Hi, I’m new to the group. Mum was diagnosed with bladder cancer in December and had surgery in March. She now has a Urostomy but with Stents rather than using her bowel (apologies if all the terminology is wrong) She’s having a really tough time, been back in hospital with repeated infections and her bag leaks a lot.
im at a total loss how to help her….any advice at all greatly appreciated.
Hi Sarah C and welcome to the group.
I’m sorry to see that your mum is struggling with infections but it’s really nice of you to come on here and look for some help for her. She’s not too long from surgery, so things can be hard in the early days.
I appreciate you saying that you are unsure about terminology, but it may be helpful if you can explain a little more to see if anyone has experience which can enable us give you some advice.
I wasn’t sure what you meant when you said your mum has a urostomy but with stents rather than using the bowel. A urostomy is made from the ileum, which is part of the bowel, and an opening is made in the tummy where the urine now comes out. I had stents for a couple of weeks after my bladder was removed which went into the stoma, and came out into the bag-they were long thin tubes and they are placed there while the join from the small intestine to the ureters which lead to the kidneys heals.
Normally they are removed as you heal, and then the urine drains from the urostomy into the bag. May I ask if your mum still has these stents going from the stoma into the bag on her tummy? I know they can sometimes be left there for longer in some patients.
Stomas take time to heal and settle down, and it can take a while to find the best product/bag to use which works most effectively as we are all so different. Sometimes, it’s a matter of trial and error in trying different things to see what suits. This is where the stoma nurses at the hospital could help advise. You said your mum has been back in hospital, so has she spoken to the nurses about leakage? They can provide different products to try out to see what works best. It’s also possible to get free samples from any of the stoma companies just by requesting these online. I’ve lost count of how many different bags I have tried over the years! I found a bag which suited me, and I’ve kept with it for a few years now.
Sometimes things like losing weight after surgery can change your body shape, as happened with me, and sometimes there are other products like powder, gel and adhesives which can be used to help the bag stay on better and prevent leaks.
If you can tell me a little more about your mum’s circumstances, I will try my best to give you some advice for what worked for me. It’s hard not to be despondent with leakage, but it doesn’t need to be like that if your mum can get the right products to help.
Sarah xx
Hi again Sarah C
I hope your mum has a positive appointment with the stoma team and can get some guidance going forward. I found it personally quite a challenge dealing with leaks in the early days, but had a great stoma nurse in the community who have me lots of advice and help. I cannot remember the last time I had a leak with my urostomy bag, but I did try many types before I found a system which worked well for me, so your mum may have to experiment with a few different things.
It terms of practical things at home in the event of leaks, a waterproof mattress protector is invaluable, and puppy pads have also been very useful for me too. I still take some with me if I’m staying in a hotel or someone else’s house. Just in case!
You have a lot on your plate with your dad also having Parkinson’s-are you getting any help and support? I hope you are, as this is a difficult time for you and there should be some help available for you.
Sarah xx
