When???

[lisa35]

What is the ultimate determining factor to remove a bladder? How is end stage IC diagnosed? I have not ever reached a level point with my IC. Each year it slowly gets worse and worse. Who makes the final decision?

Wishing you all good days,

Lisa

[jaime15]

Good question I'd like to know also....???????

Jaime confused.gif

[deborah b.]

Your bladder will shrink to nothing and your capacity of your bladder will only hold up to nothing. I think thats what they determine to have your bladder removed!!!! I'm not sure about th?????

[Judith]

Speaking from personal experience, my urologist was the one who made the decision that it was time for my bladder to come out. Of course I had the final say, but by the time I was told it needed to come out, I was more than ready to be rid of it. I did stall for a few months, but what prompted me to go ahead with the surgery, was when I realized not only was it affecting my quality of life, but my husband's and children's as well. I do not regret going ahead with the surgery. Judith <img src="graemlins/bunny.gif" border="0" alt="[bunny]" /> web page (http://http://)

[shaunie]

Judith-
When did you have your bladder removed and what is your quality of life like now? Sometimes I wonder why we try all these conservative methods of treatment when all they do for a lot of us is just make it so that we can get through the day. I haven't had a good day in over three months. I keep getting new meds and nothing happens. Maybe I'll get lucky and be able to hold it for an hour, but more than likely I won't. It's hard to be positive when I'm not getting any relief. I can't be the only one that wishes they would just take my bladder out and let me adjust and get my life back. Will many of us continue to suffer only to have this be the end result anyway? I just want to be able to sleep again- get back in graduate sschool -which I had to drop out of and be somewhat normal without always wondering where the bathroom is. Did you get phantom urgency?

[Don]

I think its up to each person not the dr. when you have had enough and tried just about everything then you make the decision. I talk with my Dr. about it and he said lets do a bladder augmentation first and I told him no if and when I do this I want a bladder removal and he agreed you will find most uros don't know what to do for us.Just not enough knowledge about this disease. Just my opinion,but I really think its up to each one of us.

[Jim Beech]

Hello Lisa, I would think the decision regarding surgery will be yours. In my case I had got to the stage of almost constant pain and going to the toilet every 15 or 20 minutes day and night. I was quite desperate. I changed my consultant and the new one said I had the worst bladder he had seen in years. He recommended having it removed but I had already decided that this would be the only way out. I have never regretted it.
I can only wish you luck in whatever you decide,
regards, Jim

[jodiii]

Hello Lisa
I Will try to give my email again maybe this time it will work rjgarrett@networld.com. I have some insight for you on the uros in salt lake.
I feel jim is right its mainly up to you. my uro said they don't like to take the bladder but, in some cases it is needed. I am going in on monday the 5th to have another scope of the bladder. They would like to see the growth and pin point bleeding. I have had several years of treatments. i feel like a ginny pig. I have done all i can do. The only way to free it is to remove it. I just got a kidney and bladder infection WOW!!! i thought going every twenty min was bad try 4 times in ten min. I haven't had a bladder or urinary infection in almost 9 years. even though i have had IC for 6 years. This is awful. I feel for the IC patients that get cronic infections and my heart goes out to you all. I hope you have luck in seeing what will be best for you.
Take care
Jodi

[Judith]

Shaunie,
I had my bladder out in 1986, so it is almost 17 years ago. Please remember that at that time they did not have Elmiron, Interstim, or other treatments that they now try.At the time I had tried everything they had available and nothing woked, I just kept getting worse. Aftr my surgery my doctor apologized for not having suggested to do it sooner and making me go through treatments and prolonging the inevitable. Also back then they did not take bladders out for IC, so I think my doc had to go to a review board before he was able to do the surgery on me. Judith

[Kara]

As far as my situtation went, I decided my bladder was coming out! I had had enough! When my doctor finally did remove it, he realized that we should have done it much, much sooner but instead I was left to suffer. I had scar tissue inside the bladder and it could only hold 3 ounces of fluid. It had tons of scar tissue and adhesions and really served me no purpose at all but to cause my life hell. My doctor also found, after opening me up that there was scar tissue that grew outside of the bladdderm inflaming and swelling all other organs down there. Sometimes they don't know even when they look at the bladder. Sometimes IC manifests itself in the layers of our bladder that are unreachable, even though biopsies, so it's about the patient and how the patient feels he or she is living and if they are happy about how their IC is going. Some people just find the right med, surgery, or treatment or a combination of all 3 to get them feeling good enough to live. Some people like myself, find nothing that helps 100% and 75% of my life with IC was unacceptable to me. Some people learn to live with their IC, I was not one of those strong people.

