1. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,441
    East of England
    I know what a tough time you have @maryjoan and I am so sorry. I hope you get some help as suggested because you help others so much. Good luck with that x
     
  2. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    Please let's us know how your get on. I really cannot imagine how you do it single handed most of the time Carers or not.
    Love and a hug, Alice, x
     
  3. nitram

    nitram Registered User

    Apr 6, 2011
    19,154
    Male
    North Manchester
    #443 nitram, Jan 30, 2019
    Last edited: Jan 30, 2019
    I am a 12 week old colostomate hopefully reaching the end of a very steep learning curve.

    In my experience pouches only came adrift when the adhesive degraded because of output being forced between the skin and the appliance, else they remain firmly attached.

    This was caused by 'pancaking' (Google?). A high output rate for the consistency meant the output did not drop down the pouch and was forced between the appliance and the skin. As I am now generally eating normally the consistency does not vary much and I have just started training the output rate by taking loperamide.

    Normally faeces is stored in the rectum, when it is full you get the urge, the pouch replaces the rectum. In my case I went regularly every morning, either before or just after breakfast, this means my bowels habitually output during the night, hence my loperamide before evening meal to slow them down over that period. Dosage can alter as the bowel is trained.

    I have tried various manufactures' products both one and two piece and have settled on a two piece design. Manufacturers are happy to provide samples as supply is very lucrative, I email the stoma nurse detailing what I would like to try and the samples soon arrive, usually the next day. You may not be in a position to do this but the stoma nurse should be able to help.

    There is a vast array of appliances and products to assist with adhesion, have a read through one manufacturer's info on adhesion https://www.coloplast.co.za/Documents/Stoma/Guide_to_Ostomy_Adhesives.pdf
    At the end you will find case studies and tabular information about which product suits which type of stoma. There is also brief information regarding accessories.

    You said
    if this means he has no colon at all he has an ileostomy (stoma on right hand side) in which case much of the above does not apply, the output will however be more acidic and therefore more aggressive on the adhesive.

    Browsing around the web sites of two major appliance suppliers may be helpful

    http://www.dansac.com/en-gb
    https://www.coloplast.co.uk/

    You really need to push the stoma nurse, try removing a freshly fitted appliance by rough handling, if it comes off something is wrong with how it was applied - bad practise or need for extra skin preparation - if it does not query adhesive degradation and choice of appliance or as in my case (although I have settled on a concave base plate as being slightly better) medication.

    If you require more detail just start a conversation.
     
  4. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,984
    Suffolk
    (((((Hugs))))) maryjoan. You have a lot on your plate, so this is just to help you feel better!
     
  5. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    Thank you so much ! a virtual hug is always welcome !
     
  6. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    521
    Female
    Basingstoke, Hampshire
    maryjoan, I can't imagine what you are having to deal with and am unable to give you any advice.I just wanted to send another hug.
     
  7. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    Thank you - I emailed the Colostomy UK people who had a leaflet about stomas and dementia - which they kindly sent for me to download. Which I did.
    It was gentle and nice and talked about this and that - but no help as my OH does not acknowledge his dementia, and would never agree to any of their strategies - the only thing I can think is that when the dementia gets worse, he will not be so opposed to suggestions....
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,716
    Female
    South coast
    Does Colostomy UK have a forum like TP?
    Even if their leaflets arnt helpful, if there is a forum you might get some people who have already coped with this and more helpful advice
     
  9. Loopiloo

    Loopiloo Registered User

    May 10, 2010
    6,118
    Female
    Scotland
     
  10. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,356
    Female
    South of the Border
    Yes, I am trying to find something like that... thanks a lot - I have also had a phone call this afternoon - a journalist wanting to interview me regarding respite care or lack thereof - phoning again tomorrow pm to do interview
     
  11. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    Well done again! Will we be able to hear/read? X
     
  12. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    521
    Female
    Basingstoke, Hampshire
    I just googled 'colostomy forum' and a Macmillan one came up, but I don't know how to put a link on here.
     
