Getting ready to go home
Now comes the bit you have to do on your own, with a bit of help from your family and friends. Getting ready to be discharged from hospital can be a bit of a blur. Depending on how long you have been in some of the nastier bits have already been done, I was in for 3 weeks but some of you will be discharged much earlier than that and you may have to go back to get it all finished with. There will be the 2 stents to your kidneys to be withdrawn, this not painful but is a weird sensation as the stent tubes are pulled out, a gentle tug is all it takes but I felt them travelling across my stomach, as I said a weird sensation. The next bit will be the removal of the super-pubic drain, again not a major problem but a bit of holding your breath will get it over with. Next will be the removal of the Frankenstein staples holding your major wound together. Mine were done 3 days before I was due to go home and they stung for about 24hours, you will still be on pain medication so it should be easy to cope with.
The thing that will be left will be the in-dwelling catheter, when you first see it you will get a bit of a fright, it’s about 10mm in diameter and bright blue, this is going to be your “friend” for about 4 weeks as you start to get better. Faffing about with leg bags and tubes will be a bit of an annoyance at first but it will get easier. On the practical side its best to get organised with a few things either before you go in or get someone to organise a few things before you come home. Get a rubber ring to sit on or a blow up cushion, having your “friend” in place is not comfortable particularly if you sit on a hard seat. As far as storing supplies goes I got 2 sets of plastic drawers, one was in the bathroom with bags, syringes, saline etc and the other was in the bedroom with wound dressings, antiseptic, scissors, medication and all the bits that the nursing team needed. As you get better the contents of these drawers will change but at least you will know where everything is. I still have one set of drawers with catheters, syringes, saline and incontinence night pads and bed protectors.
After 4 weeks you will go back in to get a scan to see if there are any leaks and if all is well they will take your “friend” out, due to its size it will sting a bit but the relief of losing it will compensate. You will probably be asked to pass water naturally if you can and it is the best sensation in the world, yes I know I am weird but when it happens you will know what I mean.
Now comes the bit that takes time, you will be tasked with building up the time between going to pass water mainly via catheter for the first little while. You have to do this to expand the neobladder and get it up to the capacity the surgeon had built it for, mine was made take 500ml and it’s a case of expanding it slowly too that size, there is no rushing this bit and you will just have to learn patience. You have to do this through the night as well and we( my ever patient wife and I) found that having an alarm go off every hour,1.5 hours and then 2 hours was very tiring not on me but on her as she was still having to get up for work. I bought a Timex Expedition watch which has multiple vibrating alarms so no sound and that let me be woken up and at the same time left her to sleep.
Eventually you will manage to go naturally; gents please please follow the advice of your nurses and sit down to go. Being a hero and standing up will only lead to problems and you having to strain and do damage. Everyone will be different in terms of how long the recovery takes and how successful it will be, after 4 months I was 100% dry during the day and about 97% at night, I only wear a pad at night and that’s mainly for my own peace of mind. 18 months in I can put my hand on my heart and say we have never had the need to get up in the middle of the night and change the bed due to an “accident”, oh you will have what I call mini accidents but the pad will cope with those, one thing you might want to do is buy underpants 1 size too small so that they hold the pads securely in place.
You will never escape having to do ISC (Intermittent Self Catheterisation) but depending on how well the procedure has worked you may get to cut it down to once a month to flush the mucus and keep everything healthy. No matter how many times you need to do ISC you need to be aware of having everything as clean as possible, no need to go nuts about everything being sterile as long as it’s clean. I have never (touch wood) had an infection yet. I travel a lot with my job so I have a set of everything in a separate bag so I can carry it with me I also have an emergency pack in the back of my car so I never get caught out, that includes spare underpants, trousers and socks, you never know lol. Packing saline can be a problem if you travel but if you need to you can make clean, not sterile, saline flush by adding about 3 teaspoons of salt to a litre bottle of spring water, just make sure it’s a well known brand of water and not some local stuff produced from a tap in someone’s back yard.
Normal day to day will take a bit of getting used to and you may have to adjust what you eat to stop your neobladder producing too much mucus, simple things like avoiding coffee will help also I have to watch my favourite food, curry, this will make you produce huge quantities of mucus, remember your bladder is made out of a section of bowel and it still reacts like bowel at times. A tip I was given by my Stoma team was that if I started to bung up, and you will, I should buy a 4 pack of beer and drink it quick, that will act as a flushing agent and clear things right up. It’s not to be undertaken every night but will sort you out quite quickly. I had to get the Stoma nurse to tell my wife about this as she did not believe me at first.
One last thing for this blog, as you get better you will be limited in what you can left. DO AS YOU ARE TOLD. I will expand on this in the next blog but if you have a limit of 10lb then stick to it, ask for help even from strangers and you should get back to full health as soon as possible.
That’s is for now as this is getting a bit long. Maybe I should turn it into a book.
Take care and keep well.