Center for Advanced Intestinal Rehabilitation Patient Resources

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Nutritional management

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
  • Enteral nutrition
  • Transition to food
  • Total adaption

Parental Nutrition

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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

  • begins vomiting

  • 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

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Enteral Nutrition

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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.

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Transition To Food

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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.

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Total Adaption

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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.

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Pharmacies

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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.

Pharmacy Location Phone Number
Acton Pharmacy Acton 978-263-3901
County Square Pharmacy Attleboro 508-222-7620
Pelham Health Care Services Brookline 617-739-2266
J.E. Pierce Pharmacy Brookline 617-566-4080
Skendarian Apothecary Cambridge 617-354-5600
Margolis Pharmacy Chelsea 617-884-3524
deVillers Pharmacy Fall River 508-679-1944
Family Pharmacy Gardner 978-632-4533
Apothecare Hyannis 508-775-9254
Shan Lor Drug Malden 781-324-0400
Conlin's Pharmacy Methuen 978-552-1750
Birds Hill Pharmacy Needham 781-449-0550
Heights Pharmacy Needham 781-444-2688
PharmaHealth Pharmacy New Bedford 508-996-3778
Nassif's Professional Pharmacy North Adams 413-663-3711
Tremont Pharmacy Peabody 978-531-1853
Blackwood Pharmacy Quincy 617-471-3300
Sullivan's Pharmacy Roslindale 617-323-6544
Spring Street Drug Springfield 413-736-0351
Medical Pharmacy & Supply Stoughton 781-344-2311
Village Pharmacy Waltham 781-890-8998
Johnson Drug Waltham 781-893-3870
Westminster Pharmacy Westminster 978-874-5812
Duval's Pharmacy Whitman 781-447-0806

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Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

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This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

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Contact the Center for Advanced Intestinal Rehabilitation

  • 1-617-355-5275
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
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