"Can we talk?" I live with an ileostomy

This week, I had an epiphany. I don’t talk about living with an ileostomy.

What made me realize this? My friend and colleague, Jenny Prokopy (Chronicbabe.com), is a freelance writer and was looking for people to interview for a piece that she’s working on for The Phoenix, the magazine of the United Ostomy Association of America. The article is on overcoming self-defeating behaviors to live well with an ostomy.

Of course she was surprised when I asked, “why not speak to me?”, since she didn’t know I have an ileostomy. Jenni and I have known each other for several years, have collaborated on a writing project and have shared a lot about living with illness.

But, I’d never mentioned my own ileostomy, never mind shared what it means to me!

Now, the thing is that Jenni and I haven’t met in person. But even if we had, I don’t think this would have come up. It’s not visible, unless I’m buck naked.

And that was the epiphany. When I mention living with chronic illness (which I do constantly being this is my work), I don’t think about this appliance that I live with as an illness, because it’s not.

But it is a chronic issue, to say the very least. In fact, it such a major factor in my life that I don’t go for longer than two hours without checking in with this “bag”.

But, let’s face, it, people get just a wee bit uncomfortable talking about stool — it’s not polite, “civilized” conversation. Some of my clients are embarrassed when they refer to it and even apologize to me. Now, I’m not shy about talking about this stuff and it doesn’t bother me when someone talks about it with me. But, after all these years, I’m painfully aware that other people don’t share my feelings.

So, I think that this has led me to avoid bringing the topic of my ileostomy up unless directly asked. But, I’m “coming out” of the closet and I’m going to talk about it in this blog and will refer to in my coaching website and I hope that you’ll find it helpful (or at least not stop reading this).

I’ve rambled long enough. Let me just say that for me, an ileostomy was a huge relief for two reasons:

1. It allowed me to get rid of my colon and the ulcerative colitis, an illness that made me very, very ill.

2. I had a choice about my quality of life and I chose to have an ileostomy (rather than having a restorative protocolectomy) because I also have multiple sclerosis and the nerve damage could have made it impossible for me to control my bowels, leaving me as vulnerable as I was.

I’ll write more about this in future blogs. Would love to hear your thoughts if you live with an ostomy or know someone who does.

Rosalind