Everyone thinks because I have a stoma they presume i can look after it myself.
For me this is not the case,, over the years i have been called lazy or not accepting what i have and ignoring what i have.
If i could change my bag i would, there's nothing worse than asking my mum that i need my bag changing. The same goes whenever i am in hospital. Its one of the hardest to things to ask, as i feel so embarrassed and ashamed.
You may ask why i can't change it myself,,, well when i was a young child i had surgery on my spine which they fused and this has restricted my neck movement from looking down at the area.
When i reached my mid teens, i asked if i could try and learn how to manage it, at this point I still had a colostomy so the bag was being changed twice a day.
Using 2 mirrors i tried my hardest and i was getting frustrated each time and after weeks of trying I gave up.
Once i reached my 20s i finally had my first stoma nurse, who i had known as a student nurse and staff nurse on the colorectal ward when i had my rectum removed. She knew my background and this was the start of one amazing friendship from 1993 that still continues to this very day.
She knew that i needed help and told me that was the least of my problems due to all my other health issues. (I will cover these in other blogs)
After building up a trust with her over the coming months, i asked again whether we could try and do some more training to try and change the stoma myself to give me some independence. She agreed but the deal was we weren't going to tell anyone about it,,so there was no pressure on me.
After another 2 months of trying once again i was finding it difficult,,, i could only get so far then i was finding just about impossible getting the bag on.
After getting upset many times my nurse turned around and said, "it's no big deal that you need help. We both know you have tried many times and it's just not happening."
As the years have gone by the harder it gets, and i went through a stage where i thought i was the only person ever who needs help when it comes to changing their bags.
In 2002 I went from having colostomy to ileostomy because of a bad flair up of crohns disease and the conversation with my nurse came up about would i be able to change this bag. Her response was no but i would be able to have some independence with emptying the bag on a regular basis.
I was taught how to do this 5 days after having my ileostomy formed.
So i do have some independence.
Apart of me feels i have failed and i have to live with that and i have to find the strength to over come asking for that help with my personal care.
For me this is not the case,, over the years i have been called lazy or not accepting what i have and ignoring what i have.
If i could change my bag i would, there's nothing worse than asking my mum that i need my bag changing. The same goes whenever i am in hospital. Its one of the hardest to things to ask, as i feel so embarrassed and ashamed.
You may ask why i can't change it myself,,, well when i was a young child i had surgery on my spine which they fused and this has restricted my neck movement from looking down at the area.
When i reached my mid teens, i asked if i could try and learn how to manage it, at this point I still had a colostomy so the bag was being changed twice a day.
Using 2 mirrors i tried my hardest and i was getting frustrated each time and after weeks of trying I gave up.
Once i reached my 20s i finally had my first stoma nurse, who i had known as a student nurse and staff nurse on the colorectal ward when i had my rectum removed. She knew my background and this was the start of one amazing friendship from 1993 that still continues to this very day.
She knew that i needed help and told me that was the least of my problems due to all my other health issues. (I will cover these in other blogs)
After building up a trust with her over the coming months, i asked again whether we could try and do some more training to try and change the stoma myself to give me some independence. She agreed but the deal was we weren't going to tell anyone about it,,so there was no pressure on me.
After another 2 months of trying once again i was finding it difficult,,, i could only get so far then i was finding just about impossible getting the bag on.
After getting upset many times my nurse turned around and said, "it's no big deal that you need help. We both know you have tried many times and it's just not happening."
As the years have gone by the harder it gets, and i went through a stage where i thought i was the only person ever who needs help when it comes to changing their bags.
In 2002 I went from having colostomy to ileostomy because of a bad flair up of crohns disease and the conversation with my nurse came up about would i be able to change this bag. Her response was no but i would be able to have some independence with emptying the bag on a regular basis.
I was taught how to do this 5 days after having my ileostomy formed.
So i do have some independence.
Apart of me feels i have failed and i have to live with that and i have to find the strength to over come asking for that help with my personal care.
Thank you for sharing your experience so honestly and highlighting that things really aren't that simple as some without a stoma may think, and not everyone copes the same or has the same ability when it comes to changes their bags either. Good to see you've taken the jump to start your own blog - you're doing brilliantly! :)
ReplyDeleteCaz x
(invisiblyme.com)
Thank you so much for those kind words. They mean a lot to me. x
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