Living with "The Bag" (no, that's not my pet name for Penny)

I've been living with an ileostomy now for a little more than two months. I know a lot of you are curious to know what its like to live with one, especially given the generally negative reputation that colostomies and ileostomies have out there. So, in order to try and dispel rumors and give all of you an idea of what life with an ileostomy is like, I thought I would post a bit about my experience. I won't show pictures or video or anything like that but if you don't want to know the details you better stop reading now.

My ileostomy is about an inch in diameter and is located two inches to the left of my belly button. The centre of it is about an inch below the centre of my belly button which puts it above the waistline of most of my pants. It is a loop ileostomy which means my entire intestinal tract is intact from beginning to end except the doctors cut a hole in my abs and skin and brought a loop of the small intestine through to the surface. The loop is sewn to the skin and then a small incision is made in it so that the effluent can pass to the outside. My loop ileostomy can be reversed in the future, possibly during my liver surgery. The ileostomy itself looks like a pile of ketchup. It's red and protrudes a quarter of an inch above the skin. The small intestine itself has no nerves so the ileostomy has no feeling.

The bag is a relatively simple (yet expensive - $11 per bag) contraption that is held in place by some very effective adhesives. The actual bag is about 10 inches long and 4 inches wide (fully inflated it would be about the size of a 1 litre milk container). There is a 1 inch diameter hole near one end on the back side that is surrounded by a peel-and-stick style adhesive. The other end is open but is sealed by a clip which can be removed to empty the bag. In order to fit the bag over the ileostomy so that no skin is exposed a secondary adhesive ring and some adhesive paste is used (the skin is very sensitive to the acids in the effluent - think diaper rash). Once in place it can be left for about 4 days before the adhesives wear out and the bag needs to be replaced.

One of the main differences as I understand it between an ileostomy and a colostomy (besides which part of the intestine is used) is the frequency with which the bag needs emptying. The colon's main job is to consolidate, dehydrate and package waste for once or twice daily evacuation. This means someone with a colostomy that has most of their colon intact has to empty their bag only a couple of times a day. I've heard also that people with colostomies can even train their bodies to "go" only once or twice a day so that the rest of the day they live with an empty bag. But for people with ileostomies life is a little less predictable. Without the colon to do its packaging job, an ileostomy has a nearly constant output. This means that I need to empty my bag 6-9 times a day. Which actually turns out to not be a big deal since I usually find myself in the washroom with a similar frequency to empty my bladder. Also, I was surprised by how quickly food passed through. It only takes about 3-6 hours!

Overall life with an ileostomy is great. As a guy, I can hide the bag easily under my clothes although frequent readjustment of the bag's position is needed as it fills. There is no smell at all when the bag is sealed so don't fart and try and blame it on me! I can shower, bath, swim and exercise just like normal. The only real limitations would be contact sports (no rugby for me) and some minor diet restrictions (I have to limit high fiber foods like potato skins, apple peels and popcorn and stringy foods like pineapple). There is a body image issue (no one wants an arsehole on the front of their body) but I think it would be much harder to be young woman with an ileostomy than a guy. My least favourite part is changing the bag and only because I'm lazy. It takes about 20 minutes to do it properly, (mostly it's the removal of the old one that takes time) it requires help from Penny and it must be done every fourth morning. Mornings are best because that's when the ileostomy is the least active since I haven't eaten through the night.

There. Now you know more than you probably wanted to know about my poops. Hope you're not eating your lunch...