urostomy bag failures

Hi kinhellmick. I did not have RC so not much help. Just giving your post a bump and hopefully someone will be along to help. Best wishes.

Hi Mick

I use Dansac bags from Fittleworth which I change every 3 days. Lately some have leaked a day before change is due. Mostly though I have no complaints and like you say, you can forget they are there 

Please let me know how it goes

Love Inanna x 

Hi Mick

I've only had my 'bag' for 6 weeks now - but post-op I was automatically given a supply of the Hollister bags, and 'touch wood', so far I haven't had an issues with leakage.

I have adapted to having to have a bag very easily, but the thought of leakage is one of my fears, especially when I go back to work, (I work in a school).  But so far, so good. Not sure if this will be helpful - but I have found that the Hollister 1 piece system (used with seal) and available through Fittleworth has been working for me.

Marie

I have experienced the odd leakage from a bag after a relatively short period in use. As is always the case it happens at the worst possible times when you have no immediate access to emergency kit, and can't easily stop to do a bag change. i.e. on the golf course or at a football match!

I am using the Sensura Mio Convex one piece bags, that have been pretty good. Generally I let them go 2 or 3 days between changes without any issues. But have had a few early use leaks, which upon investigation the seal appears to be intact.

i suspect that it is the outlet plug, sometimes either isn't a tight enough fit in the spout, or possibly has worked it's way out a little to not seal against any pressure applied to the contents. I try to prevent this happening by regular emptying, but sometimes, as you don't have any sensation of passing urine, you don;t realise that the bag has accumulated a reasonable amount!

thanks for the info so far my appointments is tomorrow 03/11/22 so i will leave some feed back and info after this..(still having issues at the mo though )

Sorry to hear you are still having issues.I hope your appointment goes well.Best wishes Jane 

Hi Mick  Fittleworth are also my suppliers.  I use Nova 1 Convex urostomy one piece bags with TRE Danac 0 adhesive ring seals.  I had my RC June 2021 6 months after being diagnosed with Bladder Cancer.  You can also get shelter safe seals (manufactured by Bullen Healthcare Ltd) that can be stuck to your bag to provide a seal if you get a leak - that is my great dread.  Leaks are our total nightmare's and unfortunately something we have to accept will happen without warning and regardless where you are.  Thankfully (fingers crossed) I haven't sprung an unexpected leak and wet myself at a local supermarket yet or other busy social area.  Although it has occurred at a couple of social events held at our local Royal British Legion and has never caused a problem as they know of my predicament.  I just mention 'Sorry, I will be back, Sammy has wet himself'.  To start with, it is all trial and error and part of our learning curve adapting to a new way of living.  As they say hindsight is amazing.  But looking back, I like you had enormous problems with leaks and almost got to the stage of becoming to scared to go out because the bags seemed to last for only half hour, a complete mental and physical nightmare and the cause of many a crying spell caused by despair and frustration.  I will never know how I didn't have a mental health breakdown during the early months  will never know.  The time we want and need our brains and thoughts to support and encourage us go into reverse and do the complete opposite.  I apologise I am rambling.  If I have experienced any problems I have contacted my Stoma Nurse's and they have become my Mother Teresa's as they can amazing sort anything out so quickly and are so helpful and supportive.  Most of the leaks I experienced were due to a combination of inexperience, misplacement of the bag ( I even managed to fit my stoma bag over my belly button at one stage, don't ask how !  guess it resembled Sammy my stoma :)  The major cause of my bag leaks were due to Sammy my stoma changing size and shape.  I have learnt that it is important to keep check of the size and shape of it.  Fittleworth supply my bags cut to shape.  After reading your post you made me wonder as I seemed to have a batch of bags during the summer that didn't seem to last long and required changing more regularly and I considered whether it was a faulty batch or not.  It seemed to resolve before the need to contact fittleworth of the problem.  The only other problems I have experienced are that I have to wear my bag outside my trousers as if I wear them in my trousers and waistband is on the bag, they leak.  The other and one I will never get use to and accept is waking up in a wet bed because my nightbag hose has disconnected that will always cause my greatest frustration and nightmare.  I have 3 layers  of waterproof protection on my bed due to this.  It doesn't help as I apparently move about a lot in my sleep.  As you can imagine due to this my wife and I now have separate beds - no matter how much someone love's you, you can't expect them to accept or put up with you wetting the bed no matter how infrequently.  If I bend a lot the top of bag seal starts to peel back.  I use to trim the bottom of my bags due to my belly.  Sometimes there are no immediate answers you just have to trial and error.  Never forget to remember you are never alone, no question is ever stupid, if you don't ask you can guarantee there is always someone wondering and experiencing the same.  Stoma Nurses are our Saviors.  Fortunately I had taken early retirement before being diagnosed, I am soon to be 64 .  Did you have any BCG treatments? Sending you good luck best wishes in your journey, message me if you want to.

Regards, John

hi john thanks for the info.. had a meeting with my stoma nurse last Thursday and the cause of my failures are that indeed my stoma has changed shape and also receded a little so where i used the flat bags they were getting saturated a lot more than normal around the punched hole which was breaking down the glue quicker resulting in a early failure coupled with the fact that my skin around the pouch area has become very red and inflamed caused by the frequent early leaking.. i have tried the holister convex bags over the weekend and they are holding up better but the skin needs to heal as well so my stoma nurse supplied me with a barrier spray to help the healing process.. hopefully this is the answer and i am somewhat relieved that a problem has been discovered to be the cause of the issue.. in answer to your question about b.c.g. unfortunately i had been suffering with a condition called chronic pelvic pain syndrome for 4 years before the bladder cancer emerged which resulted in very painful urinary problems in the urethra and as my cancer was quite aggressive the surgeon suggested full removal as the safest bet.. as soon as i had the op the pelvic pain was no more so there was a suggestion that one caused the other and i had made the right decision.. many thanks again for the reply.. all the best.. mick 

Hi Mick I am glad your Stoma nurse sorted you out.  If the redness and soreness persists ask her about TRE Dansac 0 adhesive ring seals.  I was prescribed these and they certainly helped the skin to recover.  John

• Hi.i am also using Dansac , and also through fittleworth, but I felt the bags were the one for me, I tried a few, but the larger backplate suited me as I'm active. I've had leaks, mainly self inflicted, but I've had some leaks from the crimped tap end at times, Dansac have always been good to be honest.