Having a new ostomy can be a bit overwhelming at first. There is so much to learn, but over time you’ll find that life with an ostomy is so manageable and beautiful! The first couple months many people have some misconceptions. Here are the Top Ostomy Misconceptions I hear as the Ostomy Lifestyle Specialist while talking to new ostomates. But! These may also be helpful for those who have had their ostomy for years – either as reassurance or to send to new ostomate friends!
1. Everyone is going to be able to tell I have an ostomy.
There are so many products available and ways you can hide your ostomy under your clothes so no one has to know but you! Click HERE to see a video all about how to dress with an ostomy. You’ll be surprised how easy it is to conceal!
I remember the night almost five years ago I put on this dress (left). My girlfriends and I went out on the town because I was going in to surgery the next month. I remember telling them “I want to wear the tightest dress possible, because I won’t be able to wear tight clothes after getting my ostomy.” Well … I tried on the dress recently while cleaning out my closet (right)! My ostomy is on the right side of my abdomen (left side when you look at this picture). I can only say, “Boy was I wrong about having to change the way I dress!”
2. My ostomy is going to stop me from being active
While you’re recovering from surgery it’s important to take it easy, but after your surgeon approves you for more physical activity you can start building your strength and endurance back up! Recovery is a long process, but once you’re healthy you can do most everything you could before having a stoma! There are all sorts of products you can use to protect your stoma from getting injured or you from getting a hernia.
Here are some links to some of the most inspiring and active ostomates as well as my video about exercising with an ostomy.
Ostomy Outdoors – Heidi is an avid backpacker and hiker. She was one of the women who inspired me to backpack after ostomy surgery
Blake Beckford – Blake is a body builder and fitness enthusiast who shows that just because you have an ostomy on your abdomen doesn’t mean you can’t have an awesome six pack!
Rolf Benirschke – Rolf was the San Diego Chargers kicker, but during his second season he fell ill. He had ostomy surgery and then came back as an NFL kicker for the Chargers and is third most accurate placekicker in NFL history!
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3. Bad skin around the stoma is just a part of having an ostomy
It’s true that peristomal skin complications are common, but they are not the norm. With the correct pouching system and ostomy accessories, the skin around the stoma should look and feel like the rest of the skin on your abdomen.
If you need help finding the right system and accessories for you, contact your WOC Nurse (Wound Ostomy Continence) or ET Nurse (Enterostomal).
My peristomal skin looks and feel just like the skin on the rest of my abdomen, aside from being a little paler! The red right around my stoma is from my convex barrier, which goes away a few minutes after taking off my wafer.
If you do not have a WOCN or ET Nurse, HERE is a link to find a nurse near you!
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4. No one will be attracted to me after surgery; I have to hide my ostomy.
The way I have always thought about my ostomy is that it saved my life. If someone even relatively enjoys spending time with me and they know my ostomy is the reason I’m still around, they’ll be thankful for it! I find that if I explain my ostomy in a confident, matter-of-fact way, the people I am telling won’t have an issue with it! The ostomy does not change a single thing about you aside from the way you go to the bathroom! If someone is truly into you, the ostomy will seem like a non-issue! If it is an “issue” for them, I think the ostomy can be a “time-saver!” Would you want to spend the rest of your life with someone who is vain enough to allow a small, beige pouch on someone’s abdomen allow them to write the person off? I wouldn’t! It’s better to find out sooner rather than later down the road!
HERE is a video I did about how I like to tell people about my ostomy.
HERE is a blog about intimacy with an ostomy.
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5. My pouch will inflate in an airplane.
I don’t know how this rumor started, but I’ve been asked if the ostomy pouch inflates in an airplane dozens of times while talking to people who are new to having an ostomy. The answer is no: the cabin is pressurized, so there’s no pouch inflation and nothing to worry about! The one note about airplanes and ostomies I do have – airplane air is very dry. Remember to stay hydrated!
For more information about traveling with an ostomy CLICK HERE
For more information, see related ostomy support articles and ostomy resources here:
- UOAA Ostomy Support Groups
- What to Expect at an Ostomy Support Group
- Coping After Ostomy Surgery
- Dressing with an Ostomy Article
- Telling Someone You Have an Ostomy
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