I worry about the future. Having a permanent stoma for starters, will I cope? What if I get arthritic fingers? What if I am unwell and cannot manage things? The thought of being in hospital or relying on others to keep me clean and change the bag when needed scares me. Will they know how to apply my seal first and clean around the stoma properly? I have a stomal fistula which I may be getting sorted, but what if they can’t sort it and I have it forever ? It means I need particular attention paying to the skin prep, and a bag change may need to be done quickly.
I have been in hospital with elderly patients around me and when they get no one to answer their calls, It is all so uncertain. I know nurses are busy but when someone uses their buzzers because they really need the toilet it is heartbreaking to see them suffer, and it is since those times that I worry for me and others like me.
When I was in hospital having had my stoma, I was acutely unwell and struggled with doing my stoma bag change, and one time I leaked and a healthcare assistant came to ‘help’. It was the worst experience because my stitches were still healing around the stoma and because of the fistula I had very sore skin. Anyway the HCA was so rough with cleaning my stoma I asked her to stop and put my hand on her arm. She turned to me and told me not to touch her. It was an awful experience and I don’t think everyone understands the pain you can get with deep wounds around the stoma. To this day I don’t really know why she was so rough and unpleasant, I can only assume she had had a bad day. Needless to say, I needed a fair bit of morphine that night.
I am sure most of my fellow ostomates have had some thoughts about their future ( I am sorry if there are those that haven’t until reading this ) I think it is a question that needs addressing, to whom I don’t know.
The second thought I have is what if I am still leaking from the fistula when I get old? I can’t possibly keep up with putting the swabs there forever can I ? It’s just so overwhelming sometimes.
I guess it is the same for anyone with permanent disabilities, I would be interested in your thoughts.
I feel exactly the same way Clare. Since having the fistula my fears have deepened as it’s so difficult to manage. My husband isn’t that good with the bags so I tend to manage them alone. I live in fear of losing independence and having to rely on people some of whom just do not care. Your experience with a HCAis so upsetting but typical I’m afraid. It’s bad enough with just a stoma but to have a fistula too is frightening, I am scared I won’t grow old but also scared of what life will be life if I do x
On a positive note I’ve just come out of hospital after a week with food poisoning. Every staff member I met was really lovely and caring, made such a difference to how I coped x
It weird because I mentioned it in the interview and they said that you had said the exact same thing. Glad you had a good experience in hospital, is that a different thing you went in for?
So relevant to me lately – literally what plays on my mind with having a stoma and chronic health issues. It’s a worry.
Hi Meagan, folk say don’t worry about things you can’t control but that is easier said than done.x