Hello all, I’m new to this group. 
I had a radical Cystectomy back in Oct last year and I think I’m doing ok. 
I am reluctant to go out for too long as my bag needs to be emptied every hour and a half to 2 hours which is quite restricting. I am going to Devon very soon and I  am already getting very anxious about it. I suppose everyone one feels like this on their first trip away. 
Any tips?

  • Hi Harrington and welcome

    I go travelling quite regularly with two stomas (urostomy and colostomy) so I thought I’d jump in on this. To be honest I was a little confused when you said you are feeling restricted due to emptying the bag regularly. For me, it just means needing to find a loo, same as I did before, and needing to go the loo is the same for any person, stoma or not. Unless I’ve misunderstood what you mean?

    I carry a “toilet card”, which explains I may need to use the loo quickly in an emergency, I use disabled access loos and I make sure I always carry spare supplies when travelling. 

    I travel abroad every few months, so by plane, but travelling in the car in this country somewhere would just ensure planning regular stops to go to a loo at a service station for example. I would always also carry a spare plastic bottle in the car to empty into in an absolute emergency! 

    I’m not sure if this helps at all, but I have to say that I don’t feel restricted in the same way that you do. I also have the added inconvenience of having a colostomy to manage, which can be a lot more problematic! I’ve  always had the mindset of not letting my stomas dictate what I can do, and I love travelling. I hope you can enjoy your trip-once you’ve done one, in my experience it becomes much easier to do again, and you gain confidence.

    Sarah xx

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  • Thanks for your comments Sarah, I think it is a mind set thing for me, I keep putting up barriers, can’t help it.

    Hopefully once I have done this holiday I will see things differently.

    I admire you Sarah, your a strong lady.

  • Hi Harrington,Welcome to the group.I’m sure you will be fine.Like Sarah I carry a can’t wait loo card and a disabled loo key.For me the stoma has made it easier than before I had the cystectomy.I had over 34 years of chronic bladder disease and was always having to plan trips around the ability to find a toilet.The urgency and frequency of urination was quite debilitating.I wet myself on the journey to meet the surgeon pre op.Luckily I had brought spare clothes but it was still embarrassing.It’s much quicker now to empty the stoma bag when I’m out and I don’t have the same panic hunting for a loo.Have a lovely time in Devon.Best wishes Jane

  • I had 2x 8 hour drives about a month ago to get a new car. Stopping for fuel/rests/snacks every 2 hours seemed to work very well indeed & my bag never got too full & I didnt get too tired. I suppose this depends on your method of transport, but by car worked very well for me. I'd also like to suggest another option which may work for you & is something I had "in reserve". That is to plug in a night bag. This would increase your staying power to perhaps 8 hours depending on hydration. In prepartion I got my stoma bag suppliers to source a pack of night bags with longer tubes which they sent very quickly as a sample pack.

  • Hi harrington. I had same opp as you in march. I guess everyone has different issues to deal with...but i just carry a man bag with the odd supply incase of an unexpected leak. Cheers. Happy travels

  • When driving any sort of distance i use a night bag So I've plenty of time before I need to empty .was caught short one Friday afternoon I got stuck in traffic u can imagine the rest 

  • Coffee what was the name of the night bag with longer tubes would be interested in hearing  I waken twice a night every night fixing g my nightbag

  • Your use of a night bag as an overflow is the best option which I have found - you don't need to worry when driving - in fact you can last longer beweeen toilet stops than any one else ! I have found that by actually shortening the 2.0m tube, it will tuck nicely under the car seat--- just remember to disconnect before getting out of the car !!!

  • I understand that a 2.0metre tube is pretty standard and has proved about right for me -- if using a bag with a tap connector, it will rotate with you rather than getting all twisted up like some of the push fit tubes will do.