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  • GatorGirl
    replied
    Bladder Removal

    I realize I'm a little late to this discussion...but I too am considering bladder removal, although my major symptom is pain. I've done everything and lost multiple friends and recently my marriage to this disease and I came back to live with my parents to start an extreme treatment plan with the final stop being bladder removal. My urologist I see here told me about the three kinds of bladder removal with the bag, neobladder, and Indiana/Florida Bladder. The neobladder is the best which means I wouldn't have a bag or have to empty a fake bladder, I would urinate normally (the only problems could be leakage). Does anyone have the neobladder? Or any other insight on this matter?

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  • Judith56
    replied
    Hi Vanilla, when I had my bladder they did not prescribe pain meds for IC, also many of the current drugs for IC did not exist, so I don't know whether they would have helped. My doctor made the call to have the surgery and I resisted it for quite awhile till finally I realized that my disease was not just affecting me but my family as well so I opted to have it taken out.
    Percocet also also comes in 5mg strength with 250mgs of tylenol. Some of these combination drugs are being changed so that the dosage of tylenol does not go over 250 mgs.

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  • vanilla
    replied
    Hmm, I think you're right, then not only would I need a new bladder but a liver too. I was reading an article about Patti Hansen, wife of Keith Richards from the Rolling Stones, she had cancer and had her entire bladder removed. Now she has something called a neobladder, which is made from her small intestine. According to the article, the whole procedure was a success, and she likes what she calls her new "bionic bladder". I think I need a bionic bladder.

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  • Mothergoose
    replied
    I think and I am not sure about this but I think the problem with percocet is it has Tylenol in it and if you are taking 40mg of percocet that is 5mg of oxy and the Tylenol, you are getting close to the daily safe limit of Tylenol per day.

    If you are in the US I believe it comes in 10mg pills plus Tylenol but I don't know the amount of Tylenol in it.

    Maybe something to look into if it works for you.

    MG

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  • vanilla
    replied
    Judith,

    I am only one year into this awful disease. My major problem is frequency. The constant, unrelenting urge to pee. You mention, that this was your problem as well, and that led to your decision to have your bladder removed. I have not tried everything as of yet, but I am running out of options. So far, I have had bladder instillations weekly, since Oct. I follow the diet, take elmiron, elavil, cystaq, claritin, valium, and topical gabapentin. Pyridium and prosed medications do not work for me The only medication that stops my strong, constant urges is percocet, sometimes up to 4 hours without an urge. But the doctors I see won't prescribe high doses of narcotics (more that 40 mg day). So I guess my question is, Did you ever get relief from a prescription medicine before you made this decision?
    Last edited by vanilla; 06-21-2011, 02:38 PM.

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  • Judith56
    replied
    Classiclem as you know IC is still a mystery to the doctors so until they figure it all out it is hard to say why some people have no improvement and others are helped. I can tell you that I had my bladder out and I no longer have any symptoms of it. It is a very hard decision, but for me it was the right one. I had my surgery mostly due to frequency so it seems to me those that have frequency as the main issue tend to do better than those who have it done for pain. I am by no means a doctor or a nurse this just my own observations from to talking to many people over the years who have had the surgery.

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  • ICNDonna
    replied
    Unfortunately bladder removal isn't always the answer. I have to agree that trying every other available treatment is a good idea.

    Warm hugs,
    Donna

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  • classicclem
    started a topic Bladder removal issues

    Bladder removal issues

    Trying to understand why bladder removal for IC doesn't work. Have read a lot of posts and some say there have been NO changes after they went through all that surgery and then the others have had SOME improvement but not one person has spoken of complete resolution. I'm still very confused with all this as I am in End Stage and some uro's want my bladder out and others are willing to try everything available..............So confused

    Classicclem
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