I am new on this site as not had my operation yet, that’s 11th August 26 , just looking for any information people are willing to share. I have already been told I will have a stoma fitted (if that’s the right word) really don’t know what to expect. Does it hurt all the time, do you have to change the type of cloths you wear? Can the stoma leak? Etc etc
Hi Julin and welcome to the stoma group.
It can be hard to imagine life with a stoma before your op happens, and quite scary in some ways, but the reality was much better for me than I imagined.
I had a different operation for my particular cancer, but lost my bladder along with my rectum, so actually have 2 stomas for life now.
I’d encourage you not to use the word “fitted” with a stoma if you can. The word we should use in relation to stomas is “formed” as it’s part of your own anatomy rather than something which is fitted or added to you. Has your team explained exactly what bladder removal involves and how the urostomy is made?
I’ve been living with my stomas for over 6 years, so to answer the main questions you’ve asked:
Stomas do not hurt at all in themselves. The only thing I’ve found painful at any time with either stoma is the skin around it if it becomes raw or irritated. For me that happens very rarely, That brings me to your next question about stoma bags leaking, and yes, that’s possible. It can take time when your stoma is new for everything to heal and settle down, so you might need to try various different bags and products as you recover from surgery and the stoma size changes. I would very rarely have a bag leak nowadays.
You need to make sure that the bag is of the right type for you, and that it is properly measured-there is no one single type of bag which suits everyone, and there are lots of different types on the market. The stoma nurses will guide you on how to measure the hole in the bag so that it fits snugly round the stoma, and can let you try different types of bags to see which type suits you best.
I personally have not changed the type of clothes I wear, and haven’t felt the need to buy any specialist underwear or swimwear for example. I wear exactly the same things I’ve always done, but some people find they prefer specialist stoma underwear. It’s really just personal choice.
I’d recommend getting a waterproof sheet for your bed to save the mattress in case you are unfortunate enough to have a leaking bag. Usually leaks are caused by letting the bag become too full before emptying, and you soon become able to judge when you need to empty the bag. During the night, you connect your bag to a bigger capacity night bag which means you don’t have to get up in the night to use the loo.
If you have other specific questions, please feel free to ask-no question is too silly, and we have all had to learn. It becomes matter of course to manage stomas with a bit of practice, so although it can seem daunting at the start you’ll soon get into the way of it.
All the very best with your upcoming surgery!
Sarah xx
