Tommy's PregnancyHub

Taking your premature baby home with a stoma (colostomy or ileostomy)

If your premature baby had severe bowel problems, they may have had surgery to form a stoma (colostomy or ileostomy) while they were in hospital.

Your healthcare team will have explained why your baby needed a stoma. Possible reasons include a bowel infection, such as necrotising enterocolitis, or if the bowel is damaged, diseased or blocked.   

Looking after your baby’s stoma can feel daunting but the healthcare team will make sure you know what to do and where to get help before you leave the baby unit. 

What are colostomies and ileostomies?

A colostomy or ileostomy are operations to attach the bowel to an opening in the wall of the abdomen, called a stoma or ostomy. Your baby’s poo passes out of the body through the stoma, leaving the damaged section of bowel to rest. Often a second opening is formed next to the stoma, called a mucous fistula to allow any mucous to pass from the resting part of the bowel. A small bag fits over the stoma to collect the poo and mucous. 

If your baby has a colostomy, their large bowel (colon) will be used to form the stoma. An ileostomy is formed from the small bowel (ileum). 

The stoma should look red and moist, like the inside of your mouth. The stoma doesn’t contain nerves so it shouldn’t hurt your baby. 

Most stomas are reversed after a few months or years, but some babies may need a permanent stoma. 

How do I look after my baby’s colostomy or ileostomy?

Your healthcare team will show you how to look after your baby’s stoma before you leave the baby unit. They will also tell you what to do if you notice any problems with the stoma or if you’re worried your baby is passing too much or too little poo.

The team may advise you to empty the stoma bag when it’s a third full. Premature babies may need to have their bags changed every 12–24 hours to begin with. As they get older, you may need to change it every 2–3 days.

The skin around the stoma can become irritated by the stoma bag and any leakages from the stoma. You can clean the skin using lukewarm water and a soft cloth and gently patting dry. Avoid baby wipes, which can irritate the skin, or other products, which can stop the stoma bag sticking to the skin. 

The healthcare team will give you your baby’s stoma supplies and tell you how you can get more once you’re home. They can also help if you have any questions or worries about your baby’s stoma. 

When should I contact my baby’s healthcare team?

Contact the healthcare team, stoma nurse or GP if:   

  • blood is coming from inside the stoma opening and doesn’t stop (it’s normal for the stoma itself to bleed slightly at first)
  • the stoma changes colour or looks purple, black or blue
  • the stoma starts to sink into the body (retraction) or stick out (prolapse)
  • your baby is producing more or less poo than usual
  • the skin around the stoma looks irritated and sore
  • your baby isn’t putting on weight.

More information and support

Colostomy UK is a charity that supports and empowers people living with a stoma. 

Ileostomy & Internal Pouch Association supports people living with an ileostomy/

Stomawise is an online support charity for people having undergone ostomy surgery/

Norfolk and Norwich University Hospitals NHS Foundation Trust (2020) Trust Guideline for the Management of Stoma Output in Neonates and Infants. https://www.nnuh.nhs.uk/publication/trust-guideline-for-the-management-of-stoma-output-in-neonates-and-infants-v1/

GPSNAB (2018) Paediatric stoma care. Global best practice guidelines for neonates, children and teenagers. Global Paediatric Stoma Nurses Advisory Board. https://www.coloplast.co.uk/Global/UK/Stoma/CPOC_Paediatric_stoma_care_guidelines_A4.pdf

NHS (2017) Colostomy. https://www.nhs.uk/conditions/colostomy/ (Page last reviewed: 18/09/2017.
Next review due: 18/09/2020)

GPSNAB (2018) Paediatric stoma care. Global best practice guidelines for neonates, children and teenagers. Global Paediatric Stoma Nurses Advisory Board. https://www.coloplast.co.uk/Global/UK/Stoma/CPOC_Paediatric_stoma_care_guidelines_A4.pdf
  
Great Ormond Street Hospital for Children NHS Foundation Trust (2019) Ileostomy. https://www.gosh.nhs.uk/conditions-and-treatments/procedures-and-treatments/ileostomy-0