Hi
I was just wondering if any of you lovely urostomy ladies knew of any online support groups/chats etc? I became the new owner of my stoma in April and I’m very grateful that I have taken to it well however it would be nice to chat to someone else in the same position :-)
thank you kindly xxxx
There are a group of us who have had exenteration with urostomies that chat. However, quite honestly we don't even mention them! Compared to the colostomies and reconstructions and the fact that it is only 50 per cent curative, I think they worry us not at all. I am.not sure we would be suitable as we could frighten you with our morbid tales. Could you maybe try a local stoma group? It sounds like you are coping very well but.looking for connections in the same boat. Always good to have! Good luck!
Karen x
Hi Shell. Like Karen I've had a pelvic exenteration and have both colostomy and urostomy. If you would like to message me or chat on Facebook I'm quite happy to pass on any info I can.
Our local hospital has a cancer centre and they have a stoma meet once a month. Worth asking your stoma nurse if you have anything similar close to you.
There is a cancer group on FB called the Teal ladies but that is very general , lots of ladies from the USA, and not actually as informative as here on Jo's but worth a look if you want some feedback on questions.
Thank you ladies, unfortunately there isn’t any ‘groups’ local to me to attend. I’m the only lady on my stoma nurses books that has the urostomy at my age, all her other patients are ‘elderly’ as she says.
i have no problems with the stoma it’s just the ‘accessories’ and clothing I’m struggling with, im making my own stoma friendly pillow so I can lay on my tummy on my hols. I’m worried about winter and what trousers/jeans wear well with the stoma if you could help me on that?
Thanks again xx
There are fabulous maternity pillows on Amazon which are brilliant for getting into good positions. Also if you look at the website for vanilla blush you can find the sort of underwear you are looking for. Some is available on the NHS..You can also get bespoke stretch lace belts from your stoma nurse which will support and hide your bag.
Karen x
Oh fab thank you :-) xx
At the moment I'm wearing the full briefs from M&S. Bags fit nicely in there and I just reach up the leg for the tap on the urostomy when I need to empty. Clothes will be what you are comfortable with. My scar goes right up under my boobs and is still very sensitive so I'm avoiding waistbands atm and wearing summer dresses. I have been assured that even with 2 bags and a fitted dress the bags do not show at all.
I'm being fitted on Thursday for one of the lacy stretch belts Karen mentioned. They hold the bag securely and help prevent hernias.
Have a try on session with your own clothes and see what you feel comfortable with
Hey shell,
It's winter in Australia though it doesnt get as cold as uk. I wear a tunic dress with tights and it covers the bag up comfortably ... I'm not thst great with tight stuff as I get a big lump as my ileostomy dumps fluids rather quickly and tight stuff feels uncomfortable over it. It looks nice and i feel comfortable in it. It hides my neph tubes too which are on leg bags because otherwise they are in awkward positions to empty without a pee incident.. There is an ostomate site in australia... have to check out the address. The stoma organisation I am with provide a magazine once a month with articles... I'll look up their address for you tomorrow. Otherwise at home... trackies are most comfortable for me or loose fitting stretchy pants. Xx
hi Bexter
I’ll give the tights a go :)
thank you much appreciated. Hope your doing as well as you can be
xx
Hi shell,
The magazine only has the Australian stoma associations not as website. There is some on Google under ostomate.... but i dont know if they are any good but I will keep an eye out.
I'm improving slowly and getting some strength back just waiting for results so the doctors can plan their next move.
Xx
