Hi readers, it’s such an honour to take up a regular column in this wonderful magazine! Some may know me as @gutsy.mum on Instagram, where 6 years ago I posted a photo of me and my newborn son with the aim of connecting with others and raising awareness of stomas. You see, me and my little ostomate J are special, because we were both born with Hirschsprung’s disease, a birth defect where missing nerves in the intestine cause problems with passing stool. We needed the exact same amount of intestine removed, due to the ganglion cells, whose job is to move waste along, being non-functioning at birth. This required ileostomies to be formed, and as they say, the rest is history. Now, at 33 years old, I am a wife, mum and step-mum. I have had a stoma since birth, an ileostomy reversal and, a few years ago, another stoma. For J, it has meant a stoma since birth, a feeding tube and 10 operations to date.
Rachel relaxing by the seaside
A very British holiday
As I write this, it is blazing hot. We are all moaning about how warm it is, and half of us are sleeping downstairs in a desperate attempt to keep cool. When this is published, it may very well be raining and cold, with some of us wishing we felt the need to sleep downstairs again. My family and I have enjoyed 10 glorious days in Sutton on Sea in Lincolnshire. We stayed in a caravan, and it couldn’t have been more British if we tried. Fish and chips, beach days and old-fashioned fairground rides were enjoyed by all. But how do you navigate such a holiday with two family members living with a stoma?
Gutsy Mum’s top tips for enjoying your holiday with a stoma
- Radar key: A radar key proudly lives on my bunch of keys. It was kindly sent in the post by J’s stoma nurse, but if you cannot acquire it that way, they are available to purchase online for around £5 on Amazon. It provides access to around 9000 disabled toilet facilities in the UK. At seaside locations where public toilets are available, there is sometimes a charge. In Sutton on Sea, it was 40p. When you need to empty your bag, check for leaks or at the very worst need an emergency bag change, you are within your rights to use a disabled toilet. Though these may not be chargeable, it is more than likely you will need a radar key to access them.
- Can’t Wait Card: This is not something everyone carries, but it is now available digitally, courtesy of the Bladder and Bowel Community at www.bladderandbowel.org/news/just-cant-wait-card-goes-digital/. This can be downloaded on iOS and Android and means that, if you do feel you need to use toilet facilities that are not typically available to the public, you can present the card and use them (if the place in question allows).
- Windbreaker jackets: These were a saving grace on holiday when I needed to change my bag unexpectedly. In one instance, I had left it too late to empty my bag, and, with going in and out of the sea, I was having problems with leakage. This is where the windbreakers became a private stoma changing room, as I didn’t need to leave the beach to find a toilet, which I didn’t have the time to do. I’m not suggesting you go out and buy them because you have a stoma, but, if you do have one, take it.
- Talcum powder: While we are on the topic of beach days, talcum powder is something I won’t go without. It is great for getting sand off your feet for starters, which everyone in the family will appreciate. After a dip in the sea and a play in the sand, my little boy ends up with sand around his base plate which gathers and becomes a pain. This is where I just sprinkle some in my hand and wipe around the baseplate which makes the sand gently come away, leaving J nice and comfy. I always buy the travel size talcum powder and leave it in my stoma bag kit.
- An ostomy changing kit: As a rule of thumb I always take a bag change for me and J, plus an extra bag in-case the first gets dropped on the floor which compromises the adhesive. I try to slim down the products we need and share them. For example, we use 50ml spray can of adhesive remover, which also acts as a barrier film and gives off a fresh linen scent, which is perfect for us both to use on the go.
- Quick-access passes: If you are going to a theme park or somewhere similar, ride access passes are important to avoid long periods spent waiting in a queue, which can hinder your experience. You should be able to enjoy just as much as other customers, without your condition affecting you. Many theme parks provide quick access to rides for disabled customers, but this isn’t always easy to see on a website. Unless I have heard through word of mouth or a Facebook group, I ring the company and ask. In most cases in the UK, you can pop along with either a letter from a medical practitioner stating your medical condition, a photo of your blue badge or statements from your Personal Independence Payment (PIP) or Disability Living Allowance (DLA). It’s best to check and prepare what you need to do, with plenty of notice. While you are at it, you can ask if there is a concession price; this concession price may also be possible for carers. For our trips, I get a free ticket for myself, as I’m J’s carer, and we receive fast-track passes for rides at theme parks.
Find a space
Above all else, you deserve to have as stress-free a holiday as everyone else. Not easily done when you have little ones I know. It can be an anxious time being away from home where everything you need is not exactly where you keep it. I don’t know about you, but when it comes to changing mine or J’s bag, I don’t even think I’m on autopilot. When it comes to staying in a smaller confined space, like a caravan, it can be easy to lose things, hard to find storage and often find bag changes stressful. My advice is, it’s best to find a space (if you can) and use that just for your ostomy supplies. I lay everything out ready for the next bag change for us both, so it is all to hand. I make sure to take puppy training pads as a cheap, disposable solution to protecting the floor, and I use clear wash bags so that I can find things quickly. If you are yet to go away, I hope you have a fabulous time. If you have any questions, whether they be big or small, please don’t hesitate to send them to me via @gutsy.mum on Instagram. Wishing you a healthy and happy Autumn, until next time.
‘It couldn’t have been more British if we tried’
Rachel Allen writes about parenting with an ostomy for StomaTips