大象tv

You will need to learn how to take care of your ileostomy at home. You may also want a family member, caregiver or friend to learn in case you need help.

Recovery from surgery

Right after surgery, your ileostomy will likely have a clear pouch placed over it. The type of pouch used right after surgery is usually different from those you’ll use at home.

After surgery, your stoma may be quite swollen. There may also be bruises and stitches around it. While a stoma normally is moist and pink or red in color, it may be darker at first.

Your stoma will change a lot as it heals. It will get smaller and any bruising will go away, leaving a moist red or pink stoma. This may take several weeks.

Caring for a loop or end ileostomy

If you have a loop or end ileostomy, you will not be able to control your bowel movement. So you will need to use a pouching system to catch your stool and protect the skin around your stoma. Your ostomy nurse or doctor will help you find a pouching system that’s right for you. 

Ostomy belts

Some people like to wear an ostomy belt to help hold their pouch in place. A belt might make you feel more secure by applying pressure to improve the seal of the skin barrier. Some pouching systems come with loops to attach a belt to.

If you choose to wear a belt, adjust it so that you can get 2 fingers between the belt and your waist. This helps to keep you from getting a deep groove or cut in the skin around the stoma. This can cause damage to your stoma and sores (pressure ulcers) on the nearby skin.

People in wheelchairs may need special belts. Supply companies often carry these special belts, or an ostomy nurse can talk to you about making one yourself.

Emptying and changing the pouching system

You’ll be taught how to change and empty your pouching system before you leave the hospital.

How to empty the pouch

• To keep your ileostomy pouch from bulging and leaking, empty it when it is about 1/3 to 1/2 full If you are using a drainable pouch: Sit as far back on the toilet as you can or on a chair facing the toilet. Some people prefer to sit backwards on the toilet seat. Place a small strip of toilet paper in the toilet to decrease splashing.

• Hold the bottom of the pouch up and open the clip or Velcro on the end or tail of the pouch.
• Slowly unroll the tail over the toilet.
• Gently empty the contents.
• Clean the outside and inside of the pouch tail with toilet paper.
• Roll up the end of the pouch and clip.

Closed-pouch systems will need to be removed, disposed of and replaced with each use, but are not recommended for ileostomies.  For two-piece systems, just the pouch will need to be replaced. If you are using a one-piece system, the whole pouching system will need to be replaced.

When to change the pouching system

Most people change their pouching systems twice a week. You may need to change your pouch and skin barrier more often if it is leaking or if your skin is irritated. If your skin around your stoma begins to itch, burn or feel wet you should change your pouching system.

It’s easiest to change your pouching system during the times of day when you usually have less bowel activity. This might be in the morning before you eat or drink. Or allow at least 1 hour after a meal, when your digestive system has slowed down.

Right after surgery, your ostomy output may be thin and watery. As your stool gets thicker, it should be easier to find the best time for changing your pouch.

Factors that affect the pouching system seal

The skin barrier of your pouching system must stick securely to the skin around your stoma. When you apply the skin barrier, be sure to apply gentle pressure so that it can create a good seal on your skin.

• The length of time a pouch will stay sealed to your skin depends on many things, such as:  The weather and your body’s heat. If you sweat, you will likely need to change your pouching system more often.
• Your skin texture. If you have more oily skin, you might need to change your skin barrier more often.  
• Weight changes. Weight gained or lost after ileostomy surgery can change the shape of your abdomen. You may need a different skin barrier or pouching system.
• Your diet.  Foods that cause watery stool are more likely to break a seal than a more formed stool.
• Physical activities. Swimming, very strenuous sports, or anything that makes you sweat may shorten wear time.

If you have problems keeping a good seal, talk to your ostomy nurse or health care team about other skin barrier options. There are likely different products that might help you keep the skin barrier intact for longer.

Caring for a continent ileostomy

If you have a continent ileostomy, you will not need to use an external pouching system. But you will need to learn how to drain it and care for your stoma.

When your continent ileostomy is first placed, a catheter is put into your stoma. The catheter will be left in place for about 2 to 3 weeks so that the pouch can heal. Stool will drain from the catheter. Once your pouch heals, the catheter is removed and a stoma pouch or gauze will be placed over your stoma.

You will be taught how to use a catheter to drain the stool from your stoma. You will likely have to drain your pouch every 2 hours at the beginning, but over time should only have to drain it 2 to 4 times a day. You should also learn how to irrigate the catheter to prevent blockages.

Bathing

Exposure to air or contact with soap and water won’t harm your ileostomy.  Water will not flow into your stoma. Soap will not irritate it, but soap may interfere with the skin barrier sticking to the skin.

It’s best to only use water while cleaning the skin around your stoma. If you do use soap, be sure to rinse your skin well.

If you want to leave your skin barrier and pouch on while you shower or bathe, it can help to dry the collar of your skin barrier with a towel or hair dryer after you are done. This can help prevent your barrier from coming loose.  

What to wear when you have a ileostomy

You will not need to wear special clothes over your ileostomy. Ostomy pouches are fairly flat and hard to see under most clothing.

