Balancing work, family and life with a stoma | by Rachel
With the demands of family life ever growing, here I share my top tips to help navigate life with a chronic illness to balance work, family life and stoma care.
Storage of medical supplies
Being able to find things quickly and having a good storage system in place is paramount for the family home to work efficiently. I have been in both situations where I can be on it with this, and where it has escaped me and I have had to claw it back. When I went from one to two children with a stoma, our deliveries doubled overnight, and with medicines and baby supplies I lost my way for a little while. Making proper space for this, labelling, good stock rotation, and letting your support network know where supplies are in case of emergencies really helped.
Having ready to go storage boxes of stoma bag changes upstairs and downstairs was essential in the baby stages. Babies can’t tell you when the dreaded itch starts if a leak is on the horizon, and can cry for so many different reasons. Due to this, I found when you see the stoma bag needs changing, you don’t have a lot of time to react, so having the supplies to hand and not having to carry the baby around the house saves time and discomfort, and your carpets! It goes without saying that a kit in the car, and when you leave the house is a must too.
Informing your place of work
Holding down a job with an illness or children with an illness can be incredibly stressful. Individuals can feel worried and anxious about letting their place of work know. Knowing what to say and how to explain it, and that they may not understand. Be prepared with what you are comfortable to share, and what you need in place to do your job efficiently. Laws are in place to protect you, and you should not be discriminated because of your illness. I have always made a point of being open from the start of a new place of employment. Very early on in an office role I had gastroenteritis come on out of no where during a work day. My bag leaked a huge amount of output, and leaked over my lap in the office chair. I was lucky enough to work very close to home and informed a colleague straight away and went home to shower and get changed. Yes it was an awful experience, but if you are poorly, or an accident happens remember it is out of your control. It can be embarrassing, but that feeling will wash over you and you will not be the last person that has an accident in work whether you have a stoma or not.
Making time for yourself
As the old saying goes, you can not pour from an empty cup. Having a chronic illness yourself, or a child with one, it impacts both your mental and physical health. In turn, this can make the demands of family life even more taxing. Childcare can be one of the biggest barriers where parents/carers are concerned, for you to be able to take a break whether it be for a few hours or a day or two. Your medical institution should be able to direct you to any support in your community, or a charity that could provide respite. If this is not possible, planning little things to look forward to after the bedtime routine can provide some escapism at the very least. Whether it be a TV series, movie, lego set, gaming, or having a games night and a glass of wine or a cuppa, try and make time for you.
Keep going
It is never going to be plane sailing, and you will have hard days and good days. It is to be expected with a chronic illness. But what I have found with my fellow warriors, is that we are made of tough stuff, and we can battle through anything. You’ve got this!
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