Navigating stoma life outside the home

Navigating stoma life outside the home

Having two children with stomas and one myself, the most important thing for me when leaving the house is being prepared for the good, bad and the ugly! If we don’t go out long enough for anyone’s bags to need emptying, we go about what we are doing to come back home as if we don’t even have stoma bags. However we all know that isn’t realistic for a day out.. 

For starters I am a glorified pack horse, carrying stoma supplies for three of us! We all use slightly different products. No two people are the same when it comes to stoma care, even if you are related and share the same condition. Life would be much easier if it was the case! When you delve into the stoma community, whilst most have stomas due to IBD, there are many of us that have them for other reasons. What unites us is our stomas, and we all manage having one alongside plenty of other symptoms.

Supplies 

Ensure you take out everything you need for a bag change. You can not guarantee where a leak may occur. Even if you never had a leak, for me I know as soon as I start not taking supplies out it would happen for all three of us. We ensure we have a change of clothes for the kids and for myself on a day where we are out for a long time. If we aren’t going far from the car, I’ll leave it in the car, otherwise it’s backpacks for mum and dad. Ensure you do little things to prepare and save time such as cut the holes in your base plate. Another idea could be to have everything for one bag change such as your cut baseplate and pouch, and any seals/wipes in individual waste bags, so you can just take it all out and have the waste bag ready to go. This comes in especially handy when you are caught off guard.

Facilities 

Not every day can be planned out meticulously, especially if you want to go with the flow and be spontaneous. As the old saying goes, the best days often come unplanned! Being prepared for a change of stoma bag with the belongings you carry is one thing, but you can’t guarantee that you won’t end up changing it in the back of the car, or another equally inconvenient place. There are some handy websites and apps you can have in your ammo to navigate public facilities. Having a stoma shouldn’t stop you from being spontaneous and things like this can help ease the anxiety of it all.  

https://www.changing-places.org/

http://toiletfinder.net/

https://www.toiletmap.org.uk/

Card and key 

For most accessible toilets they require a radar key. This can be acquired by your stoma nurse who should be able to give you one. If this isn’t possible, they can be purchased online quite easily. One of the most reasonable is through Colostomy UK for £3.50 here. They also have photo ID cards for if you require access to toilets not part of the National Key Scheme. A ‘Can’t Wait’ card that shows that you have a medical condition that requires use of toilet facilities is also available through Respond and Pelican, which you can keep on you as a back up. 

Friends and family 

Informing who you are with about the possibilities of what could happen, will help if you need practical and/or emotional support. Should luck not be on your side on the day, you may need to visit facilities quickly, your bag may fill up without warning, or you may need an extra pair of hands. I know for me with a baby attached to the hip, I have had to pass the baby to friends or family to hold when out of the house to quickly use the toilet. I have gotten into all sorts of difficulties where there may not be accessible toilets that enable me to take a buggy in with me. If I carry the baby in then where do I put him if there is no changing table?! It’s a minefield! I am figuring it out as I go, and will share again soon.

Stoma bag accessory products 

In the summer with the hotter temperature, some individuals get into problems with their bags sticking the same. Sweat can cause this, and there are lots of ways to help which you should touch base with your stoma nurse about. Make sure to take medical advice when it comes to matters like this, and don’t just take the word of others or social media. For me, flange extenders have been a godsend, especially when running for added security. They act as an extension to the base of your stoma bag, and if you are unfortunate to have a leak on its way to the edge of your bag, it gives you lots of extra time to get somewhere appropriate to change and sort yourself out. Ensure you keep supplies out of direct sunlight and avoid them getting warm, as it can change the composition of the materials. 

Head to the eakin website to get more hints and tips for a stress free summer! 

Until next time,
Rach x