Ostomy patients.

[Bubblemonkey]

Hey.

Does anyone have a stoma bag of any description? We're hoping to get married in March. I haven't stayed anywhere but the hospital since I had my urostomy [bag for urine] done.

Anyone have any wise words for staying somewhere other than home? 4.5 months to go & I'm more worried about my stoma than anything else

Thanks.

Have a look at the So Bad Ass blog. I can't do links right now but I know the woman who writes it and it's very honest, funny and useful.

What is it you're worried about exactly? Maybe someone can ease your worries if they are specific.

I have a stoma but it doesn't have a bag. Recently I've experienced leakage from it, despite wearing a large dressing over it at night. I've take to sleeping on a towel, and have always had a waterproof mattress cover. We went away for the weekend in October, and I did send an email explaining it was an embarassing issue for me, but checking that they had waterproof mattress covers. I also took my own towels so I wasn't at risk of wetting theirs.

This is the first time in the five years since I've had it done that I've actually let the place I'm staying know, and it's only because of my current leakage issue.

Leaking is my biggest worry. If it leaks at home. I can throw my bedding in the washer & it’s no major issue. I rolled over & popped my bag off because my night time drainage wasn’t cooperating a few nights ago 😬

If you look up Hannah Witton on YouTube she talks about her stoma bag quite a bit.

@Bubblemonkey

Leaking is my biggest worry. If it leaks at home. I can throw my bedding in the washer & it’s no major issue. I rolled over & popped my bag off because my night time drainage wasn’t cooperating a few nights ago 😬

My stoma is for urine (I have a mitrofanoff) so can relate to worrying about leakage.

As I said, because I'm having issues at the moment I just do what I can to mitigate the problem. Take extra towels that I can sleep on, check the place you are staying has waterproof mattress covers and maybe even ask for a set of extra bedding in your room.

I remember being on holiday in Lanzarote and having a leak. Had to use google translate to leave a note for housekeeping to apologise and let them know what had happened, and also ask for extra bedding!

It's not a particularly pleasant thing to have to think about, but if you think about it beforehand and send emails etc it can make it far less embarrassing a problem.

Good luck with the wedding by the way! It's coming up to our 2 year anniversary, we got married in Florida so I had a suitcase full of catheters and related medical items. You get medical baggage for free though, so that's a bonus!