The annoying and weird stuff about having an ileostomy

WARNING – STOMA PHOTOS

Although my life is better with a stoma there are obviously some things that are not so much. My first pet hate is the dreaded itch and it you don’t have a stoma then let me explain….

Sometimes your output ( poo ) leaks a bit under the baseplate, it can’t always be helped as there is always a small gap around the stoma so you don’t strangle it, ( believe me, I have wanted to strangle it a few times ) and this means that the poo burns the skin which starts off by causing the most painful itch that you can’t get to unless you remove the bag, and it can go on for a good while. Your skin eventually gets used to being burned by your poo and the painful itching stops, but it leaves very sore skin.

( The bobbly bit is a fistula where I get output from when I shouldn’t )

Also for no obvious reason your skin decides it doesn’t like the bag you have been using for the last 6 months, and reacts to it by being red and sore too.

( This photo is a mild soreness around the stoma, it has been more severe at times)

 

I started with one type of bag 3 yrs ago and all was well until one day I started with a reaction and it just got worse and worse, so I had to change my bag, no rhyme or reason.

I also hate it when ( again for absolutely no reason that you can think of) your output get so watery it looks like a well known water feature.

( gross I know, but thats the only word for it ). As you can imagine, changing the bag when you have Niagara falls doing its thing is no mean feat. Oh and it makes your skin red raw if it gets through your bag.

Granulation is fun, bumps and lumps of over granulated stoma develop and look unsightly (relatively speaking ). They can be uncomfortable and usually have to be frozen off with silver nitrate.

And another thing…….worrying what people think all the time, I really shouldn’t but sometimes I do. I try and be brave and ponce around the beach with my stoma cover out but deep down I am still acutely aware of folk looking. Half of me isn’t bothered and the other half, that annoying devil on my shoulder, tells me I am. It is a weird thing to be proud of my scars and showing them off, to that little voice that’s they’re saying ” should you really be showing the world ?” same with the blog, should I really be showing everyone my arsehole, cos that’s really what I am doing indirectly, or does it matter what people think? as long as I am helping people and raising awareness. I have decided to carry on and show the world because that is more important to me.

Using a disabled toilet is another thing, the amount of looks I get because I sometimes use a disabled toilet. If only they knew why, but why should they? it’s absolutely none of their business.

The fatigue….it is ruthless. I am not sure why I get it and if it has to do with my surgeries but it can be very debilitating. One minute you are like a ” normal “person going about your day, then wham, you are totally and utterly exhausted unable to function that well at all.

The strange….There are times when weird shit happens. You pass an identifying piece of food like a chunk of mushroom. I remember changing my bag and seeing two fairly large chunks slip out the end, and taking a few minutes toΒ  identify it. You forget about that beetroot you had earlier and nearly pass out with fear when you empty your bag to see what appears at first glance to be a whole lot of blood.

You feel like you need a poo the old fashioned way, that’s very weird. You can feel gas travelling around your small bowel and it gets to that point when you would have passed wind from your bottom the normal way but it then carries on towards your stoma and you fart through that instead. Going through customs and instead of the officer patting you down and scanning the top of the bag through your clothes, asking if she can ‘have a quick peek’ !!! and when you open the peep hole in your bag she looks at you in a feeling sorry for you way, with an intake of breath through her teeth as if to say, that looks sore.

 

 

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