Living with a stoma: Is it a good life or just a different life?

Clare Mee
Clare Mee
I am all for saying my stoma saved my life, and it did. But I would prefer not to have it at all and be well. That is not going to happen so I accept my life and live it to the best I can.

I have been thinking lately, I know. I had better take it easy. Most folk think that when surgery is done and we are at a place where we can go and live life again, we are well and back to our old self. Well, it’s not quite like that.

I would much rather be well and not have a stoma with the complications etc that goes with it, but also I prefer a stoma to being very ill with IBD.

So my life has changed and I have no choice but to accept it and move on. Moving on takes time and courage as we explore stoma life and what it means to us and our families.

Many factors can determine whether we think our lives are great after stoma surgery or just better. Do we have support? Do we have families that accept the new us? Do we feel comfortable in our own skin? Do we feel well?

It isn’t an easy ride, so when people say we look well again and isn’t it great that you can work and swim and all those other things we did before surgery, they don’t see the preparation and mental anxiety of doing those things.

I am all for saying my stoma saved my life, and it did. But I would prefer not to have it at all and be well. That is not going to happen so I accept my life and live it to the best I can.

I do things differently, and haven’t yet decided to try swimming, I just hate the feel of a wet bag, and because I don’t like changing the bag standing up ( I have a fistula at the base of my stoma where output comes out of) the anxiety over it outweighs the actual need to swim. I also find I am constantly patting my stoma to check that it isn’t too full or leaking,  it seems to be more subconscious patting.

Many people with a stoma have complications or more than one surgery, so a stoma is not always the end of medical or surgical interventions, so that is more worry and stress. No one sees all of this,so I feel we should get it out there that people with a stoma have been through an awful lot of stuff to get to where they are now. They have also been through a lot leading up to their surgery and that needs to be told, because to understand what a stoma means to someone and their life you need the whole story.

Parents
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  • I totally agree I had mine in 2008 then it all went wrong I had lots of emergency surgeries  which nearly took my life I then had a wound manager bag for a year before they re sited my stoma but had to remove more bowel I now have to also have TPN as well, I have two stomas  and it’s not easy at times you feel so low and people think because you look ok on the outside that your body is ok on the inside. But I have accepted my life like this as I wouldn’t be here otherwise although sometimes I can be poorly from both my stomas but I’m still here so that’s a good thing! 

Children
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