Alzhemiers & a colostomy

LunaLuna

New member
Oct 19, 2017
4
0
Hi everyone, wonder if anyone can help.

My mum has some colorectal medical issues and has had a couple of operations to try and fix a painful problem she has, but to no avail. We have now been given two options - the first is to keep going as we are - this is living every day around a toilet, mum getting upset, in pain and not understanding the issue she has every time she feels she needs to go - which is every 30mins - and Dad having to be on hand to pick up the pieces every time and them both not being able to go out anywhere without facilities at hand. The second is a colostomy. We have an appt later today with the stoma nurses at our local hospital but the consultant from the last op openly said they don't like doing a colostomy with Alzheimer's or dementia patients and I am struggling to find anyone that has been where we are and has any experience, good or bad.

We feel like we're between a rock and a hard place, but right now their quality of life is non-existent and Mum, although she lost all rationality, short term memory and struggles to understand things, still washes & dresses herself (even if it is in the same cardigan every day) and wants to be going out places (every day). Dad is very stressed and tired; neither are sleeping properly due to her problem and dad cant give her a sleeping tablet because of it, and of course night time wandering & confusion. He's suffering greatly so this decision is not just about Mum, it is about both of them.

So, aware that there are pros & cons to both choices, and we're concerned about her 'accepting' a bag, constantly questioning why it's there and potentially removing it at inopportune times.. But, which is the lesser of these evils?? Any advice/sharing of experience gratefully received.

:)
 

karaokePete

Registered User
Jul 23, 2017
6,534
0
N Ireland
Whilst I don’t have any experience of this myself, I know some members do have loved ones who have trouble with their colostomy bags. Maybe someone will see your post later and be able to give the benefit of their experience.
 

Amethyst59

Registered User
Jul 3, 2017
5,776
0
Kent
Good morning, I am certain that their are members who have a loved one with dementia and a stoma. There have been discussions around covering the bag, so that it cannot be easily removed and you can buy a ‘pouch’ to do this. We have also discussed choosing clothes carefully, so that the bag is not too accessible.
As your mother’s quality of life is so bad with her bowel issues, I should think the consultant will take this into account in any decision made.
My late husband had two stomas and we were very lucky with the stoma nurses in this area (Kent). Hopefully you will be able to discuss today the level of support you might expect post operatively. I hope too, that other carers will see your post and give you some more helpful information.
We were introduced to someone with a stoma just about an hour before my husband’s operation. If we had met him sooner it would have allayed a lot of our fears. The actual stoma was not scary to look at, it was a really neat piece of work, and the bag was hardly detectable under clothes.
A colostomy or iliostomy is in many ways easier to deal with than a urostomy (my husband’s first stoma) as the whole bag is changed and disposed of, rather than emptying it regularly as you have to do when urine is collected. It is possible to get a two part bag, so that a base plate is stuck to the body and the bag snaps on and off with something like a Tupperware seal. The base plate needs changing only every three days or so. You are given a spray that dissolves the ‘glue’. (It is sort of like a giant Elastoplast). The other option is a bag that attaches straight to the body, but then the whole thing needs changing every time. We were also given a sort of ‘perfume’ spray to stop the bag smelling...and it worked.
I hope this allays some of your fears, gives you some useful information so that you know what questions to ask the stoma nurse, and keeps you going until a member comes along who has specific experience of a stoma combined with dementia.
 

LunaLuna

New member
Oct 19, 2017
4
0
Thank you both for your responses; the appt went really badly :( Unfortunately Mum was in complete denial yesterday that she had any sort of problem and after an hour of death stares and apologising that we were wasting the nurses time, I convinced her to go to the toilet with the nurse to see if she did have a problem - this kind of worked at least. It was all just a struggle and left both Dad and I convinced that this is now our decision as to whether she gets one or not. All these little steps downward take some getting used to don't they.

I didn't ask about the level of after care - they just said they would train dad & I up while she was in but I will have to ask some further questions. It would be a great idea to meet someone in our area who has one already so I think I will also ask about that possibility too. We only saw the one type of bag too - the one that sticks directly to the skin, so I will ask about the other type as that could be a better option.
 

Staff online

Forum statistics

Threads
138,135
Messages
1,993,251
Members
89,790
Latest member
Jliesman