Hello Peops,
I've been a member of this community for about 5 years but only just (October 2026) found out about this Stoma group! So to begin at the beginning....
After 10 years of (mainly) bladder cancer, 15 operations and the loss of 3 organs (flippin' "roadies"!), I've now been 18 months cancer free and, tbh, the biggest problems I have are a lack of self-confidence (stomas are ugly things, imho), and far too many scars, although those - apart from two recent ones - are not too obvious now, several years on from my first 'major' and two from my second. No doubt the scars of the third one will fade away over the next few years and at least they are not obvious in 'normal life'!
The same can't be said of the urinary stoma bags I was put on in hospital, (Coloplast), these, for some reason, were the concave ones which leave a dent around the stoma and with which I had few problems with leakage, (once I got used to them), yet found they manage to be very obvious when wearing just a tee-shirt and with the recent 'waves' I've been wearing a lot of those! So I tried changing to a flatter, more normal one this summer*. (*Summer seemed a good time to try as we wear less clothes then (less to wash!), and I expected problems owing to the change of shape of me with a dent but a flat bag.)
Didn't go too well; I found the glue too often failed to stick properly, sometimes leading to several changes of bag in a day. Annoying and involved me, sometimes, in a lot of extra clothes washing. Hey ho - not alone THERE, I'll be bound! More on that in a bit but recently, the supplier has changed to a 'new improved' type of tap, and a pretty poor job they made of that, too, as far as I can see. I'm told I'm not alone in complaining about it, AND I note, not only had it arrived on the flat ones, but when I had to excuse myself from a meeting and go home to change (again!), I gave up with the new flat ones (also Coloplast) and returned to the old concave ones. Much safer, I've found, although I was frustrated to see that the new ones now have the 'twist-lock' tap too. How annoying. The problem with those is the shape at the end of the tap, which is both flat and has two small holes, one either side, which trap the daily mucus from the conduit lining. The only real answer to that, I've found, is to kneel down in front of the bowl, twist the outer part right off, then squeeze the bag until the detritus flies out and the bag empties. Then you have to put the outer bit back on again and turn that back through 360° - which requires a knack best learned by practise on a used one cut off before disposal of the rest - very frustrating of them to have 'rolled it out' without giving it a decent trial first. Am I alone on here in complaining about this?
I think I have got round that for now with the above practise when necessary - not that you can do that at a public urinal! - but by returning to the older style of bag at least I have no more 'leaking bags'; well, not so far, anyway. Let's hope they find a cure for tap AND improve the glue on the flat type by the time summer comes around next year, when I hope to try again!
But the major point I want to ask about is the glue. Am I alone in deciding that the glue of the flat ones went right downhill during the later heat-waves? The boxes of thirty they supplied just were not as 'sticky' as the samples I was sent earlier in the year. Those were fine, although as expected, the 'dent' in my tummy caused by 14 months of wearing the concave type made the urine creep towards the edge far more quickly than previously. Fortunately, over a couple of months with the new type (I gave them a good try"), there's no doubt that the depth of my 'dent' reduced, so that augers well for next year... But the glue was just not good enough. Is it the hot weather? Were they stuck in a hot warehouse for too long? Did they get 'spoiled' in the heat of 'white-van-man's multi-hour travels in 30° heat when being delivered near the end of his long day? Did the manufacturers change the suppliers of the glue? Have they changed their manufacturing processes wrt to the glue, as well as the new 'tap'?
These are all questions I have asked my stoma nurse but I only get non-comital replies. So does anybody out there know any more? Is there a 'Stoma Ombudsman' to complain to? Probably not, but perhaps some of you more experienced at this malarkey than me can offer your experiences? I feel I've been struggling a bit on my own these last 18 months but with some 300,000 of us out there in the UK, there must be some of you with answers to some of these questions!!!
Many thanks for reading this far, and if you can offer any advice, I'm all, erm, 'eyes'....;^)
