Mum not coping with ileostomy

My mother 75 went under surgery to remove a cancer from her bowel in June. Unfortunately this first operation resulted in the new join in the bowel leaking and she was rushed in for a second emergency surgery and had an ileostomy stoma bag fitted. It was nearly 4 weeks before she got out of hospital mostly due to her inability to change her stoma bag. She eventually was able to do enough for the stoma nurse to agree to send her home, but since getting home she is relying totally on care workers and family members to change and empty her bag. Would anyone have any advice as to how we can best help her to help herself?

THank you

  • Hi , I’m sorry to hear about your Mum, I’m not a member of this group and haven’t got the experience that your looking for, but as the online community site will be temporarily off line tomorrow and then in read only til Wednesday I didn’t want you to feel your post was going unanswered. Although us patients and carers won’t be able to help with our experience for you question Macmillan support is still available, they have said

    “If you need to talk to someone while the Online Community platform isn’t available, please remember the Support Line is here for you. You can contact the Support Line over email, live webchat or call 0808 808 00 00 7 days a week between 8am-8pm.”

    When the site is back up you might also want to try the friends and family group for support and suggestions as well.

    Take care.


    What is a Community Champion?

    You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

  • Hi, it's been a while since this post but I hope that things have improved since then? I had a temporary ileostomy for 7 months and it certainly took some getting used to. I think you need to get to the bottom (sorry!) of what is preventing her from doing it. It's very probably a confidence thing, which her stoma nurse should be able to help her with. Message me if you need any tips. 

  • Hello KTatHome

    This is a long time after your post so I am hoping that you have accessed some help in the meantime.  I had emergency surgery like your Mum and left hospital with a new stoma too.  I only had one trial run at changing the pouch before I left due to an emergency on another ward taking the time of the stoma team.  

    I felt really shaky being in charge of this new 'organ' as well as being so weak from the surgery.  Take it slowly is my advice.  I found the first months so stressful.  Getting the morning change done took ages but the day couldn't start until I didn't have to worry about that part of the business for another 24 hours.  But in the weeks that followed I heard several stories about new Ostomates who couldn't bear to deal with the pouch or the stoma - one long conversation was with the young electrician who came to install a shower and whose Mum had just had surgery.

    So the first point is, don't make it a big deal or a secret out of it.  Our stomas have saved our lives as well as changing them and they are miraculous.  So are we for getting through the experience of cancer and surgery.  Your Mum and family just have a new pet with some particular needs.

    Stomas aren't embarrassing (mostly).  Nor are they delicate - mine is shoved into an elastic girdle for gardening, exercise and the like and never complains.  As my stoma nurse said - you can't squash it so don't be afraid, just gentle.  Help Mum to get to know what it looks like and what its habits are.  I have found that a little admiration goes a long way.  I also notice that people who name their stoma seem to form a relationship with it more easily - see the pet comment above.  So far I have met with the owners of a Rosie, a Rosebud, a Stan, a Rudolph (born over Christmas) and I am the proud partner of a Charlie-pun intended.

    Let Mum know that she will have more independence and control once she is doing the changing.  And who wants to be dependent on others?  Also there is the feeling of confidence that you can manage this process whatever happens, wherever it happens.  But always talk to the stoma nurses as they are so supportive and know all the tricks.

    Two years down the line Charlie and I are getting along fine, back to doing the things I used to do and pouch-changing down to a record 10-15 minutes every morning.  It does get better.  We get better and then our lives continue on the other side, a bit different but OK

    Hope this is some help and that things have improved for you both

  • Thank you for the reply, my mum has come on massively from the original post. Still having some issues with leakage but I am taking her tomorrow to the hospital for her to see about trying different bags.

  • You are more than welcome and I am glad Mum has got on better.  I had to change pouch after about a year for the same reason.  I had put on some of the weight lost due to the cancer and surgery and my initial pouch  didn't fit so well.  My stoma nurses were brilliant and guessed the right one for me first time but it can take longer so don't give up.  I still get the odd leak, depending on what I have eaten or, sometimes, if I have a pleat or pucker in the sticky part of the pouch but mostly things are OK.  I really hope Mum continues to improve.  Because we have survived cancer, a stoma is the beginning of life not the end.

    Good luck to you both and stay safe