Snug undergarments such as cotton stretch underpants, t-shirts, or camisoles may give you extra support, security, and help conceal pouches. A pouch cover can add comfort by absorbing sweat and keep the plastic pouch from resting against your skin.

Managing ileostomy problems

Since ileostomies change the way your bowels work, you may have problems that you are not used to. But there are ways to deal with them.

Loose stools and diarrhea

Because your colon has been removed or bypassed, the stool that comes out of your ileostomy is usually less formed than your stool was before surgery. This is because your large intestine absorbs much of the water and electrolytes from your stool before it is passed. This is normal.

Your stools may be loose and even watery for the first couple of weeks after your ileostomy is placed. But over time, the stool from your ileostomy should become less watery and almost paste-like. It is important to let your doctor or ostomy nurse know if your stools remain or become watery over time.

Loose stool can also come from eating certain foods, but it usually only lasts a short time. Raw fruits and vegetables, sugary foods, milk, fruit juice, prune juice, or impure drinking water are examples of things that may change your stool. Emotional stress might also cause loose stools. Some people with ileostomies may always have “watery discharge,” and this is normal for them.

Diarrhea

Diarrhea may be hard to detect with an ileostomy. But it can be a sign of a problem. It includes frequent loose or watery bowel movements in greater amounts than usual. It happens when food passes through the small intestine too quickly for fluids and electrolytes to be absorbed.

Several things can cause diarrhea:

• Infection or food poisoning, which may also cause fever and vomiting
• Antibiotics and other prescription medicines
• Partial blockage, which also causes smelly discharge, cramps, forceful liquid output, and a lot of noises from the stoma. It can be caused by food or other factors. Get medical help if this happens to you.

Talk with your doctor or ostomy nurse if you have ongoing diarrhea. Discuss the foods and liquids you take in, your eating schedule, how much you usually eat, and any medicines you might be taking. You may be given medicine to help slow things down. Remember, no matter what, you need a well-balanced diet and good fluid intake to have a good output.

Dehydration and electrolyte imbalance

Electrolytes are salts and minerals in the blood, like potassium, magnesium, and sodium. Keeping them balanced is important. When the colon (large intestine) is removed, you’re at greater risk for electrolyte imbalance. Diarrhea, vomiting, and a lot of sweating can increase this risk.

Dehydration and electrolyte imbalances are a serious concern. Let your doctor know right or get emergency care if you feel dizzy, weak, faint when you stand up, feel confused or have a fast heart rate.

Dehydration

Symptoms of dehydration include increased thirst, dry mouth, decreased urine output, feeling light-headed, and feeling tired. If you think you might be dehydrated, you’ll need to drink more fluids. It is best to drink slowly (sipping).

To avoid dehydration, you should try to drink 8 to 10 eight-ounce glasses of fluid a day. If you have diarrhea, you may need more. Sports and rehydrating drinks that contain potassium and sodium can be helpful. But any liquid containing water (soda, milk, juice, tea, etc.) helps to meet your daily need for fluid.

Low sodium or potassium

If your sodium levels are low, you may have a loss of appetite, drowsiness, and leg cramps. If your potassium levels are low, you may feel very tired, muscle weakness, and shortness of breath.

Dehydration, low sodium, and low potassium can all be dangerous and should be treated right away. Keep in mind that some of these symptoms can be caused by other problems which may be emergencies.

Short bowel syndrome

Short bowel syndrome doesn’t happen often, but can happen when surgery is done to remove a large part of the small intestine. Short bowel syndrome needs special attention because there’s not enough intestine left to absorb the nutrients the body needs.

If you have short bowel syndrome, you will need to be closely watched to make sure you’re getting enough calories, carbohydrates, proteins, fats, vitamins, and minerals. You need to be careful to avoid getting diarrhea, and to be  able to quickly access medical care, if needed.

Food blockage (obstruction)

Because the ileum is narrow, people with ileostomies are at risk of developing partial or full blockages from undigested foods.  If this happens, stool and gas cannot

pass into the pouch. You might have abdominal pain or swelling, cramping, stoma swelling, and watery stool. Call your doctor or ostomy nurse right away if this happens.

If you think that your bowel might be obstructed:

• Watch for swelling of your stoma and expand the opening of the skin barrier as needed until the swelling goes down.
• Take a warm bath to relax your abdominal muscles.
• Fluids can be taken if there is some stool output: solid foods should be avoided
• Sometimes changing your position, such as drawing your knees up to your chest, may help move along the food in your gut.
• Do NOT take a laxative.

If you keep having pain and cramping with no output from your stoma for more than 2 hours, and you can’t reach your doctor or ostomy nurse, go to the emergency room. Take all your ostomy supplies with you.

Diet

You do not have to eat a special diet when you have an ileostomy. But there are a few things to keep in mind.

• Drink plenty of fluids to lower the risk of dehydration. Your stools are  likely to be more watery than before your surgery.
• Be sure to chew high-fiber foods well, such as nuts, popcorn, and corn. Otherwise, they might cause cramping or even a blockage in your ileostomy.
• Keep track of foods that seem to cause you to have diarrhea or gas. It may be best to avoid them.

