Adjusting to an Ileostomy or Colostomy

This page is for people living with a new ileostomy or colostomy after cancer surgery, and the people helping them. It covers how the two types differ, pouch and skin care, dehydration, blockages, and when to call for help.

With an ileostomy, the end of the small intestine (ileum) is attached to the stoma. This bypasses the colon, rectum and anus. With a colostomy, the colon is attached to the stoma. This bypasses the rectum and anus (MedlinePlus).

Some ostomies are temporary. MedlinePlus says an ileostomy may be temporary if part of the large intestine remains and needs time to heal. It is permanent when the whole large intestine and rectum have been removed. Ask your surgeon which one you have.

Advice for one type may not fit the other. If a tip does not say which type it covers, check with your team.

An ileostomy bypasses the colon, so dehydration is a risk. MedlinePlus lists these warning signs:

• dry mouth
• passing urine less often
• feeling light-headed or weak

MedlinePlus suggests 6 to 8 cups (1.5 to 2 liters) of fluids a day, and says to talk with your provider about the amount that is right for you. It also says to get help for ongoing diarrhea or very high output.

MedlinePlus says people with an ileostomy can eat a normal diet, though what you tolerate will vary. It suggests you:

• chew food well
• eat 5 to 6 small meals a day
• try new foods one at a time to spot problems

Your team may give you more detailed food advice, especially early on. Follow it.

The stoma is swollen after surgery. MedlinePlus says it shrinks over the next several weeks. Look at the stoma and the skin around it often.

MedlinePlus advises changing an ileostomy pouch every 5 to 8 days, and right away if you have itching or leakage. Change it more often if you sweat a lot, have oily skin, or have watery output. Change it in the morning or at least an hour after a meal, when output is low.

For skin care, MedlinePlus says to:

• wash the stoma and skin with mild, unscented soap or warm water
• dry the skin well, with no wrinkles, before the pouch goes on
• avoid alcohol-based and oil-based products near the stoma
• remove hair with scissors, an electric shaver or a safety razor, not a straight-edge razor

MedlinePlus says to call your doctor if you make less stool than usual, or if you have belly swelling or pain. These can be signs of a blockage.

Ask your team whether a wound, ostomy and continence (WOC) nurse can help. These nurses have special training in stoma and skin care. They can help with pouch fit, leaks and skin problems.

• Call 911 or go to an emergency department if you are vomiting and cannot keep any fluid down, you have severe belly pain, or the stoma turns dusky, grey, or black. Do not drive yourself.
• Call your care team right away if you make less stool than usual, your belly is swollen or painful, or you have signs of dehydration (dry mouth, passing urine less often, light-headed or weak). Also call about ongoing diarrhea or very high output.
• Call your care team within a day or two if the stoma changes size or color, bleeds more than usual, pulls in below skin level, or the skin around it is red, raw, rashy or sore. Call too if the pouch leaks often or fits poorly.

MedlinePlus lists a stoma that turns purple, black or white as a reason to call your provider. Treat that as urgent.

• MedlinePlus: Ileostomy
• MedlinePlus: Ileostomy, caring for your stoma
• MedlinePlus: Ileostomy and your diet
• MedlinePlus: Ileostomy, changing your pouch
• MedlinePlus: Ostomy