Colostomy and Ileostomy

What is a colostomy?

A colostomy is a surgical procedure in which a stoma is created by bringing the healthy end of the large intestine or colon through an incision in the front of the abdominal wall, and suturing it into place. This opening along with the ostomy bag in place will allow stool (poop) to leave the body. A colostomy is often created when a child has a condition where there is an abnormality in the colon or large intestine. A colostomy may be needed to treat several different diseases and conditions. These include:
  • A birth defect such as a missing anal opening referred to as imperforate anus. 
  • A serious infection such as necrotizing enterocolitis. 
  • Diverticulitis (inflammation of the little sacs in the colon). 
  • Inflammatory bowel disease 
  • Partial or complete intestinal or bowel blockage. 
  • Hirschsprung’s disease
The creation of a colostomy will not change the way the digestive system works. Some infections or bowel injuries require giving the bowel a temporary rest, then reattaching it. A permanent colostomy would be required for a more serious problem.

What is an ileostomy?

An ileostomy is a surgically created opening of the small bowel or ileum through the abdominal wall. This opening on the abdomen is called a stoma. An ileostomy is needed when the large intestine (colon) cannot be used and must be avoided or removed. The work of the colon is to absorb water. Stool coming from the colon is firm, but stool from the ileostomy is watery or pasty.

An ileostomy can be either permanent or temporary. A permanent ileostomy can result from the need to remove the entire large bowel before the stoma is made. Ileostomies are sometimes created as a temporary measure, to allow the intestine a chance to rest and heal after surgery. Surgeons may reconnect the intestine later, when it has healed. The surgeon will advise you if the ileostomy is just a temporary measure. Ileostomy surgery may be needed to treat several different diseases and conditions. These include but are not limited to:
  • Chron’s disease 
  • Ulcerative Colitis 
  • Birth defects that may have caused damage to the intestines 
  • NEC (necrotizing enterocolitis)

What will happen in the hospital?

Having a colostomy or ileostomy placed will be a big change in your child’s life, but the surgery itself will be well-explained. Before the actual surgery, your child may require a bowel cleanout to remove all stool from the colon, this may require coming in the hospital the day before your surgery. Your child will not be able to eat or drink prior to the procedure but will be kept hydrated with fluids through a peripheral intravenous catheter. Your child will be taken to the operating room and undergo anesthesia to allow the operation to be performed. A colostomy or ileostomy may either be performed as an open procedure with a small incision, or laparascopically with a tiny camera and several small cuts.

When will my child be discharged?

A colostomy or leostomy will require your child to remain in the hospital for about three days to one week, depending on the return of bowel function (gas or a bowel movement). They will also have to be able to eat and drink without vomiting, and their pain must be well controlled on oral medications that they will eventually be discharged home with.

Take an interest in your child’s colostomy care while in the hospital. There are many resources available if you or your child have any questions. If your child is not old enough, you will need to help your child learn to take care of the ostomy and pouching system. Your child may need a lot of help and support at first. A very young child can be taught to empty the pouch. An older child can get supplies together and learn the steps of changing the pouch, until the whole process can be done alone. He or she may be unsure about how to use the new supplies, feel physically weak, and tire easily. Ostomy teaching will be initiated in the hospital and supplies will be ordered prior to discharge.

What will be my child's recovery?

Having an ostomy will not prevent your child from living a normal, active life. Many doctors do not recommend contact sports because of possible injury to the stoma from a severe blow, or because the pouching system may slip. Activities such as weight lifting can cause a hernia at the stoma site. Special protection can help prevent these problems. Further discussion of activities can be discussed at your child’s follow up appointment.

Water will not hurt your child’s ostomy; they can take a bath or shower with or without a pouching system in place. Swimming is also ok with a pouch in place. Normal exposure to air or contact with soap and water will not harm the stoma. Soap will not irritate it and water will not flow in.

You will find that your child can take part in most sports, go on overnight trips, camp, and, in fact, enjoy the same activities as before. At first, it may be hard to let your child go away on his or her own. Talk about what can be done if any problems come up while your child is away from home. If you can help your child know how to best handle any problems that may come up, he or she will not need any "special" treatment or seem different from any other children.

What should I look out for after the operation? Hospitalization?

