When?

[blue]

When is bladder removal considered?

[ICNDonna]

Usually not until after all available treatments have been tried without any success --- and if there is constant, unrelenting pain --- along with very limited bladder capacity. Most doctors are very hesitant to do the procedure until all other avenues have been explored.

Donna

[Judith56]

Donna is absolutely correct! Judith

[blue]

I didn't even know a bladder could be removed

[blue]

I was wondering because, not long ago. We worked a fatality where this man had bladder cancer. I remember thinking, it's not like they can just remove the bladder! Well, sure enough they can! I went back, reread the report, and his bladder was removed.

It's a good thing it's an option, I didn't even know it existed!

[blue]

Thank you for the reply! It really interests me that this is possible! I am fortunate, and am not sever enough to need my bladder removed.

[julesb44]

Hi May,
I live near Minneapolis, Minnesota. My uro told me it was my decision as to when I would have my bladder removed. I had tried all treatments that were available-that was a prerequisite. I decided it had taken over too much of my life. I was wearing a foley catheter much of the last year. I wanted to go back to work and be at least somewhat painfree. I made that decision 1 1/2 years ago and it was the best decision I ever made! I am painfree, and back at work. I don't think they know yet if ic is systemic. I've talked with many people who had the same surgery as me, and I only know of 1 that had symptoms return. Some have been ic free for over 15 years! Anyway, I just thought I'd give you another point of view.
Take care, Julie:)

[marinda]

I HAVE MENTIONED THIS BEFORE.
EVEN AFTER YOU HAVE YOUR BLADDER REMOVED DOESNT MEAN THAT THE PAIN IS GOING TO GO AWAY.
I PRAY TO MY DEAR LORD THAT DECISION IS ONE THAT I WILL NEVER HAVE TO MAKE. BAD ENOUGH THAT I HAD TO HAVE A HYSTERESTOMY AND NEVER HAD A CHANCE TO HAVE CHILDREN.
NOW THAT I THINK ABOUT IT I WONDER IF I REALLY SHOULD OF
HAD A HYSTERECTOMY?
BUT TO THE ONES WHO HAD TO EXSPIRIECE THIS PRICE.
MY HEART IS OUT FOR YOU. YOU WILL DEFINETLLY BE IN MY FAITH AND PRAYERS. GOD LOVE YOU. I LOVE YOU.

[Judith56]

For some people IC does not always manifest itself as pain. My main problem was frequency, my bladder was shrinking and a number of other symptoms made my life diffucult to live it as I wanted to. I only had pain in the end and it was in my urethra. When I had my bladder out, they also took out the urethra which caused my pain to go away permanantly in that area. Not everyone has the same results from the surgery, but for some people it is the only answer. You need to discuss fully with your doctor how they feel your outcome might be. Most likely they will have good indication based on experience with thier other patients. No surgery is a sure thing, there are risks with any surgery. Each must make thier own choices and this board is to help support those who make this most difficult choice. Judith

[LissaR]

Is it true that removing your bladder shortens your life expectancy? My doctor said that he had read some reports that "suggested" this. My doctor says that I have end-stage i.c., but bladder removal does not always help the pain, and can sometimes cause other problems.

[curlycue]

That is a very good question? Can anyone answere that? I spoke to a URO on Monday and I asked him about bladder removal and he said NO WAY I dont understand why he was so against it? He is not the on who is going to have to live with the bag and if you can live a some what of a life why not?
Ruth

[Judith56]

As far as I know it does shorten life expectancy. Many people who do have ostomies usually have other health issues and that is what may shorten thier lives. Doctors do not like to do the surgery for IC unless there is no other choice, since it really is irreversable once the bladder is out. I do think that if it was more common in men then we would see some changes, since in my experience there appear to be more male doctors and they majority makes the choices. At least now most doctors do recognize the disease. When I was diagnosed 26 years ago, many docotrs didn't even believe it existed! We have come quite far, but still have a long way to go. Judith