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Crohn’s Disease: Hacks for Life With a Colostomy Bag

Reviewed by Neha Pathak, MD on January 21, 2021

Sometimes people with Crohn's disease need surgery. One type of surgery is the creation of a colostomy or an ileostomy, to bring a part of the intestine to the abdomen wall. The procedure creates an opening at the abdomen, called a stoma, so waste can drain into a bag instead of through the anus.

As you recover, you’ll find there’s a lot to learn about life with a colostomy bag. We asked people to share their tips and tricks for day-to-day activities with an ostomy bag to help you feel more comfortable as you work, travel, and more.

Working Out With a Colostomy Bag

For about 3 months after your surgery, you'll want to avoid lifting heavy objects. Because the muscles around your stoma may be weaker, you could get a hernia. This happens when your intestine presses up against the abdomen or around the hole that leads to your bag.

You can get hernias when you train too. Justan Singh, who's had an ostomy bag for over 10 years and works out often, dealt with them often.

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"Looking back, I wish that I took more rest," he says. "Interestingly, no one ever told me this, but it's really important to wear a support band all the time, and even more important than that is to do (core) exercises."

After you heal, you should be able to continue the sports and exercises you enjoy.

Lauren Beach, who had both a temporary loop colostomy followed by a permanent ileostomy nearly 10 years ago, suggests fitted clothing, such as yoga pants, when you work out.

"I love anything that is high-waisted as it hides the bag, and that is so common to come by nowadays," she says.

Beach also tries to change and shower quickly after workouts to avoid a sweaty bag, which can cause it to peel off.

Danni Little, who has lived with her ileostomy bag for 3 years, says to bring extra bags if you're going to swim. They're often waterproof, too, and you can even use a stoma plug temporarily.

Contact sports are still a possibility, as well. You'll want to build your core strength and can wear stoma guards and belts for extra protection and support.

Traveling With a Colostomy Bag

It may take you a few weeks before you're well enough to travel. But once you're ready for a getaway, there are a few things to keep in mind. No matter how or where you're traveling, you may want to pack an emergency travel kit. You’ll want to include:

  • Toilet paper roll and change of clothes in case of leaks
  • Alcohol-free wipes
  • Sanitary disposal bags, disposable gloves, and antibacterial hand soap
  • Odor-canceling spray
  • Cream for sore skin

One of the most important things to remember, too, is restrooms. For road trips, it may be helpful to plot out bathroom stops along your route before you head out. You can also keep a travel toilet in the car.

Beach says accessible bathrooms are key for beach or lake trips, or any place where she's wearing a bathing suit since a full bag is more noticeable in tight clothes.

"It can be a bit nerve-wracking not having a place to go to empty your bag or change if need be after a swim," she says. "I've simply stopped going to beaches without public restrooms for this reason, and most of my friends know at this point that I need to be near one."

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If you're flying, pack some bags in your carry-on in case your checked luggage doesn't make it.

"Make sure you have all of your ostomy supplies pre-cut so you don’t have to deal with a lot of prep each time you have to change your bag," Little suggests.

On longer trips, Omma Ahmed, a London-based blogger who's had her colostomy bag for 8 years, also likes to take extra-large bags that are drainable. That way she doesn't have to change it often or worry about it filling up too much.

When you go through airport security, you can let the travel security officer know that you have a colostomy bag before you're checked. You can also show them a travel notification card, which you can find and print online.

"Always ask for a private area if you are stopped at an airport and they want to examine the bag," Ahmed adds.

Some other travel tips include:

  • Pack twice as much stoma supplies with you.
  • Change or empty your bag right before you travel.
  • Avoid fizzy drinks or spicy food to lessen the wind in your bag.

Clothing and Your Colostomy Bag

One daily concern you may have is how to keep your colostomy bag from being noticeable under your clothes.

"Some of my biggest challenges with the bag have been keeping it hidden," Little says. "I’ve noticed that wearing high-waisted pants and skirts whenever possible helps."

Ahmed says that if you do wear high-waisted pants, make sure the waistband doesn’t sit on your stoma bag since it can cause pressure and lead to a leak.

