Radical cystectomy

Hi Farinelli 

I’m sorry to hear your husband is having leaks-it’s so disheartening, isn’t it? I’m not sure what you’ve tried already so don’t want to try and suggest things you’ve already done. I don’t know how long ago your husband had his op, but often the stoma can need to be remeasured to ensure the hole in the bag is the right size as the stoma can change shape. That’s often the issue with leaks in the early stages of recovery.

If you can say what you’ve already tried, I’ll see if I have any other suggestions for you.

Sarah xx

Hi Sarah. Thank you for your message.  When he changes the stoma bag he goes through all the correct procedure, cleaning, drying etc. however I am wondering if he not pressing down on the stoma adhesive ring or the adhesive on the stoma bag for long enough.  He’s put a new one on last night and so far so good.  Regards Angela 

Hi Angela

I’d also try warming the ring and the bag before they go on as this can help with adhesion. (On a radiator or gently with a hairdryer). Once the bag is on, I tend to warm it again by keeping my hands round the seal for a minute or two pressing gently just to make sure it’s stuck as well as possible. 

It’s good to hear you’ve been ok so far with this bag. Sometimes bags can be faulty too-I’ve experienced a bad “batch” in my time!

Sarah xx

Hi Angela,Sorry your husband has been having some leaks which are not uncommon in the early days of having a stoma.Like Sarah I also keep my hand over the seal to warm it and help with adhesion.The stoma does change shape in the early weeks as it shrinks down as Sarah has mentioned you can get leaks then if the bag does not fit snugly.Your husband will probably find the whole procedure of cleaning the stoma and fitting a new bag will get quicker with experience and confidence.How is he feeling since the surgery ? Jane xx

Thank  you Sarah. That’s good idea  will definitely get him to try that 

Angela x

He’s is very weak but that’s to be expected I suppose.  4 weeks since op and he picked up a few infections in hospital 

Sorry to hear there have been some infections.It is still early in the recovery and it is usual to feel weak and exhausted.Hopefully things will be better soon and each week he should get stronger.Love Jane 

Hi Angela,

I've encountered two leak causes that haven't been mentioned yet.

1. As mentioned, the size of the stoma is important. The shape is also important. Several months after surgery, my stoma shrank a little and changed from round to oval. Holes that fit the one direction of the oval were too large in the other direction, resulting in leaks. I cut a new template to the correct size and used it to trace the proper size hole on the stoma bag seal.

2. I lost a lot of weight leading up to my cystectomy. As a result the skin across my abdomen is loose. I discovered that if I push my stomach out as far as I can, and using my left hand, pull up on the skin above my stoma, the skin across my abdomen tightens and the stoma bag seals better. 

I am sure that you and your husband will find a solution. I would love to hear what that turns out to be.

Good luck!

JD

Thank you so much for your reply It’s great to know we are not the only ones with a few complications. Will definitely try your advice 

all the best. Angela 

Hi Farinelli 

Your husband has had surgery very recently so often it’s a case of trial and error in those first few weeks to find the right product for his needs, and particular stoma shape! We are all different, and the huge range of different types of bags shows us it’s not one size fits all.

My own urostomy is crescent shaped and quite small rather than round and I don’t have a “spout” and I suffered from the same issues JD000001 has described. I also lost a huge amount of weight and then found as my recovery progressed and the weight started to go back on, things changed again for me. 

Things get better as recovery progresses, and there should always be a solution-I discovered I needed to change from flat bags to convex and that I needed extra adhesion, so once I got these things sorted, things became very much better. I’ve had 2 stomas for more than and a half years and have in that time tried multiple different bag types and other products until I settled on a system which works for me.

Hopefully your husband will get over his infections and find he gets stronger as the weeks go by.

Sarah xx