I, like many, have been guilty of believing some of these ostomy misconceptions. From my own experience, let me set the record straight as best I can:
- Myth: Only frail, old and sick people have ostomies.
- Truth: People of all ages have ostomies, including infants and children. I got my first colostomy when I was 24, it was reversed a year later and I got my second colostomy when I was 28. I will have it for the rest of my life. I don’t consider my self a frail and weak person. It’s only made me stronger.
- Myth: People with ostomies smell
- Truth: I smell like Chanel Chance, my favorite perfume. The ostomy wafers and bags are designed in such a way that you will not smell anything. The wafer is sealed around the stoma. You might be able to smell something if you have a leak, but trust me, we ostomates take care of that situation ASAP.
- Myth: You can’t play sports if you have an ostomy.
- Truth: Ostomates are advised to avoid contact sports, but there are devices you wear to protect your stoma that will allow you to play. I’ve run and played in an adult kickball league. I’m not the most athletic person, but I know plenty of ostomates who live a pretty fit and active life.
- Myth: You can’t swim with an ostomy.
- Truth: You can swim, dive, cannonball and just lay back on a float. Ostomy supplies are designed to stay on in the water (so you can also shower with it on). After I swim I typically put a new bag on just in case, although sometimes I’ve gone without changing the bag and it stayed on for another day or two.
- Myth: People with ostomies don’t have sex.
- Truth: Yes we do. I wear wraps over my ostomy for my own comfort on a daily basis. Most times I keep it on during intimate moments, it helps keep the bag in place. Sometimes I have gone without it and had no issues. It’s a personal preference. Just know, it’s never been a reason not to have sex. There are some wraps that are designed as intimate ware. I have one, it has black lace, pretty. However, the lace always bothered me, so I just stick to the normal every day one. Check out this video by the Front Butt Youtuber. Check out her videos, she has a lot of great stuff online about life with an ostomy.
- Myth: Women with ostomies can’t have babies.
- Truth: Many women have gone on to have healthy babies with their ostomies. If the entire colon, including the rectum, has been removed it may be difficult to conceive at first. Anatomically speaking, the rectum is right behind the vagina/cervix and if the rectum is removed it does cause a shift. However, it is important for women with ostomies to have a discussion with their doctors if they plan on getting pregnant. There are certain medications that are not safe for a fetus. I’ll cross that bridge when I get there.
- Myth: An Ostomy Cures IBD
- Truth: An ostomy is not a cure. For patients with Ulcerative Colitis (Your colon is the only affected area of the GI tract) sometimes the entire colon is removed as a last resort. This does not cure the patient, there is still no cure. Having an ostomy can help with many issues, I can still have flare-ups, be hospitalized and need surgery.
- Myth: People with ostomies can’t travel.
- Truth: We travel. You can fly, cruise or drive anywhere. Read my post about tips for travel with IBD for more information.
If you have any questions about life with an ostomy please send me an email.