Planning for a whole day to being more than half-hour out of the house takes thought and preparation with myself and my little man Jake having an ostomy. As a mum, I can’t say I have ever left the house casually with bare essentials and not a care in the world unless it’s a quick trip to a shop around the corner! Now Jake is 5 I am on autopilot when leaving the house and have the necessary things ready and raring to go. I used to suffer from terrible anxiety when he was a baby when he needed to be fed artificial feed via a gastrostomy (a feeding tube is surgically added to the stomach wall to administer feed through a controlled rate per hour and amount). I would overpack from worry I would forget something, and being out would lose its appeal having to drag a weighed buggy around before you put the child in it!
I have gained so much life experience that I never counted on following Jake being born with the same condition as myself Hirschsprung’s Disease. Nevertheless, we all have our own issues in life to deal with and I was definitely being dealt my main share! I quickly realised I had to think more efficiently and plan for leaving the house with the worse scenario of a bag change considered.
Enough supplies for 3 bag changes each
My golden rule is to have enough bags for a change, a backup if it goes wrong, and a third for peace of mind. I do this for both of us along with dry wipes, adhesive remover wipes, cleansing wipes, disposable bags, stoma powder and a spare feeding tube device in case Jakes comes out. I keep these in a toiletry bag with a clear window allowing me to see supplies quickly in an emergency change. Remember if it is a hot day you are likely to perspire which may require you to change your appliance more frequently so increase your supplies accordingly. Equally, if supplies are left in a warm place for long periods of time it can impact the effectiveness of the adhesives. Ideally, they should be kept in a cool space.
Where medication for Jake and myself is concerned I always bring the necessary medication needed plus an extra dose for us both. This is in case it gets lost or something goes wrong when preparing it. Jakes are administered via a feeding tube and need to be dissolved in water before being drawn up into syringes and pushed down the tube. For this, I always bring water from home rather than having to buy or look for safe water out of the house. If I can prepare them ahead with time allowing I use a cooler bag for hot days. Children’s insulated lunch boxes are brilliant for this.
Pre-cutting your base plates will save time and space with no need to be carrying scissors around. I fold the bags in half to protect the cut hole and save the protective plastic coming off with the bag less likely to adhere to the skin if this happens. On a warm day, I always keep these in a cooler bag. If you are somewhere where your car is never far away I usually keep my stoma supplies in the car and take just 1 bag change for us both. With it being a year following my stoma surgery it is only now that I feel confident enough to pop quickly into a shop leaving everything in the car. If I have eaten stoma safe foods and am having a blockage free day this is good enough for me. I also keep a change of clothes in the car for us both. Luckily I have only needed this once in 12 months but thank goodness I had them!
Hydration and snacks
We typically drink 1.5-2 litres a day however ostomates may be directed to drink more due to water not being absorbed according to what bowel you have left following surgery. Where me and Jake are concerned, having no colon means we need to drink more with the colons main job to absorb water and sodium. For long days out drinks with added electrolytes are useful if you are feeling dehydrated.
Radar key/blue badge/invisible disabilities sunflower lanyard
These can be a lifesaver in a sticky situation. Radar keys give you access to public disabled toilets in the UK and alternatives can be found in Ireland and the EU. Ask your stoma nurse who may kindly send you one. They can be purchased on the website below with a toilet card for £3.95. Toilet cards indicate you have an invisible illness that can be presented if needed if your needs are not obvious. If applicable a blue badge allows you to park a vehicle in disabled spaces. These are sent out for free if your application is accepted. A sunflower lanyard is another free way of making a hidden disability visible which can relieve anxieties when needing access to disabled facilities.
Knowing where facilities are
Toilet anxiety can be a terrible barrier for leaving the house for someone with a toileting issue, so being prepared and knowing where they are can make all the difference. Apps and websites such as the one below will pinpoint where you are and show you the public toilets. A group of organisations called Changing Places has a website that shares where changing facilities are in the UK. They work to support the rights of people with profound and multiple learning disabilities and/or other physical disabilities. More information can be found on their website.
If you are unsure a place is suitable and their website isn’t informative enough most places are happy to inform you over the phone or via email. Plan ahead and give yourself enough time to plan and prepare for a good day out. I learnt over the years where the best facilities were and which establishments truly care about supporting people with extra requirements. Tourist attractions and entertainment venues may offer a concession rate for entry of carers and the disabled so don’t miss out on that discount! As the country opens back up and travelling further field becomes more possible Pelican Healthcare have a travel guide to answer the most frequently asked questions.
Take care, Rach x
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