Neo bladder

Hi KimDav. Sounds as though your husband has had a tough time of it. Sorry I can't offer any advice, but just hoping all goes well. Best wishes.

Have replied to your other post, but just adding a few things here. I came home with tubes & 3 bags still in place. Two removed about a week later when scans showed no leaks. Remaining bag for stents to be left until 6 weeks post op. However as stents kept leaking, eventually I taped them up & removed the bag (with approval from specialist nurse). This wasn't regarded as a complication & allw as well in the end. Didn't really hamper recover, except skin started healing round the stitches holding the stents & this got quite painful. 

OK did you have neo bladder? My husband has stomah as one if the urethra from the kidneys was sticky? This was a surprise,  he has other bsgs, down his legs from the drainage we have been told if the red stent falls out its very dangerous,  we have emergency numbers etc. Also high dependency nurses call us every other day. 

I am a complete technophobe so everything I post seems to get lost. Each time I have to get verification codes etc. So I never saw your 1st reply xx

Thankyou xxx

Thankyou  

Yes, I had neobladder. Sounds like he has a stoma bag, for stents, but not an actual stoma. Goos to hear you have support from the hosp. I had District nurse come to visit to check wounds. Does you husband have to flush any of the tubes? I came home with a kit of disposable syringes etc. With neo, there is a lot of follow up, which is good as that will quickly pick up any issues. Hope recovery goes well.

Yes he has to flush twice a day, it is a stomah bag as one of his kidney urethra is sticky so the urine is going into that at mo, but like yourself it will be put in & then he will self catheterise until his body can get used to new bladder, he is having a lot of stomach aches & feels like he wants to open his bowels, he was constipated for few days but we remedied that. Yesterday I honestly thought he had turned a corner however today?? Not so good, extreme exhaustion.  Did you have this ? 

Yes just bag with 2 stents in they have given us emergency number if red one becomes unattached,  hope this makes sense ? 

Thanks rily, I hope you arevon the road to recovery  

Very early days yet to talk about turning a corner. There will be ups & downs along the way. It’s also easy to overdo things & pay the price afterwards. Good to try doing a little more each day, but stop before getting too tired - schedule lots of rest in between any activity. Bowels can be very erratic, don’t be surprised if there are episodes of urgency & looseness. Energy will gradually pick up, but for full recovery, one month for every hour in surgery is a good guide. Took me about 8 months before back to all usual activities without end of the day fatigue. You need plenty of patience!