Your CF care team can help decide which type of feeding tube is right for you, help you with equipment, and teach you how to care for your tube. Your dietitian will help you find the right formula, calorie level and schedule for you. Your CF social worker can help answer insurance questions and talk with you about how you're feeling 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 take 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 talk with you about the best way to take your enzymes. The main goal is to prevent oily, multiple, light-colored stools (called malabsorption) 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?
It’s common to have questions or problems when starting tube feeding. Your CF care team can help 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 improves
- Leave tube open to drain if nauseated
- Call your health care professional if nausea and vomiting prevent you from getting your full feedings for more than a day
Constipation
Possible causes:
- Note getting enough fluids 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 (you 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 (you may need to do 3–5 times)
- Use small amounts of carbonated drinks 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 you see any crusty areas, 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, you may lose muscle along with body fat when you lose weight. Health weight gain should include building muscle, not just body fat. You should continue to exercise to maintain your muscles.
Continue to eat regular meals to make sure you gain and don't lose weight. If tube feeding makes you full and 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 Thursday, 9 a.m. until 7 p.m. ET and Friday, 9 a.m. until 5 p.m. ET., or email compass@cff.org.
How Can My Family and Friends Help Me?
Teaching your family and friends about 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 closely involved in your care.
You can tell your family and friends that tube feeding is not a failure but a tool to help fight this disease.
