advice on dealing with stoma terror

[cake4tea]

I am a fulltime carer for my mom who has just had an ilestomy after having bowel surgery. for diverticulitis disease which is why she had to have the operation. I have found the stoma and pouchchanging terrifying. I go to pieces when I have to change it and cut out the template. My sister does it but I need to find out how to conquer my fear of it. We have had some leaks and once it came off completely mom must have dislodged it during the night. Mom does move a lot at night and tends to sleep on the side her stoma is on.

Does anyone else suffer with this anxiety as I would value some advice for mom's sake as well as she can see my dislike of it.

I hate being her carer because of it, it is making me really resent the caring role I have.

 

[nitram]

Do you know about http://www.iasupport.org they have local groups and also a Visiting Service

"The benefit of speaking to someone who has been through a similar experience cannot be underestimated
IA’s visitors are people like you, who have had surgery and are now living successfully with an ileostomy or an internal pouch. They have received qualified training, which is recognised by the UK stoma care nursing organisations and have also completed a criminal records bureau check, so that they may help others come to terms with their thoughts, before and after surgery."

http://www.iasupport.org/pdfs/PatientVisiting.pdf

Although the service is aimed at patients they may come out to have a chat with you about the practicalities.

 

[maryjoan]

My partner had a stoma and three weeks later his dementia was diagnosed. He has never learnt how to change the bag - and I once found him with it stuck on his leg instead of the stoma. The stoma nurse came up with the idea of someone in a uniform ( ie carer) changing it for him. The stoma nurse then in a stern voice forbade him from ever trying to ever change it himself. He now reacts favourably to someone in a uniform doing it, rather than me.

The carer comes every morning to change the bag - social services pay as we are on extremely limited income - but it only takes about 20 mins to do it properly and monitor stoma health etc - and if paying privately it should be quite reasonable.

I am able to change his bag in emergency, but like you, I really hate doing it, loathe doing it, and he hates me having to do it.

Having the carer do the bag has changed our lives very much for the better.

 

[Nixnax1357]

Hi I've got a stoma and also care for dad's
Firstly you say you cut the bags yourself,get on to the supplier they should have a pre cutting service,so your bags come already sized.
Secondly the stoma itself hasn't got much feeling in it,if you press the inside of your mouth,the stoma is made up of the same tissue,so while it may look angry ,and have a tendency to bleed easy,you are not hurting mum
The skin around the stoma is where the problems arise,make sure it's washed with plain water and dried well,use the powder ,barrier spray/wipes then apply New bag
It maybe confidence your lacking as doing something like this for someone else is quite daunting ,so as you become more confident the anxiety may fade ,if not you really do need carers to do this as your own mental health will suffer because of the anxiety
Good luck