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  • joea73's avatar

    joea73

    Member
    July 9, 2022 at 8:05 pm

    In terms of finding  the urostomy bags and devices which fit you best, I think  Stoma nurse ( often called ET (enterostomal therapy) nurse, WOC (wounded, ostomy and continence) will work with you during your stay in the hospital.     Also ostomy suppliers such as Hollister and Coroplast will send you samples free until you find the one which fits to best.     If you need a help from ostomy nurse, you find a stoma nurse in your area by reaching out to the ostomy society.    https://www.ostomy.org/find-an-ostomy-nurse/
    Incidentally, urostomy bags and related devices are covered by Medicare.  So, nothing to worry about ileal in terms after the surgery.

    I think you may be  talking about catheter for Indiana pouch. I know a few female patients who chose India pouch.  They also tried a few different brands and model until they found what they liked.  Catheters for Indiana Pouch are also covered by Medicare Plan B up to 200 per months.  Medicare pays 80% of the price of the catheter but there is the price limit per catheter.  Sorry I forgot what the limit was. So, Medicare covers 80% of the price limit or the price of the catheter you buy, which ever is lower.   So, patients use different strategy to minimize out of pocket expenses but also meet their life styles.  For example, some patient use non-self coated catheter, then dip to lubricant pack usually, but may use small self coated catheters and keep in a purse when she goes out.   I am assuming you are female but Indian Pouch is used by male too.  

    Anyway, there are adjustment you make to fit to new norm, but as Alan pointed out patients go back to the  life style almost the same as the life style they had before the urinary diversion.  The difference is that you would not have to worry much about bladder cancer any longer as the bladder will be removed.

    This site explains how intermittent catheters are covered by insurance, including Medicare
    https://www.hollister.com/en/continencecare/continencelearningcenter/understandingintermittentcatheterization/navigatinginsurancecoverageforintermittentcathetersupplies2#

    Incidentally, ostomy bags and devices are covered by Medicare Plan B as shown in the link
    https://www.medicare.gov/coverage/ostomy-supplies

    best

  • Alan's avatar

    Alan

    Member
    July 7, 2022 at 2:59 pm

    Welcome. We are glad that you are attacking this thing called bladder cancer and choosing life. While I have not had a cystectomy, many here have and always ask away as someone should be able to answer as “been there and done that”.

    I am linking a great site for all of the diversions with pros and cons: https://my.clevelandclinic.org/health/treatments/12546-urinary-reconstruction–diversion

    The good news is most people accept and are happy with whatever diversion they choose.

    Edit added: Be sure your doctor has done MANY of whatever you choose as it is a tedious and rigorous surgery. I am talking 25+ or more a year.

    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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