Sharing Tips and Experiences with Urostomy Bags

Nearly all the posts on this site relate to colostomy users. I have a urostomy bag and would like to share useful hints, etc., with other urostomates!

Go ahead I'm listening : )

Andy, it is obvious we are in the minority - if I had to guess, at least 80% of folks here have "ileos or Colos" - not many uros - I have both, and considering the hell I went thru b4 getting the bags in Sept 2017, it has brought peace and security to my life! I have found the right combination of bags, change twice a week and all is well. Be glad to answer any questions.

Hi Andy, Nov 10/2017 i was lucky enough to have this life saving operation. Right now I struggle with itching under the bag to the point i want to rip it off just to scratch my skin. I seem to be able to go for 4 day rare but sometimes 5 day. I think I might have a hernia, do know anything bout them, i don't, my next appointment isn't till May. Its not painfully, just a round ball that sticks out. I don't know if its like this for you but I'm still pretty swollen and suffered some nerve damage hopefully not permanent, I can't feel from my belly button to my knee's like being a the dentist numb. Teal.

Hi Andy,

I have a urostomy since May 2018.  It has changed my life much more than I wanted it to.  My wife and I have traveled to 48 foreign locations but since this event have not even considered a trip.  Some of that is due to having to downsize our antique business since I'm no longer as strong as I once was and am not able to lift and move large items as I once did.  That has made a considerable difference in our income and we find we no longer can afford the exotic trips that we once made.  Also, I have trouble locating any variety of clothes that I can wear so that the appliance does not show.  Sweat pants or shorts that are worn above my stoma (above my waist) with long shirts that drop down over the stoma are about all I can find that I can wear.  So, I'm limited somewhat in where I can go.  I totally avoid anywhere that a business suit might be required such as weddings or funerals, even church.  I have adjusted pretty well to the maintenance routine of changing the bag every 3 days and unlike the first weeks post-surgery have had very few leaks of any kind.  But, I don't sleep well even though my wife and I now sleep in separate bedrooms.  My world has become much smaller.  I don't like it.   I don't like to think about it never being any better.  My surgery included removal of the bladder and prostate so there is no longer a chance for an erection even though I think about it a lot.  I'm still angry at my surgeon because he "led me down the road that he was 'nerve-sparing'" and it wasn't until the 2nd appointment after the surgery that he told me that I would never have another erection.  Every bad condition that I developed after the surgery, diarrhea for a week, swelling of my genitals, etc. was met with the statement, "that's normal".  When I inquired, "why didn't you tell me?"  He said, "if I had, you wouldn't have had the surgery".  I still think that is very unfair of him and have considered not seeing him anymore.

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