6 Tips for Living With an Ileostomy

When you get an ileostomy, it's a big adjustment. The first few weeks are the hardest, as you get used to emptying the pouch where waste now leaves your body.

“But you'll soon be able to enjoy your life as if you didn't have an ileostomy,” says Jennifer Holder-Murray, MD, a colorectal surgeon and assistant professor at the University of Pittsburgh in Pennsylvania.

Caring for your ileostomy will become routine. “Once you've recovered from the surgery, you'll be able to do nearly any activity that you want,” she says.

Your doctor will show you exactly how to use your ileostomy. These tips may also help:

1. Keep It Clean

It's safe to bathe or shower when you have an ileostomy. It's important to keep clean the area around the stoma, the part of your small intestine where waste leaves your body and enters the pouch.

It's best to use only water. If you use soap, be sure to rinse your skin completely, because soap can keep the skin barrier, the part of the pouch that sticks to your skin, from sticking properly.

2. Reach for a Razor

If you have a lot of hair around your stoma, you may find it hard to get the skin barrier to stick to your skin. Removing the skin barrier may be uncomfortable if you have a lot of hair there, too.

It helps to shave the hair around your stoma. It's best to use stoma powder, a special shaving product for people who have a stoma, because soap and shaving creams may keep the skin barrier from sticking to your skin. After shaving, rinse and dry the area before you put on the pouch.

3. Outsmart Gas

After getting an ileostomy, gas tops many patients' list of worries, Holder-Murray says. Gas may be worst right after surgery and get better over time as swelling in your abdomen goes down.

“Most pouches contain a filter so gas can empty and keep your pouch relatively flat,” she says.

To better control gas, you can also do these things:

  • Don't eat or drink too many gas-causing foods and drinks such as eggs, cabbage, broccoli, onions, beans, milk, bubbly drinks, and booze.
  • Don't skip meals. Doing so can aggravate your small intestine and cause even more gas.
  • Eat several small meals throughout the day.

 

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4. Stay Active

Your ileostomy doesn't have to slow you down. If you're a runner, keep running. If you love spin classes, keep spinning. If you enjoy skiing, walking, lifting, dancing, hiking, rowing, aerobics ... you get the idea. It's also fine to pick up new hobbies.

“The only activities that you may need to limit are contact sports,” Holder-Murray says. A really hard blow to your belly could injure your stoma or harm your pouch. You may not need to quit completely. There are special devices you may be able to wear that could help prevent those problems. Ask your doctor.

You can also swim. You may feel more comfortable if you eat lightly and empty your pouch before hitting the pool.

“Some people choose to cover up their pouch with swimwear or using a belt that can be worn on top of the pouch to make it even more discreet,” Holder-Murray says. “And some people choose not to hide it and wear it loud and proud.”

5. Keep Up Intimacy

You can still have sex when you have an ileostomy. Like most things in a relationship, a positive attitude and communication are key. They'll help you get through any awkwardness while you both adjust to your new pouch. Assure your partner that she won't hurt your stoma or damage your pouch when you're together.

It's also wise to have realistic expectations when it comes to sex. After surgery, there can be pain, and men may have trouble getting or keeping an erection. These issues usually improve with time. Talk with your doctor about any questions or concerns.

6. Hit the Road

Got plans? Go! When you travel:

Take twice as many supplies as you think you'll need in case you are delayed.

Always wear your seat belt. It won't harm your stoma when fitted comfortably.

When you fly, carry an extra pouching system and other supplies in your carry-on bag. You'll have them with you in case your checked bags get lost or misplaced.

If you go to countries where traveler's diarrhea may be an issue, ask your doctor if you need a prescription to control diarrhea and fill it before you leave. You'll have it with you just in case you need it. Also, take precautions to avoid the problem: Drink bottled water and use it to brush your teeth; don't use ice; and don't eat fruits with the peel or raw vegetables.

WebMD Feature Reviewed by Minesh Khatri, MD on October 14, 2018

Sources

SOURCES:

Jennifer Holder-Murray, MD, assistant professor, division of colon & rectal surgery, University of Pittsburgh.

American Cancer Society: “Ileostomy: A Guide.”

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