to drain. 

Shall I just wait to see what happens? 

I can see me sitting in A&E for another 6 hours tonight. 
Never pigging ending. 🥹🥲

Thanks Derek

Tuesday just cannot come soon enough. 
I really want to be back in the operating hospital to speak to surgeon and his team and try get things sorted once and for all. 

It’s do difficult being 2 hours away when they won’t really allow my local hospital to do anything major to sort my issues. 
I feel really helpless at the moment. 

Seeing the blood and the clots still coming down the tube, 10 days after the surgery is just so worrying. I dread to think what’s going on in the bladder!

I hate wishing my life away but roll on Tuesday

Thank you very much for everyone’s support 

Take care

Greg. 

Thank you Peter

They removed my blood drain on the second day too, after it had been emptied twice since the op. It was still bleeding but they didn’t seem concerned, despite me showing the bruising on the second day.

I know the bruising is just superficial but it would have been an indicator as to how heavily I was bleeding internally! I wish it was checked sooner. 

When I say bruising I mean seriously major bruising, not just the kind you get at an injection site. The main one is on my RH side and is about 1 foot in length and around 10 inches high. It wraps right around my side. Another is on the LH side and is about 6 inches by 3 inches. More on my front around the camera hole near belly button around 4 inches by 2 inches. 

They all went completely black by the third day. When I was readmitted for the blood transfusion the nurses were coming in the room and asking to see the bruises as they hadn’t seen anything like it before. I should have been charging per view 😁

I am not on the anticoagulant injections. They were stopped by day 4 as it was thought that they were worsening or even causing the internal bleeding. 

I am moving as much as I can, to prevent any DVT or clotting. The first few days movement was extremely difficult and painful, I have to say it has improved now though I’m still completely exhausted and have quite a lot of pain in my abdominal region. I’m told this will continue for weeks until the hematoma has been absorbed by my body. 

I bought an Apple Watch to monitor my heart as since the bleed and the anemia my heart jumps 30 BPM just standing up. I’m also using it to track my steps and I did 3100 slow and gentle steps yesterday, just around the house and my small garden for some fresh air. I’ve no idea if this is enough steps or too many steps but it feels about the right balance of movement given my seriously low energy levels since the op. 

I’m hoping to be able to discuss all of this with the hospital on Tuesday when I go to hopefully have the bag removed. 

I did wonder if I was drinking too much. I’m drinking around 3 litres a day. I told one of the nurses this and she said that’s fine but mix it up with water, tea and fruit juice. I just have 2 cups of tea in the morning then just water the rest of the day. I could honestly murder a pint. 

I just pray that everything start to resolve itself slowly but surely and that these past days are forgotten in 6 months time when I’m striding naked down the beach! 😂

I’m counting the minutes until Tuesday 🤞🤞

Take care

Greg. 

Edited by member 09 Jul 2023 at 07:39  | Reason: Typo

Well, another 6 hours in A&E. Wound cleaned and dressed and to keep an eye on it. 
It wasn’t fresh blood it’s back pressure from the internal bleed weeping through part of the wound that had opened up a little. 

You actually couldn’t make this up. Somebody pinch me to see if I’m dreaming! 🙈