I have a stoma and fistula, basically two stomas. I had problems with one leaking due to folds/creases in my body which affected the stickability of the bags that I use.

I now use a special paste that fills such folds but which the bags stick to quite easily.

It might be worth experimenting with this paste to see if it helps. It's also something that can be prescribed.

Regards

Taff

Hi Jules,

Welcome to the forum. I am sorry to hear about your Mum’s dilemma. My Mum had Ascites and had her tummy drained while she was in hospital. We then started having the same problem as your Mum and the leakage became so severe that we were afraid that we might lose her to Pneumonia. I went in one morning to find her ‘chittering’ with the cold from lying on a sodden bed all night. I was obviously upset that nurses hadn’t even changed her during the night.

The following day a junior nurse approached me and said that she had been thinking of the problem the previous night and thought that she had come up with a solution. This was 20 years ago and this young nurse had indeed found a solution, as it never leaked again. Sadly, with the time lapse, I cannot remember what was used, but dressings have moved on a lot since then. I am sure that there must be a suitable dressing for your Mum.

I can see where the nurses are coming from with the sticky tape. This can damage friable skin which could put you Mum back further. The tumour will cause a lump on her tummy too, so you are quite right that you probably need a cupped or a stretchy dressing. Have you asked the nurses on this site for advice? Their telephone number is freephone, and is 0808 800 4040.  I’m not saying that they can do anything, but this needs some lateral thinking and someone may have already mentioned overcoming this problem in the past – I do hope so, because I well remember just how worried I was when this was happening with my Mum.

Please keep us updated and let us know how your Mum gets on. There is always someone here whenever either of you feel like talking.

Kind regards,

Jolamine xx

Hi Taff - Jules here

Do you know what the paste is called ?

Jules

x

Hi Jules,

The paste I use is called 'stomahesive' but different stoma supply suppliers will have their own versions.

If you google stoma supplies, 'coloplast' is one such supplier and they might send you a sample free. Alternatively, you could ask your nurses to speak to a stoma nurse who can no doubt give you a tube to try.

Best Regards

Taff

Hi Taff

Thanks very much

I have printed off some info and will contact the nurses in the morning - also came across ColopColoplast Brava Protective Sheet Skin Barriers - i really dont know what i am doing - but it might be useful?

Thank you again for replying to me - i use quofora pump for my problems and also catherters for my bladder problems (since my motorccycle crash -spinal injury). 

Have a peaceful and i will let you know what the nurses come up with

Jules

x

Hi Jules,

My Mum couldn't even contemplate going out. She was hospitalised at the time. Lung cancer is bad enough to deal with, without having a smelly leaking tumour as well. Sadly, she is no longer with us and I miss her every day.

I am familiar with most heel pads on the market. The difficulty would be in attaching them to your Mum's skin.

However, the stomahesive paste sounds worth a shot and might work with a heel pad.. I am wracking my brain for a solution, but so far have failed to come up with anything. There are some good waterproof dressings which are used after heart by-pass surgery, but  they too are flat.

Please let us know when you find a solution. In the meantime, I will contact you again if I come up with anything.

Kind regards,

Jolamine xx

Hello there Jolamine, just Jules here.

My mums the same now - wobbles walking from bedroom to sofa, which she does maybe twice a day.

When mum first told us about the cancer it was only in March this year, even at that time me and mum were off shopping together everyday and competeing together on the tredmill at home. So much has changed so fast.

I am really really sorry if i talked before as if your mum was still here, i am so sorry you have lost her. I hope you dont mind me saying, and it feels wrong to say it, but becaause your mum also suffered this leaking tumor too, i dont feel so alone with it anymore, becaause you will know exactly what i am feeling.

I have noted what you said about the dressings for heart patients.

You would think wouldnt you that someone would have invented a dressing suitable that would prevent leakages. The lack of one that works causes so much heartache for the patient and prevents them from being as close to the ones they love as much as they would have liked.

My mum still hasnt mentioned the smell, nor me to her. I wish she she would. Did your mum?

Jules

x 

Just had another thought. When people discuss this paste on stoma forums, some people swear by putting the paste onto the sticky bit of the, in your case dressing, and then sticking to the skin.

If filling dips in the skin, squeeze out an amount and smooth out with a wet finger.

Without knowing/seeing the dressing and the tumour, it's difficult to imagine and suggest things accordingly, so I'mm just posting stuff as it comes into my head.

Regards

Taff

Regarding the smell - in hospital after I'd had my colostomy and with a raging infection as well as cancer pain, I needed help to empty the bags. A nark of a nursing assistant initially told me they didn't need emptying, then decided I should do it myself. But I needed help and insisted. She complained about the smell.

I reported her to the stoma nurses and there was uproar, particularly about mentioning the smell. While I wasn't bothered, just annoyed at her attitude, the point was made that for some people, particularly elderly, unwell ladies, this could have a damaging effect. Indeed, there are some stoma people that refuse to go out because they have problems, or perceive problems, with the smell.

Me, I'm forever asking the family if I smell and sometimes, they'll just come out and tell me. I can then change bags.

I'd be careful about mentioning it unless you , hopefully, come up with a solution and then say something along the lines of - 'There you go, you can be confident of going out now, without thinking that you might smell'.

Conversely, you could mention that you got the idea of the paste off somebody with a stoma who had leaks and was concerned about the smell when it happened.