Real talk about ostomies

I was driving around the internet at 130 in the morning as you do when I came across a petition on change.org. The petition is asking the CDC to stop airing an ad in which a smoker develops colon cancer and discusses wearing a colostomy bag. Here are some quotes from the salient portions:

“In this ad she refers to having to wear a colostomy bag for a year which is “smelly” and because she fears leaks she doesn’t leave her home. This may or may not deter people from smoking, but in the meantime, unnecessarily sheds negative light on people with ostomies.”

“The negative stigma that is spread by this ad is itself a health threat. Fear of being stigmatized, including the extreme negative body image that our society has placed on those with ostomies…”

“…it sends the wrong message to the general public, at a time when those of us who have permanent ostomies are trying to educate others about this condition.”

I have a lot of feelings about this.

The first is that yes, I agree that ostomies are stigmatized. I think this is less of a problem than it was years ago, but ostomies are still not very common and people are unfamiliar with them. It changes the way you look at your body and makes the process of waste elimination a very graphic part of your daily life. It is difficult for many people, and many people elect not to get ostomies because of that.

However, I completely disagree with this idea that ostomies are totally palatable, because that is simply not the case. I feel like this petition is saying that this woman is being dishonest in portraying the colostomy bag as being smelly or leaky. The fact is that they often are. And while I agree that ostomies shouldn’t be stigmatized as they are medically necessary for many of us, I don’t agree that we should gloss over the realities of living with ostomies in order to get there.

I have a colostomy. It was placed two years ago with the intention of being permanent. Due to some further complications, I am having my colostomy reversed, which may result in the later placement of a permanent ileostomy. The likelihood of my needing an ileostomy at some point is significant.

I use a two part pouching system. One part, called the wafer, is a ring that fits around the stoma and is adhesive, so it adheres directly to my skin. The second part is the colostomy bag, which has a ring that snaps into the ring on the wafer.

Colostomy bags are either disposable or reusable. With disposables, you throw the entire thing out and put on a new bag when you stool. I use reusable bags that can be emptied by unrolling the end of the bag, called the tail. The stool is then pushed out of the bag into the toilet while the bag is still snapped into the wafer and attached to your body. If your stool is really hard most of the time and doesn’t really come out of the bag well through the tail, you may end up removing the bag from the wafer and emptying it through the hole in the back, then reattaching the bag.

Ostomy suppliers make deodorant that you can put in the bag. It works okay. It doesn’t work great. If I am dressed, on an average day, you will not smell stool. If I am walking around naked, I might smell it. However, I find the deodorant is not very effective for gas. You cannot control gas when you have an ostomy in the same way that you cannot control stooling. So you can pass gas at any time and yes you can hear it and yes it smells. Another thing many people don’t realize is that the closer the end of your GI tract is to your stomach, the worse the stool smells. I can’t really think of an appropriate analogy, but suffice it to say that stool and gas smells much worse when you have an ostomy.

Disposables don’t tend to smell as much because there isn’t really enough time. Smell is more of an issue for people who use reusable bags. So why do people use them, right? Mostly insurance. Most insurances will pay for 20 reusable bags a month or 60 disposable bags. So either change the bag every day and a half or throw out the bag twice a day. What if you go to the bathroom more than twice a day? Most places won’t allow you to pay cash for more bags, so people who use disposables generally use larger bags to hold more stool, which is more visible and may smell if it is full.

Side note: You have not known fear until your insurance is refusing to approve your ostomy supplies and you won’t have anything to poop into in three days.

Ostomy pouching systems are pretty clever but they are not perfect, so they sometimes leak. One kind of leak is when stool doesn’t go into the bag completely when you stool and so some of it gets under the wafer and onto the skin. This is much worse for people with ileostomies where the stool is much more liquid, but it happens for colostomies, too. It happens at some point to everyone who has an ostomy. Stool on the skin can cause infections and also causes literal burns, which feel awesome and take forever to heal because you have to keep applying adhesive to the skin whether or not it is in bad shape. It’s a sucky situation.

The other kind of leak is when you poop so much that the force pushes the bag out of the seal the rings make and the stool literally leaks out. This mostly happens when you suddenly get diarrhea, like during anaphylaxis or a sudden onset bad mast cell reaction. This has happened to me a few times. It actually happened to me recently while I was on the train to work. I walked to a Starbucks and threw everything away and threw my tights away and cleaned myself up and went on with my day. But yes, if you have a colostomy, there is always a chance that you are going to poop on yourself on your way to work. And yes, that affects the decisions that I make regarding travel and transportation.

Pretending that people with ostomies don’t have these issues is both disingenuous and not helpful. I agree that all medically necessary things should be accepted by society but trying to convince people that ostomy bags don’t sometimes smell is not the way to do it. I hope someday insurance companies will stop being dumb about pouches and we will have better supply options or treatment options that don’t involve surgically created openings to the GI tract but you get what you get.

I live a very full life and having an ostomy has not prevented that. But it affects my life and it affects the lives of all ostomates. You shouldn’t be ashamed of your ostomy, and I am certainly not, but pretending that they don’t create gross or socially awkward situations is not progress. It is a different form of being closeted. So I do not support this petition. And I will not be signing it.

 

4 Responses

  1. Katie M April 11, 2015 / 3:36 am

    “….there is always a chance that you are going to poop on yourself on your way to work.”

    That’s probably the most I’ve smiled all day.

  2. Katie M April 11, 2015 / 3:36 am

    “….there is always a chance that you are going to poop on yourself on your way to work.”

    That’s probably the most I’ve smiled all day.

  3. Becky M April 11, 2015 / 7:37 pm

    This has been extremely helpful. Before reading this, I honestly had no clue as to how to mentally process what a colostomy was or what it meant to the person with it. This article made me think, and I’m better (and more realistic/curious about ostomies) for it. My question now is, what is an ileostomy and how might it affect you?

    • Lisa Klimas April 12, 2015 / 5:56 pm

      An ileostomy is a surgical opening into the small intestine. It stools much more frequently than a colostomy and the stool is usually very soft or liquid, so it is harder to keep clean and there are more skin integrity issues. It can also cause nutrition problems due to the fact that bypassing the colon affects absorption of nutrients and water.

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