- What is an ileostomy?
- How your digestive system works
- Types of ileostomies
- Managing your ileostomy
- Choosing an ileostomy pouching system
- Emptying and changing the ileostomy pouching system
- Ordering and storing ileostomy supplies
- Caring for an ileostomy
- Avoiding and managing ileostomy problems
- If you are hospitalized while you have an ileostomy
- Living with an ileostomy
- Telling others about your ileostomy
- What to wear when you have an ileostomy
- Eating and digestion with a ileostomy
- Returning to work after getting an ileostomy
- Intimacy and sexuality when you have an ileostomy
- Playing sports and staying active with an ileostomy
- Traveling when you have an ileostomy
- For parents of children with ileostomies
- Getting help, information, and support
- To learn more
Avoiding and managing ileostomy problems
Severe skin problems
Large areas of skin that are red, sore, and weeping (always wet) will keep you from getting a good seal around your stoma. It’s important to treat minor irritations right away. If you have a large irritated area, or one that’s getting larger despite special care, contact your doctor or ostomy nurse. They may prescribe medicine to help dry out and heal your skin.
For deep pressure ulcers caused by a very tight ostomy belt, loosen or remove the belt and call your doctor or ostomy nurse right away. You will need treatment.
There will be times when your ileostomy does not have output for short periods of time. This is normal. But, if your stoma is not active for 4 to 6 hours and you have cramps, pain, and/or nausea, the intestine could be blocked (the medical word is obstructed). Call your doctor or ostomy nurse right away if this happens.
These are some things you can do to help move things through your ileostomy:
- Watch for swelling of the stoma and adjust the opening of the wafer as needed until the swelling goes down.
- Take a warm bath to relax your abdominal muscles.
- 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.
Foods high in fiber such as cabbage, greens, celery, pineapple, nuts, coconut, and corn can cause obstruction. Obstruction can also be caused by internal changes such as adhesions (scar tissue that forms inside your abdomen after surgery).
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.
Diarrhea is usually a warning that something isn’t right. Diarrhea is defined as 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. It can come on suddenly and may cause cramps. It can cause your body to lose a lot of fluids and electrolytes. You must quickly replace these electrolytes to avoid getting sick from dehydration and mineral loss. (See “Electrolyte balance” below for more on this.)
Loose stool can also come from eating certain foods, but it usually only lasts a short time. Raw fruits and vegetables, milk, fruit juice, prune juice, or impure drinking water are examples of things that may change your stoma output. Loose stool may also be caused by emotional stress. Some people with ileostomies may always have “watery discharge,” and this is normal for them.
Several things can cause diarrhea:
- Intestinal infection or food poisoning, which may also cause fever and/or 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.
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 a greater risk for electrolyte imbalance. Diarrhea, vomiting, and a lot of sweating can increase this risk.
Dehydration is also a serious concern. Symptoms include increased thirst, dry mouth, decreased urine output, feeling light-headed, and feeling tired. If you get dehydrated, you’ll need to drink more fluids. 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. Drinks such as Gatorade®, PowerAde®, or Pedialyte® contain potassium and sodium. But any liquid containing water (soda, milk, juice, tea, etc.) helps to meet your daily need for fluid.
Loss of appetite, drowsiness, and leg cramps may be signs of sodium loss. Fatigue, muscle weakness, and shortness of breath may be signs of potassium loss. 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. Call your doctor or 911 right away if you are dizzy, weak, or having other serious symptoms.
Phantom rectum is much like the “phantom limb” of amputees who feel as if their removed limb is still there. It’s normal for you to have the urge to move your bowels the way you did before surgery. This can happen at any time and may go on for years after surgery. If the rectum has not been removed, you may have this feeling and also may pass mucus when sitting on the toilet. Some people who have had their rectum removed say that the feeling is helped by sitting on the toilet and acting as if a bowel movement is taking place.
Short bowel syndrome
This condition happens 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.
People with short bowel syndrome must be under a doctor’s care. They must be closely watched to make sure they’re taking in enough calories, carbohydrates, proteins, fats, vitamins, and minerals. They can live a normal life, but must be careful to avoid diarrhea, and be within quick reach of medical care. The shorter the small intestine, the more watery the discharge will be. This may reduce the time a pouch can be worn because the skin barrier breaks down more rapidly. Special pouching systems are available for people with very liquid ileostomy output.
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
- No ileostomy output for 4 to 6 hours with cramping and nausea
- Severe watery discharge lasting more than 5 or 6 hours
- Bad odor lasting more than a week (This may be a sign of infection.)
- A cut in the stoma
- Injury to the stoma
- Bad skin irritation or deep sores (ulcers)
- A lot of bleeding from the stoma opening (or a moderate amount in the pouch that you notice several times when emptying it) (NOTE: Eating beets will cause some red discoloration.)
- Continuous bleeding where the stoma meets the skin
- Unusual change in your stoma size or color
- Anything unusual going on with your ostomy
Last Medical Review: 12/02/2014
Last Revised: 12/02/2014