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Many new ostomates worry about the ‘firsts’ after stoma surgery, whether that’s the first meal out, the first time going to the shops, or the first time using a public toilet. The first time doing something when you’re living with a stoma can be daunting, and even more so if it has been delayed by lockdown or shielding.
We are here to guide you through these firsts, and help you enjoy being out and about. In order to compile these tips, we reached out to our wonderful helpline volunteers, and they have provided some brilliant advice to help you to feel confident. The overarching message from our volunteers was ‘be prepared, and remember no one will know that you have a stoma – unless you tell them’. One volunteer described her first outing after stoma surgery and said “I was quite shocked to find no body looked at my tummy even those who knew I had the operation… if you draw attention to your tummy by walking ‘funny’ or keeping your hand over your stoma of course people will wonder what’s up. No one notices your tummy if you carry on as normal.”
We recommend staying local to begin with and making sure you have a good idea of where the toilets are nearby.
To find accessible toilets you can use Toilet Map and/or AccessAble’s Accessibility Guide. It is advisable to take a Radar Key and photo ID card. A Radar Key is part of The National Key Scheme (NKS) and offers disabled people independent access to over 9,000 accessible toilets around the country in shopping centres, pubs, cafes, department stores and many other locations. Photo ID cards are endorsed by Disability Rights UK and displaying their logo, this can be helpful if you need to use accessible facilities urgently, particularly if they aren’t part of the National Key Scheme. Radar keys (£3.50) and ID cards (£6.50) can be purchased via our shop.
It’s one thing knowing where toilets are, and another thing using them. Someone wont know by looking at you that you need to use an accessible toilet, and occasionally people might look perplexed as to why you are using the toilet – because you have a hidden condition – however you are entitled to use accessible toilets. One of our volunteers has experience this situation and said “Don’t be afraid to use the accessible toilets and if you get funny looks from people just out-stare them or ask them if there’s a problem – in my experience it usually works very swiftly! [People need to remember that] not all disabilities are visible.”
If your stoma is very active, you could speak to your stoma care nurse about over the counter treatments which could slow your output down while you’re out and about. If your output is very liquid, you could consider output thickeners. If you are worried about leaks, check out our advice on managing and preventing leaks.
Our volunteers had plenty of tips to help you to feel confident when leaving the house. First things first, always make sure bag is secure and empty before going out. All of our volunteers said that they ensure that they have supplies with them as it’s ‘better to be safe than sorry’. This includes all your stoma supplies (such as a few bags, a small pack of wet/dry wipes, adhesive removal spray, disposal bags etc) as well as spare clothing and a towel. Some people also pack a peg to enable them to secure the clothes on their upper body out of the way when changing bags.
One volunteer, Sue, shared “I always have Puppy Training pads (Amazon £13 for 50), smaller, neater and thinner than hospital bed pads. I fold these up and tuck between my pants and ensure it covers my stoma bag, so that if the bag leaks, it goes onto the pad, rather than my clothes. I promise you, this tip has helped a lot of ostomates feel safe and more confident.”
Other items that can make you feel more confident are a bottle of water and a mini air freshener. The bottle of water will come in handy if there isn’t a sink in the loo to wash around your stoma if you need to change. The air freshener, although not essential, can cover any odour if you feel conscious when changing your bag in a public place.
When visiting a restaurant for the first time, consider the foods that could make your tummy work ‘over time’. It may be prudent to avoid anything too rich or spicy and also alcohol such red wine. You may want to avoid foods that can lead to the production wind, and cause ballooning (where your bag fills with gas).
We hope you enjoy being out and about. If you would like advice about tackling the ‘firsts’ after surgery, or you would like to speak to an ostomate who has personal experience, or you would like emotional support, you may call our 24 hour Stoma Helpline on 0800 328 4257.