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
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
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 !!!
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