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Ileostomy Care

Important information about an ileostomy:

  • An ileostomy or stoma is a surgically created opening of the small bowel through the abdomen. An ileostomy is needed when the large intestine (colon) must be bypassed or removed. This may be temporary or permanent depending on the reason for ileostomy formation.

  • The colon absorbs water and stores stool. Ileostomy drainage is constant and watery or semi formed. Your child will need to wear a pouch or appliance at all times. When a child has an ileostomy, skin care is very important. Since the stool draining from the ileostomy will be liquid or semi-formed and contains enzymes that can irritate the skin.

  • As soon as possible, involve your child in the care of the ileostomy. Children as young as 3 may offer help by handing you supplies or even doing some of the care.

  • Everyone’s ostomy is managed differently. While you and your child are in the hospital, we will teach you to meet the specific needs of your child.

What will the ileostomy look like?

  • Small intestine will stick out from the lower abdomen (belly) usually an inch or less. Occasionally, they are flatter or can stick out more than an inch.

  • Round or oval and it may vary in size.

  • Red and moist (like the inside of your mouth).

  • Has no feeling because there are no sensory nerve endings in this part of the intestinal tissue.

  • Slightly swollen for about the first 6 weeks after surgery and then will shrink.

Instructions for caring for your child's ileostomy:

Gather the following supplies:

  • Appropriate size pouch and wafer, this may be a one-piece or two-piece appliance

  • Stoma measuring guide (can be found in the box of ostomy supplies)

  • Mild soap and water

  • Washcloth or small towel

  • Paper towel or disposable towel

  • Scissors (curved scissors work best to cut circles and prevent puncturing the pouch)

  • Permanent marker

  • Optional supplies:

  • Stoma Powder

  • Stoma Paste

  • Barrier Ring

  • No-Sting Barrier Film®

  • Adhesive Remover

  • Other accessories needed such as a belt, deodorant drops, pouch covers

Steps for changing your child’s pouch and appliance: 

  • In the shower or using a wet washcloth (or adhesive remover), remove old pouch by lifting at the edges and holding the skin down. 

  • Cleanse skin with a gentle soap and warm water. A tub bath would be soothing to the skin and will not harm the stoma. Choose a soap or cleanser that is residue-free with no added moisturizers or oils. Soap residue can interfere with how well the appliance adheres to skin. Rinse and dry well.

  • You can apply a small gauze pad with KY jelly (optional) over the stoma while cleansing. This may keep stool from draining onto the skin.

  • Look closely at the stoma and surrounding skin. Watch for color changes, change in appearance (bulging or sunken), and condition of the surrounding skin.

  • Use stoma measuring guide to determine the size of the stoma and trace the pattern of stoma onto paper backing of appliance with marker.

  • Cut out the pattern with curved scissors and smooth the edges with your fingers.

  • Opening should be close to but not touching the stoma. This is usually about 1/16 of an inch (1.5mm) larger than stoma itself. 

  • If the skin surrounding the stoma has broken down or has moist/irritated open areas, apply a light dusting of stoma powder to the skin. This will dry the skin and allow the wafer to stick better.

  • If your child has a stoma that is at the same level as the skin, below skin level, or has uneven surrounding skin, apply a thin layer of stoma paste or a barrier ring around the edges of the stoma or in skin grooves. 

  • For above skin level stoma, you may choose to use stoma paste or barrier ring around the edges to improve the seal and protect the skin. 

  • Remove the paper backing of wafer and save it as a template for the next pouch change. Center wafer over stoma. Gently apply the wafer, smoothing out the area immediately surrounding the stoma and then the outer edges. If using a two-piece appliance, apply the pouch to the wafer making sure it is attached securely. Fold up the bottom of the pouch and secure with a roll and lock closure or clamp.

  • Place your hand over the pouch and on the barrier, next to the stoma for 30 to 60 seconds. The heat will help seal the barrier to the skin.

  • Empty the pouch when 1/3 to 1/2 full of stool or gas. A pouch full of stool and/or gas will cause the pouch to leak or come off sooner.

  • Change the appliance when leaking or about every 3 days. This will depend on your child’s needs. It may be changed more or less frequently as discussed with your healthcare provider.

Troubleshooting tips for ileostomy care:

  • The stoma will get smaller during the 6 weeks after surgery. Be sure to measure with each appliance change and adjust your pattern as needed.

  • If the skin around the stoma has broken down, use the “crusting method”:

  • Apply stoma powder to open areas and lightly wipe off any excess powder.

  •  Apply a layer of No-Sting Barrier Film on top of powder. 

  • Then apply the appliance as described above.

  • If a large amount of skin has broken down or if leakage continues, please call the Wound Ostomy Outpatient Clinic for assistance.

  • A red pinpoint rash may develop around the stoma. If you see this type of rash, call your surgeon’s office or Wound Ostomy Outpatient Clinic. This is likely a yeast rash and will require treatment with Nystatin powder, which is a prescription.

  • A stoma can bleed when wiped or touched without any pain. Apply gentle pressure to stop the bleeding.

Dietary Information

Hydration: A lot of water can be lost from the ileostomy. Give your child enough food and drinks to replace what is lost through the ileostomy. Your child should be urinating or needing diaper changes regularly. 

Diarrhea: Your child can still experience diarrhea with an ileostomy. Assess for changes in drainage such as mostly fluid and an increase in the amount of drainage. Diarrhea can cause dehydration. Increase their fluid intake or contact their healthcare provider if persistent. 

