The summer and humidity, in particular, is tough on us ileostomy folks. My flange (this thing that attaches to my skin) easily gets irritated. I went to a “wound nurse” (that’s what it’s called!) to see if there has been an improvement in the technology over the 10 years since I first got this and learned that, nope, not much has changed.
I hadn’t expected anything different. It’s not like this is a highly competitive market and not lots of dollars spent here.
So, why write about it? Three reasons. Because I’ve decided that this stuff, even if not a chronic illness and especially since it’s not “pretty”, needs some airtime. I also think that by sharing this, maybe other people, with equally “invisible” issues like this, might feel that they’re not alone. Finally, it does impact people at work because when you have an ileostomy, you have physical needs that can preoccupy you and that’s something no one thinks about.
Such as? Well, here’s a list I can think of. You need to be able to get to a bathroom frequently. You also might want privacy in a bathroom (not just a stall) — and that’s really difficult. Finally, you can’t always wear the same kind of clothing that other people do and that can make you feel different.
So? You need to figure out how to make it work for you. Not easy, but doable. But most importantly, you need to notice this and let yourself FEEL it – deep inside. So you don’t resent your body… or your appliance.
Rosalind
edwina says
thanks for actually talking about it. ive lived with one since my late twentys and now im in my fiftys!
without it i would have died.
i may not be able to do alot of things with one but wothout it- i wouldnt have been able to do anything.
and even now with all my other health problems, this is the least of what i am concerned about.
the stinking fibro is the worst of any health problem i have ever gone thru-
and i have been thru alot…
Rosalind says
It’s true that it’s all relative, isn’t it? Thanks for sharing.