Festive experiences with a stoma

Having children with a chronic illness can mean adapting the activities and experiences that you attend over the festive period. Where toileting is involved, the most important thing is to ensure you check the facilities are adequate for your child’s needs before attending. If you are a carer and have the relevant documentation, be sure to take advantage of a concession rate if attractions have that option. I am pleased to say that more establishments are displaying signage representing hidden disabilities, making it less stigmatised for those of us who live with a hidden illness that require us to use disabled toilets. I always carry a radar key which opens the majority of disabled toilet facilities in the UK. You may be lucky enough to be given one by your stoma nurse following surgery, or you may have been sent one from your delivery company. A ‘can’t wait’ card or something equivalent can also be used. If I want to find a new place to go in a new area, social media groups are a great place to do some research, asking other parents and carers where is suitable in terms of facilities. Nothing beats first hand experience.      

Deliveries 

This time of year can bring anxieties that you may struggle with your stoma supply deliveries with there being bank holidays. Delivery companies should be letting you know in good time when these dates are. If you rely on phone calls to place your order, for peace of mind you could make the call yourself and secure your order. If digitally is your way of ordering, get it done when you can. No one should find themselves caught short with stock over the festive period, and companies allow for more time needed to navigate this period so please so not panic! Make sure to keep on top of your own stock check, and order what you need to. Always have some buffer stock should you become poorly and need to use more stoma bags and accessories than is typical. Keep rotating your stock as it has expiry dates. 

Hospital admissions 

If your health condition means you have a vulnerable child that is usually in hospital this time of year, then my heart goes out to you. Normally I am in for a week or so for this very reason, the closest to Christmas being Christmas Eve. Although hospitals will try their very best to make sure children can get home for Christmas Day, even if just for a few hours, there will be plenty across the country that can’t. Have you thought about volunteering or raising money, your time, or donating a gift for those in this difficult position? If this sounds like something you would like to do this year, please reach out to a charity or hospital that means something to you and offer your hand. They would be so grateful, I am sure of it. 

Diet

We see a lot of ostomates talk about how they can eat anything and nothing has changed for them digesting food. On the other hand, you will see others that have had to adapt their diet, be very careful what they eat, and can have stoma bag leaks caused from consuming certain foods. Listen to your own body and keep to what you know. It is hard when there is more food around you, and if there is lots of what you can’t tolerate you may feel like you are missing out. I know alot of us will still sometimes have what they know may not be best for them, and accept what might happen as a result! It is your body, do what is best for you. Ask your stoma nurse for advice if you have any queries and remember to chew, chew, chew! The more it is broken down the better chance it has of absorption. If you suffer from food allergies, the shops are getting better and better each year with their festive offerings in the free from sections. I always follow some well known allergy social media accounts who share the newest additions so I can catch it before it sells out. 

A lot of what comes with a chronic illness is mourning what you were like before illness if it wasn’t always that way, the changes to your life, your body, and your relationships if applicable. Try and focus on the positives. What can you do now that you couldn’t if you have found a treatment that helps, or have had to have stoma surgery? There are lots of things to do and be grateful for this time of year, try and home in on that, as hard as it will be for so many of us.  

Rach x