Having a colostomy is a big decision — not only because it’s a major surgery, but also 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, reassures colorectal surgeon Joseph Trunzo, MD. But it’s important to know that you can still be active, wear fashionable clothes and live a happy, full life with a stoma bag.
Some people only need stoma bags (also known as ileostomy, colostomy or ostomy bags) temporarily — usually for three to nine months while recovering from intestinal surgery. But if you have a condition like Crohn’s or ulcerative colitis, or are living with 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. Did you know that approximately 1 in every 500 people undergoes an ostomy surgery at some point in their lives? That’s a lot of people. So, why do ostomy bags seem so unusual?
“This topic doesn’t get a lot of attention because it’s very private and some people don’t want to talk about poop, stool or gas,” Dr. Trunzo notes. When people do talk about such subjects, it’s often in a joking or mocking fashion.
But that doesn’t mean you should feel ashamed of your body or your bag. You have a right to expect respect. And if somebody says something hurtful, ableist or crosses a boundary, you should feel free to correct them.
“Needing a stoma bag doesn’t make you less valuable,” Dr. Trunzo emphasizes. “You need and deserve to enjoy your life.”
To be clear: You are under no obligation to tell anybody about your stoma bag if you don’t want to and you can keep it hidden fairly easily in most situations.
It may be helpful to let somebody know at work or school to ensure you get any accommodations you need, like a place to store your supplies. And letting friends or family into the loop could strengthen your support system. Still, it’s your decision to make.
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. Trunzo explains. “It’s very important that you be in the right hands because it’s very draining to require additional procedures.”
Once your procedure is done, you’ll have to wrap your head around a lot of changes. Most will be for the better — nobody gets an ostomy bag for the fun of it, after all. And lots of people notice a change in their overall health within days of having surgery.
Of course, that doesn’t mean that some elements of life with an ostomy bag won’t bum you out — especially in the early days when you’re still trying to figure out how to properly care for your stoma. Here are a few physical and emotional changes you can expect.
Let’s start with the good news: Stoma bags can grant you personal freedoms you didn’t have before.
Emptying your bag can become a scheduled thing, which means far fewer emergencies and accidents than you probably experienced pre-ostomy. As long as you have your supplies on hand (just in case), you can start going out a few weeks after the surgery and do some of the things that you missed out on before.
“The bag gives you complete control of your life,” Dr. Trunzo says.
These days, bags and pouches are very discreet. And there are plenty of companies out there making ostomy-friendly apparel, including sexy lingerie. But that doesn’t mean the slight change in your appearance won’t take some getting used to.
As is the case with most major medical procedures, having an ostomy isn’t without its challenges and tradeoffs. The ostomy bag learning curve might be steeper than you’d like in the beginning. You may struggle with leakage or irritation at first. You may have to adjust your diet to prevent gas. Your medications will probably have to change to ensure they get absorbed properly. It sometimes takes a while to get comfortable with physical intimacy again.
Each one of these issues is deal-withable. And the limitations and inconveniences that come with an ostomy surgery are often either temporary or minor enough that the health benefit of the stoma outweighs them.
Exercise is a good example of a place where some slight adjustments might be necessary to take full advantage of the freedom that comes with using a bag.
Full-contact sports with high risks of injury, like wrestling, rugby or American football, can injure your stoma. Unless your ostomy is reversed, you’ll likely be stuck on the bleachers watching those sports. But once you’ve fully healed from your procedure, you’ll be able to do physical activities that are low- or no-contact, like weightlifting, cycling and even swimming. You read that right: You can swim with an ostomy bag.
Depending on the activities you choose to do, you might need to wear a special belt, just to ensure the bag stays in place. But the belts are easy to find and use. Painful as it may be to put your roller derby days behind you, it’s a compromise worth making for the chance to overcome the pain of inflammatory bowel disease or survive colorectal cancer.
While adjusting to life with a stoma bag is tough on anyone, the need for one can be harder on young people. That’s because they’re more likely to encounter bullying, they have the added pressure of growing up to contend with and they’re more likely to participate in activities that could make the bag visible.
“There is a different reality for someone who’s going to live with a bag for three or five years vs. 60 or 80 years,” Dr. Trunzo recognizes. “The impact on the pediatric population is significant. Suddenly playing sports or going to the beach can be difficult to handle. Some people are ignorant — they see an appliance and not a person.”
If you’re the parent of a child or young adult with an ostomy bag, it’s important to make sure they’re getting proper mental health support, especially during already stressful periods like puberty.
Getting a bag is a life-changing event, but it doesn’t have to be a bad change. For many people, ostomy surgeries mean more freedom and more fun, not less. But that doesn’t change the fact that you’re undergoing a big transition. And even positive changes can be taxing on your mental health.
For that reason, Dr. Trunzo recommends reaching out for help. There are lots of support groups — some in-person, some online — for people with ostomy bags. If you live in the U.S., The United Ostomy Associations of America (UOAA) has a support group finder to get you started.
If support groups aren’t your thing (or even if they are), it’s important to know that there are also mental health specialists out there who focus specifically on processing medical trauma. It doesn’t happen to everybody, but some people experience post-traumatic stress disorder (PTSD) following a major medical event. Mental health support can reduce the risk or lessen the impact of PTSD.
It’d be a lie to say that an ostomy is an easy procedure or that adapting to life with a stoma bag isn’t a big deal. It is. But if you have good people around you, a solid support network,\ and a team of healthcare providers in your corner, you won’t just be OK. You’ll be better than before.