First night at home was dreadful as I had an unrealistic thinking that being in my bed all would be well. It wasn’t. Just as bad as hospital. Maybe should have stayed another night.
Even though I do now have a Neobladder, that will take time to become anything like a normal bladder and needs care and attention especially in the first few weeks.
The Neobladder, being made of bowel, produces mucus and is important to be flushed out 3 or 4 times a day to start and also to have sodium bicarbonate regularly injected for longer.
Flushing was completed in hospital, but not so for sodium bicarbonate so it’s my job from now on.
I actually left hospital with not 1 ileostomy bag , but 2.
The first is connected to a catheter and I need to inject sodium bicarbonate via a syringe into the catheter. It is painless and easy, after the first time of course.
Two nurses came to show me the steps, and I did take a couple of photos along the way and thought that’s not so bad.
But of course they are experts, and do it pretty swiftly and when I had a go it was slow and with me asking plenty of questions.
Get home and I didn’t even do the basics like having all the items to hand (or even in the house). Hopeless and long procedure but now getting mastered. Have to do that 4 times a day, probably for a few weeks.
The second bag is connected to a stent extracting fluid from the area of lymph nodes they removed. Nothing for me to do here.
Then you need to learn how to empty, attach and manage the 2 bags, including attaching bigger night time bags. This time it’s the lymph “stoma” bag that has hassles as it needs to stick to skin and if it isn’t perfect it leaks..
Also have the skill of injecting myself with anti blood clot. It looks a lot worse than it is, and like the bladder clean it is painless.
Both bags will go as will the need for anti blood clot injections, so only temporary skills being learned
My top tip – make sure you bring everything home with you.
I had so many bags of equipment I didn’t bring back the sodium bicarbonate so wife made another trip to Charing Cross.
Nothing now but the balancing act of resting and yet still progressing physically until Thursday when I’m back to see surgeon for CT scan to see how well Neo is healing and checking for leaks. Also hoping for 1 bag to go.