  13. Amelie5a

    Amelie5a Registered User

    Nov 5, 2014
    91
    Scotland
  14. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    521
    Female
    Basingstoke, Hampshire
  15. Dutchman

    Dutchman Registered User

    May 26, 2017
    415
    Male
    Devon
    Hi everyone. Look, am I being selfish? We’ve spent this afternoon looking at a film and then my wife sees nothing on the tv that she likes so wants to go to bed ...at 17.00. She wants me to do the same. I say no and I’m accused of being selfish never thinking of what she wants.{not true) . She Goes upstairs in a sulk. Trouble is that she doesn’t really understand anything grown up on the tv passed 18.00. I want an easy life but going to bed 17.00 is pushing it too far....or am I being self centred? How would you guys handle it?
     
  16. canary

    canary Registered User

    Feb 25, 2014
    10,716
    Female
    South coast
    No, of course youre not selfish @Dutchman . I wouldnt go to bed at that time either
    Will she sleep through the night if she goes to bed at 5.00pm? If going to bed at that time means that she will be up during the night then I would try and find some way of keeping her up - maybe DVDs that she can still cope with.

    I usually go to bed after OH and I say that Yes, I will be up soon - I just need to finish [whatever] before I come. He then falls asleep very quickly so is unaware when I go to bed.
     
  17. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    No, not selfish at all, quite unreasonable but then the illness makes this so.
    Your wife is probably just asking for reassurance as much as anything. A bit like children who keep asking for water.
    Canary's ideas are good. Just reassure and distract, use delaying tactics.
    If she wakes up too early that is another problem, mine does when he gets anxious especially when we have an appointment so I reassure and settle him down again.
    Like with children there is an instinct for rattling you, so keep calm reassure and the anxiety may lessen.
    Sleep well
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    415
    Male
    Devon
    Thanks everyone. Thing is , I that when I got upstairs at about 20.00 she said you’re late so I got her to listen to the speaking clock to prove she was wrong. If I can get to about 20.00 then I can at least read. It’s 00.2 and she says to me in bed ...is that you. Yes I say, who do you think it is and she says I don’t mind. Really!! Funny really, well not really. Had two occasions now where she thinks I’m someone else. I believe I might be getting hardened to this. Is this what happens?. Watching something on telly now as can’t sleep.
     
  19. marionq

    marionq Registered User

    Apr 24, 2013
    5,893
    Female
    Scotland
    Yes you do harden yourself against hurt feelings. My husband is in hospital and yesterday the male nurse said to him, “John, here’s your wife. Whats her name?”

    “There’s so many of them” he replied. Names or wives? He refused to say my name and I thought he had forgotten which would have been another backward step but once the nurse went away he said it. Sense of humour or stubbornness?

    In fact he seems quite content to sit and look at his magazines now he is feeling better and settled and I don’t think he’s bothered whether I’m there or not. I’m glad for him but feel we’re constantly slipping further apart.
     
  20. AliceA

    AliceA Registered User

    May 27, 2016
    2,472
    #460 AliceA, Feb 4, 2019
    Last edited: Feb 4, 2019
    Marionq, I would think a sudden direct question from the nurse was a bit confronting, when someone is unwell and in a strange place. When I was in hospital I observed how little understanding was of the illness and how to deal with it. I do not think all Carers get it right either.
    I turn up once when my husband in hospital, I was one too many, I got a glare and he he said I am going to sleep now! I went to get a take away coffee and tried not to reflect on the effort it took to visit!

    Even the simplest thoughts, known well, take a while to 'shuffle' together to be expressed at the best of time.
    As a couple we have seldom used each other's names in everyday ways.
    My grandmother and I were extremely close but when in hospital she use to refer to me by a cousins name, an elder granddaughter she had seldom met.
    It is kinder to ourselves to accept these things just happen, to tell ourselves it is not intended.
    With this disease I think we just have to follow where the ill person is and drift with then so we do not drift apart.
    I had this with a parent, had I allowed myself to drift apart I would have missed a time of clarity that was amazing.

    It is really hard I do know that, we want what was and not what is.
    This is why I think it is important that we learn to look to our own needs so we are strong enough to keep adjusting to keep the core relationship on an even keel.
    I know words are easy, especially easy now it is morning and the day is yet to start.
    I snatch my quiet times when I can, hope your day goes smoothly. XXX
     

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