Although most patients with eosinophilic disorders do not require the use of a feeding tube, some are dependent on them for total nutrition or supplementation of a severely restricted diet. Unfortunately, as the understanding of this disease grows, the population of patients living with tubes is growing as well. Receiving the news that you or your child may require a feeding tube can provoke great anxiety.
Having a feeding tube does not necessarily alter how you live. Receiving adequate nutrition can actually improve quality of life. Certain types of tubes or feeding therapies are reserved for EGID treatment when intake is inadequate, or the GI tract is not absorbing adequate nutrients.
Remember that any decision to place a feeding tube should be made by a qualified medical specialist and is generally done when all alternative feeding therapies have been exhausted. Please review product brand and method of placement carefully with your physician and surgeon.
Methods of Feeding
Enteral feeding means the gastrointestinal (digestive) tract is used for feeding. This can be done in a number of different ways. The part of the digestive tract used for feeding depends on the underlying problem. There are a number of different ways to administer enteral feeds.
Parenteral feeding involves infusing nutrition directly into the bloodstream. This is only done if the digestive tract is unable to absorb nutrients from enteral feeds. This method of feeding requires a central intravenous line. A central line is a surgically placed, long lasting IV line that passes through a central vein (close to the heart). Hence, it bypasses the digestive system entirely. Due to the delicate nature of this type of feeding, cleanliness and other precautions are essential. Only rarely do EGID patients require total parenteral feeding (TPN). Special care and training are required to maintain the central line and administer the TPN.
Tubes Used for Enteral Feeds
|NG (Nasogastric Tube)
A flexible tube is placed via the nose, down through the esophagus into the stomach. The NG tube can be used to empty the stomach contents, or to deliver medicines or feeding formulas. This tube is generally held in place by tape adhered to the nose and cheek area. The tube may become dislodged or require replacement. This can be done by a variety of people including parents and the patient themselves.The length of time the NG tube remains in place varies greatly with why the tube was initially placed. In general, if feeds are expected to be short-term an NG tube is preferred. If long-term enteral (tube) feeds are anticipated, a gastrostomy tube (G-tube) may be recommended. Many doctors will recommend formula feeds via an NG tube prior to surgical placement of a G-tube. The amount of time the NG is kept in place before going to a more permanent feeding tube will vary between different physicians and medical centers.
|PEG (Percutaneous EndoscopicGastrostomy Tube)
An endoscopy is utilized to place this tube. A small light at the end of the endoscope marks where the tube is placed. A small disc or dome will hold the PEG in place on the inside of the stomach, and another disc (or crossbar) on the outside is used to hold the tube in place externally. From the stomach site a long tube extends outward from the body with a port (or two ports) for medicines, draining or feeding. Because the tube actually extends out from the stomach, the tube is often taped down to the outer stomach area so it is not accidentally pulled out. The PEG is sometimes placed preliminarily and then later changed to a “button” when the tract has healed.
|G-Tube (Gastrostomy Tube)
The G tube can be a tube much like a PEG or it may be a low-profile “button”. These tubes are surgically implanted or placed laparoscopically (via a small hole in the stomach wall). These tubes are held in place by a plastic bulb or water filled balloon on the inside of the stomach wall and a crossbar, clamp or disc on the exterior. If an actual tube is placed, taping it down is often recommended. Buttons are very low profile and do not require taping.
There are many different types of gastrostomy tubes. They share in common a mechanism to ‘anchor’ the tube in the stomach, by either a bolster or a balloon, and a port to use for feedings and medications. The pictures on the right are of one type of commonly used button.
