Neobladder

Hi Anna Seaside,Welcome to this friendly group.I’m sorry to hear you got c.diff in hospital.I’m sure the people with neo bladders will be along to help shortly.I think if you are spiking temperatures and in pain you need some medical advice.I would be concerned about infection somewhere.I hope you feel better soon.Best wishes Jane 

Hi Anna Seaside
I am male so obviously different mechanics at play, but I had my NeoBladder in June 2020.
I too had a leak and unfortunately was readmitted to hospital but not for surgery. 
My issue was that I was not cleaning/flushing the Neo correctly and mucus stored until it needed to find a way out and loosened stitches, and urine went into my drain bag rather than catheter bag.

Once I was flushed by the nurses and a new 4 hour flush regime put in place the Neo healed itself. I was in hospital for 6 days as my white blood cells were impacted and I spent hours each day on IV drugs.

At the time I was a bit down but 2.5 years later Neo is working extremely well.

Hopefully your setback will be a temporary thing too. Try to remain positive.

cheers
Chasam

Hi Chasam

Thanks for your reply. I only have my catheter bag insitu, but do still produce an awful lot of mucus. I sometimes have to aspirate. I'm at the hospital tomorrow so hopefully, like you it will just be something straightforward but without a hospital stay. 

Warmest regards 

Anna

Hi, I'm female & had my neo 11 years ago. The remedy for leaks probably depends where they are. Because my scan showed leaks, I had the stents left in for 6 weeks. I was still able to have neo activated & start training. There are some benefits to delaying training, that you are  a bit further along in recovery. Some females get a fistula between neo & vagina, which they often leave to see if it heals spontaneously, but might need surgery. 

Mucus continues indefinitely but will reduce, although some foods can trigger an increase in production.

All sounds a bit miserable for you so far, not a good start, but hopefully all will be well soon & you can get on with recovery. Best wishes.

Hi Anna Seaside,How did your hospital appointment go ? I hope they were able to help.Love Jane 

Pure orange juice, can help to cut through mucus xxx best of luck x

I'm so sorry to see this.  My husband had radical cystectomy with neo bladder on 4th October last year initially he had to self catheterise every 4 hours. In daytime.  At night he had to set alarm for every 2 hours to empty bladder. Over a year later. New bladder is working well & according to urologist it is pink & healthy. He has to sit down to urinate & press slightly, to make sure he clears any residue. Overall very good, with new bladder unfortunately dealing with lymph nodes. After watching & trying to help him. I have no idea, how a woman copes because anatomically we are so different. So OMG.!!! Anna seaside! I hope in.the info, I have given you, something maybe good.  Although I doubt it. So I just wish you well,  as I think , from a female perspective.  You are amazing xxx

Hi Anna I know different mechanics for a woman  but if this was my husband with spiking temperature etc. I would get in touch with urology.  Just to be on safe side. Xxx