What Living with a Colostomy Means

In my last post, I shared with you how I became an expert on my grandma’s colostomy. In this post, I’m going to share with you what I’ve learned about what it means to live with a colostomy. 

An ostomy is a procedure in which vital organs are surgically changed to reroute bodily waste. Ostomies can be temporary or permanent. There are different kinds of ostomies, including colostomies, which is what my grandma has. 

A colostomy is a surgical procedure in which the colon is rerouted. This normally happens because of an illness like cancer or disease like diverticulitis. 

My grandma had a colostomy operation in late 2013 due to a bout of diverticulitis, and it was reversed in early 2014. She did okay for about a year, and then she needed to have a colostomy operation again during a hospitalization, thanks again to diverticulitis.

I’m by no means a medical professional. To learn about ostomies, I suggest you check out https://www.ostomy.org/what-is-an-ostomy/

I do, however, know what it’s like to be a caregiver to someone living with a colostomy. If you’ve recently found out your loved one needs one, or you are new to colostomy care, I hope this post will give you a glimpse of how life changes when a colostomy happens. 

Here is what it means to live with a colostomy:

Living with a colostomy might mean you need thicker skin.

Your colon has been re-directed and now your body’s waste comes out of a “stoma” – the new opening of your colon – which empties into a device (often called a colostomy bag) worn on the abdomen. That’s right, your poop (often called output) goes straight into a plastic bag worn underneath your clothes. 

If you’re squeamish at the sight of blood or get freaked out by medical shows, you’ll want to brace yourself. It’s time to get brave. You will be in close contact with an internal organ. You will have to be careful. If you have a tendency to rush, it will really test your patience. 

Living with a colostomy means you will have to become an expert at a nursing task often carried out by skilled professionals. 

When you have the operation, your healthcare team should teach your loved one (and you) how to care for the new colostomy. You’ll learn how to change the bag and clean it out, receive guidance on proper nutrition post-surgery, and hopefully get some coaching on what a healthy stoma looks like. 

Over time, you’ll work out a rhythm of caring for your colostomy, and it will become part of your routine. Through trial and error, you’ll learn how your diet and activity impact your output. 

Living with a colostomy means redefining your relationship with food.

Food can become your worst enemy for a while after you get used to a colostomy. Once you have a colostomy (especially post surgery) you find out that certain foods are off limits. Certain foods are known to cause blockages. Some foods basically cause diarrhea. When you get used to a colostomy, you eventually become an expert on how foods affect you. 

You will likely have to make some changes to what you put into your body. 

It may affect your social habits slightly. It may mean declining the occasional dinner invitation or spending time educating people close to you about your new dietary needs. You might develop a habit of showing up fashionably late 😉

Read the Food Alchemy post coming later in the series to learn more about my experience supporting Gma with nutrition and her colostomy.

Living with a colostomy means accepting a new definition of being prepared for the worst.  

It means lots and lots of cleaning and plenty of loads of laundry. You’ll probably want to invest in a couple weeks worth of underwear and several more pairs of pants, IJS. 

If you weren’t already, when you learn about the risks that bacteria and germs bring with them, you might find yourself on a whole new level of clean freakiness.

You’ll definitely be adding some more items to your emergency kit, and you’ll want to make sure that you have a few days’ worth of ostomy care supplies in your hospital go bag (because they never friggin’ have the appliance you use ‍‍♀️)

Speaking of going to the hospital, you will probably rush to the ER more than you’d like and may have to stay a few times, as colostomy (and really any bowel) issues can get pretty serious pretty quickly. 

It sounds pretty serious, but the devastation you feel when you initially hear the words “surgery” and “colostomy” will eventually wear off. They may resurface from time to time when a hospital trip is looming due to a blockage or you have to rush off to a biohazard cleanup in the middle of the night. 

You will find yourself wondering at times how you ever became so concerned with the consistency of poop and how often your loved one has a bowel movement. 

Certainly, living with a colostomy or caring for someone who has one can be challenging at first. Over time, just like anything else, with plenty of experience under your belt, you will grow accustomed to caring for a colostomy. You’ll figure out what works and establish a new normal. Eventually you will learn to live with a colostomy.

Does your loved one have a colostomy or other healthcare need that you attend to?

I’d love to hear what you’ve learned. Drop your wisdom in the comments!!