Not unheard of right? Some thing people do all the time; without hesitation, without thought, just ordinary and normal.
Not for me.
I’d always loved travelling – I spent a year living and studying on Vancouver Island, Canada as part of my degree, I travelled to and from university a lot and I generally got out and about when I could. But when the IBD struck me in late 2011, it did throw a spanner in the works; I suddenly saw all the things I could no longer do because I had to be ‘careful’ and it was ‘all about my butt’ and ‘its unpredictable needs’. Until I realised all I really needed to do was plan and be prepared.
It is so much simplier now that I have my ostomy. I still check and find the nearest toilets – usually disabled ones because they have the space for my ostomy supplies, if I need to change due to a bag leak – but I don’t have that uncontrollable fear of ‘oh my god, I need the toilet, right now, I can’t relax’ that I had with my Crohn’s. I would hardly ever travel on my own between 2011-16 before the ostomy surgery: partly because I was in pain and lengthy trips would give me more problems but mostly because I was scared I would have an accident in public. I was also scared of just being alone and dealing with that. I wasn’t very confident at all. Speaking about my IBD gave me confidence in small doses but then I’d go back to feeling isolated and disconnected from the world. I actively shyed away from going out without someone with me. It was a bleak time.
Fast forward to having had my ostomy surgery and I just can’t wait to get out and see the world.
I find myself finding things to go and do. I’ve forced myself – which hasn’t been as difficult or as forced as it once was – to go out and do. Even if it’s for a walk and I reward myself with a coffee; at least I’ve gotten out of the house, gotten fresh air into my lungs and my body feels active. That works wonders!
My trip last week involved trains, a hotel, new people and new experiences. All thanks to my beautiful and life changing stoma. Merci beacoup, Colorectal surgeons at my hospital; I am forever in your debt!
My tips for travelling solo when you have an ostomy:
- Be Prepared and Plan: know the route you’re taking, access to toilets and ability to sit and rest. I always try and give myself time so I am not rushing to be anywhere too fast with my luggage. This gives me plenty of time to reach my connecting train or to take an emergency toilet break if needed. I get a flexible ticket on trains – you pay a little more but you get the flexibility of choosing your train times; this helps reduce my stress of getting to my connections.
- Take Food with You: I always take water, no matter where I am going as I need to keep hydrated with my ileostomy. I tent to grab a piece of fruit – usually an apple as they don’t bruise easily – and something salting to snack on – salt and vinegar crisps being a favourite.
- Wrap up Warm: Trips usually over run this time of year with delays, so I layer my clothing. Usually have my coat anyway but I have a long sleeve top, scarf and always carry gloves. I try and bring extra socks and a thin cardigan too; train stations are notoriously cold.
- Bring Extra Ostomy Supplies: I double the amount of bags I carry just in case of a leak. I try and keep to safe food when away but its not always possible so leaks can happen without reason or warning. I always pack more dry wipes too because of the unpredictability of a leak, my stoma is usually active, thus needing more cleaning.
- Can’t Wait card: I always travel with this so I have access to a disabled toilet. I had to use it this time when I found a disabled toilet on a platform locked and I had to empty my bag. The member of staff was excellent; didn’t hesitate or question it, unlocked the bathroom and sort of kept guard which I thought was sweet!
- Music: I tend to find train journeys repetitive so I plug my headphones in and bop away to some songs whilst time passes. Or I do some mental note making about some posts… this brain never sleeps.
Things to avoid:
- Too much caffeine: you will need to empty your bag more frequently and if its more liquid and you have to wait to use a toilet, it can affect your baseplate.
- Making it into a big deal: It was huge deal for me to travel alone so soon after surgery – even though its 3 months. It made me more anxious than I probably needed to be and I found myself getting stressed out by things I couldn’t necessarily control – like delayed trains or loud passengers. Do travel, but please do it at your own pace. Not all of us heal or feel as comfortable with their ostomy as others do, so please listen to your own body.