questions

[h808]

why is bladder removal a last resort?

how can people still have ic symptoms if they don't have a bladder?

if ic doesn't usually progress what does end stage really mean?

[jen74]

To answer your first question, bladder removal is last resort due to the seriousness and risks of the surgery itself. It is a complicated surgery and it involves alot. Usually your other organs like small intestines are involved in this surgery and there can be complications there that are very serious. That being said, it would only be done if All else failed.

As for still having pain in the bladder after it is removed, this is what they call phantom pains. Like when a person has a limb removed, they can still have a pain sensation in that limb or where it use to be. This happened to my brother-in-law. He was in an accident where he lost most of his right foot. He says he can feel pain where his foot use to be.

As far as end stage IC, I am not certain what this means to be honest. I think it means when a persons bladder is so bad off that nothing else is left to be done other than take it out. Again which that would be a very very last resort.

Hope this helps, I am sure someone esle will chime in.

Jen

[h808]

great, thanks for clearing that up jen.

[kadi]

The pelvic floor muscles often become weak, irritated, and cramped due to the IC. Those problems can remain after bladder removal. Nerve pain can also persist afterwards. Some patients also have had trouble if their urethra was not also removed.

As much as I wanted to rip my bladder out of my body when my symptoms were at their worst, it's still a last resort...

[Judith56]

Just wanted to add to what has already been said. Not everyone has pain or persistence of IC symptoms after bladder removal. For some initially they may still feel the need to urinate even though physically they can not, but in time this feeling goes away as long as the urethra and all of the bladder have been removed. As for IC and progression of it, for most people they do not progress beyond a certain point. For some it can get worse with the passage of time, especially if it has gone untreated for many years. That is what happened to me because of the fact that I was diagnosed over 33 years ago before many of the treatments were available. I ended up getting my bladder and urethra out 25 years ago. I want to make it clear though that my main problem was frequency and I could not hold more than 30 cc's at a time so I had no choice. I also had bands of fiber growing in my bladder and it had lost all muscle tone, so that I was incontinent as well. They did not say end stage back then, but I am sure that is what it would be considered today.
Doctors do not like to do it as it is permanent, there is no going back. Beside the risks of major surgery some people get complications from the surgery afterwards.

[Briza]

Hi Judith
Thanks for explaining it all so well, both the benefits and the risks. It's so important for new members to read hear about this from someone who has gone this route. I'm very happy that your surgery has worked out for you and that you are are doing well. Bri