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Anyone Living With A Stoma?

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jonah hart | 21:52 Thu 23rd Mar 2017 | Body & Soul
14 Answers
Hi.
Anyone here living with a stoma?
My mum as a stoma, she's handled it fantastically.
However she is nervous about travelling on public transport incase her bag bursts or leaks.
Is there any suggestions on how to prevent this happening please.
I desperately do not want my mum to start and lose her confidence or feel isolated.
Any advice would be really grateful x

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This might be relevant:
http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets%202013%20New%20Address/traveladvice_014.pdf

. . . together with the more general advice here:
http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets%202013%20New%20Address/livingwithacolostomy_011.pdf

The Colostomy Association has a 24-hour helpline: 0800 328 4257

Their website is here:
http://www.colostomyassociation.org.uk/index.php

Stomawise also provides support:
http://www.stomawise.co.uk/
Question Author
Thankyou so much.
I'll look at these links now, thankyou
no direct experience but I have known a few people with stomas and they have found this site useful
http://www.stomawise.co.uk

also this one
https://community.macmillan.org.uk/cancer_experiences/ileostomy_and_colostomy_discussions/discussions
Question Author
Thankyou so very much
My Aunt has a stoma due to metatastic breast cancer. It hasn't stopped her doing what she wants to do. She calls her stoma "Fred" and he doesn't tend to stop her doing the things that she wants to do. I have met airline crew who have a stoma and that is a different situation due to pressurisation but they still seem to manage OK
I've had a stoma for 12 months as a result of emergency surgery. How long has your mum had hers? I think our bodies all work a bit differently, and take a while to settle into a routine. I simply just avoid eating when I'm due to to out, i.e. going out at lunchtime, I don't eat anything beforehand. Going out at, say, 6pm, I don't eat after 1.00pm. Support pants or belt will help contain an overflow. An overflow is embarrassing and unpredictable but, following this regime, has never happened to me in public so far. Always carry a change of bag in case the worse happens, even going to supermarket. I hope she copes with it well.
depends what it was due to

ileostomy which I had is radically different from colostomy

i never stops where as c tends to settle down to a few times a day related to meals

popping ( honestly doesnt she have an ostomy nurse ? ) is pretty rare and I used to go out - and let it rip

I went back to running
and at least one has made it up everest

what did happen was bag splat at night
you wake up just covered in ileostomy fluid
and if it was a deep sleep then it is in the hair ....

( as you can see I didnt cope particularly well with mine)
Question Author
Excellent advice "overthetop" ill pass that on to my mum.
She's had hers just over a year, and handled the change amazingly.
She goes out locally but worried about travelling on buses incase she leaks, she's doing a food diary at the minute to test her bag use, i think these ideas will help her so much.
Thank you all for your advice.
I love that your aunt calls hers Fred 237sj :-)
Question Author
Are you still not used to it Peter?
My mums bowel exploded, leaking dangerous gas's through her body, they literally had to operate immediately to say her life.
They first operation didn't work and she had to have it done again two weeks later.
She's terrified her bag will leak while on the bus, but desperate to get her independence back.
My husband has a stoma after having had rectal cancer.
It is life changing but he's managed ok.There have been some messy accidents but luckily only at home.
As overthetop says avoid eating before going out. The problem is because food goes through stoma people's digestive system much more quickly then they get hungry. So if she must have something rather than feel lightheaded from lack of food ,eat something stodgey which takes longer to digest.
It takes time to get into a routine with something like this as there's no control over "output" ,so to speak.We've often got half way to somewhere and have had to turn back.
The best people to speak to are the stoma nurses at the hospital.They can give the best advice as to how to manage day to day situations.And above all make sure that the stoma bag seals fit correctly. Wishing your Mum all best.
A patient said to me the other day if shes going out she avoids fizzy drinks incl champagne etc at parties because the gas fills her bag up.... just a thought! Xx
Question Author
Thankyou shaneystar excellent advice that ill pass on to my mum, and i hope your husband is doing well x
And thankyou tinkerbelle x
This website is also very useful:

http://www.iasupport.org/

They have a forum here:

http://forum.iasupport.org/

A food diary is a good idea - hopefully as your mum learns how different food affects her stoma, her confidence will grow. :)
Question Author
Thanks ever so much, all the advice is really appreciated x

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