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.
If you’re anything like me, you love the idea of a good get-together: friends and family, laughter, your drink of choice, good food, fairy lights and cosy vibes (if you’re not too exhausted that is, the joys of IBD and anxiety). But when you live with an ileostomy, for many, including myself, socialising can come with extra thoughts and worries. You might wonder ‘do I have a spare bag change just in case?’, ‘is there going to be food there that I can eat?’ or ‘can you see my ostomy bag in this?’ when trying on your get-together outfit.
Over the past 14 years of having Stacey stoma, I’ve thankfully been able to attend lots of get togethers and social events. The good news is that with a bit of preparation, the right mindset and reminding myself that I’m more than my stoma, I’ve learnt to mainly go into events feeling confident (though there are those I find tough too – I’m only human afterall!)
In this post, I’m going to share some practical tips with you to hopefully help you enjoy the upcoming festive celebrations more.
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.
Before a social event
Make sure you’ve got your spare ostomy supplies kit sorted and ready to go. I carry 2 spare ostomy bags, a few dry wipes, a couple of barrier wipes and a barrier ring, along with a few disposable bags. Having this kit on my person gives me peace of mind. I also carry a little bottle of ostomy deodorant drops, which helps me worry less about emptying my bag outside the house. Let’s face it, everybody poos, I just do it more efficiently out of a bag! But in all seriousness, it eases my anxiety, especially if you are around people you don’t know and it’s a case of a one in, one out toilet instead of cubicles.
I also often change my bag an hour or so before heading out to a social event. Having a fresh bag also helps my mindset when it comes to social events with an ostomy.
Choosing an outfit to help my confidence
If you’ve read my blog posts before, you’ll know by now that I’m a big advocate for stoma supportwear, especially when it comes to wearing the clothes I love. I thankfully discovered stoma supportwear before my ostomy surgery, and there’s no doubt that it’s been a game-changer when it comes to the outfits I wear.
My ostomy doesn’t really restrict me from wearing what I want, as I’d never wear really tight clothing anyway, but I do love a figure-hugging dress when the mood takes me. I always make sure I’m comfortable in what I wear as that’s my priority, but I also like to feel confident in how I look in the clothes I wear. It’s always best to go for comfort over tight and restrictive.
You could choose layers that make you feel good in, but also make it easier to check or empty your bag in, and with the festive season approaching, patterns with sparkles or sparkles on their own can add a little bit of literal sparkle and magic to your outfit.
What do I do when it comes to food and drink?
Festive celebrations often call for a good buffet, which is quite good when it comes to stoma life, as you can literally take your pick and there’s usually something on offer that you can eat. No two people are the same with their stoma, and it’s important to remember this. What food or drink might cause problems for one, may not cause any problems for another. It really is down to the individual. There’s no pressure to eat everything and it’s so important to listen to your body.
When it comes to alcohol, again, listen to your body and drink wisely. You know how your body responds, or if you don’t yet (if you’ve recently had your stoma) then it’s best to stick to trying one type of alcohol in small amounts, with lots of hydration alongside it. That way, if it causes an issue, you’re more likely to spot it before you drink more and it gets more of a problem. I usually stick to red wine, because I’m usually okay with that, but I’m not a big drinker anyway, so it doesn’t bother me to have non-alcoholic drinks in between to stay hydrated. Fizzy drinks can give me more wind, and water on it’s own often just washes me out and makes me feel dehydrated.
For festive treats, maybe there’s food that you used to avoid before your surgery that you might want to give a go. Again, it’s best to try it in small amounts in case a problem arises, and to try one new thing in one sitting, so that you are more likely to be able to tell what caused a problem if there is one. It’s important to chew thoroughly, eat slowly and maybe avoid rich foods which might cause more problems when trying to digest such as Christmas cake. But again, everyone is different. There’s no one size fits all.
Check in with your comfort zone
They say life begins at the end of your comfort zone, but honestly, it’s all about balance. At social events, you may find you feel more tired than usual, and that’s okay (I know it well). Give yourself permission to leave early or find a quiet corner or space where you can have some time to recharge. Social events can be fun, but it’s important to listen to your body. We all have our own pace.
You might even want to empty your ostomy bag before you arrive, and before you leave, to make sure you feel comfortable. Again, ostomy output is different for everyone, so when it all comes down to it, use the bathroom proactively, when you need to, and make sure you’ve got things with you that make you feel comfy. It could be deodorant drops as I’ve mentioned, a spare ostomy kit, and even a little body spray or loo spray.
If you feel anxious, have a plan in place to help ease your mind. Maybe there’s a friend you can nod to at the event, or text if you feel uneasy, or maybe you step outside for a moment if you need a break. Having that safety net in preparation can help you feel more relaxed.
After the event
Give yourself credit – you did it! You showed up and you took part. If you’re anything like me, sometimes the thought of showing up and taking part can be worse than the actual taking part.
If there were things at the event that felt tricky or maybe made you feel uneasy, note one thing that you’d do differently in future. An example could be taking extra dry wipes, or having a snack before you go. It may even be having a restful day before attending an event.
Make sure you have your ‘you’ time. Time to recharge your batteries (as much as you can anyway) is essential. Socialising takes a lot of energy.
Respond’s blogs
Respond have some inspiring and helpful blogs on their website, including:
- Managing fatigue and energy levels with a stoma by Poppy
- Staying positive with a stoma and beating the Winter blues by Maryrose
- Talking to friends and family about your stoma by Mohammad
For so many, including myself, having an ostomy wasn’t the end. It was just the beginning. You can go to the party. You can wear the outfit you love. You can join in with the festivities with friends and family. Your stoma is just part of your story. Socially, you still have a voice, a personality, and you still have a presence. You still deserve to have so much fun.
Here’s to embracing the magic of connection in the festivities, being thankful for being here, and embracing the season with an ostomy bag and a smile!
You can message me and follow me on my stoma journey on Instagram: @ibdwarriorprincess
