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  1. #1
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    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
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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
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    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
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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.
    [IMG]

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

  5. #5
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    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
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    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.

  7. #7
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    Re: Had bladder out 4 days ago! yahoo!

    Hi Landor!
    Sorry just getting back to you, but I don't frequent this forum much anymore, since I really don't have IC anymore!!! I use the Inspire forum for ostomates, but I check back here periodically to see if anyone needs advice about the bladder surgery....
    So sorry to hear of your long term struggle with IC... been there!
    It started almost 2 yrs ago as the usual symptoms of what were thought to be UTI's, but with no relief from antibiotics, and the symptoms ( urgency, frequency, urethral and labial burning) kept getting worse and finally saw a urologist who did a cystoscopy and diagnosed IC. (Pyridium would not touch the symptoms)
    We started with bladder instillations of Heparin and Lidocaine, and oral Elmiron, then Elmiron instillations. That Dr had a nasty attitude, so I switched to another who swore that DMSO instillations were the answer.... NO Relief at all after several months of twice weekly treatments. New urologist - many more treatments, antihistamines, Pelvic PT (which was NOT the cause of the problem)
    Many more tx later, no relief - Of course strictly followed the IC diet, used All the supplements suggested, Desert Harvest Aloe, etc.... The only tx NOT tried was Botox, because that tx is not for pain and that was my major problem.... It only helps the frequency and urgency....
    I had to quit my job as an RN over a year ago, the pain and burning was debilitating- I was bedridden for over a year.... Had to lay down with my legs spread at all times, any movement caused friction that was excruciating, couldn't walk without the excruciating pain.....
    It just so happened that I had to have kidney stones removed percutaneously because regular lithotripsy didn't work.... When I had the nephrostomy tubes inserted, I had a major relief of pain and burning because by bypassing the bladder and urethra, I was only vding a tiny amt 2x/ day, instead of 40x/day!
    When I finally saw the surgeon that did my surgery, he said that he would do it because he saw the relief I got from the diversion of the urine away from the bladder and urethra....
    Which is exactly what happened- after surgery and removal of bladder plus 100% of the urethra, I have NO MORE PAIN, OR FREQUENCY OR URGENCY!!!!
    I am still recovering well from surgery, as an Ostomy nurse yourself, you know what that entails, finding the best equipment, etc. NO MORE PAIN!!!!!
    I wish you could find a surgeon to relieve you from your misery- keep trying to find someone! You CAN have your life back! Just keep searching til you find someone!!!! Good Luck!!!!!

  8. #8
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    Re: Had bladder out 4 days ago! yahoo!

    Oh, and Landor, also had intrathecal pain pump x 10 yrs for chronic sciatic pain, my pain specialist tried every drug combination possible in the pump, plus oral narcotics, NONE of which worked AT ALl, even tho the pain pump still helped my sciatica - go figure!!!!!

  9. #9
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    Re: Had bladder out 4 days ago! yahoo!

    Don't some still have pain after the removals? Do they know why some do and some do not? Is infection management reasonable with the new process? My wife is about to get a pain pump for IC. We were almost ready for at least a temporary bypass of the urethra but we were talked into the pump for now. She has had eight years of nearly constant top level pain. Terrible situation.

  10. #10
    ICN Staff ICNDonna's Avatar
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    Re: Had bladder out 4 days ago! yahoo!

    Quote Originally Posted by looking4hope View Post
    Don't some still have pain after the removals? Do they know why some do and some do not? Is infection management reasonable with the new process? My wife is about to get a pain pump for IC. We were almost ready for at least a temporary bypass of the urethra but we were talked into the pump for now. She has had eight years of nearly constant top level pain. Terrible situation.
    Yes, some people do have phantom pain after removal of the bladder. I suspect that's why so many doctors encourage all other possible treatment options before taking that step. I know people who have had problems following cystectomy and some for whom the procedure went smoothly and no phantom pain. I have to say I encourage the all treatment options possible before going for removal.

    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

    Sub-types https://www.ic-network.com/five-pote...markably-well/

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

    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

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