ALS From Both Sides, ALS Patient Care
ALS From Both Sides
Care of an ALS Patient
By Diane Huberty, Retired RN, Certified Neuro Nurse
...and ALS Patient

First Tube Replacement

A tube with a bumper in the stomach can last for many years before replacement is needed. Rubber tubes will deteriorate very slowly but the plastic ones don't seem to deteriorate. Rubber tubes will become lumpy as they deteriorate. The usual reasons for replacing the original tube are clogging problems or the annoyance of having the little tab that plugs the tube break off.


The tube is generally replaced by a typical feeding tube. These do not have the disk to hold it in place but instead, have a small balloon. These tubes generally have three ports; a large port for the feeding, a small port for medication, and a medium-sized port for air or water to fill the balloon. The balloon port doesn't have a cap but is filled using a screw in tipped syringe.

With the first feeding tube change you can request any type or brand of tube you want. Your original tube was most likely held in your stomach with a bumper (also called a disc, flange, bolster, mushroom tip). They won't fall out and would require a very hard tug to pull them out. Tubes with bumpers require less frequent changes, but because of the potential for damaging the track through the abdomen by pulling the disk out through it and the risk of bleeding, especially if the patient is on Coumadin, most physicians prefer to remove the tube endoscopically. This requires light anesthesia (twilight sleep) to put the endoscopic tube down the throat into the stomach. BiPAP may be used. The disk is clipped off and pulled back up through the throat and the feeding tube is slipped easily out of the abdominal opening.

The other type of tube has an inflatable balloon in the stomach to keep it from sliding out. Because the balloon deteriorates from stomach acids, it begins to deflate, usually at about six to nine months. When the balloon begins to deflate, the tube can be accidentally pulled out with a tug. With further deterioration of the balloon, the tube will simply slide out. If the tube comes out, it needs to be replaced within twelve hours at the very most before the track collapses and closes. That will require a new PEG or RIG procedure to reinsert it. The original stoma may be used but a new track through the abdomen and into the stomach is generally needed. Your doctor will prefer to change it every 6 months rather than have to do an unscheduled, emergency change if it falls out.

A popular tube is a low profile button tube. These are commonly Mic-Key tubes although there are other brands of low profile tubes. They are available in bumper or balloon type. This type has no tube dangling out so the risk of pulling it out is reduced. An adapter between the button and tubing or syringe for feeding is required. The adapter will make it harder for a patient with weakening hands to do his own feedings, but for most caregivers, it is just one small extra step in feeding. One big advantage for some patients is in self-image. There is no tube or clamp to show as a lump under clothing.

Changing and replacing balloon tubes is simple and painless. The balloon is deflated and the tube is pulled out with only a slight tug. The new tube is lubricated with KY gel and inserted and the balloon inflated. This can be done by a doctor, or, after the tube has been in a year or so and the track through the abdomen is well established, it can be done by a nurse or caregiver. These balloon tubes do require more frequent changes but are much easier to change, especially for patients with breathing problems but not on a full ventilator.

If the Tube Comes Out.

One sign that the balloon is shrinking and getting stiff and may fall out is an increase in drainage around the tube as the balloon shrinks and doesn't block the path around the feeding tube as well. Tube feeding formulas will leak a tannish brown gunk. There will be no pain, tenderness, redness or bleeding. The tube will also get looser and slide out further as the balloon deflates. You can baby it along for a while by pushing the tube back in and adding air to the balloon, but that quickly becomes a daily need. Take extra care not to let the tube get tugged on. Taping it down can help assure that the tube stays in until your tube change appointment but if you delay too long the balloon won't hold air at all. Then the feeding tube can fall out and you will have to have it replaced within about 6 hours—twelve is considered the outside limit—before the tract to the stomach closes off too much for easy replacement. Begin by calling the doctor who put the tube in or your Home Health Nurse if you have one. If they are not available or the nurse is not allowed to reinsert it, just go to the emergency room and they will replace it. After watching a couple of simple replacements your caregiver can do it!

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