Having a colostomy is a big decision – not just because it’s a major surgery but because it will bring some changes to your life, including having a stoma bag after surgery.
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For many people, having a bag or pouch attached to their body is a huge emotional adjustment. It might feel odd or even scary at first. Those are completely normal feelings, says colorectal surgeon Amy Lightner, MD.
But know that you can be active, wear fashionable clothes and live a happy, full life with a stoma bag.
An awkward subject, but it’s no joke
Some people only need stoma (ileostomy or colostomy) bags temporarily – usually for three to nine months while recovering from intestinal surgery. However, if you have a condition like Crohn’s or ulcerative colitis, or the sometimes imperfect surgical aftermath of colorectal cancer, that may make stoma bags a permanent part of your life.
If you feel reluctant to talk with your family or friends about your bag, you’re not alone. “This topic doesn’t get a lot of attention because it’s very private and people do not want to talk about poop, stool or gas,” Dr. Lightner says. When people do talk about such subjects, it’s often in a joking or mocking fashion. But there’s no reason to feel ashamed.
“Having a stoma bag is a life-changing event, and no one who requires one should be valued less than anyone else,” Dr. Lightner says. “You need and deserve to enjoy your life.”
Long-term conditions can be especially tough for young patients
While the impact is tough on anyone, the need for a stoma bag can be much more psychologically tough for younger people, given the number of years they still have ahead of them and the greater likelihood that they’ll participate in activities that could make the bag visible, Dr. Lightner says.
“There is a different reality for someone who’s going to live with a bag three or five years, vs. 60 or 80 years. This brings a significant impact, in my opinion, to the pediatric population. Suddenly playing sports or going to the beach can be difficult to handle. People first see an appliance and not a person.”
Bags offer much more personal freedom
Anyone considering a colostomy should see an experienced, board-certified colorectal surgeon to have the surgery you need and be fitted for a bag.
“You need the proper care from a specialist to do the surgery the right way so they can get a better quality of life,” Dr. Lightner. “It’s very important that you be in the right hands. Most people become devastated if things are not done right, and it’s very draining to require additional procedures.”
The good news is that bags can offer considerably more personal freedom. For example, if you have inflammatory bowel disease, you know how often you need to visit the bathroom when your condition flares up.
“The bag gives you complete control of your life,” Dr. Lightner. “The freedom and independence are there.”
These days, bags and pouches are also very discreet. But it might take some getting used to.
“We also need to educate society not to be cruel to these patients,” Dr. Lightner. “You need to know that you’re not alone in this. I tell everyone that if anybody is going to like you less because you have a bag, that’s not the right person for you.”