Someone there with me

May 16, 2009

It has been a really good day today. I have a lot of energy and very little pain! That's a great combo.

For some reason today I want to share a little more about life with an ostomy. I know people are curious - who wouldn't be? Some of you I'm sure have had experiences with people with ostomies, so this won't be new. I know I'm not alone out there. Although sometimes I am curious about the percentage of people in the country who have an ostomy at any one time. When I'm in large groups of people I look around and wonder. You really can't tell just by looking at someone. Ostomates get pretty good at disguising their appliances. I had a couple of friends that I made after my surgery and I didn't tell them till months later. They had no idea.

Oh, I just now remembered what started my train of thought in wanting to share more about the whole ostomy situation. Last night I drank a hard cider for the first time in a really long time. There are still certain foods that I'm afraid of. Carbonated beverages are one of them. When I had my ostomy, I had to avoid foods that caused me gas, especially before bed. There were a few times that I ate something gas producing (you wouldn't believe how much carbonated beverages, chewing gum, etc. causes gas) and went to sleep, only to wake up with my ostomy bag filled with air like a balloon. You might think that's kind of funny, until you have an experience of having your stool filled ostomy bag spring a leak because the seal got pulled away from your skin because of too much gas.

When I had my ostomy, gas was one of the trouble makers. Another problem that was really hard for me to deal with was that I could feel stool coming out of me and filling my bag. It totally killed my appetite. I'd be sitting down to a meal that I had been looking forward to and maybe twenty minutes later stool would start emptying before I had even finished the meal. I've told family and friends to imagine eating every meal sitting on the toilet going to the bathroom. Makes you want to chow down, doesn't it? Right.

So the ostomy bags (they are really called appliances, but I use the term ostomy bag because I think it's easier for people to imagine what I'm talking about) are plastic and about twelve inches long (though you can get smaller ones, but you have to empty them more frequently - and when I say more frequently I mean maybe every hour or hour and a half). There is a plastic clip that you clip the opening of the bag closed with. The plastic clip is about two to three inches long and maybe half a centimeter thick. The clip was sometimes more troublesome than the bag itself because at least the shape of the bag wasn't solid like a clip. There were certain pants that I could no longer wear because you could see the clip at the top of my thigh.

The ostomy bags have a wafer of adhesive on the back of them which you can cut a whole in to fit the size of your stoma (stoma being the nice word for the part of your intestine that is sticking out of your abdomen.). The adhesive is amazing. When I wasn't having problems with my stoma, I could use one bag for three or four days. The adhesive stuck that long. You can also buy ostomy bags that are pre-cut, but my stoma was never the exact sizes that they sold, so I had to always buy the cut-to-fit ones.

The ostomy bags that I had to use were see through. I hated that. I had a reaction to the adhesive on the ostomy bags that were opaque. Sometimes it was worth it to get a rash just so I didn't have to look at the crap in my bag all the time. And when I say all the time, I mean any time I went to the bathroom (every couple of hours or less) to empty my bag. There's just something that happens to your psyche when you have to look at shit all day long. Hmmm . . . I suppose it's similar to changing diapers all day, but different.

Another thing that was tough on my psyche was that I could see what I ate coming through me. Sometimes it was funny, "Hey Jeremy, I just passed a black bean!" Sometimes it wasn't so funny, "Hey Jeremy, are those my pain meds in my bag and they didn't even get digested?" Yes, Jeremy was intimately familiar with my ostomy bag and the contents therein. It was scary too. The stoma's opening was smaller than a regular person's anus, so you had to be careful to chew your food and eat foods that could process fully, or you risked a blockage. I never had a blockage, thank God. People get through them, they don't kill you, but they can be painful.

I was told that if I ever got a blockage I was to go immediately to the nearest ER.. I had a printed out list of instructions to give to the ER folks explaining to them how to deal with the blockage. Man did that freak me out. No way was I risking anything to get a blockage. Every bite I ate I sat and thought about it, worried that if I didn't chew enough I would end up in the ER. These are some of the major reasons that I got down to 127 pounds on my 5' 8.5" frame.

Then there was changing the ostomy bag. That was quite an ordeal. I hated doing it. Jeremy knew how much I hated it, so he took over the process. We had to cut the adhesive on the new bag so that it fit just right over my stoma. Too big by the tiniest increment and I would spring a leak. Too small by the tiniest increment and it would hurt and slide around and spring a leak. We would remove my old ostomy bag and throw it in the trash, praying that we picked a time to switch bags when I wasn't spurting out much stool. There were times that we would have taken the ostomy bag off and right away stool would start coming out of my stoma. I would lay there and keep wiping it up, waiting sometimes 20 minutes to a half an hour until it slowed down enough for us to get the new bag on. Did I mention I hated that?

After the new bag was finally attached, I had to lay with a heating pad on it for about twenty minutes to help ensure the adhesive was doing it's magic. This was a step that we could have skipped, but our ostomy nurse told us that doing this helped the seal the most. I was willing to do whatever I could to avoid a leak.

And still leaks happened. But I don't want to talk about that right now. Those are some horrible, horrible memories. But what can you do?

I write about this now because I no longer have an ostomy. There were very few people that I could share these details with when I had my ostomy. I was too ashamed. I purposefully waited to start my blog until after I had my takedown surgery. But I don't want to be ashamed any more. If it happens that I have to have an ostomy again, then so be it. Jeremy keeps telling me, "At least we know now which bags work best and how to do it all." He's right. That's true.

And can I just take a moment here to recognize the patience and commitment of my husband? There has never been anything on his part but a desire to help me deal with all of this as best as he could, and for me not to feel alone. He hated seeing me sob when my bag started leaking. Seriously, he would get more stressed out about whether the seal was good than I would. He hated it that I was losing weight and so distraught psychologically over all of this. And that's what relationships are supposed to be about - helping each other in any way possible. That's the beauty of them. We all have to work through our issues. It's just so much easier when there is someone there with you, loving you and helping you along the way.