Problems With Bladder Removal

[renee40]

I had my bladder removed last July and have had problems ever since. They did not remove my urethra and made a new bladder out of my bowel. At first I was able to urinate normally but now have had to use a catheter since October because I am not able to urinate on my own and the doctors can not figure out a physical reason why. I have had constant pain and infections ever since. I have been in the hospital more than I have been out. I am not able to work or even sit up for more than 20 minutes at a time because of the pain. I am considering having the surgery to have the bag put on and have my urethra removed. I would appreciate any feedback anyone can give me. I want to know if this procedure will help with the pain and hopefully give me my life back. Thanks! Renee

[sailawaygrl]

Unfortunately I cannot help you with your question but I know there are others on here that can. They should be on the forum soon and should see your question. I am sorry you are having trouble.
Sandra

[amaranthe]

I haven't had my bladder removed yet. But, I have been here for many years and have read of people who have had remarkable success and those who had devastating problems/complications. I really dont think anyone can predict for sure which way it is going to go until you take the plunge. But, I will say this...most of the posts I have read where someone has their bladder removed, they usually end up getting the urethra removed too due to continuing problems. The best advice I can give you is to research this vigorously and talk to as many patients as you can who have had this done and ask lots of questions. I would also try to get a 2nd opinion from another Dr. and possibly even a 3rd opinion. Once you do all that, that's all you can really do to make an informed decision. Then you just have to think about it and pray about it and hope you make the right choice.


I wish you the best of luck and wish I could help you.

[Donna82]

Sounds like you've got a neobladder like me, where they leave the urethra and trigone (base) of the bladder, and create a new one around it. But the trigone are where all the nerves are. I asked for a Mirtofanoff in the first place, but I woke up with a neobladder. I will push to have mine converted, as the bits they left in are causing nothing but trouble. Can't they convert yours too? It's better than having a bag. Although mines all been on the NHS (I don't think any insurance company would touch me with a barge pole now!), I know in the states it's different in regards to insurance.

[Judith56]

All I can tell you is what I experienced. The first surgery I had an augmentation where they left the base of the bladder and urethra, I still had the constant urge and I was not able to urinate on my own - I had to use a catheter. The next thing they did was to take everything out- bladder and urethra and I wore an external pouch. That was great- the feelings were gone, but I had problems with the way the conduit was made so after 6 years I was given the option of getting an internal pouch. I did and have had this since 1992- its really worked out well. Do get other opinions, most likely it is possible to get an internal pouch, but if you want to opt for the ileal conduit then go that way. Just make sure to have it done where they do lots of them, if possible.

[renee40]

I am having surgery on April 15th to have an ileal conduit placed and have my neobladder removed. I am also having my urethra removed. I hope this works for me and takes away the pain that I have been experiencing - at least some of it. Any other feedback I can get I would appreciate. Is a person able to do normal things with the bag on the outside? Can you swim in a lake? etc.

[Judith56]

Renee, I think that once recovered you should feel a difference as far as pain levels. You can do anything you want wearing an external pouch. I had one for 6 years and it did not restrict me. There are a few things though you should know. At night you will hook up to a night time drainage system so that the bag will not get too full and you have a "blow out". I suggest that for a bathing suit if you get one with a pattern on it , then it will hide the hide the outline of the pouch. also before you go swimming empty the pouch so that it will be flat against your skin. Hope the surgery is a breeze for you. Judith

[renee40]

Judith - Thank you for your reply. I have a few more questions for you if you don't mind. How long was your recovery process from the time you had your surgery until you actually started to feel better without pain? Also, how often did you have to empty your bag during the day - or did it depend on how much you drank? Thanks! Renee

[Judith56]

Renee as you everyone is different with the recovery process. I was 30 years old when I had this surgery- the ileal conduit one and I had 2 young sons to take care of. This was 25 years ago so what I remember is that I was in the hospital for about 10 days (give or take) and my parents had taken my boys to Disneyworld so I could recuperate without them. Well, one of my parents got sick so I had to fly down there and help out, I had been home maybe a week? I was fine- got tired but overall I was fine. As for pain, once they took out the urethra any pain I had there was gone for good! As far emptying, yes it depends on how much you drink as to how often you need to empty it.

[DebbieD]

I have an ileo-conduit. 26 Years ago. Now Both Kidney are out and I am waiting on a Transplant. Hope that you are doing well. Any Questions I hope that I can help.

DebbieD

[Judith56]

Debbie, good to hear from you hope that kidney comes soon!
Just want to let everyone who reads this know that not everyone who has an ileal conduit goes into kidney failure! Its been 25 yrs since my bladder was out and I do not have problems that Debbie does.

[Snowden1]

renee40,
Could you please post to let us know how you do? This would be the surgery that I would opt for also. The last dr. I spoke to said he would only do the diversion one. Leave in the bladder and divert the urine out by cathing through the stoma in the stomach. I don't want that because I think the pain would still remain. Also, if I try it and it doesn't work I would need to go through 2 surgeries. I don't even think my body can handle one at this point.

I am praying that you do well.