Talking about… stomas

Not everyone with Crohn’s or Colitis will need surgery to make a stoma. But if you do, here’s what others have to say about the experience and the changes to their body.

Hannah_web

The biggest misconception is about hygiene and smell. Fair enough, it is poo we’re talking about here. But to be honest, I more thoroughly clean my stoma than I ever did my butt. The bag itself doesn’t smell – there are filters to help with that. The only time you’ll smell my stoma output is if you go to the toilet after me; it’s something I’ve just had to suck up and deal with when using public toilets. I’m never going to see those people again!

Hannah, living with Ulcerative Colitis
Moeed1

I find that if you’re cool with it, other people are too. If you make a big deal of it, they will as well. That’s why I’ve always been very open about my stoma. Everyone reaches that level of comfort in their own time, but I think there’s no need to hide anything.

Moeed, living with Crohn's Disease
AL

When the nurse showed me my stoma my initial thought was 'Oh, it’s not that bad'. I thought it looked like a rose so I named it Rosie. Every year we celebrate Rosie’s birthday – we get a cake and balloons for her! I think I’m just celebrating that I’ve had a second chance at life.

Aleesha, living with Ulcerative Colitis
El

Stoma surgery needs to stop being seen as 'the worst case scenario'. The worst case scenario is death. Stomas give back life & I’d rather have my stoma and be able to be free from meds, pain, anxiety, diet restrictions, & be able to live my life normally!

Ele, living with Ulcerative Colitis

Talking tips

Celebrate your bag…

Some people parade their ostomy bag like it’s Louis Vuitton. They name them, acclaim them – even celebrate their ‘birthday’! And why not? After all, how many accessories do you own that have improved your quality of life?

…or look beyond it

‘Out and proud’ isn’t everyone’s bag. But even if you’re not wild about how it looks or the hassle it causes, try to focus on the things it allows you to do that you couldn’t before.

Make it part of the family

Getting family members – especially kids – involved in helping care for your stoma is a great way to help them better understand your condition.

Have a moan about it…

No-one says you have to be super happy about your stoma 24-7. And if it helps to moan about it every now and then, go for it. That’s what it’s there for after all – getting it out of your system!

…and keep talking.

Remember to talk to medical professionals for practical advice. Your stoma nurse can help you feel confident changing your bag when out and about, and help friends and family know how they can support you.

Useful information/links