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

Care of the Stoma and Feeding Tube

Stoma Care

The skin opening for the feeding tube is called a stoma. The name has nothing to do with the word "stomach" in spite of the spelling. The word stoma refers to any tunnel through the skin and underlying tissue to a place inside the body. Stoma can refer to the opening of a tracheostomy, colostomy, urostomy, and others.

Stoma Cleaning

If you are told to clean around the tube with peroxide, stop using the peroxide after about a week. It is great for breaking down dried blood and gunk and foaming it away, which is why it is commonly used after any surgery. However, continued use also breaks down the "scaffolding" of blood clotting needed for wound healing. The constant disruption of the attempts to heal cause the body to try harder by producing even more healing tissue which is called granulation tissue. This becomes chronic around the feeding tube and repeated bouts of painful, burning, bleeding granulation tissue occur. So stop using the peroxide. It is not effective for preventing infection anyway. Washing once or twice daily with soap and water will do just fine. There is no longer a need to make washing it a sterile procedure (sterile gloves, sterile water, and q-tips) by this time. Even so, care needs to be taken: Use a different washcloth than the one used for the rest of your bath. A thin, cheap or worn out washcloth gets under the bumper much better than a plush expensive one. Antibiotic soap is not necessary (and environmentally bad as it ends up in our water supply). The amount of antibiotic and the time it is on the skin is ineffective anyway. The soap itself has just as much antibacterial action. A split gauze 4x4 or 2x2 under the flange plate will catch any drainage and keep the plastic from irritating the skin. At first Bacitracin ointment should be applied with a q-tip, but can be skipped after a few weeks.

Stoma Problems

Feeding tube stomas (openings) never heal completely so you do need to watch for signs of infection. Infection doesn't usually stay just red for long. It gets increasingly sore, pus begins to drain around the tube or the skin deteriorates to a raw oozing sore. Often there is a bad odor or a fever which may be low. In case of infection a prescription ointment, not a simple over the counter like Bacitracin will be needed.

You can easily tell the difference between infection and granulation tissue. Infection will cause the entire stoma to be red and sore. Granulation appears as raw, red bulges on the stoma itself that bleed easily. Granulation tissue will shrink to nothing in a day (possibly two) by applying a dab of non-prescription hydrocortisone cream. Don't use it daily, just when the stoma has granulation tissue. Doctors are fond of using silver nitrate sticks to burn the granulation away. Ouch. You can get these for home use. There may be some reason why doctors prefer silver nitrate—they can't all be sadists—but I have never heard the reason.

The occasional brownish drainage is pretty normal, as is some dried blood or even fresh blood. Worry only if it is saturating the gauze and won't stop.

Trying a number of things may be necessary for skin problems. You can speed up the process if the red area is big enough to try one thing on half and another on the other. If the redness is irritation from the gauze, Vaseline will help. If it is itchy too, try a cream made for athletes foot. Cortisone is great for granulation tissue but that is usually right on the stoma, not the skin. Cortisone is soothing for other causes even if not a cure. Mylanta or a paste made from crushed Rolaids and water will neutralize any leaking stomach acid. A diaper rash ointment is a good moisture barrier. And sometimes nothing but a bare belly exposed to the air works, especially with sunshine.

Tubing Care

When you get the first tube and with each change, ask to keep the package the tube came in. This will help with replacement of the same type and size of tube if it should come out. Write date on the package.

When you first get a feeding tube, have one replaced, or slide the bumper back, make a note of the position of the bumper on the numbers along the tube for comparison if problems occur. Write this on the package too.

When your feeding tube is first placed or replaced or with any abdominal pain, checking to make certain that the tip is in the stomach is critical. Running tube feeding into the abdomen rather than the stomach causes severe complications. So, with the first feedings, you will be taught to check tube placement before feeding. Any pain during these checks beyond the discomfort of having the tube moved around, indicates trouble requiring a call to the doctor. The pain will be bad and there will be little doubt there is a problem.

The only better check is an X-ray. This will probably be done if when you have are having the tube replaced but certainly isn't necessary before every feeding.

How long do you have to keep doing this song and dance every time you use the feeding tube? No one will give you a straight answer to that! My best answer is until you have done it enough times without any sign of trouble that you are comfortable skipping it. Or when you are just tired of doing it over and over. If you have home nursing care, be prepared for this ritual to go on forever. Most nurses are taught feeding tube care based on the nasogastric (through the nose and down to the stomach) type of feeding tubes that are far more common in hospitals than feeding tubes. Nasogastric tubes can easily be tugged up out of the stomach by a patient or even cough/gagged upward. If that happens there is a real risk that a feeding will end up in the lungs. Bad thing. So, nurses with hospital experience have the need for ongoing tube placement checks burned into their brains and this may follow them into home care even though feeding tubes aren't as problem prone as nasogastric tubes. Once in, a feeding tube isn't going to go anywhere unless it is pulled hard. If that should happen, of course, you will want to check placement before using it again.

The Number One rule for caring for a feeding tube is to flush it with at least two ounces (60 cc's) of water every time you use it and once a day if you are not using it. Unless you do that religiously, even fanatically, the tube is going to get plugged up. To flush the tube, use the 60 cc syringe as a funnel. Don't use the plunger to push the water through, allow it to flow in by gravity. You will quickly become accustomed to the speed at which the water will flow in and can tell if the tube is gradually clogging up.

A plugged tube may have to be replaced, but usually can be unplugged if attended to promptly. If you are having problems with a newly placed tube, it probably isn't simply clogged if you have been flushing it well. This situation requires a call to the doctor. However, in a tube that has been working well, check the markings on the tube to make sure it is still in the stomach. If that checks out, try these steps:

Positioning a feeding tube in any particular direction, if at all, is a matter of choice. The lump under your shirt is certainly more apparent to you than to anyone else, but most of us feel the need to minimize it. There are tube holders you can buy but you can make one from a strip of soft fabric and Velcro. A length of Ace stretch bandage like you use for a sprained ankle works well. Taping the tube in place is not comfortable, and replacing the tape daily causes tape burns. Whichever way you do it, put a Kleenex between the tube and your skin. Maybe it is just me, but the ports on the end of the tube sometimes give me a blister.

mic-key%20buttonIf the look of the tube really bothers you, a button feeding tube can be put in at a tube change. This tube is capped at the stoma, eliminating the dangling length of tubing. The price you pay for this little vanity is that using the tube requires attaching a short length of tubing which adds steps to the feeding process, but may be worth the trouble in trade for restoring your self-image.

You may see a build up of black stuff in the tube. This is yeast, which finds the warm, wet interior of the tube to be yeast heaven. As nasty as it sounds and looks, yeast growth is harmless. Any of it that gets washed into your stomach is quickly killed by stomach enzymes and acids. Regularly cleaning your tube with pipe cleaners or feeding tube brushes keeps it from looking really bad, but the best they can do is remove some of it. Even if you were able to get the tube looking spotless again, studies have shown that yeast embeds itself invisibly in the tubing material and quickly re-grows.

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.

balloonThe 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 7or 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.

Mlc-Key feeding tubeA 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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