After Radical cystectomy - then what?

Hi Boot neck Welcome to the group and all the best to you. Not had RC myself so not much help. It has been a bit quiet here over the holiday period, but I am sure someone will be along to help once things get back to normal. Best wishes.

Hi Boot neck,Welcome to this friendly group.Sorry that you have ended up with cystitis from your treatment.I had a cystectomy 4 years ago and have an Ileal conduit.I have suffered from a handful of leaks and apart from one ( freak accident) all were at the start of having a stoma.At night the bag plugs into a much larger night bag with a long tube that enables you to turn over in bed.Personally after 34 years of chronic cystitis and then cancer it has been brilliant to be able to sleep through the night without constant loo trips.I have been lucky and found it easy to adjust to living with a stoma.It has saved my life and freed me from constant pain.Neo bladder can work well too but it requires training.I’m sure the neo bladder users will be along to advise.There are several of us here who manage to lead full lives without a bladder.Best wishes Jane 

Feel free to ask any questions.A waterproof mattress cover will help should you have any leaks at night.I have only had one in 4 yrs and that was my own fault.The stoma nurses will advise and there are various products you can get to help prevent leaks.

I’m not sure what you mean by the catheter method. The main alternative to stoma is the neobladder, an internal pouch connected to the urethra. The technique to void is a bit different and takes time to learn. Some people (like me) need to use a catheter to fully empty, but that is intermittent self catheterisation, with a new catheter each time. With neo, you have to expect initial incontinence requiring wearing pads, until you have stretched neo to a good size and gained control. This can last months. Nights are more difficult to manage continence, but men can use a condom catheter for this. 
I think we are all horrified at the thought of embarrassing accidents, but generally once you have been through RC you find you can cope OK. Best wishes.

Solrry for delay in responding.....caught up in the festivities !!! so firstly - happy new year.   what type of op did you have? do you have stents from kydneys directly to stoma or do you have internal bladder to stoma?   Do you have to use a catheter at all to empty "bladder".  thanks for any comments

If you have a urostomy, you don’t have any stents. It is formed from the small intestine and the urine diverts through the stoma to a bag outside the body. If you have a neobladder (bladder formed internally) you don’t have a stoma. With a stoma (urostomy) you don’t have a bladder of any sort, so you don’t use catheters at all. This is what I have, and what Jane has.

Sarah xx

Hi Sarah,I was just writing more or less what you said when I noticed your post.I did have stents in post op but they were removed after a couple of weeks.Love Jane xx

Hi Jane-sorry, I would normally have left this as the question was directed to you, but replied because the poster asked for any comments.

Yes I had stents post surgery from the stoma into the bag and they were removed 10 days after the op. 

Sarah xx

No apology needed Sarah I think we are all often answering at the same time.Xx

I currently have stents from my kidneys to the bladder (due to damage from the various corterizations)  and I thought I read that you may have stents from kidneys to intestine  - before connection to stent.

I thought that two of the alternatives where - a)directly from kidney to stoma and b)kidney to intestine then to stoma.

Presumably with b) you can excercise some control over when you pee but with a) the kidneys will just constantly drain into stoma/bag?  I am trying to gather info on any of the alternatives - to help me decide which path to go down.