Life With Your Ileostomy
The first few weeks of living with an ileostomy are a big adjustment. If you’ve just gotten yours, it’s normal to feel overwhelmed at first. It might seem awkward or uncomfortable. You likely have lots of questions. With time, though, you’ll get used to emptying the pouch where waste leaves your body and caring for the area around it.
It helps to know that most people can live a normal, healthy, and active life with their pouch, especially once it’s just part of their routine. There’s a lot you can do to make life with your ileostomy easier and more enjoyable.
Caring for Your Ileostomy
There’s no single right way to take care of an ileostomy. Try different things until you find a routine that works well for you. But there are some basic things you’ll need to make sure to do.
Protect your skin. The area around the opening in your belly, called the stoma, might feel a little sore. But if you take care of it, it should look just like the skin you have anywhere else. Try these tips:
- Use a pouch that’s the right size for your stoma. If the opening is too small or too large, it could irritate the area.
- Don’t change the skin barrier on your pouch system more than once a day unless there’s something wrong you need to fix.
- Clean the skin around your stoma gently with water and let it dry before you put a new bag on.
- Keep any hair around your stoma shaved or trimmed short. Avoid using shaving cream, soap, lotion, or other products since they may keep the barrier from sticking to your skin.
- Tell your doctor or nurse if you see any irritation. If you’re sensitive to any of the materials you’re using, they may be able to suggest other options.
Know how to care for your pouch. Your doctor or nurse will show you how to empty and change the pouch. It’s a good idea to do this on a regular schedule. Empty your pouch when it’s a third to half full to avoid leaks or other problems.
Some things to keep in mind:
- Some pouching systems need to be changed more often than others. You might need to change it every day or you might be able to wait for a week. But in general, change it before the seal that keeps it attached to your skin begins to loosen or leak.
- Keep in mind that your bowel is more active at certain times, such as after a meal. Change your pouch when it’s less active, such as first thing in the morning.
- You can take a bath or shower with your pouch on or you can take it off first. If you want to take it off, wash up at times when your bowel is less active.
- For the most part, you should be able to wear the same clothes you wore before. If you find certain waistbands uncomfortable, try some that are higher or looser.
- Try underwear that gives more support to your pouch. You can also use an adjustable belt or tape to keep the bag more secure.
Do I Need to Change My Diet?
Once you’ve recovered from surgery, you should be able to eat normally. It’s a good idea to be cautious at first. Make note of any foods that seem to affect your bowels and your ileostomy.
Try these tips:
- Chew your food well.
- Eat four or five smaller meals a day, instead of three larger ones.
- Drink plenty of water.
- Be careful with foods that your body doesn’t break down well, such as corn, coconut, nuts, or raw fruits and veggies. They could cause a blockage.
- Watch out for foods that give you gas, diarrhea, or constipation.
If you aren’t sure about a certain food, try it at home first.
Can I Exercise or Play Sports?
For the most part, yes. As long as your activity doesn’t involve lots of contact, it should be OK to try. Check with your doctor to find out when it’s safe to start exercising after surgery. Ask them if there are any precautions you should take.
The main thing to watch out for is that your stoma is protected. If you’re worried the activity might cause your pouch to leak, try a special belt or binder to keep it in place. Your doctor or nurse may have recommendations.
Can I Have Sex?
Once you’ve recovered from surgery, it’s OK to have sex. It may take time to get used to intimacy now. There are a few things that can help:
- If you feel self-conscious or less attractive with your ileostomy, take it slow.
- Be open with your partner about how you feel.
- To feel more relaxed, check your pouch before you have sex. Make sure the seal is tight, and empty and clean it if you need to.
- Consider covering your pouch with a special cover, lingerie, or a cummerbund.
- You may need to try some new positions to find what works for you now.
If you are dating, it’s up to you when to share with a partner that you have an ileostomy. They might need some time to adjust to this news. Be ready to answer questions.
People with an ileostomy can still get pregnant and have a baby. Your pouch shouldn’t change your chances of conceiving. You can have a normal delivery, too. It’s a good idea to talk to your doctor first.
Can I Travel?
Definitely. To make sure your trip goes smoothly:
- Take more supplies than you think you will need.
- If you are flying, keep your supplies with you. Luggage sometimes gets lost.
- In the car, keep your supplies in a cool place.
- If you travel to another country, take a list of doctors you can reach while you are away if needed.
- Carry medication to help if you get diarrhea.
- Carry a note from your doctor explaining your ileostomy supplies and any medicine to help with luggage inspection and customs.
When to Call the Doctor
Give yourself time to adjust to life with your ileostomy. For some people, it may be harder to get used to than it is for others. Remember to take care of your mental health as well as your ileostomy.
Support groups can help you find others who understand and can offer you advice. If you are struggling in caring for your ileostomy or with your mental health, ask your doctor or nurse if there are counselors or a mental health specialist you can talk to.
Once you heal from surgery, your ileostomy shouldn’t cause you any discomfort or pain. But call your doctor or nurse right away if you notice anything unusual or concerning, such as:
- Cramps that last for hours
- Nausea and vomiting that doesn’t stop
- Nothing in your pouch for up to 6 hours along with nausea or cramping
- Severe watery discharge
- Bad odors
- A cut or injury to your stoma
- Bad skin irritation or sores
- Bleeding from your stoma or blood in your pouch
- A change in your stoma size or color that doesn’t seem right
United Ostomy Associations of America: “Living with an Ostomy: FAQs,” “Emotional Concerns.”
American Cancer Society: “Caring for an Ileostomy.”
Mayo Clinic: “Ostomy: Adapting to life after colostomy, ileostomy or urostomy.”