Preparing for living
with an Ileostomy for life
Waiting for an operation that I was supposed to have as an emergency a year ago really has took its toll on my life.
You could say I am lucky enough to have a chance to prepare myself for living with a stoma and getting used to a bag, where as others had it done without knowing and it saved their lives. I was supposed to have an emergency ileostomy around December 2015 but I found out I was pregnant so I couldn’t have the op. However I lost my baby girl at 11 weeks 5 days due to an ectopic pregnancy. I had my last tube removed with her as I lost my first tube in October 2010 when my first pregnancy killed me (luckily they brought me back round) and I lost a beautiful little boy almost 4 months premature. After loosing my daughter they have just left me, for the past year I have been fighting my most hardest battle.
The hospital keep cancelling appointments and double booking me with different appointments making me choose which one is more important.They don’t check me properly when I go for consultations and I tell them how much I am suffering they just don’t care. I have never felt so ill and weak and incapable to do anything for myself so me waiting this long and going through this much agony really inst lucky in my eyes. The feeling of that I am going to die every other month is petrifying. I cant even explain the levels of pain that I feel on a day to day basis it really is too much and to be honest I don’t know how I cope with it, but I do know im getting fed up now and I cant take much more of this crippling agonizing pain.
Now that I feel so ill and weak I am preparing myself for when I do have my Ileostomy so it will be a lot more easier for me to cope with. When I was told I would be having an emergency one I was given packs and information as well as a few practice bags. So now I am going to be constantly wearing one and filling it up with a paste like substance to different levels, wearing different clothes dresses, crop tops, bikinis etc to build up my confidence for when I do have one and teach my self how to empty and re-apply my own bag. This will make my life at the moment a little bit more harder for me as i struggle to even dress myself but its just something I need to do so when it comes to it I dont have to worry about getting used to everything.
They say we have an Invisible Illness but mine is starting to show.
Because I am in need of my operation for an ileostomy and have been waiting such a long time my body has gotten much weaker. I am constantly tired due to fighting my own body every second of the day and due to being poisoned a lot from fistulas, its hard for me to keep my eyes open I just want to sleep 24-7. You can now see in my face how ill I am I have no colour to me, my eyes are constantly half shut because I can barely keep them open, I have bags that wont go away and I just look drained. I am struggling to dress myself get myself up from a chair and I can barely hold my own weight up and i only weigh 47 kg. I feel about 83 years old.
I get anxious about going outside as I fear people will judge me and laugh at me as it has happened before. I struggle to walk at times and people have shouted would you like some fruit with that bowl. Once i sat in the disabled seats on a bus and I had an argument as someone wanted me to move for an older woman who could walk perfectly fine they said your not disabled you dont look ill go sit at the back she has the right to sit there you dont. I had just had an operation on my bum so I was in agony and couldn’t walk much they didn’t believe me, I felt so isolated like what do you want me to do get my arse out and show you the surgical threads coming out of it. This is the problem nowadays so many people judge one another and dont realize what effect it can have on someone. I believe we shouldn’t judge anyone you never know the struggles someone is facing.
Having a bag is a life changing experience I have many friends who have one or have had one at some point in their life and they have made me see there are many pros to it and it will hopefully enhance my quality of life. I will list a few of the advantages that will keep me feeling positive.
No more running and panicking to find a toilet when I am out.
I could be in a club in a sexy black dress having a dance and everyone is totally unaware I will be doing a poo :’) (What an hilarious sly sneaky devil am I.)
I will never have to worry about blocking any ones toilet!! (EVER)
My ass will forever be gleaming. I will literally have the perfect ass. Even if it doesn’t work.
I can eat what I want and not worry about my arse being too sore.
I will be able to go at any time anywhere as no one will know im having a poo.
If anyone ever pisses me off again and tries to talk crap about me I am afraid they will have a bag of crap in their face :’) (Only joking…Or am I?)
I will hopefully be in less pain and more active.
No more accidents and feeling embarrassed when out in public or around friends.
No more straining and nearly passing out crying on the toilet.