Things I wish I knew before I got an ostomy

Lindsey KozeckePerspectives

Lindsey Kozecke hiking with her ostomy bag

My experience living with an ostomy

I was diagnosed with low-grade serous ovarian cancer in 2016. I’ve had both a colostomy and an ileostomy (with the same stoma). I was fortunate enough to keep the same stoma through my two resection surgeries. I’ve lived with an ostomy for 4 years now. If you need an ostomy as part of your ovarian cancer treatment – here are a few things you should know going in.

1. Ostomy placement and clothing

First, placement matters. I didn’t realize how it would affect my clothing choices. With a colostomy, output is not often and usually firmer, so I often had an empty bag. That meant tucking my bag into tight jeans or skirts wasn’t an issue and often people wouldn’t even know I had a colostomy. With an ileostomy, output is frequent and liquid, so the bag feels uncomfortable tucked into pants and skirts, forcing me to have it hanging outside of clothes. This led me to make different choices, such as dresses or skirts where I could have a shirt covering my hanging bag. Where your stoma is on your abdomen changes where your pants sit, so make sure they measure you appropriately so it doesn’t fall in a “fold.”

2. Ostomy Support Groups

Second, everyone is different, but you adjust. Support groups are so helpful in learning your new body part. Some people get sores often, or don’t heal well, they need more support from an ostomy nurse and shouldn’t rely solely on support groups. Others who only have occasional medical issues can use solutions crowd sourced on facebook groups. There are decades of experience that can really prove useful.

3. Strategies for common ostomy problems

Third, there are always answers to problems. For instance, if you have an ileostomy, dehydration and malabsorption can be a problem. There are drugs for addressing this issue. Medications such as Omeprazole and Questran slow down your bowels so that transit time isn’t so quick and helps reduce output. In extreme cases, supplemental IV fluids can be used to get you back on track. Drinking hydration drinks such as Gatorade zero can help maintain hydration.

Some answers are unexpected. If you worry about output during bag and wafer changes, eating a few marshmallows before you change your bag can slow output down temporarily, long enough to have a clean change. Constipation can be cured sometimes with simply drinking a coke. Skin irritation from leaks can be healed with Flonase and crusting (an ostomy term). Who would’ve thought to use Flonase?? The things you learn along the way!

4. Physical activities and intimacy with an ostomy bag

Finally, I know the thought of bathing and swimming and being active can be nerve wracking. But again, you adjust. I’ve swum in lakes, pools, hot tubs and taken long baths. I’ve gone zip lining, hot air ballooning, and camping with my ostomy. It takes a little bit of planning, and having some grace, but it is totally doable. Even being intimate is doable with an understanding partner. They make lacy wraps you can wear to hide your bag during intimate moments, and if you have an inactive ostomy, they have tiny bags you can use temporarily so it doesn’t get in the way.

Final Thoughts

Try to remember that your ostomy is likely there to extend your life, so don’t let it limit the way you live.

About Author

Lindsey is a mom to four young boys, a health policy researcher and attorney, and receiving end of life care for low-grade serous ovarian cancer. She hopes sharing her experiences can help other women going through similar circumstances.


The suggestions contained in this article are not to be used as a substitute for medical advice, diagnosis or treatment of any health condition or problem. Any questions regarding your own health should be addressed to your own physician or other healthcare provider.