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Homepage – Forum Forums Non-Muscle Invasive Bladder Cancer Help advice/suggestions needed….

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    Many of you already know, my situation,   I’m not going to go through everything again here, if you’re interested in my story it’s well documented in this forum.

    I have a very important ( to me)  question to ask those that have gone through the RC route and are presently living with a Urostomy.   A good 6 months after the operation and recovery, my wife and I started to travel again,  I was prepared as much as I possibly could, to handle what I thought was anything relating to having my ostomy fail.  I always have a backup set of clothes in the car along with 2 complete sets of flanges, seals, bags and whatnot.

    My question is this,  has anyone with a Urostomy ever had an accident in a hotel, motel or B&B bed?   I recently had a flange leak at a B&B while travelling,  we have stayed there before and we were very comfortable there.  I was mortified to say the least,  I did what I could, rinsing out the bedding and cleaning the mattress protector,  I told my wife that I want to leave immediately it was around 5AM and not stay for breakfast.  I did leave a sizable tip along with the regular room rate.  Thankfully, the bed was fine,  I always travel with hospital bed protectors and such the only problem is  they also failed and the sheets got soiled, luckily the owner had a very good waterproof mattress protector on.  My dear wife left a note to the owner and called him later that morning,  My wife wants to go back there, the owner understood totally he himself is a cancer survivor,  he even called us back a little later to see how I was and to try to reassure me that it was no big thing.  I just can’t get around going back with the fear it could happen again….

    Just when I was starting to feel comfortable with this thing, this happens!  It’s put me back many steps in my emotional recovery I feel.   So my question to those that have a Urostomy,  has this happened to you or someone you know and if so  what did you do in regards to travel…    WE have so many travel plans for the upcoming year to make up for the past 3 years  and getting our lives back .   Any suggestions on what to do?   Has this happened to you and what did you do about and how did you move on?   This may seem trivial to some of you and that’s fine, but it has really affected me emotionally and I’m trying to figure out how to get past it.


    Thanks for your time..



    Oh gosh Mike, I am so sorry to hear about your ‘setback’.  I can totally understand how you would feel emotionally.  I sure hope you get reassurance from those who might have had a similar experience.  Perhaps the question to ask is what caused leakage?  Do you know Steve who is a moderator in this Forum.  Send him a message to see if he has any information to share with you.

    My best,


    Hi Nightingale

    I really didn’t know what forum to use here,  This is not something that  should be posted on the NMIBC  page I don’t think  but its also not something a MIBC  since I don;t have that either.  I’m thinking maybe we should open a new page for those treated by RC’s    where  we could share information.  I do not know Steve,  hopefully he see’s this and gets back  or maybe someone who can create new subjects could do it.






    Accidents happen!
    Sometimes you have no control. You can take all of the precautions you want and hopefully nothing happens but we all forget Murphy’s Law, when something can go wrong, it will.

    I have had a leak in a hotel where the connector to the night bag failed. I think I turned over and it pulled too hard. Some bedding got wet and I left a note and a good tip. I have had similar accidents at home but they are getting farther apart as I am getting more experience with my urostomy.
    I used to carry a travel bag in the vehicle whenever I went anywhere and still do if it isn’t local but I am now 3 years post surgery and for local daytime travel, I usually don’t take it with me. I get around 5 days wear time and simply change on the morning of day 5 and continue on as normal.

    I can understand how you feel when it was a B&B that you had visited before but the owner understands as would most people, especially family and friends who know you. Please don’t let these type of things bother you and treat them as little annoyances and go on living and enjoying your life with family and friends.



    Thanks guys,  Message received…  basically the same thing my wife told me….   Or I guess Forest Gump…    S**t happens 🙂

    That’s exactly what happened BTW Steve,  the connector pulled away from the bag never felt it until too late.   I have a leg bag I carry in the car its in its own special carry case in the door panel and I use it often then rinse when finished for the day..  Makes driving really good for me but I still have to stop for my bride  LOL…  I will try to lighten up a bit about this annoyance  I’m here  and that’s what counts more than anything.


    Thanks all   last message on this topic.




    Thanks Steve for your response to Mike, and thank you Mike for posting your situation titled Help Advice and Suggestions.  I’ll have a look at the categories we have and see about creating something that is more suitable.  Good suggestion!

    Also, I am glad you’ve come to the realization that sometimes things happen, but we can’t let them get the better of us.

    Enjoy the upcoming warmth that summer will be bringing soon and put this behind you!…

    My best!

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