Good Days & Bad Days

Naked stoma in this post.

Last week I spoke about some of the struggles I had been having with regards to my ileostomy and I try to talk about the good and the bad.

Sometimes I hate my stoma.

Actually scratch that I hate the things that make life with a stoma more difficult.

Like hypermobile Ehlers Danlos Syndrome (hEDS) and eczema.

– with the hypermobile Ehlers-Danlos Syndrome my stoma has started to fall in on its self; which is easier to deal with than a prolapse or at least I think so. But it allows leaks to happen as there is now a gap between my skin and the bag.
– the eczema often ends up in me scratching my bag off. Yeah the bag comes off fully on one side so that obviously ends up in a bag change.

I have noticed tonight I have a small hole next to the sore bit of my peristomal skin. Then under that there is a fold that can be mistaken as a granuloma but its not. A granuloma is basically healing tissue that builds up due to irritation. Or that’s how I describe it.

My skin breaks down really easily due to high frequency output that when I consider loperamide my hEDS goes nah let’s thicken that right up and make it so now you risk pancaking – that is where the bag pushes off because your output goes outward instead of down. Having an ileostomy means I shouldn’t get output similar to a colostomy as I have no large bowel to wring the water out; but my hEDS frequently says otherwise.

Even with these and some other issues having a stoma has still revolutionised my life because without it I might be dead and I wouldn’t have Button. Ra-Ra wouldn’t have her mum and 00Steve wouldn’t have his wife. Ultimately the good days far out weigh the bad days I deal with but I often feel if I don’t share the bad days I am not being honest and showing both sides of ostomy life when I only mention the good days.