Food Blockage: Teach your child to chew food well. A large piece of undigested food can block the intestine. Cut food in small pieces. Infants and small children may produce stools the same color as the food they eat. This is normal.

Gas and odor: This can be caused by certain foods (see list below). Consider using a pouch with a filter to let gas out but not odor. Empty pouch regularly to avoid over inflating. Deodorant drops can be placed inside the pouch to help eliminate odor when emptying pouch.

Foods that may thicken stool: Applesauce, bananas, cheese, creamy peanut butter, marshmallows, cooked noodles, pretzels, white rice, white toast, yogurt.

Foods that may contribute to blockage: High fiber foods such as raw vegetables, coconut, corn, nuts, dried fruit, apple peel, and popcorn.

Foods that may increase odor: Asparagus, broccoli, brussels sprouts, cabbage, cauliflower, eggs, fish, garlic, onions.

Foods that may increase gas: Beans, broccoli, brussels sprouts, cabbage, carbonated beverages, cucumber, eggs, fish, garlic, onions.

Instructions for general care at home: 

Activity: Your child may do normal activities. Your child may swim or lie on their abdomen without harming the stoma.

Clothing: Your child does not need special clothes. Infants and small children may need one-piece outfits such as overalls to keep them from pulling their appliance off.

Bathing: Your child may bathe or shower with the appliance on or off.

Travel: Always take enough supplies and extra clothing to last the entire trip. Carry at least half of your supplies with you in case your luggage gets lost.

School: To help your child feel more comfortable at school, it is helpful to inform the school principal, school nurse and a few teachers of your child’s ostomy. Your child should not be treated any differently than any other child. They may have a few special needs, such as unlimited use of the water fountain and a private bathroom. Give your school nurse ostomy supplies and detailed instructions for changing the appliance. Keep a complete change of clothing at school.

Involving your child in ostomy care: We encourage children to help with their ostomy care. Even toddlers can help by handing you supplies as you need them. This is important in building independence and self-esteem.

Please call the surgeon's office at 215-590-2730:

  • If the stoma looks blue, purple, or black. A “beefy red” stoma is normal.

  • If there is a lot of blood mixed in with the stool in the pouch.

  • If the stoma pokes out a lot or sinks under the skin level.

  • If there is a larger than usual amount of liquid stool output from the stoma. If you are emptying the pouch twice as often as usual.

  • If your child has not passed stool through the stoma and has crampy belly pain and/or vomiting.

Please call the Wound, Ostomy Outpatient Clinic at 215-590-5905:

  • If there is persistent breakdown of the skin surrounding the stoma that is not improving with the crusting method.

  • If you have concerns about the current appliance. If you feel that your child may have outgrown the appliance and may require changing to a different appliance.

Resources:

The United Ostomy Associations of America (UOAA): Chapters of this organization exist throughout the United States to provide help to people with ostomies. Some of these chapters have youth groups. The UOAA also provides literature addressing special problems of those with ostomies. For information: www.ostomy.org

Hollister®: Online educational tools and information. Hollister® Secure Start Services has free personalized support. https://www.hollister.com/en/consumerservices

Coloplast®: Online educational tools and information. Coloplast® Care program with free personalized support. https://www.coloplastcare.com/en-US/ostomy/

Convatec®: Online educational tools and information. Enroll in me+™ program with free personalized support. https://www.convatec.com/ostomy/

An Advanced Practice Nurse (APN)/Certified Wound, Ostomy and Continence Nurse (CWOCN)/Family Learning Center RN will help with ostomy teaching and finding the right stoma care or pouching method for you and your child.

Homecare nursing and supply delivery will be arranged by a Case Manager.

Patient and Caregiver Skills Checklist

Empty the pouch

  • Empty the pouch when it is 1/3 to ½ full of stool or gas

  • Gather necessary items needed to empty the pouch

  • Raise the end of the pouch and open the end to drain into toilet or other container

  • Clean the opening after emptying

  • Apply lubricant/deodorizer if needed

  • Re-clamp or re-seal opening to close the end of the pouch. Tip: When emptying into the toilet, place a piece of toilet paper on the surface of the water in the toilet bowl. This will help prevent splashing of water and stool as the pouch is emptied.

Remove the old pouch

  • Gather necessary items for pouch change

  • Remove the pouch, start by lifting at the edges and holding the skin down as you remove the adhesive barrier

  • Dispose of the old pouch into the trash

Clean the skin

  • Clean the surrounding skin with warm water and a mild soap (optional)

  • If soap is used, rinse the skin with warm water

  • Inspect the surrounding skin for any breakdown or irritation. Inspect the stoma for any changes in color, size, or output

  • After cleansing, make sure the skin is completely dry

  • Apply stoma powder and No Sting Barrier film for crusting method (if needed)

Applying a new pouch

  • Use the measuring guide to determine the size of the stoma

  • Line up the measuring guide to the back of the wafer and trace a pattern

  • Cut the pattern and check for fit before removing the plastic backing of the wafer

  • Remove the backing and save it as a template for the next pouch change

  • If using a barrier ring or stoma paste, apply to skin or the back of the wafer

  • Gently apply the wafer, smoothing out the area immediately surrounding the stoma and then the outer edges

  • If using a 2-piece system, apply the pouch to the wafer

  • Close the opening of the pouch

  • Apply light pressure over the appliance and stoma for 30 to 60 seconds to help the barrier to mold to your skin

Always wash your hands with soap and water after handling, emptying, or changing the ostomy appliance.

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