It sounds to me like you will be LOT better off after getting your bladder and prostate removed.
Like others have said, the ileal conduit is probably the best option for you. Postop, they will give you morphine (most likely) and the pain is very manageable with the right drugs. Unless there is some reason you can't take pain meds, I don't think it will be like you are thinking.
Keep on top of the pain though. Don't wait for it to get out of control and then take pain meds. Take them to keep the pain away.
Best of luck on the surgery. I have the neobladder and pain was not really a big problem for me.
10 years 10 months ago - 10 years 10 months ago#27467by RAH
I have an Illeal Conduit. With the variety of sizes and shapes of the pouches available, there seems to be one that fits most body size.
Even though I can not control the flow of urine, the pouch with a connecting bag allows me to go about my day and night with out any leaks. I have to empty my bag every 3 or so hours while I am awake. I can leak the bag easily since there is a valve on the bag. For me I do it standing at a urinal. At night I connect my bag to a tube that connects to a larger bag. This allows me to expend more urine before it needs to be leaked. I can sleep all night without the night bag getting half full. If I was in a wheel chair, I would probably be connected to the night bag for ease of leaking.
I have to change the pouch every 4-7 days. It takes me about one minute to put a new pouch on. That doesn't count the time to shower and shave the area under the pouch.
After surgery I was on morphine while in the hospital. They managed my pain so I never felt anything. When I was released six days after surgery, I went with no pain medicine. I didn't need any since I was not in any pain.
tagmike, not sure what you mean about non-existent incontinence with the ileal conduit. That particular diversion is total incontinence. You have no control over the urine as it flows constantly. Maybe you are referring to leaking. My Dad had his bladder and prostate removed at the age of 80 (he's now 83) and has adjusted well to his diversion.
easist and fast surgery is the ileal conduit. I have the Neobladder but wouldn't recommend it for you. I'm no doc but from talking with bagpeople they seem happy with it and its not a big inconvenience. dont hsve to cath, and incontinence is minor almost non existant if bag is attached properly.
Wow Mike......who is doing your surgery? Is it being done in Florida? Do you have a choice of where to go and what surgeon to pick?
I found this extremely long paper on neurogenic bladders and there's many suggestions on what to consider and about 3/4 of the way down the page is the ileal conduit. This is the simplist of the surgeries and not as much down time as with the other diversions. Pain can be managed many ways but i'm really not familiar with the referred pain you might be talking about. For most of us the pain is from the waist down and thats managed either by epidural or a morphine pump for a few days.
Take a look at this and don't get freaked out...they have to mention all the possibilities just like they do with drugs.
I know this is a different situation but i know that the indwelling catheters have been a problem with Uti's and leading to bladder cancer in many spina bifida patients. My neighbor has a daughter born with a severe case of it and in a wheelchair. She just (at the age of 11) had an Indiana Pouch put in and she is doing fabulous with it.
Hi all. I am a 6 year Paralized survivor. T-12 (Waist Down). After years of Nurogenic bladder, I am now sick every week with UTI , bladder infections. Unless I am on major Antibiotics I get sick. Lately, I have been Hostpitalized every other week for 6 weeks. The Urologist and Infection Doctors both agree I need to get the sick bladder and prostate removed... and tie the Ureters to a stoma outside the body. I am scared becasue I recently had a Ileo Pipe or Chimminy done a few months ago, but the infections form the bladder grew even more freqent and more intense! I am nearly certain no options are left. My doctors think I will likely die in 6 months if I do not have the bladder removed. Theu are scheduling the surgery now.... eeek.. Im cared! Any thoughts? I know Im in for a whopper surgery... it causes terrible Nuropathic pain beyond belief... and it is very hard for a paralized person go through. But, what I am looking at... after the surgery? Can I expect some sort of life afterwards or am I screwed either Way. Im a little down and looking for any encouragement or suggestions anyone has! Please offer any thoughts... Thanks, Mike from Florida.