Having stoma surgery is life-changing, and for many, including myself, life-saving.
I’ll briefly set the scene and give you the background info. My stoma, ‘Stacey’, was formed in 2011, when I was 19 years old. I needed her due to severe Crohn’s disease (a form of Inflammatory Bowel Disease (IBD)) and due to a large, benign tumour on my colon, the size of a watermelon. Surgeons didn’t find this until they operated. If surgeons had left things even a few hours, I was told I wouldn’t be here, so she literally saved my life.
The summer season brings a good choice of festivals when it comes to music and lifestyle. That being said, when I went to my first festival with an ostomy, it was something I felt apprehensive about. I worried about picking where to stay, what to take with me, what to wear and even how I’d stay hydrated. In this blog post, I’m going to explore those things and address some of the things you might worry about having an ostomy, when it comes to going to a festival.
Please note that this is with regards to my experiences living with an ileostomy and using a one-piece, drainable ostomy bag. Let’s get started.
Choosing a festival
When it came to making a choice of what festival I’d go to, the first one was Radio One Big Weekend in 2017. Since then, I’ve done festivals at Gunnersbury Park in London, Leeds and Download Festival to name a few. Download Festival has been my most recent, back in June.
I love what festivals offer in the sense of if there are a number of your favourite artists playing then it’s a good way to see them in one place. Festivals have a completely different atmosphere too than going to gigs inside, and I really enjoy that.
I didn’t ‘choose’ a festival with my stoma in mind. I picked ones that stood out to me naturally and went with the mindset that if I wanted to do a festival, I would, ostomy bag or not. I’ve never had “problems” at a festival, barring I will say that sometimes portaloos aren’t the best and you have to plan for this, but festivals now have accessibility tickets that you can apply for for help with priority toilets and queue jumps, for example.
The festivals I have done have all just been a day pass, and I haven’t camped. The thought of camping anyway is something I’m not keen on in general, even without my ostomy bag being in the picture.
Choosing where to stay
I usually choose to break up a trip to a festival with staying in a hotel the night before and after leaving the festival on the day. I do prefer taking the car to travel if I’m travelling with my husband or someone else, but I don’t mind taking the train sometimes, it just depends on the cost. I do prefer car travel because it’s easier as you can stop when you need to, take things at your own pace and you’re also not restricted on what you can take (within reason, of course!)
Usually, I pick somewhere like a Travelodge or Premier Inn as they’re often quite a good price and you generally know the sort of room and setup you’re going to get. That helps put my anxiety at ease as I know there will be clean bathrooms etc and plenty of space for me to lay out my stoma supplies etc, and generally a relatively comfy bed to sleep in. One of the main things I struggle with is fatigue, so this is particularly important.
I also usually take a porridge pot for breakfast which you can add boiling water too, and/or fruit, and if I can, I’ll pre-pack snacks that don’t need a fridge to help with food and drinks spends.
Choosing what to wear to the festival
Before my first festival, I was so worried about being overwhelmed with this, but I did some research into what each festival would be like in terms of setup. Preparing in this way and in advance can help you to feel more in control. For example, you know whether it is all outside, or if there are some areas undercover, so you know what decisions you might have to take into account for the unpredictable British weather! I try to plan for all weathers as much as I can, so that usually involves layers which I can easily remove or add.
I usually opt for an outfit with high waisted shorts or a skirt, or a floaty smock dress with cycling shorts underneath and of course, stoma supportwear for my underwear, just to help me feel more secure and supported. Not wearing anything too restrictive gives me peace of mind so I don’t always have to be planning on when the next toilet trip will be. I wear a bigger ostomy bag and put it on fresh the morning of the festival, so again, I can get away with more output going into my bag before I need to empty.
Choosing what stoma kit to take
It’s not uncommon for security reasons for you not to be able to take anything bigger than an A4-size bag into a festival. I usually take a mini backpack with me, along with my emergency stoma kit (I’ll list what this includes shortly), bank card and my driving licence as ID, an emergency rain poncho, extra tissues (usually x2 travel packs) because the ones in the usual portaloos usually run out quick, ostomy deodorant drops (a mini bottle), hand sanitiser, paracetamol, anti-sickness (just in case), sachets of rehydration solution and loperamide melts to slow my output down, if needs be. If allowed, I also take a few cereal bars or small snacks and a refillable water bottle.
I usually take my stoma kit in a medium size make-up pouch or toiletries zip-up bag and it includes:
- 2 to 3 spare ostomy bags (when I’ve had leaks, thankfully rarely, I tend to get a few in quick succession)
- 3 to 4 barrier wipes
- 3 disposable bags
- Ostomy extenders, just in case I need them for adhesion (these have always been a ‘just in case’. I’ve never used them
- I have the tissues to use as stated above if I do have a leak
- A hair bobble so I can tie my top up out of the way if I need to if I need to deal with a bag change
What I’d do differently going forward
My festival/gig routine works really well for me but for Download next year, I’m going to apply for an accessibility pass for the accessible toilets area. This year, I really needed to empty my bag and the queues were horrendous (we’re talking a 30-40 minute wait!) Luckily, staff who were on the accessible toilet rota at the entrance let me in, after I showed them a Can’t Wait card which you can get for free from Guts UK charity. Crohn’s and Colitis UK also do them if you become a member. This made me realise that I need to be more prepared next year, just in case I didn’t gain access with that card. These cards don’t guarantee access, but they can really help.
Respond’s useful advice and support
Respond have a blog full of posts from other ostomates on their website. Some blog posts in their lifestyle section are:
- Travelling with a stoma – by Maryrose
- A caravan holiday with a stoma – by Rachel
It’s so important to speak to your stoma nurse or a healthcare professional if you are worried or concerned about anything.
Can you go to a festival with an ostomy?! ABSOLUTELY!
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning.
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
