Surgery Outcomes

[Judith56]

Having an ostomy does not shorten life expectancy. Many folks with ostomies do have other health issues that may influence how long they live. As for pain, I do not know if there have been any formal scientific studies done. But from talking to others who have had the surgery it seems to me that people whose main symptom is pain do not do as well as those who have the surgery for frequency/small bladder problems. In those people they tend to have a better outcome from the surgery. This is just my opinion. It might be a good topic for a poll. Judith:)

[LissaR]

I have everything that goes with i.c., like frquency, not being able to empty my bladder, and severe pain. I do not want to live like this anymore, but I am very scared that once I remove my bladder the pain will still be there. I have read some articles about making a bladder out of part of the colon. But, they have said that the i.c. can come back into the new "bladder". What do you now about that?

[Jen_Cole]

I'd like to know that too! I was under the assumption that IC does not affect a new bladder. Does anyone know?

[Judith56]

My very first major surgery was an augmentation cystoplasty. What they did was remove almost all of my bladder and left the base of the bladder. They then used the ileal cecal segment of my intestine to build on to what I had left, thus creating a new and larger bladder. Sadly within 6 months IC had then spread to the entire new bladder, so 8 months after that surgery I had my entire bladder taken out and was given an ileal conduit, also known as a urostomy. They removed the urethra at the same time. I do know that some people have had success with this surgery, but mostly it ends up being a failure. If this is proposed to you as an option, I would ask the doctor for statistics as to his/her success and also names of thier patients that you could talk to that have had the surgery. I have not had any problems with IC attacking either my ileal conduit or the internal pouch that I had converted to. Hope this answers some of your questions. Just remember this is my own personal experience, everyone is different. Judith

[julesb44]

I have had an Indiana Pouch for 1 1/2 years. I had all of the symptoms, but pain was my main one. Once the pain from the surgery was gone, I had no pain. I still have no pain. From the people I talked to, there was only one who said the ic had come back. I don't know if she had her whole bladder removed or not. It sounds like that makes a difference. If the pain is from ic, I don't understand how it could still be there if you're getting rid of the organ that has the ic. Of course, that's just my opinion.
Take care, Julie:angel:

[ICLori]

Since this APF stuff comes from the bladder, leaving even a small portion of the bladder will leave bladder cells that will produce the APF wich causes IC. So simply augmenting the bladder, while leaving the base, is almost a guarantee I would think for the IC to come back. You have to get rid of the organ that is making the APF - the bladder. Once the APF is gone, the IC is gone.

Blessings, Lori
P.S. I'm ready to rip this stupid bladder out of me too but doubt my doc will let me...

[LissaR]

What is APF? Please explain what it is. With all the med's I am taking, sometimes my brain gets very forgetful.

[ICLori]

Hi, Lissa, I hear you, I'm in brain fog from pain/lack of sleep most of the time too.

APF is that anti-proliferative factor stuff, that they've discovered is secreted by the bladder cells of IC'ers, and not by non-IC'ers. It stops the growth cycle, so what you get is a ragged, wounded, raw bladder instead of a nice lining of the bladder like non-IC'ers get.

Our own bladders secrete this stuff that causes IC. Why? Who knows...they are working on it now...

There are some articles posted on this site about APF etc...or if you do a google search you can read more about it if you're interested, don't want to repost here in case no one else is interested...

Blessings, Lori