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Patient education: Living with an ileostomy (The Basics)

Patient education: Living with an ileostomy (The Basics)

What is an ileostomy? — An ileostomy is an opening in the belly made by a doctor as a way for waste products from the intestines to leave the body (figure 1).

The hole in the skin is sometimes called a "stoma." This is the medical term for "opening." Waste products from the intestines come out through the stoma into a bag that is attached to the skin.

What will my bowel movements be like with an ileostomy? — With an ileostomy, the waste products from the intestines that pass into the bag are more frequent than normal bowel movements. They are also looser (more liquid) and larger in volume.

How do I take care of the ileostomy? — A special type of nurse, called an "ostomy nurse" or a "wound, ostomy, and continence nurse," will teach you how to:

Empty the bag

Change the bag

Take care of your skin

Check your stoma for problems

There are different types of ileostomy bags (figure 2). With some types of bags, you empty, clean, and reuse them. With other types, you throw them out after each use.

Some people worry that their bag will leak, or that other people will be able to smell their bowel movements. But this is not common once you get used to using a bag. The bags are made so that they do not leak or smell.

Some people have a special type of ileostomy. They don't use a bag to collect their bowel movements. Instead, they have an internal pouch made out of intestine, which they drain through the stoma a few times a day.

What problems can happen with an ileostomy? — Different problems can happen with an ileostomy, either right away or years later. Let your doctor or nurse know if you have any of the following symptoms or problems:

Your stoma is swollen or larger than usual, or you have a bulge to the side of the stoma.

Your stoma is smaller than usual.

Your stoma leaks more than usual.

You have a rash or sores around your stoma.

You have a lot more waste coming from your stoma than usual.

You have sudden belly pain, cramps, or nausea.

You have signs of dehydration – These include not making as much urine, having dark yellow urine, or feeling thirsty, tired, dizzy, or confused.

You haven't passed any gas or waste from your stoma for a while, and you have bloating, nausea, or pain – These symptoms could mean that there is a blockage in your intestine.

Your stoma starts turning purple or black instead of pink.

Your stoma is bleeding or has bloody fluid coming from it.

What should I know about taking medicines? — Some people who have an ileostomy also have a shortened intestine. This makes it hard for the body to absorb medicines normally. Because of this, try to use liquid medicines instead of pills. Do not take pills labeled "enteric coated," "time release," or "extended release." Your body might not absorb these types of pills well.

Do I need to follow a special diet? — Yes:

When a person has an ileostomy, their body doesn't always absorb water, vitamins, and salts normally. Because of this, drink plenty of fluids to avoid getting dehydrated.

Avoid eating foods that could easily block your intestine or stoma. Some of these foods include popcorn, mushrooms, dried fruit, and fruits and vegetables with skin.

The foods you eat can also affect the odor of your bowel movements, and how solid or loose they are. Certain foods can also make you have more gas. These are listed in the table (table 1).

What will my life be like with an ileostomy? — You should be able to live an active and normal life with the ileostomy. But many people worry about the following things:

Clothes – You do not need to wear special clothes. Other people won't be able to see the bag under your clothes.

Baths and showers – You can take a bath or shower with or without the bag on.

Sports – You will probably be able to play most sports. You might want to wear a special belt to protect the bag and keep it in place. Doctors usually recommend that people with an ileostomy not play certain contact sports (such as football) or sports that involve straining, such as lifting weights.

Swimming – You can swim with the bag on. Empty the bag before you swim.

Sex – You can have sex. But you might want to wear a special wrap to protect (and cover) the bag during sex.

Travel – When you travel, bring extra supplies for the ileostomy. If you fly, take your supplies in your carry-on luggage.

It is normal to feed sad, upset, or worried when you have an ileostomy. If you have these feelings, try to get help. You can talk with a family member, friend, or counselor. You might also find it helpful to go to a support group for people with an ileostomy.

More on this topic

Patient education: Crohn disease in adults (The Basics)
Patient education: Ulcerative colitis in adults (The Basics)
Patient education: Gas and bloating (The Basics)
Patient education: Colectomy (The Basics)
Patient education: Living with a colostomy (The Basics)
Patient education: Ileostomy diet (The Basics)
Patient education: Colostomy or ileostomy reversal (The Basics)

Patient education: Ulcerative colitis (Beyond the Basics)
Patient education: Crohn disease (Beyond the Basics)

This topic retrieved from UpToDate on: Feb 02, 2024.
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