Leaking Stoma bag and special underwear

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Hi I am new to the platform and had a radical cystectomy at the end of May so all of this is new to me. My stoma bag has been leaking every day since Friday last week (sometimes 2x a day). I was wondering if anybody uses an absorbent underwear or special underwear to help with keeping the bag stable and leaks? Any advice will be helpful.

Thanks again!

  • Hi,Welcome to the group.I’m sorry to hear your stoma is leaking.I wonder whether your stoma has shrunk down/changed shape this happens in the early days.If this has happened you will get leaks if the hole in the stoma bag is too big.I measured mine a lot in the beginning using either the paper template with the stoma supplies or the plastic back that peels off the reverse of the bag.Your stoma nurses should be able to advise you if it’s not the stoma changing shape.How are you finding the recovery ? There is plenty of advice and support here so I hope you find it helpful.Best wishes Jane 

  • Hi Ldean and welcome

    Have you contacted your dedicated stoma nurse and told them the problems you are having? As winkers said they do tend to change shape over a period of time before the final shape. I gather the leak is coming out through the sticky tape and the bag is not sticking properly to your skin. I used a number of bags before I found the one that suited me. Again your stoma nurse will advise on this. There are also adhesive tapes that you can get that go over the outer edge I found them really good and gave me great confidence that I wasn't going to leak. I also found that when the hair began to grow back on my stomach the bag didn't stick as well. I now shave my stomach although not to close to the stoma once a week and the bag sticks really well.

    As for under garments I don't bother with this. I let my bag hang down and flap around and if the nozzle hangs below my t shirt that's OK with me I don't care who sees it lol.

    Hope this helps 

    Best wishes

    Mark

  • Hi winkers60, yes my stoma has shrunk over the last 4 weeks and I have measured it each time I change my stoma bag, so this is not the issue. I was just trying to find another person who maybe uses a special type of underwear to keep the stoma bag in place, less movement etc and weather that underwear can also help to absorb the liquid in case of leaks. Thank you for your reply. Lisa

  • I think I can help - you may be able to find one of my recent posts on this topic on other sections but if not:

    1. Stoma underwear is available from many suppliers - google stoma pants or if female have a look at M&S stoma pants - My current favourite. These pants are cotton with varying amounts of elastane and a pocket to support 1 or 2 bags (some people need more than one). They are all easily washable and M&S one are cheaper than others. On the other hand if male you will find suppliers that do men's stoma pants online. My stoma nurses told everyone about them before the op and I have always worn them. But, no pants will mop up a leak - you'd need heavy duty incontinence pants for that. The thing you need to do is work out why you are leaking and then fix that. What follows is what I've learnt so I rarely get leaks.

    2. If like me you have a rounded and rather flabby stomach - it can be difficult to get the bag attached to it. My stoma nurse gave me a bag belt - not one for hernias which look like corsets and have a lot of elastic and can be very tight. This is an inch wide, goes around my hips/waist and fastens onto the rigid plastic bag loops at each side of the stoma bag using velcro for my type of bags. For other bags, the ends slot into gaps in a plastic thingy at each side of the bag. You need at least 2 - wash and wear. Lots of support and gives confidence.

    3. Before removing the plastic backing of the bag and starting to attach it to you get the bag warm. Some men put it in their armpit, women use their bras to hold it close to the skin and get the adhesive warmed up. I have also heard of people using a hairdryer on low, though I have used a warm radiator in winter but skin works best. While I'm warming it up I use the time to get everything set up ready to wash around the stoma etc.

    4. The bag adhesive works on body heat. Stoma nurses only dab the bag on - and it works fine - must have hot hands. I have learnt to cup at least one hand on top of the bag and hold it tightly, leaving it there for a couple of minutes (I time it) to make sure it really sticks. And before you start that, you need to rub the back of the outer ring of the flange (sticky bit) as well as the inner ring around the stoma to get it started with sticking to the skin. The latter bit is very important as if urine slips down behind the sticky ring then it will not stick and will start to undo the rest of the sticky bit. SInce learning that, my leaks are almost zero and I never use any extra sticky strips either.

    5. Empty bags before they are too full. A heavy bag can pull away from the skin. I find that watching TV with feet up or reclined I don't notice how full the bag is getting. That's a nuisance and I have to make a dash to the loo holding the bag tightly. I missed 15 minutes of Wallace and Grommit at Xmas like that, because it was that terrible warm, wet feeling that alerted me I'd left it too late. 

    Like others say, make sure the hole is the right size and shape when it settles down you can ask for bags to be supplied pre-cut. 

    Hope this helps - it has improved my stoma handling a lot. 

    All the best,

    Latestart

  • Hi Latestart,

    Thank you so much for the very good advice here. I see my stoma nurse to address the leaking problem I have this Thursday and I will bring up everything you mentioned here. 


    In my case the seal keeps lifting on the right side of the bag and then leaking. The bag leaks even with banana strips over the seal. I do place my hand over the bag after it is attached for 5 mins as you mentioned but I didn’t know about warming the adhesive up beforehand. 

    Thank you again for the detailed response, I really appreciate it.

    Lisa

  • Yes I had that problem too so this should work. 

  • Hi Ldean

    I am now 18 months in to life without a bladder and had many leaks in the early weeks after the op. I think this is pretty much what most people experience until you take advice from your stoma nurse and read a few some very useful tips on this forum.

    Stoma shrinkage as others mention happened to me, dropping from 35 to 28mm and stoma nurse made arrangements for new bags to be cut accordingly. I also found that I wasn’t  cleansing the skin fully of retained adhesive around the stoma during daily bag change. Nurse arranged for little sterile barrier foam sticks in sachets to be added to my prescription and they work well and help dry the skin more fully which is important. 

    The most useful tip I got from this forum was to pop the new bag in my armpit (females have a better method) to get the adhesive on the wafer fully up to body temperature whilst removing the old bag. It then sticks far better but do empty regularly. As regards underwear I wear nothing special but now wear good old fashioned braces and no belts or elasticated waistband trousers that were causing me problems. It is seven months since I experienced a leaky bag and then only after a very long walk when I overdid things a little.Having said that though I still carry a Chang kit in a little back pack when out for the day as a precaution.

    Hope this helps.

    Most people I have spoken

  • That’s a change kit

  • I was given a 120cm 1 inch wide waist belt to try which is adjustable.

    I'm currently using it to provide some additional security.

    My tummy was quite distended immediately post surgery, and that is settling, and the shape of my tummy is changing and getting flatter.

    To date (three weeks post surgery) the only major leak has been due to my night bag becoming detached from the urostomy bag.

    Even though it wasn't really my fault, you do feel a right idiot. 

  • Yes that's rhe belt I use too. It (1 to wash, 1 to wear, 1 for my change kit)  and its replacements - the plastic velcro bit starts ro crack with washing after a while - has kept the show on the road for 2.5 years now. The belt really makes sure the bag is tight to the skin so the adhesive works. 

    I pulled out the connection to the nightbag once. Didn't feel a fool, just wet! And having to change the bed at 3 a.m.was an incentive to get it right. The trick is to push the connector right into the bottom of the stoma bag as far as it goes. They never tell you how far but it comes loose otherwise, or you turn over in your sleep and it comes apart. Of course when you take it away in the morning you have to jiggle it a bit to get it off, and I panicked at first, but it does come loose eventually.

    Sounds like you are adapting to the stoma very well. 

    All the best,

    Latestart