Ileostomy Road Map

I was thinking today about how little I knew about ostomies and all the stuff related to them before I started doing my research to gear up for surgery. I thought maybe it might be useful to lay out a little information about it here for those of you who are possibly having surgery in the future. I also thought it might be a nice thing for those of you who someone who has an ostomy or maybe you're just curious. I am more than happy to answer questions, too...so leave any you have in the comments and I'll post some replies.

So it all begins with the stoma. In my situation, I got an ileostomy which means my colon (large intestine) was removed and a piece of my small intestine now pokes through my abdominal wall. They basically pull a little out and then fold it back on itself (like a turtleneck) and then stitch it in place. The stoma is red because it's the inside of the intestine. It can bleed a tiny bit when I clean around it, but it doesn't hurt at all because it doesn't have nerve endings. The stoma is now where any waste or gas I need to pass comes out of my body. The weird thing about a stoma is you have no control over it like you do when you have your rectum and go the old fashioned way. When stuff gets the opening, it just comes on out. This includes gas and it's way louder than when it exits through the traditional route. This can be humorous or embarrassing depending on where you are and who you are with, but there is really nothing to be done about it. My stoma is located to the right of, and just below, my belly button. Most ileostomies are in this general area, but they can be on the left sometimes.

Since the stoma is just randomly letting stuff out, I have to wear a pouch all the time to collect the output. There are a lot of different pouching systems (often called appliances) out there, but I'm just going to talk about the one I currently use. Right now I am using a two piece pouching system from Hollister. The first piece is called a flange, or wafer, and it's what sticks directly to my skin. There is a hole in the middle that my stoma pokes through. The type I wear is called convex and it is curved on one side so it presses my tummy mush down and helps the stoma stay extended into the pouch better (instead of falling down even with my skin). This helps prevent leaks which are bad news because they cause your skin to get majorly irritated and make you smell like poop. The wafer looks like this.

The second piece to my pouching system is the actual bag. Right now I have these bags that are clear on the front. I am using those because it's what they started me on in the hospital, and they also make it easier to see as the bag is being put on while I'm getting used to how to do it. The downside is, I can see everything that goes into the bag and it's kind of gross/weird to be looking at a bag of your own poop all the time. When I place my next order for supplies, I will be switching to the opaque bags which are tan colored and you can't see what is in them. This is what the pouch looks like.

There are some other items that are used to protect the skin, clean things up, etc. but the other main item of interest for applying the pouching system are these paste rings. They are actually pretty cool because they fill in the gaps around the stoma and help make sure you get a good seal. This is really important for my situation because I have a squishy tummy (no washboard abs here, sadly) and there is a dip on one side next to my stoma. Without these paste rings, I would have leaks in that area and it would be a constant struggle. I get a kick out of the fact that the paste rings look like miniature versions of the wax seal you use when setting a toilet....but, I'm just weird like that. Here is what they look like.

So the way it works is, every 3-4 days or so I take the old pouch and wafer off. It basically just peels off like a giant Band-aid or something like that. Then I use some mild soap and water on a gauze or cotton square to clean up the skin around the stoma. I also check for any skin irritation and apply a special powder to help protect and heal that area up if needed. Once that's done, I take out my stoma measuring guide to check the current size of my stoma. When you get a new stoma, it's pretty swollen so it keeps getting smaller for awhile and you have to check it each time you change. Once I know the current size, I cut out the right sized hole in the back of the wafer. I smoosh the paste ring a bit until it's softened and the right size to go around the hole in the wafer. By now, the skin around the stoma is dry, so I can place my wafer and smooth the adhesive down. Then the pouch snaps on and I put my hands over the whole thing for a few minutes to let my body heat warm up the adhesives and make sure I get a good seal. That's it, pretty easy. The trick is to have everything ready to go so you can move quickly and try to get all of this done without your stoma going off and making a mess. So far, I've had good luck with this and I hope it stays that way.

I have yet to actually do the whole thing start to finish on my own. So far I've gotten things ready (cutting the wafer, putting the paste ring on, etc.) while my nurse has done the cleaning and placing the wafer for me so I wouldn't have to mess with the staples that were in my stomach. Friday will be my first go at doing the whole thing myself, but I'm confident it will go well and I won't have any problems.

Day to day, there isn't much to having the ostomy. Right now I empty my pouch about five times a day. I just do it when I normally go to the bathroom, though I will make a special trip to do it if we are going out, right before bed, etc. I've been lucky that my output is pretty low and I can mostly sleep through the night at this point without having to get up to empty. Emptying the pouch is really easy to do. All I have to do is undo the velcro, unroll the end, pinch the sides together, and it empties out. Right now I have to empty into a container to measure how much is coming out so I can keep track and call my doctor if there are any problems. I only have to do that for one more week. Once that is over, I will just empty it right into the toilet...easy peasy. I also discovered that the belly bands I bought when I was pregnant make great ostomy belts. I just slide one on under my clothes, fold the bottom edge under a bit, and it holds the pouch flat against me and supports it all very nicely. I've been wearing this to sleep in, too and it really helps me to feel more comfortable and secure that the pouch isn't going to flop around everywhere while I'm sleeping.

Well, I think that about covers every thing. Like I said, if you have any specific questions leave them in the comments and I will try to answer them as best I can.