Ileostomy: Care at home

What is an ileostomy?

An ileostomy is a surgical opening (stoma) into the small intestine through the abdomen. It allows stool to bypass the colon. It may be temporary or permanent. Because of injury or disease, the colon may be surgically removed, along with the rectum and anus.

Stoma site appearance

• The opening should be red and moist. However, sometimes when your child is crying, you may see the stoma change color. The color should return back to red or normal color for your child, when crying stops.
• The site may bleed easily, especially if hit or rubbed. Bleeding should be minor.
• The stoma should stick out above skin level or may be slightly below skin level.
• Stomas are often swollen after surgery. The stoma may take 6 weeks or more to shrink to its permanent size.
• The skin around the stoma should be free of rashes and broken down areas. Use products that fit well to minimize leakage. Empty bags frequently. Each stoma is unique.
• The stoma should not be painful. There are no nerve endings in the stoma.

Output expectations

Output will range from liquid to mushy with gas. Drainage is usually not odorous. Drainage will change color in response to certain foods eaten.

Foods that increase gas/odor

Asparagus, broccoli, brussel sprouts, cabbage, cauliflower, eggs, fish, garlic,onions and some spices all may increase the odor of the stool. Pouches are made with an odor-barrier film, so odor is contained within the pouch.

Gas in your pouch varies. If your child was gassy prior to surgery, this will continue. If you are concerned, use a pouch with a filter. This lets gas escape, but not odor. It also prevents gas buildup in the pouch, so it does not inflate like a balloon. Foods that may increase gas include beans, carbonated beverages, broccoli, brussel sprouts, cabbage, eggs, fish, garlic, onions, and some spices.

Foods that thicken stool

You can still get diarrhea with an ileostomy. To thicken stools, try:

• Applesauce
• Bananas
• Cheese
• Creamy peanut butter (not chunky)
• Noodles (any type)
• Pretzels
• White rice
• White toast
• Yogurt

If you suddenly have a blockage or only have watery fluid coming out of your Ileostomy and you have abdominal pain, you may have a food blockage.

Blockage occurs when high fiber foods have difficulty passing through the intestine and exiting the stoma. Sit in a warm bath to see
if the blockage will come out. Foods that can cause this include celery, Chinese vegetables, cocoanut, corn, nuts, dried fruit, mushrooms, marshmallows and popcorn.

Emptying the pouch

• The pouch will need to be emptied 6 or more times per day.
• Empty the pouch when it is 1/3-1/2 full of gas or stool. If it gets too full, it will leak or not last as long.
• Empty before naptime, bedtime, and car trips.

When should I change the pouch?

The wear time of a pouch typically ranges from 1-2 days for an infant and up to 3 days for child, depending on output, activity, and other factors.

Change the pouch when:

• The pouch is loose or it starts to leak
• The leakage will damage skin.
• Your child tells you his or her skin burns or itches.
• Your child is fussy for no apparent reason.

For detailed steps on changing the pouch, refer to the education handout "Pouch change".

Skin care

To clean the skin around the stoma, just use water and a soft paper towel. Do not use baby wipes, oils, powders, ointments, or lotions on the skin around the stoma, unless directed to do so.

Activity guidelines

Bathing: Bathing can happen with the pouch on or off. Water will not go into the stoma and does not harm it. The stoma may produce output while bathing. Avoid oily soaps and lotions around the stoma. Dry the skin around the stoma after bathing and check the seal for integrity.

Swimming: Use the pouch while swimming. An ostomy belt or waterproof tape around edge of skin barrier can assist security of system. Remove tape as soon as done as this can irritate skin.

Sleeping: Empty before naps and before bedtime. Kids can sleep on their abdomen; this will not hurt the stoma. Infants should sleep on their backs for safety.

Travel: Pack all supplies as carry-on. Avoid placing the seat belt over the stoma. Carry wet paper towels for clean up, not wipes.

Clothing

Avoid clothing that has waistbands that might rub against the stoma or that are so snug they prevent the pouch from filling. For small kids, onesies work well.

Who should I call for help?

Call your clinic if:

• The area around the stoma becomes red, broken down, open, and moist. This can interfere with a good pouch seal.
• You are changing the bag more than once/day or more often consistently, you increase the chance of skin breakdown.
• The stoma sticks out further than it had.
• The stoma sinks below skin level.
• Stoma output increases and you note signs of dehydration. Call your health care provider immediately.
• Bleeding: The stoma may bleed, and this is normal. If the bleeding does not stop, contact your health care provider immediately.
• You see bloody stool output.
• Nausea, vomiting.
• You have a blockage.

Special tips

• Change the pouch when the stoma is less active. Recommended times for change are first thing in the morning or at least two hours after eating.
• Pick a time when your child is calm and quiet. Have supplies ready to use such as pre-cutting the pouch opening, etc.
• Until you can do it yourself, plan on having extra hands available for pouch changes.

Questions?

This is not specific to your child, but provides general information. If you have any questions, please call your doctor.

Ostomate resources: Pull-thru network www.PullthruNetwork.org

Reviewed by WOCN 8/2015

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