An ileostomy is a surgery that connects the lowest part of your small intestine to the outside of your body. Your doctor does this by creating an opening called a stoma.
The lowest part of your small intestine is called the ileum. Placing a stoma there allows solid waste (stool or feces) and gas to leave the body without going through the large intestine (colon) or rectum. A pouch you wear on the outside of your body collects the stool.
What is the small intestine?
The small intestine is the middle part of your digestive system. It is located beneath the stomach, and it is where food goes after it passes through the stomach.
The small intestine digests nutrients from the food you eat and helps you absorb them. Then it moves waste material into the next section of your digestive system, the large intestine (colon). The colon is below your small intestine. It absorbs the water from waste material and stores it until your next bowel movement.
Why do I need an ileostomy?
You may have an ileostomy because:
The large intestine is blocked or damaged, including by cancer or a problem with blood flow to the bowels
Part of the large intestine has been surgically removed
You have a tear in the colon that causes infection
If you have certain types of cancer or certain non-cancerous conditions, you may be more likely to need an ileostomy. These include:
A hereditary, cancer-related syndrome called familial adenomatous polyposis
How long will I need an ileostomy?
If you need a ileostomy during your cancer care, you may only need it for a few months while the colon or rectum heals. However, some people may need a permanent ileostomy.
Types of ileostomy
There are 3 types of ileostomy.
Standard ileostomy. This is the most common type. The end of the small intestine is pulled through the right lower part of your abdomen and secured to the outside skin. You wear a pouch at all times to collect stool that moves through the opening.
Continent ileostomy. You do not need to wear a pouch with this type. Instead, your doctor creates a small pouch at the end of your small intestine. The pouch has a valve where you can insert a small tube called a catheter. You do this several times a day to drain waste.
Ileo-anal reservoir. This is also called a J-pouch or pelvic pouch. Your doctor creates a pouch from the small intestine and rectum. They connects the pouch to the anus to store waste. Then, stool can pass from the pouch through the anus.
What should I expect during surgery?
You will receive general anesthesia before the surgery. The procedure may be done with:
A surgical incision, which is a large cut in the abdomen.
Laparoscopic surgery, which involves several small incisions. This method reduces pain and recovery time.
Surgery may include the following risks:
Bleeding inside the small intestine or from the stoma
Damage to nearby organs
Not being able to absorb enough nutrients from food
Intestinal blockage caused by scar tissue
Talk with your cancer care team about what to expect and the potential risks of your specific surgery. They will also explain why this surgery is being recommended for you.
How long will it take to recover from surgery?
Most people stay in the hospital for 4 to 7 days on average after the procedure. But the time you spend in hospital will often depend on why you needed the ileostomy. Complete recovery from an ileostomy may take up to 2 months. During this time, you will have limits on what you can eat while the small intestine heals.
If the ileostomy is temporary, you may need a reversal, or closure, surgery after the small intestine has healed. This usually happens about 3 months after the ileostomy heals.
How to care for your ileostomy
Emptying the ileostomy pouch. Once you have recovered from surgery, you will need to empty the ileostomy pouch, also called an ileostomy bag. You will probably do this several times a day. You will not be able to control when stool and gas move into the pouch. It is best to empty it when the bag is less than half full.
Pouches come in many sizes and shapes, but there are 2 main types:
One-piece pouches attach directly to a small adhesive stoma cover called a skin barrier. This cover has a hole in the center with the pouch on it.
Two-piece pouches include a skin barrier and a pouch that can detach from it.
The purpose of the skin barrier is to protect the skin around your stoma from waste and moisture. Pouch options include disposable pouches and pouches you can drain.
Ask your health care team about which type of ileostomy pouch you will receive.
Caring for your skin. The skin around your stoma will always look red. It may bleed occasionally, which is normal. But bleeding should not continue for more than a few minutes. Let your health care team know if bleeding continues.
It is important to make sure your pouch is correctly connected to your stoma. Pouches that do not fit well can irritate the skin. Keep this area clean and dry. If this skin looks wet, bumpy, itchy, or painful, contact your health care team since these can be signs of infection.
Managing ileostomy concerns
High stool output. During the first few days after surgery, you may pass more stool than normal through the stoma. This will become less as your body gets used to the stoma and the ileostomy. If it does not decrease after a few days, call your health care team. You may lose too many fluids, and this could cause an electrolyte imbalance. Electrolytes are minerals that help keep your body working correctly.
Managing gas. Just like with stool, you will also need to release gas from your ileostomy pouch. The way you do this depends on the type of pouch. Some pouches have a filter that deodorizes and vents gas. This keeps the pouch from stretching too much, coming off, or bursting.
The amount of gas you have depends on your diet and the type of ileostomy. Foods and drinks such as beans, onions, milk, and alcohol can cause a lot of gas. Swallowing air can also increase the amount of gas in your small intestine. This happens when you chew gum or drink through a straw.
You may have a lot of gas right after surgery. But you should have less as your body heals. Your health care team can help you make food and lifestyle choices to reduce gas. It may be helpful to talk with an oncology dietitian.
Whole pills or capsules in stool. Coated pills and extended-release capsules may come out intact in your pouch. This can mean that your body did not absorb the medication. Tell your health care team if this happens. They may be able to prescribe liquid or gel medications instead.
Blocked stoma. Scar tissue or undigested food may block the stoma. If this happens, stool and gas cannot pass into the pouch. You may have abdominal pain or swelling, nausea or vomiting.
You might be able to move the blockage out of the way yourself. Try avoiding solid food and drinking extra fluids, including warm drinks like tea. You can also try massaging your abdomen around the stoma or pulling your knees up to your chest and rocking from side to side. If these tips do not work, call your health care team right away.
Questions to ask the health care team
Can you explain the ileostomy surgery recommended for me?
What are the common side effects of this surgery?
How long will the ileostomy surgery take?
What will my recovery from this surgery be like?
When should I let you know if I experience any side effects?
What side effects do you need to know about right away?
Who should I contact about my side effects during regular business hours? After hours?
How should I care for my ileostomy?