When you first get a stoma, you’re often shown a routine and told, “this is how you’ll manage it.” But what many people don’t realise is that stoma care is rarely static. Over time, life changes and so does your stoma. From motherhood, to body changes, and everything in between, my routine has had to adapt more times than I ever expected.
Life, and the many curveballs it likes to throw at us, means our stoma has to roll with the punches. It is very rare that someone can go the entire duration of having a stoma sticking to the exact same products and routine. If this is you, count yourself very lucky!
While it is not advised to change anything in your routine if it is working, you may find that luxury taken out of your hands, forcing you to look at other options. Research and development mean we have more options than ever before. We all deserve the best quality of life, and by working with your stoma nurse, who should always be consulted with any change, that is more possible than ever before.
How my routine started
Waking up to your new stoma and seeing the clear-window stoma bag is something a lot of us will remember as quite a shock. Even if your surgery is planned and you have done some research, your brain is not wired to see your internal organs on the outside. That alone can be the first hurdle.
I had a son with a stoma already, who I cared for every day and night, yet when it came to me, I was shocked and couldn’t face looking at it. Still to this day, I can’t find the words as to why. A stoma saved my son’s life, and it was doing it again for me. Quickly, I came to realise the stoma bag issued by the hospital wouldn’t work for me. My stoma was very flush to my tummy, and the leaking didn’t stop, which resulted in me needing surgery five weeks later to have it refashioned.
Those five weeks were a blur of calamine lotion, stoma powder to help with my extremely sore peristomal skin, disposable bed sheets, and so much washing it felt like it was taking over. I tried finding a stoma bag that suited me better, but it wasn’t possible until the refashioning surgery.
How it changed
Fast forward a year, and my new stoma was working. It protruded higher above the tummy, stopping the non-stop leaks. I used stoma powder to help heal the skin, along with a barrier spray to protect it.
The ModaVi was launched, and my stoma nurse and I agreed it was my best option – I have never looked back. It was easy to change, with Respond contacting my stoma nurse and sending out my new products when I needed them.
In the years that followed, I became pregnant with my youngest, and with the expansion of my tummy came the enlargement of my stoma. With very little to compare it to, and again with input from my stoma nurse, I had to move up to the maximum size baseplate and change from a convex base to a flat base.
Other than that, my routine adapted to just using REFRESH 3in1 spray, as I no longer needed stoma powder. I liked the formulation and ease of the 3in1. The fewer products, the better – it helped streamline my routine.
How it’s going
The change in body shape postpartum came with a fresh set of challenges. As my tummy flattened after my baby was born, my stoma didn’t want to play ball again. At this point, we introduced a seal to act as a cushion and barrier while my body continued to change. I went back to a convex base, as the flat base was no longer sitting properly on my uneven tummy. I also changed to a two-piece system, as it seemed to adhere to the skin better following all the changes.
I was worried about how the bag would adapt as my body had gone through so much, but I made sure to take my time with bag changes, monitor things closely, take photos of any changes, and advocate for myself if something didn’t feel right.
My takeaway
My routine is now quick, and with the addition of a seal, I have the added security that if I do leak then I have that extra layer of defence. I’ve learned to roll with the punches and accept that things don’t always stay the same forever.
There is a lot changing and developing in the world of ostomies, and it can feel like a lot to keep on top of. If it isn’t broken, don’t fix it but if something isn’t working, it’s ok to explore changes. See what others with real-life experience are sharing, and always consult your stoma nurse first.
What works for one person may not work for another. Above all else, make sure to advocate for yourself. You deserve the best quality of life possible.
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