Stoma issues

Helly68

Registered User
Mar 12, 2018
1,685
0
This is a thread with info and asking for info about issues with stomas in mid to late stage dementia.

My mother has had a stoma for about 18 months. Initially she was very resentful of it - it came after surgery left her very confused and moved her dementia on considerably, so unsurprisingly it made very very anxious. This manifested itself in her tearing the stoma bag off frequently.

She settled a bit and this stopped but has now started up again. She is in a care home so the staff and I are trying to find solutions. This is what we have tried so far, in case it helps others -

We discussed whether the stoma could be reversed, but no one has any appetite for further surgery.

We have tried various style of knickers, but she is able to get at all of them.

We are currently using a leotard-style "body" - like a vest, with closures between the legs. She is sometimes able to get round this if very determined. M&S sell these, but don't buy the "bodyshaper" ones as these are probably too restrictive.

So......next steps. I am buying a thing that looks like a victorian bathing costume - e.g. a leotard with short legs like cycling shorts. At this point, someone else is always changing her so the aim is to find things she cant remove herself. We will see how well this last items works.

Is there such a thing a dementia underwear? I have looked but havent yet seen anything.
 

spangban

New member
Mar 22, 2021
2
0
This is a thread with info and asking for info about issues with stomas in mid to late stage dementia.

My mother has had a stoma for about 18 months. Initially she was very resentful of it - it came after surgery left her very confused and moved her dementia on considerably, so unsurprisingly it made very very anxious. This manifested itself in her tearing the stoma bag off frequently.

She settled a bit and this stopped but has now started up again. She is in a care home so the staff and I are trying to find solutions. This is what we have tried so far, in case it helps others -

We discussed whether the stoma could be reversed, but no one has any appetite for further surgery.

We have tried various style of knickers, but she is able to get at all of them.

We are currently using a leotard-style "body" - like a vest, with closures between the legs. She is sometimes able to get round this if very determined. M&S sell these, but don't buy the "bodyshaper" ones as these are probably too restrictive.

So......next steps. I am buying a thing that looks like a victorian bathing costume - e.g. a leotard with short legs like cycling shorts. At this point, someone else is always changing her so the aim is to find things she cant remove herself. We will see how well this last items works.

Is there such a thing a dementia underwear? I have looked but havent yet seen anything.
I care for my wife she has had a stoma (urostomy) since 2004 but since onset of her dementia she has now taken to doing what you experience I apply the bag in the morning & by the following morning it has been removed (apparently by an unknown person overnight) and complains that she is very wet, I don't know what the answer is but it has become a exasperating situation. As you say she also stopped for a while & has now started up again
 

Helly68

Registered User
Mar 12, 2018
1,685
0
I care for my wife she has had a stoma (urostomy) since 2004 but since onset of her dementia she has now taken to doing what you experience I apply the bag in the morning & by the following morning it has been removed (apparently by an unknown person overnight) and complains that she is very wet, I don't know what the answer is but it has become a exasperating situation. As you say she also stopped for a while & has now started up again
@spangban it may be worth seeing if you can get the advice of a Stoma Nurse as to specialist underwear. Sadly, Mummy was very determined and could get into almost anything.
 

Louise7

Volunteer Host
Mar 25, 2016
4,774
0
Hello @spangban welcome to DTP, you'll find this a friendly and supportive group. I don't have personal experience of a stoma but hopefully other members will be along soon. Perhaps your GP could refer you to a stoma nurse, as mentioned above? Colostomy UK have a 24hr helpline that may be useful too:

You can call Colostomy UK anytime on our 24-hour free helpline 0800 328 4257 for advice on all stoma related issues*. We can also put you in touch with other carers who can provide support and advice.

 

spangban

New member
Mar 22, 2021
2
0
I care for my wife she has had a stoma (urostomy) since 2004 but since onset of her dementia she has now taken to doing what you experience I apply the bag in the morning & by the following morning it has been removed (apparently by an unknown person overnight) and complains that she is very wet, I don't know what the answer is but it has become a exasperating situation. As you say she also stopped for a while & has now started up again
We have now moved on to her refusing to let me attach a Ostomy bag and she uses toilet paper stuffed down her trousers, which are constantly wet she changes when encouraged & I have the washing machine on a daily wash of trousers. Needless to say the mattress is repeatedly stained. I do not know what to try next. Her mental state is deteriating I hear her having conversations with some imaginary person & says things that are nonsensical. I do not know what do next any help would be appreciated.
 

Helly68

Registered User
Mar 12, 2018
1,685
0
@spangban it may be worth trying to get a referral back to the continence service, who may have ideas. Has anyone other than you tried to change the bag? Mummy would sometimes be more co-operative for carers. However, she never really adapted to her stoma and it was a challenge, even in a care home, to stop her removing it.