Stomas come in all shapes and sizes. Some are round and others are oval, it may stick out or be flat. The color should be a deep red or pink color that resembles the inside of your cheek. The size of the opening will change when your child gains or loses weight. This change will be most noticeable in the first six to eight weeks after surgery when the swelling from surgery goes down, decreasing the stoma size. A nurse will show you and/or your child how to measure the stoma, and fit the pouch opening according to size.

The most common problem after colostomy surgery (other than skin irritation) is herniation around the colostomy. A hernia is the bulging of a loop of organ or tissue through the belly (abdominal) muscles (called an abdominal hernia). This bulging can happen around a stoma. Signs of a hernia may be a bulge in the skin around the stoma. Prolapse of the colon (the bowel pushes itself out through the stoma) can also occur.

Severe skin problems

In order for the pouch to stick well, the skin around the areas needs to be dry and smooth, if the skin is moist; the pouch is more likely to leak. Large areas of skin that are red, sore, and weeping (always wet) will keep your child from getting a good seal around the stoma. It is important to treat minor irritations right away. If your child has a large irritated area, contact your surgeon’s office, they may prescribe medicine to help dry out and heal your skin. Common causes of skin problems include:
  • Leaking from the pouch- this can make the skin around the area red and weepy, proper measurement to fit the pouch correctly can avoid leakage. 
  • Allergies to skin barriers- this can cause the skin to burn, itch or sting. A new barrier or different pouch device may be needed. 
  • Skin infections- moisture under the pouch can make the skin red and itchy. This can make infections such as yeast more likely.

Constipation, loose stools, and diarrhea

Children do not have to eat a special diet because of their ostomy. Most foods chewed well and eaten slowly will not give your child a problem unless there was a problem prior to the ostomy being placed. Constipation is often the result of an unbalanced diet or not drinking enough liquids. Certain medicines may also be the cause. If you have had constipation problems in the past, before surgery, remember how you solved them and try the same things now. But DO NOT use laxatives without talking to your doctor first.

Diarrhea is usually a warning that something is not right. Diarrhea is defined as frequent, loose, or watery bowel movements in greater amounts than usual. Diarrhea is different from loose bowel movements. Loose stools are common in transverse and ascending colostomies. This is because of the shortened length of the colon and is not a sign of sickness or disease. Certain foods or drinks may cause diarrhea. If this happens, you should try to figure out what these foods are and you’re your child avoid them.

Talk with your child’s surgeon if they are having ongoing diarrhea or constipation. Discuss the foods and liquids they are taking in, and their eating schedule, how much they usually eat, and any medicines they might be taking. Your child may be given medicine to help slow things down or to stimulate the bowel. Remember, no matter what, you need a well-balanced diet and good fluid intake to have a good output.

Blockage (obstruction)

If your child is complaining of cramps, vomiting and/or nausea, belly swelling, stoma swelling, or if you observe little to no output, or gas from their stoma the intestine could be blocked (the medical word is obstructed). Call your surgeon right away if this happens.

There are some things you can do to help your child move things through your colostomy.
  • Drink enough fluids. 
  • Watch for swelling of the stoma and adjust the opening of the pouch 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.
High-residue foods (foods high in fiber) such as Chinese vegetables, 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).

Phantom rectum

Phantom rectum is much like the "phantom limb" of amputees who feel as if their removed limb is still there. It is normal for your child to have the urge to move their bowels the way they did before surgery.  The feeling may occur because the nerves that were cut during the surgery may still send messages to the brain. This feeling may go away once you have fully healed after the surgery.

When should I call the doctor?

  • Cramps lasting more than 2 or 3 hours
  • Continuous nausea or vomiting
  • Bad or unusual odor lasting more than a week ( This may be a sign of infection.)
  • Unusual change in your stoma size or color
  • Blockage at the stoma (obstruction) and/or the inner part of the stoma coming out (prolapse)
  • A lot of bleeding from the stoma opening (or a moderate amount in the pouch that you notice several times when emptying it)
  • Injury to the stoma
  • A cut in the stoma
  • Continuous bleeding where the stoma mets the skin
  • Worsening skin irritation
  • Watery output lasting more than 5 or 6 hours
  • Anything unusual going on with your ostomy