Things You May Not Know About Ostomates

If this is the first thing you are reading about me, let me save you some time, I have Crohn’s Disease and I currently have a colostomy, or ostomy as I sometimes refer to it. Colostomy specifies what kind of ostomy, I don’t want to confuse anyone. The United Ostomy Association of America (UOAA) has put together some great information and resources about ostomies. So if the UOAA has all this info, then what am I writing about? These are just random things that you may not find on WebMD or Wikipedia. Things you learn by actually living with a colostomy.

I’ve had my current colostomy for about two and half years. I say “current” because a few years ago I had a temporary colostomy for about a year. Here are a few things you may not know about ostomates:

• Ostomies can be temporary. A surgeon can reverse it in what is commonly referred to as a “take-down surgery.”
• The opening that is placed above the skin is called a stoma. The stoma is part of your intestines, so I get to see my guts all the time. Feces exits through the stoma into a bag.
• We have no control over the stoma, I can not clinch and try to hold anything in, including farts.
• Yes, we fart. No, you won’t smell it because the bag is sealed. You may hear it depending on the volume and your proximity. Typically my stoma likes to “talk” when everyone is quiet.
• We are warned to avoid certain foods, things that may cause blockages and such. Popcorn, seeds, roughage, etc.
• Hydration is important, especially for those with ileostomies, because if you don’t have a colon, you are missing out on a lot of water absorption. It is very easy for ostomates to become dehydrated.
• Ostomies are not a recent development and go back to the late 1700s. In fact, the first ostomy collection system was basically a sponge pushed against the stoma to absorb any fecal matter. Gross. Thanks to doctors who are constantly trying to improve the lives of their patients, the sponge system didn’t last. There were leather pouches, glass bottles, and rubber bags and finally the supplies we have today.
• There are different pouch systems. Some are a one piece and others are two-piece, meaning there is a wafer that adheres to the skin around the stoma and a bag is attached to the wafer. It’s the patient’s preference,  both are available and work well.
• I prefer a two-piece system, and usually, change it every 3-4 days. I have sensitive skin and it can be irritated if I leave it on longer. Some people leave their appliances on for up to seven days.
• Hospitals tend to use clear bags so nurses and doctors can see your stoma and output. I don’t wear the clear bags unless I am in the hospital.

  

• You can shower with it on or off. A stoma can be exposed in the shower, soap and water will not harm it. In fact, you are encouraged to expose your stoma in the shower to get the skin nice and clean.
• It doesn’t hurt when I touch my stoma, there are no nerve endings. It takes some getting used to when cleaning, at first you proceed with caution.
• Swimming is allowed. I will change my bag once I am done swimming because the adhesive probably has weakened and I don’t want to encounter a leak later on in the day.
• I can sleep through the night without having to empty the bag, however, if I do wake up and notice that my bag has some output, I will get up to empty it so I’m free to roll around. It’s just more comfortable.
• We can wear whatever we want. I wear ostomy wraps, which help keep the bag in place so it doesn’t rub against my skin and irritate me. It’s basically a comfort thing. Maternity bands do the trick as well. You can read my posts about Ostomy Fashion.
• Ostomates can have sex. I typically keep my wrap on, it’s a comfort thing, but have gone without and had no issues. I do make sure to empty the bag before any intimate moments. When I have a chance, I would very much like to tackle writing a post that delves more into intimacy.
• People of all ages have ostomies, including infants. It’s not just for old people.
• You can’t smell it, the seal around the stoma keeps everything, including odor, in the pouch.
• There are no restrictions on travel. You will go through an extra pat-down at security checkpoints. You can read my travel tips here.
• Typically there isn’t a diet restriction, but it varies from person to person.
• Women can have healthy pregnancies with an ostomy. Stephanie from The Stolen Colon blogged about her journey as a pregnant ostomate. I haven’t experienced that (yet), I encourage you to read her blog if you haven’t already.
• Another great source of information is Eric of Veganostomy.ca. He publishes great content for ostomates, including product reviews.
• My ostomy is permanent. There are no plans for a take-down and I’m happy with that. I no longer worry about running to the bathroom and missing out on so much. It truly is a lifesaver.

*Illustrations provided by United Ostomy Association of America.