Managing stoma leaks

Stoma life can throw all sorts of curve balls at you. It doesn’t matter how long you have had a stoma, if you have the best stoma nurse guiding you, or your surgery went perfectly, life is sent to try us! As humans we must adapt, learn, take it as a teachable moment and crack on, because what other choice do we have? I am often asked how I do it with two young children with a stoma as well as myself. It is our normal, and we don’t know any other way. We have our routines, we have our support system, and we make the most of the life we have been given. 

Leaks when you are out of the house are for most people the challenge they dread the most. It may very well happen in the early days as you establish the right products and routine. Most people do not stick with the same bag they are given in the operating theatre. Stitches, healing, sore skin and other factors of the surgery that led you to have a stoma, will all contribute to this unpreventable challenge. You will learn very quickly to spot when you need to change your bag to prevent an actual leak. You will find the right products for you, and you should not have lots of leaks. It should be a rare occurrence, and if it is not, seek help and reach out to your stoma nurse for support. Never suffer in silence. 

One unexpected place I have had a leak is in the car. I have broken down before, and while waiting for a recovery truck my bag leaked. I hadn’t emptied it quick enough with the drama of breaking down, and the dreaded itch set it and that was it. I always ensure I have enough products in the car for this occasion, a change of clothes, a throw away sheet which are complementary with Respond that are very similar to puppy training pads. These are fab to tuck into your underwear and let the output and your bag pool over while you wait for the heavens to close and you can get started on the clean up operation. I had to empty my bag first, and with an ileostomy it was very watery which is my normal consistency. With this, I panicked thinking what if this disposable bag has a pin hole in it?! What if I empty the bag and it covers me and the car in everything?! My partner had the very clever idea of putting some water in the bag to check it wasn’t coming out of anywhere first. It worked a treat and it didn’t so I was good to go. 

With a baby in the family we are always armed with nappies. If this isn’t you, it is definitely worth your parents, friends and family to ask for a couple, as they are brilliant for covering your stoma if you have high unexpected output and are leaking. They can be wedged into your clothing and buy you lots of time. The same goes for sanitary towels. You can never be too prepared, and you will thank yourself later. 

Another challenge no one wants to have is a leak on date night. I documented this on my socials to raise awareness that yes it can happen but YOU WILL get past it. Since my recent pregnancy, some foods aren’t suitable anymore. I am navigating the unexpected challenge of leaking sometimes because of it. One minute you are in a bar having a lovely time, and the next you are in the accessible toilets with your partner shining his phone torch for you to see (the lighting was very limited, which is appalling for accessible toilets, but that’s another blog!). We laughed and we got through it. We made a core memory from it, and we carried on with our evening. Did I have stains on my outfit? Yes, a little. Was that going to stop me? NO! I hope whoever is reading this, that you get to a similar mindset one day, if not already. You may never accept or be happy with your stoma, but you will get past the bumps in the road. The sun will set, and rise the next. Each day a chance to be better than the last and learn from. 

Rach x