Kara

[Sandy M]

Hi Kara Good to read you are feeling better. I also hold only 3 ounces but do not have pain. Frequency is maddening though!! Read a post yesterday that a bladder can eventually shrink to nothing. Do you think this is true? Thats scary, Take care, Sandy

[Kara]

Sandy,

Yes, I'm sure anything is possible in this world today. Just look at those two babies that were separated at the head in California or where ever it was. If babies can be born like that, then I am sure a bladder can shrink down to nothing, but the quality of life of that human being probably isn't worth trying to suffer to use it in that state. But you never know, this world is a strange and scary place. The medical miracles keep going. Let's hope they hurry up and find one for IC!!!!!


Kara <img src="graemlins/blink.gif" border="0" alt="[blink]" />

[shaunie]

Kara,
Yes, you were one of those people. You were and are strong. Enduring a life of pain doesn't make one strong.Congrats to all those who can
live with this horrible disease, but another round of applause to all the people who decided to do the alternative- get it removed. I understand that we must try conservative methods first, but if quality of life is no longer existant what's the point of dealing with this chronic condition? Here's a few statistics....
IC related medical care cost in the US was $116.6 million in 1987 and IC related lost economic production was $311.7 million. It's 2002. Have these numbers gone up? You bet. Is the lost economic production $311.7 million unacceptable?
Yes yes yes!!!!! This disease is making it impossible for many to work and we're supposed to accept that? For many, they will work through conservative methods and fail only to have the last step be bladder removal. What does this do to one's character? Self Esteem? Doctor's build us up that we will find treatment of some sort that will help alleviate the symptom's. In a perfect world this will happen, but we don't live in a perfect world. I've just about exausted all oral mediactions and nothing seems to be working. My next step is interstim which my doctor is talking about right now. Meanwhile my bladder capacity is diminishing and diminishing and shrinking and shrinking.... UNACCEPTABLE. I am happy for all who have a mild form of this disease and who can get their symptoms under control. This is great. People like you all should NEVER consider bladder removal as an option. You can adjust and you are truly lucky. I myself feel that if I have tried everything and I have no quality of life which seems to be the road I'm headed down that this is "WHEN" it is time to remove the bladder. You shouldn't have to wait and lose more years of your life waiting for your bladder to shrink to the size of a walnut. Am I being negative and giving up? No, I would consider anyone thinking this way to be smart. Reality is Reality. Let's face it. We deal with things as long as we can. We try until nothing works. Then, we make a smart decision to get our quality of life back and give those around us theirs back( because we alter their life in so many ways) and we move on in life because we were meant to live not SUFFER. So, when you think about IC, understand that it isn't forever and if it is it's not going to control your life. TRY ALL TREATMENTS, and don't give up until you have. This will take some time and yes it is a setback, but the end result and decision will be yours. Either they're going to help you or you're going to find a surgeon that does. Relief will be forthcoming sooner or later. We all must stay positive when dealing with IC and we must have hope. Don't forget this. But, there is absolutely no reason people shouldn't be able to work because of IC. If we had bladder cancer and couldn't get it under control they wouldn't think twice about removing our bladder. You make the decision in the end. It's your call, your life, and up to you.How do you want to live your life? Just something to think about......

[Kara]

Shaunie,

I agree with you 100%. You took the words right out of my head and wrote them down. Thank You, and YES I did make the right choice. smile.gif If I were stil in college lets say to get my MA or PHD, I would NOT accept the way I was living and could not sit through any of my classes and I am a 3.9 student so that is not an option for me. When I went to college I NEVER missed a class. But now, I would and the 3.9 would die. That was my dream to become a therapist for high school and middle shcool students. That dream is gone and so is the girl that earned her 3.9. I have no self-esteem, pride, or encouragement. BUT, now with my bladder removed, I may someday be able to go to grad school.


Happy Dreaming!


Kara