Example of a gastrostomy tube: Kimberly Clark’s Mic-key button
|G-J (Gastro-Jejunostomy Tube)
A G-J tube is placed when the stomach must be bypassed for dietary reasons or dysmotility (slow stomach emptying). In this situation, a smaller tube (J) is placed through an existing gastrostomy line and clamped into place. The smaller line (longer in length) is then threaded down into the jejunum where the formula (and/or medications) are delivered. Because of the smaller size of the GJ, only liquids may pass through this form of a line. This line will have two ports, one that can deliver to the stomach, the other to bypass the stomach directly into the small intestine.
|J- (Jejunostomy) Tube
A J tube is placed when the stomach must be bypassed entirely. Often this is due to severe reflux disease, or dysmotility. The J Tube is a smaller tube that is placed in the jejunum (the second portion of the small intestine). The tube may be placed laparoscopically (through a microscope inserted through the belly button) or surgically. This tube, like the gastrostomy, may be an actual tube or a button. Only liquids may pass through the J tube.
Granulation tissue can occur with any type of tube, and is a common occurrence. Keeping the stoma site clean and dry can help minimize this problem. Some physicians may use silver nitrate to cauterize the tissue. Steroid creams may also be used, but long-term use does predispose to candida infections (fungal). A snug fitting tube that does not leak and avoiding trauma to the site will help avoid this common and recurrent problem.
Types of Enteral Feedings
Once the tube is placed, you and your medical team will determine the best method of administering the feedings. Feeding schedule may vary greatly from one individual to the next.
|Bolus or gravity feeds involve nutrition being delivered several times throughout the day over short periods of time. This may be done by gravity through a large syringe, which allows the formula to drip in, or by a pump at a higher rate.|
|Continuous feeds involve use of a feeding pump with the feedings administered slowly over the course of the day. Feedings delivered to the jejunum (J tube) are always given this way. This method of feeding may also be used when the stomach empties slowly.|
|Night feeds involve continuous feeds utilizing a pump, but only at night. This method may be used to supplement a severely restricted diet or to supplement daytime bolus feeds.|
Enteral feeds do not need to limit activity.
Portable pumps are available that can be placed in a backpack. This allows for mobility during feeds.
Tube Feeds at School
If your school -aged child has a feeding tube, advance planning with your child’s school (before the school year begins) is important. The school will need information on who will administer feeds, how often feeds will be given, what to do or whom to call if there is a problem with the pump and instructions on what to do if the tube becomes dislodged. Your physician’s office or home health company can help you provide the necessary details to the school on your child’s particular feeding system.
Choosing a Tube and Feeding Method
The type of feeding tube and method of placement are best discussed with your medical team. Some physicians have more experience with one type of procedure or another. Not all EGID patients will have the same type of tube or procedure to place it. The details of any surgical procedure should always be discussed directly with your physician.
Bolus – feeding “all at once”
Endoscopic – via an endoscopy
G-Tube – Gastrostomy Tube
Gastric, Gastro – stomach
G-J Tube – Gastro-Jejunostomy Tube
HEN – Home Enteral Nutrition.
J Tube – Jejunostomy Tube
Jejuno – jejunum, the second portion of the small intestine
Naso – nose
NG – Nasogastric Tube
-ostomy – new opening
Percutaneous – through the skin
PEJ – Percutaneous Endoscopic Jejunostomy
Stoma – The actual hole or opening in the body that the tube passes through.
TPN – Total Parenteral Nutrition
TubeFeeding: A Child’s Perspective
Below is an excerpt from a letter written by James D., a 4th grader in Birmingham, Alabama who describes the decision to eliminate all foods::
“Before I went off all food I was throwing up every day. I was sick. I felt like I had the flu every second of the day. There was chest pain that felt like a baseball hitting it when I ate anything. My stomach felt cramped. I also felt too sick to participate in life. I still felt that way when I tried steroid treatment and elimination diet.
“I helped make the decision to go off all food because l felt so bad. My doctor offered for me too drink the formula, but I couldn’t. I tried a NG tube and couldn’t stop throwing up, so I got a G tube and did not throw up anymore. All of my symptoms disappeared after I stopped eating food. I felt better and life was better because there was no pain.
“I am thankful for my mom, dad, and doctors for helping me feel better. I thank them for believing in me and encouraging me. Today I feel that my EoE is getting less prominent in my life now that my foods list is so much bigger from trialing foods.”