How to Manage Your Feeding Tube

You will work with your cystic fibrosis care team to make a schedule that works best for you, whether that is between meals, all day or overnight.

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Your CF care team can direct the kind of tube placement you may need, assist you with equipment and teach you how to care for your tube. Your dietitian will help you find the correct formula, calorie level and schedule for you. Your CF social worker can help answer insurance questions and discuss your feelings about this process.

How Does This Work?

Some feedings can be delivered with a pump, a hanging bag or a large syringe. Overnight feeding can range anywhere from 6 to 12 hours each night.  

You will need to take pancreatic enzymes with your tube feeding to help you absorb the protein, fat, vitamins, and minerals in the formula.
Your dietitian will discuss with you the best way to take your enzymes. The main goal is to prevent malabsorption (oily, multiple, light-colored stools) and promote weight gain.

VIDEOS: Watch “Own Your Feeding Tube With Gunnar Esiason: Episode 1” to see how he manages his tube feeding.

Watch Jordan Scott manage her tube feeding.

What Problems May I Run Into?

With any new therapy, concerns may come up. Your CF care team can assist you with the equipment and help you find ways to overcome issues. Here are some common problems and solutions.

Nausea and Vomiting

Possible causes:

  • Medications
  • Something is blocking the intestine
  • Tube is not positioned correctly
  • Tube feeding formula, rate or amount may not be ideal

What to do:

  • Reduce the rate of tube feeding
  • Space the tube feedings further apart
  • Postpone feedings until nausea subsides
  • Leave tube open to drain if nauseous
  • Call your health care professional if nausea and vomiting prevent you from getting your full feedings for more than a day 

Constipation

Possible causes:

  • Inadequate fluid intake or skipping feedings
  • Physical inactivity
  • Not enough fiber
  • Medications
  • Missing enzymes

What to do:

  • Check that you are taking the prescribed amounts of tube feeding formula and water flushes
  • Do not skip feedings
  • Walk or do some other exercise
  • Try ½ cup prune juice flushed with ½ cup water down the tube once or twice a day
  • Call your health care professional if you are constipated for more than three days

Diarrhea

Possible causes:

  • Tube feeding rate too fast (especially if you have a J-tube or small bowel tube)
  • Not enough pancreatic enzymes
  • Tube is not positioned correctly
  • Lack of fiber in diet/tube feeding
  • Medications
  • Bacterial contamination of feedings, virus or infection

What to do:

  • Decrease tube feeding rate
  • Increase water flushes by 2-3 cups per day to replace fluid loss
  • Keep unused, opened formula covered in refrigerator for only 24 hours; discard if not used
  • Use clean techniques for storing and giving feeding
  • Discontinue use of laxatives or stool softeners
  • Call your health care professional if you have diarrhea more than six times in a day

Clogged Tube

The tube should flush with some resistance, but you should be able to give feedings, water flushes and dissolved medicines without difficulty.

Possible causes:

  • Old tube (more than 2 years old)
  • Small diameter or overly long tube
  • Not flushing the tube after feedings or medications
  • Not dissolving medications well
  • Not flushing the tube after checking residuals

What to do:

  • Push 30 mL of warm water through the tube using a pumping motion with the syringe (may need to do this 3-5 times before clog begins to move)
  • Try to move the contents of the tube by pulling and pushing the syringe barrel several times.
  • Pump air through the tube using the syringe (may need to do 3-5 times)
  • Use small amounts of carbonated beverages to unclog the tube; however, speak with your dietitian or health care professional before using products other than warm water
  • Call your health care professional if none of the above works

Prevention tips:

  • Replace old tubes as directed by your doctor
  • Flush with at least 60 mL of warm water after feedings and medications
  • Do not put any solids or foods through your tube
  • If your feedings begin to run in slower, irrigate the tube with water more often

Skin Irritation Around the Tube

If the area is red and sore, clean it with soap and warm water. Rinse around the area with plain water and pat dry.

If any areas appear crusty, gently soak or scrub them with soap and warm water on the skin and tube itself. If you prefer, you may use a solution of ½ hydrogen peroxide and ½ water applied with a cotton swab to help clean these areas. After cleaning, rinse with plain water and pat dry.

Feeling Full in the Morning -- Unable to Eat Breakfast

What to do:

  • Wait about 2 hours after you stop your tube feed before eating breakfast
  • Slow down the rate and start the tube feedings earlier in the evening, lengthening the time of the feedings

How Quickly Will I Gain Weight?

You will work with your CF dietitian to set calorie and weight goals. These should be based on your daily schedule and your overall health goals.

Unfortunately, when you lose weight you may be losing muscle along with body fat. Safe weight gain should include muscle gain, not just body fat gain. You should continue to exercise to maintain your muscles.

To make sure you gain and don't lose weight, continue to eat your regular meals. If you find that tube feeding is making you full and that you are not able to eat your meals, talk to your CF dietitian about coming up with a new plan.

Will Insurance Pay for It?

Working with your CF care team and knowing what your health insurance plan will cover are both key. Some insurance companies cover the equipment that is needed but not the formula. This will need to be taken into consideration as you are deciding whether a feeding tube is right for you.

If you have questions about accessing or affording tube feeding supplies, CF Foundation Compass may be able to help. Also, talk to your CF dietitian and social worker who may be able to help you find supplies for free or at a reduced cost. To contact Compass, call 844-COMPASS (844-266-7277) Monday through Friday, 9 a.m. until 7 p.m. ET, or email compass@cff.org.

How Can My Family and Friends Help Me?

Education for your family and friends on the entire process will help you become successful. When others understand why you are making this decision, it will be easier for them to help. Your CF care team will educate anyone who is instrumental in your care.

You can tell your family and friends that tube feeding is not a sign of failure but rather a tool to help fight this disease.

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