If you are new to the ostomy community, one of the first questions that may be on your mind is ‘how long should my stoma bag stay on?’. Unfortunately there is no definite answer (annoying I know sorry!). It should be changed when needed, preferably before you have a leakage starting and not so long that you see your baseplate start to give way. As you get into a rhythm of your stoma routine, and you establish when it is safe and comfortable for you to change it, it will become as automatic as getting up and brushing your teeth in the morning.
A lot of the answer depends on what type of ostomy bag you use...
Firstly it depends on which type of bag you have. If you have a closed bag where you can not empty it after a bowel movement, typically chosen by colostomy patients, then you need to change your stoma bag after every movement. If you have an ileostomy like myself, you may be advised to go for a drainable bag due to the looseness of your stool, and be able to empty your pouch when it is approximately a third full, and then change the whole appliance completely in 2-3 days.
There are many variables that dictate how often you may need to change it. For me I change mine every 1-2 days. I have a low residing stoma which it almost flush to the skin, making my bag endurance time shorter than those without this issue. Due to several surgeries as a child and adult and this being my second stoma, my anatomy didn’t play ball during my stoma surgery in 2020. It began to relapse back into the stomach making more surgery urgent to form it again, hence the name ‘refashion’. This is something that I was not made aware of being a risk, and when asking the community through my Instagram awareness page @gutsy.mum, others hadn’t been made aware either.
It can be quite the shock when you find out you need more surgery, when you expected to go home and set the ground running into stoma life. Situations like this are not made visible due to censoring on social media, and quite frankly the photos I have of when it was at its worst are horrific! It's enough of a shock to see part of your intestine sticking outside of your body, but to see it then go back in is horror movie madness that I didn’t sign up for! Despite this, you learn to roll with the punches in this life where chronic illness is concerned.
I always tell my son you are only given what you can handle, and it's that mentality which can serve you well during stoma life. It sucks at times, it is hard, draining, relentless, but you will find your new normal. Your stoma nurse will advise you after surgery when sent home on how often to first change your bag. For me and many I have spoken to, there can be a few leaks in the early days as the stitches may cause this, as you get used to doing bag changes yourself, and cutting your hole right in the base plate. This is all a learning curve and you shouldn’t worry. I had been caring for my son who has had a stoma since a few weeks old who was 4 when I had my surgery, and still I took a month to get my head around doing it for myself!
You may find if you are very active and play sports, go to the gym, swim, or anything else that makes you sweat that you need to change your bag more often. I schedule my runs before I change my bag so as not to use more supplies because of this. For some people they may find they don’t need to change it because of being active. Your bag should not come off during such things, however if that is happening you may need to revisit your stoma routine, which products you use, and if your bag is right for you. A great product to use when being active is flange extenders, the clue is in the name where they extend the surface area of your baseplate (also known as a flange) . They adhere to the skin very strongly, and if you have hair on your stomach you will certainly want to shave before putting one on as boy will that hurt coming off!!
Some things to remember when making sure your bag can function well for as long as possible include:
- Cut the hole to the right size. Use the cutting guides with your deliveries until you are confident in your stoma size. Remember it will change after surgery and shrink so the size it is after surgery is not necessarily what the final size will be.
- Using the right products for you. You will know if something you are using is right for you. You shouldn’t feel discomfort, itching or soreness when using a bag, barriers, adhesive removers or seals. If you do, speak to your stoma nurse for their recommendations.
- Barrier rings are an option if you are getting leaks, and are recommended with a convex stoma (where the peristome skin is dipping in). This gives extra support and acts as a sponge such as the Pelican Freeseal , to absorb leakage before it irritates your skin causing you to change your bag.
- Ensure your skin is bone dry before you apply your bag and shave the area. Use an absorbent product in your bag such as the Absorb Odour Neutralising Absorbent Gel by Respond Healthcare. I have sworn by these since my little man was born. For an ileostomy in particular, it's great for thickening the stool to extend the bags longevity and stop leaks.
- Use support wear. There are so many options available now in the form of briefs, boxers, leggings, belts and waistbands. I favour the Comfizz Double Layer Waistband Level 2 Support. Remember these are available on prescription, certainly in Wales, for 6 a year. If you have little ones and they have growth spurts in-between you can request for more.
Until next time, Rach x
Disclaimer: As always, this post is from our blogger, Rachel's, experience of living with an ostomy & Hirschsprung's Disease & from what she has researched. Nothing in our blog posts should be taken as medical advice. It's always best to consult a medical professional if you have queries or concerns.
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