STOMA CARE

[Mary_16121]

A difficult subject

BUT

My partner cannot deal with changing the bag on his stoma himself. Let's be blunt about this, we are not talking about 'output' as the nurses do, or really 'stoma care' - we are talking about poo, faeces, s**t, whatever you want to call it, coming from an artificial opening in the abdomen via a short piece of intestine. I was changing my partner's bag this morning ( he has dementia and cannot do it) and the blessed stoma started to 'be active' another euphemism for poo shooting out at an alarming rate as I tried to stop it going everywhere.

Right we have got the definition and the action out of the way.

Am I the only one who finds this utterly revolting? I had never had any dealing with a stoma before January this year. The medics saved my partner's life, no doubt, and for which, my thanks. BUT they do not explain the realities of living with a stoma.

I do find it revolting. I am not squeamish but this is one bodily function I do not enjoy dealing with.

I would be interested to know if it is just me being hyper sensitive or anyone else feels like this. By the way, my partner is not in the least embarrassed or upset, which is probably as well......

[no1mum]

There are a wide range of helpful sites on the internet regarding colostomy/stoma help/care, I wish they had been readily available years ago when I had to deal with stoma care. Find out if you have a local stoma nurse, they can be a wonderful source of information and can advise on all aspects regarding a stoma.

[sunnydisposition]

I think you are coping well given it's not something. You may have thought you might have to do. So pat on the back. I do historically have experience as a paid carer. Not on a personal level. The two are very different.
https://www.stomaatje.com/friends_family.html
I know the odour can be at times very challenging! It's a bit of mind over matter.
Although all's not lost.
https://healdove.com/disease-illness/co ... g-problems

[Henrietta]

Hugs to you, as a paid carer I've had to change stoma bags a few times but for urinary output only so not quite the same challenge. I have, however encountered the odd poop in various formats. All I can say is it gets easier to deal with, never pleasant but you get kind of accustomed to it and good preparation can save a lot of mess. Towels, wet wipes, tissues, toilet rolls, cleansing lotions, bowl of water, rubbish bags, spare gloves and start peeling off the backs of those sticky things before you get going- have all within reach.
As a private family carer, if you chose to refuse to do this , would a District Nurse pick up this duty?

[Mary_16121]

Hugs to you, as a paid carer I've had to change stoma bags a few times but for urinary output only so not quite the same challenge. I have, however encountered the odd poop in various formats. All I can say is it gets easier to deal with, never pleasant but you get kind of accustomed to it and good preparation can save a lot of mess. Towels, wet wipes, tissues, toilet rolls, cleansing lotions, bowl of water, rubbish bags, spare gloves and start peeling off the backs of those sticky things before you get going- have all within reach.
As a private family carer, if you chose to refuse to do this , would a District Nurse pick up this duty?

Thankyou for your lovely and considered responses.

The problem we have is that the 'bag' will not stay put, no matter what I or the nurses do. We have carers coming in to change it but this morning she had only been gone 45 mins and the thing was coming off again - so I have to deal with it. We are having a visit tomorrow pm from a lady who feels she can help. I hope so, she sounds lovely.

I have also had some counselling which has helped, as I was feeling very resentful of being thrust into a role I did not want without any warning at all.

Difficult times, but as I have said elsewhere on the site - the dementia I could cope with, the ileostomy I could cope with, but the two together at the same time, is a real problem.

thank you all you lovely people.

[sunnydisposition]

https://forum.alzheimers.org.uk/showthr ... stoma-care

[Mary_16121]

https://forum.alzheimers.org.uk/showthr ... stoma-care

Thanks for that, Sunny, there are people on there in such awful situations, how difficult it is to have a positive outlook.

But we all do try, my poor old chap has struggled through the night - we no longer have the same room, and I was fast asleep. He did not want to wake me, bless him. HIs stoma bag was hanging off and he tried to fix it, but couldn't, so put a towel on the bed. By 6.15am I met him coming out of the bathroom, realised what was going on and sorted it all out for him. Now got another load of laundry, again.

There is the knock on as well, I now have to remember to cancel the carer coming at 10.00am to change the bag, and does he go swimming today, if the bag doesn't stay on? or should I cancel the carer for that as well. If he is going to be at home all day, does that mean I need to cancel the 3 work appointments I have, in order to be with him? It is all so complex.

The general opinion on this site and the Alzheimer's site is that the combination of a stoma and dementia is such an awful situation for the cared for and the carers. We all just wish for a normal life that is never ever going to happen.

Thank goodness for this site and all the wonderful people on it that we are able to share with.

[no1mum]

I'm well acquainted with stoma bags that don't want to stay put, our remedy for them was blenderm tape which was given on prescription, not sure if that is still the case, if not I know it can be bought on Ebay. Loose stools can be helped with Immodium, which was also given on prescription. There are a huge range of different bags available now, it would be worth trying different ones.

[Mary_16121]

I'm well acquainted with stoma bags that don't want to stay put, our remedy for them was blenderm tape which was given on prescription, not sure if that is still the case, if not I know it can be bought on Ebay. Loose stools can be helped with Immodium, which was also given on prescription. There are a huge range of different bags available now, it would be worth trying different ones.

Thank you very much - I will have a look at that - he does take loperamide to thicken things up a bit.... I think my biggest problem is psychological for me. My really sexy lover and soul mate has turned into a frail old man all of a sudden with no regard for my well being or the amount of work I do, because he mentally has not got that capacity any more. It happened so very quickly, the ileostomy and the 2 types of dementia, that I think I am in shock. I have to mourn and then forget the man he was, because he has gone forever, and I need to get my head around the person who I find myself living with who rarely talks to me, rarely smiles, and looks rather like 'my man' but is not....

[sunnydisposition]

Have you had or considered any counselling. You g.p. could refer you. You are sounding bereaved. Although the person is still here you are experiencing loss. Are there any carer groups in your local area. Other carers in similar situation usually have better insight to your situation. This forum is a good starting point.

https://whatsyourgrief.com/ambiguous-gr ... ill-alive/
Have a read of the link -don't be put off by the description.

You now need to create a new life that runs parallel to the old. Think of it as a new Job. You have you job description what do you need to adapt/learn. Develop a new box of tools.

A new support/friends net work.
Make sure you have me time.
Find new leisure/hobbies.
Have you applied for a carers assessment.