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  1. #1
    ICN Member
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    Jul 2016
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    7

    Had bladder out 4 days ago! yahoo!

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    Hi all - had my bladder and %100 urethra out 4 days ago after trying all treatments pretty much except Botox, which does not help pain anyway.... It is SO AMAZING!!!! All of my bladder, urethral, and labial pain is gone! With no urge to pee!!!!! I am SO HAPPY!!!!!!
    My 9 hr lap robotic surgery was completed with no problems by my very good surgeon here in SoCa..... I am in the ( trying to pass gas) phase, which is no picnic! Trying to walk as much as possible, as you know this is the best gas-passing solution., but still having gas pain and surgical incisional pain. However, this pain is NOWHERE NEAR the IC pain I had.. for a long time.....
    So, hopefully I will get some responses, both from people who have had their bladders out, or are contemplating bladder surgies! For some reason, bladder surgery is a taboo subject on this forum, when it is a good solution for those of us with severe, untreatable, IC..
    Thx Joanie.

  2. #2
    ICN Staff ICNDonna's Avatar
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    Re: Had bladder out 4 days ago! yahoo!

    I'm glad you're doing well following your surgery.

    There's no problem with discussing bladder removal here --- because it's a major surgery and doesn't always have desired results, I encourage people to try all other options first, but it's absolutely okay to discuss cystectomy here.

    Warm hugs,
    Donna
    Have you checked the ICN Shop?
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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  3. #3
    ICN Member
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    Jan 2014
    Location
    St Louis, MO
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    1,272

    Re: Had bladder out 4 days ago! yahoo!

    I had my bladder removed in March, 2016 and now have an IC (Ileal Conduit.... an external bag). Which urinary diversion do you have? Ileal conduit, Indiana pouch or Neo-bladder?

    "When you gotta go, you gotta go!"

  4. #4
    ICN Staff ICNDonna's Avatar
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    Re: Had bladder out 4 days ago! yahoo!

    Quote Originally Posted by Bladderella View Post
    I had my bladder removed in March, 2016 and now have an IC (Ileal Conduit.... an external bag). Which urinary diversion do you have? Ileal conduit, Indiana pouch or Neo-bladder?
    Boy, time sure flies! I was thinking it had only been a few months since your surgery. I appreciate very much your being here.


    Donna
    Have you checked the ICN Shop?
    http://www.icnsales.com for US & Canada
    http://www.icnshop.com for all others

    Patient Help: http://www.ic-network.com/patientlinks.html

    Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

    Living with IC Video Series: http://www.ic-network.com/conditions...-video-series/

    AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
    [IMG]

    Anyone who says something is foolproof hasn't met a determined fool

  5. #5
    ICN Member
    Join Date
    Jul 2016
    Posts
    7

    Re: Had bladder out 4 days ago! yahoo!

    Hi Bladderella! So good to hear from you! Have been following your posts for a long time.... Got a kick out of your name at the first! Followed you when you didn't know that you had bladder cancer.., and rooted for you after your svrgery..!!!
    Now today I am 4th day post- op RC with Ileal-Conduit and know only some of what you went through...... I definitely did a LOT of research on IC and the surgery, AND the surgeon! I am ecxtatic with the results! Thx, Bladderella, for answering!

  6. #6
    ICN Member
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    Aug 2011
    Location
    Sunni Florida
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    214

    Re: Had bladder out 4 days ago! yahoo!

    Funngamesjoanie- can I ask a few personal questions? Like how long have you had IC, what treatments have you tried, and how old are you? I so desperatley want my bladder out, I have failed everything. I live a life of hell and misery. I am 46 and my life is over, my IC came out of remission 6 years ago and it has been living hell since then. Nothing works, and trust me I have spent my entire retirement savings chasing every purple unicorn there is. To make matters worse, I have been in a severe flair for 3 weeks now that will not back off. Docs think my life will be worse after getting a bladder bag, but I dont see how anything could be worse. I am an RN and have done years of ostomy care, especially urostomies. So I can do it myself. I am in FL and there are no doctors here that will even consider the surgery. I would come to CA, but I cant fly and I urinate every 15 minutes, so driving will take weeks. I am so frustrated. Just would like to know what you faced before you had the surgery. Thanks and I hope things continue to improve for you.
    I have basically done every treatment for IC except cyclosporine and botox. Everything has failed. I live on pain meds all day. My diet is so strict that I now have multiple vitamin deficiencies. I have also tried numerous alternative therapies. I would do a cystectomy, but doctors seem to think living in pain is better. Currently taking Synthroid, Elmiron, Percocet, Toradol, Desert Harvest aloe. Interstim done 4 times, what a waste. Also newly diagnosed with Hunners Ulcers on cysto. Now disabled due to IC. A body of life, a bladder of hell.

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