As Long As I Can Eat

The strangest thing about having an ileostomy is I suppose exactly what you would expect: not passing stool the way you did your whole life long, or the way everyone else does, or the way the whole animal kingdom does. Even if you’ve never had colitis, this part of your daily routine is probably not the most pleasant, and perhaps you can imagine that you could do without it just fine. You can, but that doesn’t mean I didn’t miss it for a while. I’m not kidding. For several months, I did actually miss the feeling of –

        okay, I know, gross –

but in the privacy of your own home, when you’re all by yourself, you have probably experienced letting out a very satisfying fart, otherwise known as ripping one…

and in your own bathroom, you might have taken a little longer than you needed to and actually enjoyed the sensation of moving your bowels…

so, yes, I missed it.

And for a while I dreamed about it. I had whole dreams that had no plot or story or mystery. Just me, sitting on my throne, reliving the sensation that must be wired into me by now.

But the fact is, as basic as this act is, it is something you can do without and still feel absolutely human. Having an ileostomy pouch is not at all dehumanizing.

What was dehumanizing for me was having a PICC line through which I had to consume all food and liquid when I was very sick with Crohn’s colitis. If you’re not familiar with this, they wire a tube through a vein in your arm (not painful, but weird enough to make you shiver and feel squeamish), and then when it’s time to eat, you hook up to an IV and and all your nutrients just go right into your system. It is a very delicate process that involves close monitoring to determine the right mix of stuff to consume. It can result in diabetes, but although I had to give myself insulin for a while, fortunately I did not end up with a new disease.

I’ve never experienced anything stranger than not eating at all. I did this for thirty days, and during that time I sat at the table with family while they ate. I had thought that I wouldn’t want to be around people when they were eating, but in fact I wanted to be around food as much as possible. I cooked constantly, making exotic snacks for my husband every time I felt hungry (which was just about all the time). I think he put on ten pounds that month because I kept making him food. Then I would watch him eat, and ask for detailed feedback. Was it too salty or did it need more salt? Spice? Could he taste the cinnamon or the dash of coriander? I couldn’t stay out of the kitchen.

Even with Crohn’s colitis, when I had various dietary needs and/or felt a little sick to my stomach, I still participated in eating and in the societal ritual surrounding food. To be restricted from eating at all was very alienating, and I mean that both in the sense that I felt isolated and outside my community, and I also felt alien. It was unnatural to go day after day without chewing, without swallowing. I might not have been dead, but I didn’t feel alive either. I felt like I was existing in an in-between space, where ghostly human spirits sit around watching their loved ones at the family table, eating and talking and laughing. It just so happened that my family could still see me and hear me.

So it is not an understatement to say that the best thing about having had ileostomy surgery is that I can eat, whatever, whenever. I am alive, and I am human.