I have had a Neobladder made and have been home for 12 days. I’m doing okay. So this is how it all went:
Day before surgery
I was admitted at 5pm on Sunday 12th September. I was not allowed to eat from then on, I could only drink water. I had two enemas, one the night before, and one at 6am on the day of the op. They weren’t as bad as you think. It was a little uncomfortable but not painful. I had to hold it in as long as I could, and then go to the loo. And it does make you go. A lot. The anaesthetist came to see me in the evening to explain what would happen the next day. I was going to have an epidural as well as the anaesthetic so I would feel no pain. I would keep the epidural for two days after surgery.
Day of surgery
I was sent down to pre-op at 9.30am. The nurses there recognised me from last year, so I had a bit of a giggle with them and teasing the porters. I went into the anaesthetists’ room, and recognised a nurse that helped me last November when a procedure went wrong – so was chatting to her as they got on with things. I had a Cannula fitted in my left arm. I then had to sit up side on to the bed. I had a stool to put my legs on, and had to lean forward, arms folded on my knees with my head resting on my arms. They felt for the right place in my spine, and put a local anaesthetic in first to numb the area, and then put the catheter tube for the epidural into my spine. There was no pain; I could just feel the tube being pushed in. By this time it was 10am. I was then lay back down and given something to make me woozy, and then the anaesthetic was given, and I was asleep.
I remember being quite grumpy at being woken up (as my fiancée joked with the nurse later, there was no change there!), all I wanted to do more than anything was to go to sleep, but I was being poked at and talked too. I was then taken to the intensive care unit, as the high dependency surgical unit had no beds. I was in no pain; I couldn’t feel anything below my chest. My fiancée came in once I’d come round and stayed for a few hours. Then my consultant came in at 8pm to tell me that my urethra and trigone were "pristine", so he saw no need to remove them, and had made a Neobladder.
After my other half left, the nurses came to move me on the bed to prevent bed sores. When they asked me to shift over, I realised I couldn’t move at all. The epidural had paralysed me from the waist down! The downside of this was that they had to stop the epidural, because they needed to know if it was just that, or whether there was bleeding in my spine which is quite dangerous. It turned out it was just the epidural, but as that was my only pain relief, and they’d taken it away, I felt far, far much more then I ever wanted to. My memory of that night is fuzzy now, I think my brain has blocked it out. It was the longest night of my life. Once I could wiggle my toes, the epidural was started again, but not as high so I could still feel the pain in the operation site, but not my legs, which was not useful. It was fully topped up again by the next morning, when I told someone that I’d like to drag myself off the floor of the building. I remember whoever it was (I think it was the consultant, but I’m a bit fuzzy on the details) being quite condescending when I told them I was in pain. The answer being, “of course you’re in pain, you’ve just had surgery”, until I said my epidural had been stopped. It got turned back on promptly after that.
NB. Don’t let my episode with the epidural put you off having this op, as I say, it is really rare for an epidural to paralyse you – I just get all the luck. It wasn’t pleasant, but I’d do it again if I had too.
After surgery
I was in ICU for 2 days. I wasn’t allowed food or water, but could suck on a water soaked sponge when my mouth got dry. I had to be shifted every 4 hours to stop bed sores and was constantly monitored. The staff there was brilliant. You have to have a sense of humour to be a nurse, and this lot had oodles. I got along with one nurse in particular; she was really sweet and went out of her way to make me comfortable. I slept for 2 hours in 48. There was far too much beeping and monitoring going on to get any rest. I had a central line in my neck with three needles, a cannula in my arm, an oxygen tube round my nose, a stomach drain on my right side, a superpubic catheter on my left side and a urethral catheter. These were draining blood and urine for 3 days. I had stents from my kidneys into the new bladder. I had regular bladder flushes with saline through both catheters as the piece of bowel the doctors used to make the Neobladder will continue to make mucus. It’s important that it is cleared do the catheters do not block.
I was then moved to Surgical HDU for a day and a half. I managed to sit up in my chair for when my family came to visit. I was given a morphine pump, so I could get enough morphine in my system to cope when the epidural was taken away. Again, I didn’t sleep for several days because I couldn’t push the morphine button when I was asleep so could only sleep 2 hours at a time before the pain woke me. My stomach drain was taken out, I was allowed to drink and I had my first meal that day – Shepherds Pie. I also had my first coffee in over 6 years!
On day four I was moved to the ward. I was doing quite well. I was walking around with my morphine pump, so much so that the Sister put leg bags on me instead of the big ones attached to the bed, as she was getting panicky that I would pull something out. I think this was the day I had my first bowel movement. It was loose, and smelt toxic! It was quite gross, but a good sign that things were working again. The second and third ones were very painful, I think I’d overdone it with the eating! I remember thinking; “if this is what labour feels like, I’m never having children!”
All was well until day 7 when I got a bladder infection and had a high fever. One minute, a medical student was taking my temperature, the next minute I had 8 doctors round my bed. I later found out that I'd contracted E. Coli. My temp went up to 39.5 (Normal is 36.1 to 37). I was extremely weak, I couldn’t move. That was the only time I felt really frightened – like I might be in serious trouble. I was given two IV antibiotics and a fluids drip. I had to have a chest X-ray, which was difficult as I had to stand and I was so weak. I then had a CT scan, which was a scary experience. Normally I would have been curious, but I felt weak and upset. The noise that thing makes is unnerving. It’s like a power plant starting up!
All scans were clear though, no chest infection and no leaks from the new bladder. I was nearly back to my old self after 2 days. The nurses said they were shocked how quickly I went down, and surprised at how quickly I bounced back. I was kept in for another 4 days. I had some problems with both catheters blocking, which was painful, and one of the doctors had to sort out. They taught me how to do it myself, and then I was sent home on the Friday, 12 days after the op, with a bag full of catheter bags, valves, syringes and saline.
At Home
I’ve been home for 12 days and I’ve been getting on okay. I’ve been catching up on a lot of sleep. I didn’t realise how tired I was until I got home. I’m still uncomfortable and in some pain, but it’s not unmanageable. I’m on the same painkillers as I was before I went in. The district nurse came to visit, and a big box of supplies arrived that the hospital had ordered for me. The catheters have blocked several times, but I can sort that out myself. I developed an infection 2 days ago. My GP was coming out to see me anyway, and prescribed some antibiotics which seem to be working. I’m not as ill as I was in hospital when I had E. Coli in my system. I’ve asked my consultant if the district nurse can take the urethral catheter out, as I always get infections with them. Especially as I’m detaching it every 4 hours to flush it. He agreed. I’ve ordered some single use catheters as a backup in case my Superpubic gets blocked. I don’t want to end up flushing saline through a full bladder and risk bursting something.
I can have showers but not baths. I did keep a dressing around the Superpubic site, but I’ve stopped that now to get some air to it. I do have to keep it clean with saline though.
So that’s it. I’m moving about okay, I’ve started to do some light housework, and some cooking. I do get a lot of pain and have blood come out into the bag if I move around too much, so I just do a little bit every day. It’s important to keep active. I have a follow up appointment in a few weeks.
Sicknote.
