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An ileostomy is an artificial opening (called a stoma) in the abdomen. The third and last portion of the small bowel, called the ileum, connects to the beginning of the colon. In an ileostomy, the ileum is brought out to the surface of the abdominal wall, allowing waste to drain into a sealed pouch on the outside of the body.
In a permanent ileostomy, the entire large bowel is removed before the stoma is made. Before you leave the hospital, a nurse will teach you how to care for your child's ostomy.
Ileostomies are sometimes created as a temporary measure, to allow the intestine a chance to rest and heal after surgery, such as intestinal transplant. Surgeons may reconnect the intestine later, when it has healed. The surgeon will advise you if the ileostomy is just a temporary measure.
Stomas come in all shapes and sizes. Some are round and others are oval. It may stick out (a budded stoma) or be flat (a flush stoma). 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 each week and fit the pouch opening according to size.
Since there is no muscle around the stoma, there is no way to control when waste passes through it. The waste, in the form of a thick liquid, collects in the odor-proof pouch, which will need to be changed when it gets full.
When your clean the stoma, you may see a drop of blood as you wash it. This is normal. The stoma has many small blood vessels just like the inside of your mouth. (You may have noticed that your gums sometimes bleed slightly when you brush your teeth. That also is normal.) Do not be afraid to wash the stoma. It has no nerve endings, so it is not painful when touched. However, you should protect it from sharp objects that could cut into the stoma such as seat belts and large belt buckles.
Whether your child's ileostomy is temporary or permanent, it does require some adjustment. In the initial weeks after surgery, waste material coming through the ileostomy is liquid but then begins to thicken. A good diet with increased fluid intake is needed to keep well hydrated and nourished. Patients wear an ileostomy appliance over the ileostomy that collects the waste as it passes through the ostomy (or opening) on the abdomen. Learning to care for the ileostomy is a little tricky but with practice becomes very manageable.
People with temporary ileostomies may have the sensation of their rectum wanting to open. Occasional leakage of mucus, brown liquid, or traces of blood through the anus is normal. Good hygiene – keeping the area clean and dry, and applying a barrier cream – is the best way to handle this.
After an initial recovery period, children with ileostomies can engage in their normal activities. They should be able to wear the same clothing they wore before surgery, including swimwear. Usually there are no dietary restrictions and foods can be enjoyed as before. However, check with your doctor to see if there are any foods that need to be avoided. With a securely attached pouch, swimming, camping, and participation in just about any sport, although caution is advised in heavy body contact sports like football. The pouches are waterproof, so they can be worn in the shower or in the bath. Travel is not restricted in any way. Just remember to bring extra ostomy supplies with you, and always carry supplies with you when traveling. If you are flying, put supplies in "carry on" luggage and not with "check-in" luggage. In a car, store supplies in a cool spot and avoid the trunk and back window ledge. If you take long vacations, arrangements can be made to have supplies shipped along the way.
Those with permanent ileostomies can go on to lead basically normal lives, working at any career they choose (with the possible exception of jobs that involve very heavy lifting). Physically, the creation of an ileostomy usually does not affect sexual function. The ileostomy itself should not prevent one from dating, marriage or having children.
Learn about other Intestinal Transplant Procedures.
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