Leaving the house when you have an ostomy in the early days post surgery can be quite daunting..
You are sore and perhaps bloated from surgery, not feeling quite like yourself. You may be relying on medication, and testing your food tolerances with your new accessory to see what you can and can’t tolerate. With all this in mind, what seemed as simple as going out to catch up with a friend over coffee can bring up many questions:
- What toilet facilities are there?
- Do I need a radar key if I need disabled toilet facilities?
- Will I need to empty my bag there? (You may not have done this in public yet)
- What happens if my bag leaks and needs changing?
- Can I have caffeine?
When you feel mentally ready to go out in public, if you are prepared for anything, taking that step and being a success is the best feeling! That said, if you do come to have a mishap its a great opportunity to learn and prepare yourself for the future. I met my best friend in a coffee shop to see her for the first time post surgery. Our favourite thing is coffee and cake so not thinking I had a large latte and a slice of cake. When you have been restricting yourself to test the waters with food this was definitely NOT what I should have done! Of course my bag leaked and I quickly learnt I couldn’t tolerate caffeine like I used to… I had to head home for a shower ASAP, (it was that bad) and its safe to say I learnt my lesson! Many ostomates have found post surgery that caffeine contributes to leaks and especially if you have an ileostomy contributes to dehydration more so than most. I had not been told about caffeine post surgery, and my then 3 year old wasn’t on the hard stuff so that was a lesson learned the hard way for sure.
For my own on the go kit..
I have 3 ostomy bags (1 to change, 1 if it doesn’t stick and a back up), barrier rings, REFRESH 3 in 1 spray
(adhesive remover, barrier spray, fresh linen scent), dry wipes and disposable waste bags. I also have a mini pair of scissors as I like my bags not cut. It all fits nicely in my ‘just in case’ bag and it goes with me to work and meeting friends. When it is me and my little ostomate, as well as my supplies I do the same for him except for the addition of barrier wipes and Absorb capsules for solidifying the stool to prevent leaks. I have a bigger bag for us both and keep mine and our together supply bag separate so I can just grab them when needed.
In the car I have an outfit on stand by should I have a leak bad enough to deem a wardrobe change necessary there and then. Thankfully I can say this has only happened once in 2 years. Jake and I were in Tesco car park after a food shop and I had put off emptying my bag due to just wanting to get it done and home with the little one wanting a pee every 10 minutes! I sat in the car after packing the car and my god did I regret that decision… Sitting down gave my bag all it needed to pop open at the top. My on the go kit is always in my handbag so it was a case of grabbing some dry wipes and doing a quick bag change. This would have panicked me before, but when you have navigated a newborn in these situations my rational mind tells me I'm an adult, I know what I'm doing, just get on with it. I won’t let it dictate the tone of the rest of my day.
In the car...
Also in my car I have a toiletry bag of 3 bag changes for both of us in the boot. I haven’t needed to use this to date but always feel safer knowing if we broke down, got lost, or I forget my handbag supplies, that I always have my plan C. This may sound excessive to some, and maybe it is, but when its not just yourself and there is a little one you need to care for with an ostomy, I feel having a back up to my back up is more than warranted. In the newborn days I would carry plenty of Comfizz Junior XS Waistband Level 1 Support, nappies, disposable tissue underpads and a change of clothes. I found that many disabled toilets didn’t have a changing table, which is essential when changing a baby’s stoma bag. I would have to resort to a table or the floor hence the under-pads being part of my kit. These days being nearly 7 I don’t need to carry these around as he can be changed standing up.
You will never be disappointed to have prepared too much, and for those times it was necessary you will be chuffed to beans you were! It is important to say that if you find leaks and unexpected bag changes a regular occurrence, then contact your stoma nurse as it may be a sign that a product you are using isn’t working and it is time for a change. Comment below if you have any questions and I would be happy to help!
Until next time, Rach x
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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