Gas (flatulence)

When you first get your ileostomy, you might have a lot of gas. This can happen after most surgery on your abdomen (belly).  While this gas is not harmful, you may feel uncomfortable with the noises it can make.  

If you worry about other people hearing the rumbling, you could say, “Excuse me, my stomach’s growling.” If you feel as though you are about to release gas when you’re with people, casually fold your arms across your belly so that your forearm rests over your stoma. This will muffle most sounds. Check with your ostomy nurse or doctor about products you can take to help lessen gas.

Certain foods may cause gas, such as eggs, cabbage, broccoli, onions, fish, beans, milk, cheese, carbonated drinks, and alcohol. To help decrease the amount of gas you get:

• Eat regularly and don’t skip meals.
• Eat smaller meals up to 6 times a day.   

Avoid smoking, chewing gum, or drinking through a straw.

Odor

Many things can affect the odor of the gas and stool that comes out of your ileostomy. Certain foods, medicines and vitamins can cause odor. Even the normal bacteria in your intestine and illness can contribute.

• Foods that can produce odor include eggs, cabbage, cheese, cucumbers, onions, garlic, fish, dairy foods, and coffee. If you find that certain foods bother you, avoid them.
• Use an odor-proof pouch.
• Check to see that your skin barrier is stuck securely to your skin.
• Empty your pouch often.
• Place order eliminators such as ostomy deodorant liquids or tablets in your pouch.

There are some medicines you can take that may help. Some things that many people have found help with odor are chlorophyll tablets, bismuth subgallate, and bismuth subcarbonate. Check with your doctor or ostomy nurse about these products and how to use them.

And think about using air deodorizers in the room when you empty your pouch.

Finding medicine pills or capsules in your pouch

If you find pills or capsules in your pouch, it may mean that you may not be getting all the medicine you were prescribed. If you notice this, talk with your health care provider or pharmacist. There may be other medicines or formulations you can use to make sure you’re getting what you need. Liquid or liquid gel medicines tend to absorb faster and may work better for you.

Spots of blood on the stoma

Spots of blood on your stoma are not a cause for alarm. Cleaning around the stoma as you change the pouch or skin barrier may cause slight bleeding. The blood vessels in the tissues of the stoma are very delicate at the surface and are easily disturbed.

Any bleeding should stop quickly. If it doesn’t, use gauze to put pressure on the stoma and call your ostomy nurse or your doctor for guidance

Shaving hair under the pouch

If you have a lot of hair around your stoma, you might have trouble getting your skin barrier to stick well. The hair might also pull out when you take off the skin barrier which can be painful.  Shaving or trimming the hair with scissors may help with this.

It’s recommended that you dry shave the skin around your stoma using stoma powder. Soap and shaving creams have lotions and oils that might make it hard to get a good seal with the skin barrier. After shaving, rinse well and dry the skin around your stoma well before applying your pouching system.

Severe skin problems around your stoma

Your stoma most often will not cause pain or discomfort since there are no nerves in your bowels. But the skin around your stoma might become irritated and damaged.  This can lead to skin that is red, sore and sometimes weeping (wet all the time).

Skin breakdown around an ileostomy stoma may be caused by:

• Exposure to the skin around your stoma to stool from your ileostomy from a poorly sized skin barrier or skin barrier breakdown.
• Repeated skin barrier removal and replacement.
• Being too rough when cleaning the skin around the stoma.
• Reactions to the skin barrier or pouching system materials you use.

Skin problems can keep you from getting a good skin barrier seal around your stoma, making these problems worse. It’s important to treat minor irritations right away. Get in touch with your doctor or ostomy nurse if your skin irritation doesn’t get better or gets worse over time. They can help you determine the cause of your skin problems and give you medicine or other options to help heal your skin. Changes may be needed to the pouching system to get a better seal.

If you have irritation or skin damage from a very tight ostomy belt, loosen or remove the belt and call your doctor or ostomy nurse right away. You might need treatment.

During cancer treatment

If you have a temporary ileostomy, you may need to wait to have it reversed until after you complete your cancer treatment. You may need help caring for your ostomy if you are too tired or sick after treatment.

If you are receiving radiation therapy in the area of your ileostomy, you may need to remove the pouch during treatment. Radiation therapy may also cause skin changes near your ileostomy.

Ask your health care team about any special precautions you should take to care for your ileostomy during cancer treatment.

When you should call the doctor

You should call the doctor or ostomy nurse if you have:

• Cramps lasting more than 2 or 3 hours
• Continuous nausea and vomiting
• Severe watery stool lasting more than 5 or 6 hours
• Bad odor lasting more than a week (This may be a sign of infection.)
• A cut or injury to your stoma
• Red, sore, or weeping skin or deep sores (ulcers) around your stoma.
• A lot of bleeding from your stoma opening (or a moderate amount in the pouch that you notice several times when emptying it).  
• Continuous bleeding where the stoma meets the skin
• Unusual change in your stoma size or color

Don’t be afraid to call your doctor or ostomy nurse for anything unusual going on with your ostomy. They can help you figure out what the problem is and how to deal with it.