Middle to late stage dementia with permanent stoma
- Thread starter ged626red
- Start date
@ged626red , hello, I don't have personal experience but have you tried looking for a stoma support group near you, or on line? I'm sure there will be people there who will have dealt with stoma and dementia who can give you support and advice..
Have you asked your GP or the soma nurse if there's support groups?
I've become a big fan of support groups. Meeting and talking with people who are experiencing the same trials and getting advice has been my lifeline.
Have to say, such groups and coffee clubs wouldn't have been my idea of a social event before but life's different and having friends who understand is worth it's weight in gold!
Have you asked your GP or the soma nurse if there's support groups?
I've become a big fan of support groups. Meeting and talking with people who are experiencing the same trials and getting advice has been my lifeline.
Have to say, such groups and coffee clubs wouldn't have been my idea of a social event before but life's different and having friends who understand is worth it's weight in gold!
This question does come up periodically.
If you put "stoma" into the search box at the top you should get all the posts that mention it. Some of them will not be relevant and many of them will be old, but you may find some threads which are helpful
If you put "stoma" into the search box at the top you should get all the posts that mention it. Some of them will not be relevant and many of them will be old, but you may find some threads which are helpful
Search results for query: stoma
forum.alzheimers.org.uk
Hello @ged626red You might find something useful in the above link.
thanks for this however I have regular contact with a stoma nurse and the one nearby in Chadderton Oldham seems to have fallen by the wayside
I have had a colostomy for just over 5 years, I don't have dementia.
For the year or so my nickname for it was Vesuvius!
I now have no problems with an average of 2 pouches/day, I have learnt how to vary the times slightly by knowing what I have eaten, how much I had bent forward and what the last output (technical term) was like.
All this cannot be done by a PWD so I would suggest always change pouch before bed unless it is completely empty and then first thing in morning and then at regular intervals during the day irrespective of how full the pouch is.
By seeing the nature and quantity of output you should be able to adjust frequency of changes and may be able to formulate some rules, for instance white fish, parsley sauce, mashed potatoes means new pouch before meal unless pouch is not completely empty.
EDIT
www.brunleasurgical.co.uk
For the year or so my nickname for it was Vesuvius!
I now have no problems with an average of 2 pouches/day, I have learnt how to vary the times slightly by knowing what I have eaten, how much I had bent forward and what the last output (technical term) was like.
All this cannot be done by a PWD so I would suggest always change pouch before bed unless it is completely empty and then first thing in morning and then at regular intervals during the day irrespective of how full the pouch is.
By seeing the nature and quantity of output you should be able to adjust frequency of changes and may be able to formulate some rules, for instance white fish, parsley sauce, mashed potatoes means new pouch before meal unless pouch is not completely empty.
EDIT
Stoma Teams & Clinics | Brunlea Surgical Supplies
The following is a list of Stoma Teams in your area and where they are located along with their drop in clinic information available for their registered patients only. Please only contact the relevant Stoma Teams if you are registered with them.
www.brunleasurgical.co.uk
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@ged626red
How do you get your stoma supplies?
If it's by request from the clinic next time ask for appointment with the stoma nurse.
If it's from a pharmacy as we are both in the NCA, me Bury, you Oldham, you should be able to use the system I use.
I have two 'not in use' boxes, when I need to break into them I email the clinic requesting two boxes which arrive in a day or two from the wholesaler in Rochdale complete with complementary disposal bags and patient wipes.
When I was trialing various products they happily took back any surplus for distribution in third world countries.
How do you get your stoma supplies?
If it's by request from the clinic next time ask for appointment with the stoma nurse.
If it's from a pharmacy as we are both in the NCA, me Bury, you Oldham, you should be able to use the system I use.
I have two 'not in use' boxes, when I need to break into them I email the clinic requesting two boxes which arrive in a day or two from the wholesaler in Rochdale complete with complementary disposal bags and patient wipes.
When I was trialing various products they happily took back any surplus for distribution in third world countries.
Hi Nitram
thank you for both replies - perhaps I have as normal not given sufficient information here - I see our stoma nurse in Royton regularly - it is more to do with the dementia side when it gets much worse and my wife does not want me to change the bag which I do every five days as per instructions and as she screams now what will it be like later on!! in terms of the progression of the disease - Brunlea supply and I ring them when needed and they are very efficient however it is this issue above which is the problem - I was really looking for someone who has gone through this aspect for any advice
@ged626red
Must be an ileostomy, long shot if you haven't already tried https://manchester.iasupport.org/ they may be somebody with a similar problem.
I assume you have tried copious adhesive remover spray in case it is hurting.
You could try a different colour bag introducing it as one made especially for her.
Must be an ileostomy, long shot if you haven't already tried https://manchester.iasupport.org/ they may be somebody with a similar problem.
I assume you have tried copious adhesive remover spray in case it is hurting.
You could try a different colour bag introducing it as one made especially for her.
