ALS From Both Sides

Feeding Tubes for ALS

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.

A tube with a bumper in the stomach can be removed by pulling directly out. That takes a hard pull and hurts. 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 sedating the patient (twilight sleep) and putting the endoscopic tube down the throat into the stomach. The disk is clipped off and pulled back up through the throat and the feeding tube is slipped easily out of the abdominal opening.

With the first feeding tube change you can request any type or brand of tube you want. The most popular types are tubes that are held in place by a balloon in the stomach and the button type that leaves no tubing hanging out.

Changing and replacing these 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. Unlike the disk, the balloon will deteriorate over 6 months to a year and won't stay inflated, allowing the tube to slide out easily. Your doctor may prefer to change it every 6 months rather than have to do an unscheduled change if it falls out.

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 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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