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Feeding Tubes and Ehlers-Danlos Syndromes

Gastrointestinal involvement is a common comorbidity of Ehlers-Danlos Syndromes (EDS) and is predominantly caused by Dysautonomia (dysfunction of the autonomic nervous system) and tissue laxity.

The autonomic nervous system (ANS) is responsible for all unconscious processes that occur in your body including peristalsis, the involuntary contraction and relaxation of the muscles in the digestive tract, which propel contents throughout the digestive system. When an individual develops dysautonomia, these involuntary bodily functions cease working properly.

Gastroparesis (partial paralysis of the stomach) or delayed gastric emptying is a condition that affects the normal spontaneous contraction (motility) of stomach muscles. Normally, strong muscular contractions (peristalsis) propels food down your digestive tract. But, if you have gastroparesis, your stomach's motility is slowed down or doesn't work at all, preventing your stomach from emptying properly.

Gastroparesis interferes with normal digestion, and may cause nausea, vomiting and abdominal pain. It can also cause problems with blood sugar levels and nutrition.

Although there's no cure for gastroparesis, changes to your diet, along with lifestyle changes and medication, can offer some relief.

In patients who do not respond to the above interventions, such as a feeding tube may be placed. Feeding tubes administer enteral feeds, a method of providing nutrients directly into the gastrointestinal tract. Enteral feeds are a form of liquid nourishment that are delivered into your body through a flexible tube. The nutrients within the tube feeding formula are carefully chosen by a registered dietician to provide the patient’s body with the nutritional requirements it needs to thrive.

Typically in patients with severe gastroparesis, enteral feeds directly into the stomach are poorly tolerated due to paralysis of the stomach. In patients like this jejunal feeding (feeding into the middle part of the small intestine) is better tolerated.

Jejunal feeds can be administered via the following routes:

Nasojejunal tubes (NJ tubes)

Thin soft tube passed through a patient’s nose, down the back of the throat, through the oesophagus, stomach and pyloric sphincter into the jejunum.

Percutaneous Endoscopic Gastrostomy-Jejunostomy (PEG-J)

PEG device inserted as a primary device when no previous gastrostomy exists. The Jejunal extension is then inserted through the middle of the PEG.

Gastrojejunal tube (G-J)

A low profile balloon device inserted through an existing gastrostomy by interventional radiology which extends to the jejunum. It contains two entry points (ports) - a gastric port which opens into the stomach, and jejunal port which opens into the jejunum

Percutaneous Endoscopic Jejunostomy (PEJ)

A feeding tube which is inserted through the abdominal wall directly into the small intestine (jejunum)

In cases where patients are unable to maintain adequate nutrition via feeding tubes to the gastrointestinal system they may need Parenteral Nutrition (PN) which either makes up their full daily nutritional requirements (Total Parenteral Nutrition - TPN) or if it's for part of their daily needs Partial Parenteral Nutrition PPN) which is sometimes used in conjunction with oral intake and/or GI tube feeds. Parenteral Nutrition is made up in sterile conditions and contains the basic ingredients for nutrition based on their needs, which is obtained intravenously with a type of central line through a large vein going to the heart. There are risks with PN as strictly sterile protocol is required when dealing with the central line, as it's going through a major vein into the heart which carries infections risks. Regular monitoring of the patient and the PN solution is required as will as skin care.

Three people in white sterile suits face three white medical units holding bags of fluids in a hospital.
Sterile conditions required to make up TPN solutions

This info was provided today by a patient with Ehlers-Danlos Syndrome and feeding tubes - you can read her story in our blogs.

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