NeuroTalk Support Groups - Anyone here have a simple cystectomy?

Jim's doctors are contemplating yet once again the possibility of removing his bladder due to chronic UTI's. He has a urinary diversion already in place and they were able to save his bladder.

He does not have cancer. He has a neurogenic bladder from ms with cystitis caused by doctors think, a past medication issue which also brought on kidney failure. The diversion was performed because his bladder was so spastic it was refluxing back into his kidneys.

My question is, has anyone here had the simple cystectomy rather than the radical cystectomy? The difference is that in a simple cystectomy only the bladder is removed and a diversion is created. In a radical cystectomy, the bladder and surrounding organs are more than likely removed due to cancer.

If it is decided that Jim should have his bladder removed he'll have the simple cystectomy. He will not have an internal bladder (pouch) because he already has the stoma in place and uses an external pouch.

If you had this surgery, what complications, if any, did you experience? We have been told that in a male more than likely Jim's sexual function will be gone due to the nerves being close to the bladder. But, we also know it's less likely in a simple cystectomy. It's not that important to us, but it is a consideration.

Also, do you still have the urge to urinate? I have read some still have the urge. Is this a phantom pain or a real physical urge? Does it go away and do you take meds to help with it?

And one more final question, have you experienced any infections since the cystectomy? This is probably our most important question regarding the surgery.