What is a routine? To me, a routine doesn’t mean doing the same thing every day. It means to do what feels comfortable for you.
I thought I was doing it all wrong, until I realised there is no ‘right’ way. My routine will change depending on my energy levels and my plans.
Early days with a stoma
I didn’t establish my routine overnight. It took a long time to feel even slightly confident and that wasn’t before leaks, skin irritation and frustration. Learning through trial and error is normal. There will be many products and methods that didn’t work before you find out what does. I’ll be honest, I didn’t even know what stoma powder or seals were!
Signs that your routine is working:
- You’re not constantly checking your bag
- Fewer leaks
- Skin feels calmer
- You feel more confident
What my typical routine looks like
My routine isn’t strict. I aim to change my bag every evening before bed, going to bed with a fresh bag always helps me sleep better. I keep all my supplies readily available in my bedside drawer so I don’t have to scramble to find anything when I am tired. But the truth is, I don’t always change my bag every day. My routine adapts to my energy, meaning some days my body needs the rest more than it does perfection. A lot of the time, I will judge things based off feel and not wear time.
In the evening, I sometimes like to give my skin air-time. Meaning I will chill and watch a film with my bag off to let my skin breathe. Although this isn’t always successful, or stress-free…
Part of my routine isn’t all physical, it’s the mental reassurance that I have done everything that I can do that day. I find my body has patterns, so there are times in the day when my stoma is more active, and other times when it’s quieter. I try to plan my bag changes during these less active times. It is especially active after meal times so I avoid these!
Comfort is the foundation of any routine
If it feels wrong – it probably is…
Every person with a stoma is different, meaning how they feel comfortable is different. Personally, I change my bag laid down on my bed as this is where I feel most comfortable. I know a lot people find standing in the bathroom easier.
Comfort isn’t about copying what you see other people doing but about following your own bodies signals. If I ever feel an itch or a burn under my bag, that’s an indication it needs changing; for me this normally means the beginning of a leak.
Sleep was a big one for me – I found myself losing sleep from emptying my bag during the night so much. Everyday activities became difficult because I was exhausted all the time so I made a few changes to my routine:
- Fresh bag right before bed
- Eating dinner before 5:30pm
- I wear a stoma bag with a larger capacity – ModaVi in size large
- Empty right before I settle to sleep
Thee steps have made my nights more manageable. I can now sleep through the night 90% of the time without having to get up to empty.
Skin care as an essential, not an after-thought
You’ve got to think, your peristomal skin has a bag stuck to it almost 24/7! It doesn’t often get a break, and it’s paramount this skin is looked after.
I have a few skin conditions: Pyoderma Gangrenosum and Psorasis, so this one is especially important for me! To me this can include using my prescribed steroid creams as directed, or even gently removing my bag with lots of remover spray to prevent flare-ups. To get my skin clean, I use soft dry wipes and water – this is what works best for me. And if I have any stubborn glue or residue on my skin, an adhesive remover wipe works perfect.
Top tip: ensure your skin is thoroughly dry before application of any products, this prevents fungal infections and ensures adhesion.
When your routine needs to change
Sometimes we have to adjust when life changes; this can be down to bouts of illness, flares, travel, stress or anything.
For example, I started having leaks over the past few weeks and I couldn’t figure out why, or what had changed. I figured it out! I’ve recently had some weight loss and because of this my routine had to be adapted. My belly shape changed, and my stoma slightly changed as a result. I found a firm convex bag worked better for me and a stoma belt to keep my bag flush with my skin. It’s not failure, it’s adaptation.
Reassurance
It’s ok to not have a routine yet, or to still feel like you don’t know what you are doing. I have lived with my stoma for 4 years now and some days I still feel like I don’t know what I’m doing – it doesn’t mean you are failing! Your stoma journey is allowed to be slow and messy. You will find what works, even if it takes time… and a lot of getting it wrong.
Stay true to yourself!
Appreciate you all
Alice x
@living.with.ileostomy
