Some people need these options due to conditions they are born with, while for many others the need arises as a disease progresses or after some types of surgeries and treatments (such as surgical removal of part of the intestines). When this occurs due to "mechanical" problems with the GI tract (such as Short Bowel Syndrome) there are many options for formula and some people are able to still use food as long as it is blenderized into a liquid first. Loss of tolerance to all (or nearly all) food is not uncommon in people with allergy-related diseases such as EGIDs (Eosinophilic Gastrointestinal Diseases) or Mast Cell Diseases. These people need to use a special kind of formula known as Elemental formula (also called "the elemental diet") which is a medical food substitute composed entirely of pre-digested, broken down nutrients so that the GI system does not need to process the formula. These formulas contain only amino acids, which are the building blocks of protein, but contain no actual protein. There is some confusion, even among specialists, that peptide-based formulas either are elemental or are appropriate substitutes for elemental formula which is generally NOT true. Peptides are strings of amino acids rather than individual amino acids and can still be allergenic. This is done because it is believed in conventional medicine that all allergens are proteins, so it makes sense to remove all protein from the diet of someone who has a severe allergic disease. In reality many people with this level of food intolerance also react to oils and other triggers that are not proteins so may not even tolerate elemental formula.
Help! G-tubes, J-tubes, TPN - Where do we begin? From MitoAction
FAQs about TPN from The Children's Hospital of Pittsburgh
Total Parenteral Nutrition (TPN) From G-Pact (Gastroparesis Patient Association)
Intravenous Feeding From the Merck Manual
Artificial Nutrition Support in Intestinal Failure: Principles and Practice of Parenteral Feeding
The Oley Foundation is the primary support and advocacy group for people who use Enteral or Parenteral nutrition (tube feeding or TPN). They have recently discontinued their toll-free numbers. Here are the new numbers to contact them:
To reach the Oley office:
Call (518) 262-5079
To access Equipment Supply Exchange Program:
Call (518) 262-2230
We typically respond to messages within two business days.
Oley 2016 Conference To Swim or Not to Swim Survey on Swimming Practice