She also offers another suggestion: "Peplum tops and dresses give you shape but skim over the bag if you feel self-conscious."

Some people also like to wear support or compression clothing for the same reason. You can also empty the bag often to help it lie flat.

Sex When You Have a Colostomy Bag

Your bag shouldn't keep you from an enjoyable sex life. As long as it's securely in place, different sexual positions shouldn't affect it either.

"Genuinely your partner will not care about your bag, but to make you feel comfortable, change or empty your bag before you head to bed," Ahmed suggests.

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If you want a more discreet bag, you can find them in different styles and smaller sizes.

"A sex tip if you don’t want your bag flapping around is just to tuck the bag in the ostomy bag belt, and if you don’t want people to see your bag hanging down, just tuck the bottom of your bag in the bottom of your underwear," Little says.

Ahmed also suggests a belt to lessen the bag's movement and avoid leaks. If you're concerned about smells from the bag, she says you can add an oil to the bag to cut odors.

Getting Better Sleep With a Colostomy Bag

Bag leaks are common and can be a challenge overnight. While sometimes you can't avoid them, Beach has a few strategies she uses to have fewer leaks.

Empty your bag. She does this every night before bed. If you leave the bag partly or totally full, the bag could leak more easily since there's less room for it to fill up.

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Avoid food before bed. She usually has dinner early, about 5 hours before she sleeps. "By the time I go to bed, some of that food has already made its way through and won't cause my bag to overflow in the night," Beach adds.

Find your schedule. Try to figure out your body's schedule and how much your bag will fill overnight. "While a little disruptive to your sleeping schedule, when I first got my bag, I would set an alarm midway through the night to remind me to get up to empty my bag," Beach says. Once she figured out her body's rhythms, she no longer set alarms, but suggests you form the habit early.

Going Back to Work With a Colostomy Bag

Your needs will vary depending on your job, but there are a few things that can help you be more comfortable at work.

Work clothes. If you sit for long periods of time, consider loose clothing. If you're more active on the job, a stoma belt can help support you as you move, and a skin barrier can help stop leaks or skin irritation from sweat.

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Leaks were the biggest everyday challenge for Singh. "I found a few seals that provided me extra support and made my bags last longer, so my bag now lasts 3 to 4 days," he says.

Extra supplies. Because workplace restrooms are all different, Beach says she tries to bring as many supplies with her as she can, like wipes and towels, in case of any spillage. If she needs more space, she'll sometimes use a handicapped restroom.

Noise diluters. While everyone has gas, you may be self-conscious about the unpredictable sounds that come from your bag.

"I sometimes find myself holding my hand over my stoma if I can feel one coming," Beach says, "but oftentimes, it happens randomly and there is no way for me to know it is going to make a sound. This can be especially embarrassing during a conference meeting."

To avoid noises, you may want to skip fizzy drinks and limit high-fiber foods. Beach suggests tablets like Gas-X or Devrom that lessen gas and deodorize internal smells.

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"There are other products you can place into the bag, such as drops, to help with odor too," she adds. "This can help when having to share a bathroom."

Share your situation. While this is completely up to you, it can help make your manager or HR aware of your unique needs and accommodations.

"You never have to overshare or disclose any details you'd rather not, but I've found that [my manager] knowing has made my life so much easier for working-from-home privileges," Beach says. "Or when I'm out sick or hospitalized, these things come as less of a surprise."

She also urges people to research your company's insurance plans as well as long- and short-term leaves of absence benefits.

WebMD Feature

Sources

SOURCES:

Crohn's & Colitis UK: "Back to Work with an Ostomy," ""Find Solutions to Problems That Can Occur with an Ostomy," "Living with a Stoma," Sexual Relationships and IBD,” "Travel and IBD."

United Ostomy Associations of America: "Managing Humidity and Extending Pouch Wear Times with an Ostomy," "No Stress Air Travel with an Ostomy."

Justan Singh, Crohn's & Colitis Australia ambassador, Sydney, Australia.

Lauren Beach, patient, South Boston, MA.

Danni Little, patient, Detroit, MI.

Omma Ahmed, blogger, London, England.

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