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Treatment for short-bowel syndrome consists primarily of nutritional management aimed at helping the remaining intestines adapt and take on the absorption functions that were lost. The treatment is usually divided into four stages:
Parenteral nutrition (PN) is a way of providing nutrition intravenously when a patient cannot take food by mouth or by enteral feeding. The nutrients that the body needs to grow and develop bypass the normal digestive system and enter the patient directly through a thin tube inserted into a vein.
Most children requiring PN have the solution infused over 12-24 hours on a daily basis. If PN is required for longer term support, the infusion time is shortened as tolerated, on a gradual basis.
Complications at this stage are usually related to the imbalance of electrolytes and possibly infection resulting from the use of a central vein access catheter into the blood.
What is in my child's PN solution?
Your child's PN may include a combination of carbohydrates (for energy), proteins (for muscle strength), lipids (fat), electrolytes, vitamins, and trace elements.
Even though PN often includes lipids, it will not make your child fat. Everyone needs calories, protein, and fat, in addition to other substances, to stay healthy.
Electrolytes include sodium, potassium, chloride, phosphate, calcium, and magnesium. They are important for maintaining almost every organ in your body, and help your heart, muscles, and nerves to work properly.
Vitamins include: A, D, E, K, thiamine, riboflavin, niacin, pyridoxine, pantothenic acid, biotin, folic acid, and cyanocobalamin.
Trace elements include zinc, copper, manganese, and chromium.
When should I call my child's nurse?
Call if your child:
experiences fevers or chills
has stomach pain
has difficulty breathing
has tingling in the hands or feet
has increased urination
experiences muscle weakness, twitching, or cramps
has swelling of the hands, feet, or legs
experiences increased thirst
your child's catheter site is warm, tender, or there is redness or swelling
experiences pain around the injection site
Often referred to as tube feeding, enteral nutrition (EN) is an alternative to parenteral nutrition for patients with a functional GI tract, but for whom regular oral feeding is limited or inadequate or poorly tolerated.
Patients on enteral therapy have a tube placed into the functioning portion of their digestive system. They may have a gastrostomy tube ("G-Tube") passed through an opening into the stomach, or a jejunostomy tube ("J-Tube") that is passed through an opening into a portion of the small intestine.
In this stage, the patient is weaned from parenteral or enteral nutrition and transitions slowly to oral feedings that consist of a nutritional formula. The solution consists of a basic diet which is easy for the gut to digest. The complexity and quantity of the diet is gradually increased to allow the gut to slowly adapt.
"Oral aversion," -- that is, the patient's reluctant to put food in their mouth -- may be of concern at initiation of oral feedings. The condition is not uncommon in children who have had digestive disorders.
During this stage, the patient could be weaned to complete oral feeding with regular food. All stages require close management by your child's physician since complications of malabsorption may appear at any time.
Many patients with short bowel syndrome often require medications that must be specially compounded. The following chart lists area pharmacies that are familiar with the products that our patients require. Inclusion on this list does not mean that the quality of their services has been endorsed by Boston Children's Hospital.
We can also provide your local pharmacy with the formulations and ordering information for these products. Please have your local pharmacist contact the Pharmacy at Children's Hospital at 617-355-6803.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”