Let’s talk about that one special day of your week. You have grocery day, laundry day and now, as an ostomate, “bag-changing day”. How do you know when it’s time to change that bag of yours? Because of problem skin, some people have to change their bag every few days. Skin may be sensitive, painful or itchy, and may need extra attention. At this point the bag starts to wear out, lose its fresh appeal and just gets old. Sometimes your wafer will send out a signal. The edges may start to curl and it might slide across your skin just the tiniest bit. If you feel insecure about your wafer ask your medical supply company to recommend a tape that will hold it securely in place. This tape also makes for a wonderful emergency patch (especially if “Fluffy” or “Fido” punctures your bag).

Living with an ostomy will undoubtedly land you in a tricky situation. One of my favourite treats are cashew nuts. I bought some for the Christmas season and enjoyed them tremendously. However, I woke up in the middle of the night and immediately thought, “Uh oh” (when you just know something’s not quite right). I grabbed my bag and it felt like a football! I raced into the bathroom, throwing my nightie over my head as I went, staring in amazement at my tummy. “Rosebud” had been very active, filling my bag with air and cashews to the point where the wafer and tape had both lifted up. Thank goodness it was nuts and not liquid. So there I was, changing my bag and wafer at 3 o’clock in the morning (relieved it wasn’t as nasty as it could have been). When you wake in the night to roll over, fluff your pillow or pull the blanket up higher, feel your bag. If it’s half full or more, empty it. Don’t wait. Sometimes it’s just air that can be released by lifting a corner of the wafer, but doing this could be risky (in the middle of the night, it’s like playing Russian roulette).

During the day, when you’re out in public, you can run your hand over the bag through your clothing to check if it’s filling. I work behind a counter so I can surreptitiously fondle mine. Of course, nothing says, “empty me” like a huge bulge under your clothing. If you look pregnant on one side only, you need to hit a bathroom, pronto. Your home ET nurse has likely suggested you carry a small bag of spare parts everywhere you go. In it, keep everything you need to change your appliance and a plastic bag for disposal purposes. I carry a spare kit in my purse. I’ve never needed it, but it’s there if I do. You may want to keep a kit in your briefcase, car or locker. You may never need it, but if you do, it will be a godsend.

Now that we’ve talked about changing your bag, let’s talk about what happens in your bag when you drink Gatorade. When I was a newbie I became dehydrated a lot in the summer. Summers in Ottawa are incredibly hot and if you don’t drink enough water, you pay for it. I would get extremely ill and vomit a lot. I eventually got the message that I needed more liquid, so I added Gatorade to my diet (electrolytes keep you hydrated). I remember the first time I emptied my bag at work after drinking a bottle of red Gatorade. I thought my bag had filled with blood and I nearly had a stroke. I worried myself sick all afternoon, checking the bag repeatedly until I remembered what I had been drinking and felt like an idiot. A short time later, not having learned my lesson, I had a bottle of green Gatorade and panicked for a few seconds when I saw my bag filled with green liquid. Now, if your bag is filled with a red liquid and you did not drink any Gatorade (or any other coloured liquid) then that’s the time to call for help. Don’t wait.

If you get severe pains behind your stoma, that’s a sign to call for help. About a year after my ileostomy, when it was time to have the rectum removed, I developed terrible pain behind the stoma. The only thing that would lessen the pain was lying down. One day at work the pain got so bad that I couldn’t stand and sweat was pouring down my face. An ambulance took me to the hospital. They put me in a bed and over the next couple of hours the pain went away on its own. They didn’t know what to do (the nurse was upset my bag was beige and not clear so she couldn’t see what was happening inside it). She removed it and peered inside. As she replaced it, she tried to lift up my skin to attach it to the wafer – that hurt like the dickens! When I got home I wrote down everything that had been happening and faxed it to my surgeon. This method worked well with my Gastro Guy, so I was sure it would work with my surgeon, too. I heard nothing from him until the day I had the rectum removed. While I was waiting on the gurney outside the operating theatre, he mentioned he had received my letter. He checked my tummy and discovered I had a hernia under the stoma. He repaired the hernia and removed the rectum in the same operation. If I hadn’t faxed him, I would have needed a separate surgery. So, a word to the wise: tell your doctors everything. If you can’t do it over the phone, then fax or mail them your information (over and over again if necessary). You are the only one who knows how you feel –stoma-related problems must not be ignored.

By the way, “Fluffy” pierced my bag....again!.

It happens.

And that’s ok.


By Kerry Brooks