We at JCLS have a history of matching our posts to current events, holidays, or months that have specific significance — and this is another one of those posts.
But I wanted to talk about a month that I don’t think many of you have heard about: Ostomy Awareness Month.
I didn’t know that Ostomy Awareness Month was even a thing — until I got an ostomy.
An ostomy is an artificial opening in an organ of the body (often a stoma, but not always) created during an operation. Some popular ones are:
Colostomy: In which a piece of the colon is diverted to allow waste to bypass a damaged part of the colon.
Ileostomy: This is a stoma constructed by bringing some of the small intestine (specifically the Ileum) to the outside of the body, bypassing the entire large intestine and everything after it. This is what I have.
Urostomy: An opening made to bypass the bladder.
Gastrostomy: A tube inserted through the belly that brings nutrition directly to the stomach.
There are, of course, many other types of ostomy configurations. And although most people would say, “I don’t know anyone with an ostomy,” it’s not that rare. You can check out some stats with this infographic. Also — I give you all permission to now be able to say you know someone with an ostomy if you’re reading this.
Just like there are many different types of ostomies, there are many reasons someone might have one: cancer, Colitis, Crohn’s Disease, injury, Hirschsprung’s Disease, birth defects, Inflammatory Bowel Disease, incontinence, and many other medical reasons.
But the whole reason for this post is to inform and encourage us to break down some stigmas, spread some awareness, and share some resources.
October 2nd was World Ostomy Day this year. While the Rogue Valley didn’t have any special events, some cities are starting to have 5k runs and small festivals to spread awareness. There were also tons of online live events and social media posts of people sharing their stories alongside the hashtag #OstomiesAreLifesavers. Myself Included.
This may not seem like anything radical — we see walks and charities and stickers, etc. for cancers, mental illness, and many other things — but we don’t see it a lot for ostomy awareness, and this is where the stigma comes in.
Because I can’t speak for all people with a stoma or an ostomy, I will talk about my specific experience. However, as a society, there are just some things we have agreed are taboo or should be kept more private — even when it might be detrimental to one’s physical health.
Poop is one of those things.
But for those of us with GI (Gastro Intestinal) ostomies, it’s an all-consuming topic. But we’ve considered it to be a “gross” topic. So as much as my loved ones probably didn’t want to ask or know about what was happening in the bathroom — I didn’t want to talk about it. So frequently (and it’s true in my case), issues continue without solutions. We manage symptoms… until we can’t anymore.
Because of the private nature of this issue, some of us experiencing these things feel embarrassment and shame around how our bodies function (or don’t function). Unfortunately, these feelings can lead to mental health issues like depression.
And I want to say here that I’m not advocating for families to start discussing bathroom habits at the dinner table. But I’d like us to avoid calling those things “gross.” Instead, I want us to normalize being able to tell someone, “hey, I don’t think what I’m experiencing is normal. I’d like to have some support in talking to my doctor about it.” Because, yes, it’s even tough to talk to a medical professional about, too.
I want us to also normalize being able to grieve our old bodies — even if they were sick. Having an ostomy is a complete lifestyle change. It’s really hard sometimes, so even though having one might be the better decision — it might make us feel better or function better in many ways — there are some losses that can come with them, too. I’ve had my ostomy for 13 years, and I sometimes miss my pre-ostomy body.
We don’t see a ton of awareness towards ostomies because it requires having those conversations. It requires talking about fluids, “bathroom business,” and things we just don’t chat about in casual conversation.
We don’t hear news stories of celebrities coming out with their stories about living with an ostomy; we don’t have books that feature characters having to make the tough decision to live with an ostomy so they can get relief from their IBD; we don’t see potty training books about how to potty train your toddler who doesn’t go to the bathroom in a traditional way, we don’t see fashion list articles like “The Top 10 Cutest Prom Dresses that Allow Easy Access to Your Ostomy Bag!”
And in the case of fiction, I wouldn’t want a character to fall into the trope where their illness or disability is their entire character arc. Still, as both an ostomate and horror lover, I’d read a story about a zombie apocalypse where a character has to fight off zombies and figure out how to get ostomy supplies when the hospitals are all abandoned. Maybe I’ll write it myself.
I want to end this post on a positive note, though, because even though there aren’t any zombie apocalypse/ostomy stories, there are some really great resources in the world. We even have some here at the library.
I encourage you to check them out — even if you don’t live with an ostomy or think you know anyone who does (except me).
Ostomy Resources | Main library (jcls.org)
Ostomy Awareness Day l United Ostomy Associations of America
Ostomy Guide – News, Resources, and Topics for Colostomy, Illeostomy, Urostomy and more