There I said it.

I’m sitting here the day before my ileoscopy. It’s a beautiful day. The sun is shining. I can hear the birds signing. I’m listening to The 1975. And I’m scared. Really scared.

This is something I’ve never really spilled my guts about before. But the thing about living with chronic illness is the fear.

The fear of pain. The fear of the pain coming back. The fear of the pain never going away. The fear of never regaining control again. The fear of how this impacts others. The fear of what if this time I can’t overcome it.

I’ve had a really good run with my health. Apart from three nasty bouts with COVID, I’ve been really lucky. So lucky I forgot that I’m a sick person. It’s easy for this to happen when I don’t look sick. I look freaking great – something I said to one of my doctors on Tuesday. It’s hard to believe that I am sick.

Ulcerative colitis doesn’t go away. An ileostomy is not a cure. The chaos that resulted in ulcerative colitis is still there pulsating in my cells. I just don’t have the normal symptoms anymore. Instead I have the kind of pain that doesn’t show up on scans or in blood work.

Pain that makes it hard to drink a glass of water. Pain that has me doubled over in kitchen hoping Marc can’t hear me wincing. Pain that makes me never want to eat food again. Pain that just never really goes away.

Somedays I think it must all be in my head, because it doesn’t make sense. I wonder if maybe I’m a bit of a softie and that this pain is not real pain but rather an annoyance. The thing is – I know me. I know what I can tolerate.

So tomorrow I’m going for an ileoscopy. It sounds as awful as you think. A camera is inserted into my small intestine so my doctor can see what is going on. The joke about all this is, even if our suspicions are confirmed and I’ve developed adhesions in my solo intestine – there is nothing to be done.

Adhesions are a side effect of some surgeries. The only way to get rid of adhesions is surgery. Adhesions are a side effect of surgery…

Last week a friend asked me how I was feeling about my scope on Monday. I brushed off the question – “yeah, no big deal. Just a scope. I’ve had it before.” Tough talk. That’s what this was.

Deep down I’m afraid there are adhesions. Deep down I’m afraid there aren’t adhesions. What if they can’t see what is causing the pain? Is it all in my head? Am I being overly sensitive and reactive? At least if there are adhesions, I’ll know and we can figure this out.

Sometimes I’m really scared. There I said it.