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