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.
