New stoma and leaking bags

Hi Loz0cd630,Welcome to this friendly group.I’m sorry you are having leaks.At the beginning the stoma changes shape and you can get leaks if the hole in the bag is not cut to the correct size.Measure it each time you change the bag.You can use the template in the stoma supplies or the plastic backing on the bag.Putting a clean bag in your armpit can help warm the adhesive before application.Apologies if these are things you do already.Your stoma nurses can advise you too.Jane 

Dear LozOcd630,

This sounds annoying. Winkers is quite right, stoma bags work best when warmed before application. And as well, I hold mine in place once attached for 2 minutes to make sure they attach and stay attached. I do a quick breathing routine on my Fitbit at the same time which also reduces the stress of bag changes especially after  having a leak!

To answer your question - yes it could be a bad batch. Otherwise there are a few tricks I've learnt that help keep my bags in place (usually).

I'm not familiar with nephrostomies but it occurs to me that the stoma will be in a different part of your body and that may also not help. For example, long before I had bladder cancer I lost 6 stones in weight leaving me with a fair amount of stomach flab. My stoma nurse gave me a belt for my bag so that it wasn't under too much strain and stayed attached better - that helped a lot. And also, over time helped the stoma protrude a bit more (see next).

I was told there are 2 types of stoma - innies and outies. Mine is the former ie doesn't protrude much (if at all) above skin level. It's also in a bit of a dip (see above) so that needs a concave flange (sticky bit) on the bag. That's because urine can work its way behind the flange even if some does manage to get into the bag. That will then cause a leak. The same thing happens if the hole is too small or too big.

I also have very sensitive skin. Urine really inflames it and if it is in contact with it for a while eg several hours, it becomes red and angry - that can affect the adhesion next time too. Plus I managed to get a rash at one point and needed steroid lotion to calm it down. I also use bags with Manuka honey in the flange to counter all of this.

My advice is to get the stoma nurse to come and see you Asap or go to them. Get them to check whether you have any of the above problems and see if a different bag works better.

I lie on my side at night as I have back problems too. A pillow between my  knees helps my back and so I don't toss and turn. If you get better adhesion with the day bags that should help too. Changing a bed in the middle of the night is no fun.

It is so important to feel you can rely on these bags so I do empathise. While I still have occasional leaks eg when the weather is very hot or I've been a bit over-enthusiatic with Pilates (sweat doesn't help) or fallen asleep watching TV and let the bag over-fill) I have reached a stage where I can normally change every other day - any less can damage my skin, because removing the bag can tear skin if one isn't careful, and any longer  can also not be good for it.

I hope some of this helps.

All the best,

Latestart

Your stoma nurse should be able to give you something to heal your sore skin.How are you feeling since the operation ? It’s very early in your recovery so you will need to take things steady.Let us know if we can help.There are a few of us here that have had a radical cystectomy.Jane 

Hi

Thank you for the advice, I haven't been warming it before hand but I have warmed it once attached. I've piled the weight on due to having steroids, I couldn't have the rc without coming off my anti rejection tablets. My nephrostomy is below the stoma because that's where transplanted kidney sits. This isn't helping as both plasters over lap and my belly is quite rounded.

I'm doing extremely well after the op, I just can't sit still, I'm managing to walk around ok and eating well, though i would like to do more i know i cant. I'm waiting for my results, I have squamous cancer and have been told the type i have is rare and untreatable with chemo and radiotherapy so if they haven't managed to get it all out the only think they can offer is palliative care. I'm hopeful that with my blood results improving this is a good sign. My Mt meeting is tomorrow so I should hopefully hear something back quite quickly.

It’s good to hear you are doing well.It sounds like you have been through a lot with the transplant.I had Squamous cell too and I’m cancer free nearly 6 years later.Jane 

Thats really good to know. 6 years is great gives me hope.

I've had my transplant 23 years, hence why everything was pointing towards kidney problems first and a blockage until they discovered the tumour on my bladder, they did try removing it but stopped because it was in the muscle wall. 

Now I have had the rc I'm pain free, and I'm feeling good.

So glad to hear you are pain free.I had Interstitial cystitis for over 30 years and the damage from that is what caused the cancer.It was wonderful to be free of pain after the bladder removal.Take care and don’t overdo it as it’s easy to think you are better than you are early in the recovery.Jane 

...my 1st post:

In addition to the good advice above, I've been using Fusion Medical Adhesive and Barrier Film Applicators since shortly after my cystectomy in early 2023. They are 'sticky sticks' that you apply before sticking on the pouch. Best to wait a minute till it gets tacky. I find that they greatly lessen the irritation and spots, and improve adhesion. Still have the occasional leak. I'm a touring musician and after recovery I just kept going. I even had a leak at the beginning of a live set and had to keep going for the full 90 minutes. My guitar covered up the evidence and no-one knew. Very grateful to my wife who made me get checked up, and the surgeon and all staff who looked after me. It's an adventure!  

Thanks for the advice I will look up the sticks. The hospital nurse gave me a new bag to try and it lasted 38 hours, so an improvement but doesn't help when it starts to leak whilst in supermarket. Community nurse coming tomorrow with more samples, fingers crossed, I'm getting to the stage where I don't want to go out, fed up getting wet and stinking of wee, though nobody sees to be able to smell me.

Totally get it. I tried not to show it but I was very anxious at first. My community nurse was very helpful and also the hospital specialist nurse. I had a lot of leaks at first but I kept experimenting and now 99% of days fine. At home I change the pouch every other day. On tour change it every day. The reason I just joined in is because I experienced a rare leak TODAY while at a launderette! Kept calm, finished the laundry, got a Uber back to the hotel and sorted myself out. Nobody knew and even if they did, so what! Keep on rocking!