Adult Tube Feeding

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Guide to ADULT TUBE FEEDING

Parents’ Practical Guide to Pediatric Tube Feeding | XX Contents

Introduction 3

Finding Community Support 4

Understanding the Tube Feeding System 6

Monitoring Your Response to Tube Feeding 8

Taking Charge of Your Doctor Visits 18

Tube Feeding Monitoring Checklist 20

Medication Record 28

Notes 30

Glossary 32

Guide to Adult Tube Feeding | 1 Introduction

We know that tube feeding brings major changes to your life. But you don’t have to face them alone. We hope you find this guide a useful, practical resource that can help you tube feed successfully at home.

You’ll find step-by-step instructions on handling issues you face every day, from coping with infections to preparing for a doctor’s appointment. The guide includes worksheets (P. 20-31) that make it simple to record important information about your progress. We’ve also added a helpful glossary (P. 32-34) that you can refer to if you come across any unfamiliar terms.

While technical and medical support form the foundation of tube-feeding success, we believe that emotional support is just as important. Hopefully, you’ll find resources in this guide that make your journey easier.

Guide to Adult Tube Feeding | 3 Finding Community Support

With support and guidance, you can take control of the tube-feeding process and adjust successfully to this new lifestyle change. Visit the link below to find educational resources, support groups and the opportunity to connect with others in your situation.

The Oley Foundation The Oley Foundation is a nonprofit organization for people who depend on home enteral (tube) feeding or parenteral (intravenous) feeding. Resources include:

n Access to a network of individuals n Bi-monthly newsletter and caregivers who are involved in n Equipment and supply exchange tube feeding at home n Annual conference for patients, n Education and troubleshooting family members and caregivers materials

www.oley.org

The Handbook for Successful Tube Feeding | 5

4 Understanding the Tube Feeding System

A tube feeding system has a lot of parts and pieces. This diagram can help you see how they all work together.

Feeding bag

Pouring formula into feeding

Connecting feeding bag tubing to feeding port Drip chamber

Enteral feeding pump

Rotor

6 Guide to Adult Tube Feeding | 7 Monitoring Your Response to Tube Feeding Feeding Intolerance It is important to monitor and document the presence (or absence) of symptoms Look for: By keeping records of your response The Tube Feeding Monitoring Checklist associated with intolerance, as it can lead to tube feeding, you provide accurate (P. 20-27) is an easy way to track signs and n Nausea to complications such as dehydration. information for your doctor – and save symptoms that can provide information n Vomiting yourself time. When you write things down important to your health. The Medication Typically, patients experiencing n Diarrhea right away, you don’t have to spend time Record (P. 28-29) allows you to monitor intolerance to tube feeding will have later trying to recall important details your medication schedule. Sharing these more than one of these symptoms. n Bloating when they’re no longer fresh in your mind. records with your physician can help him n Constipation or her identify and address any issues that When you show signs associated n Abdominal discomfort may arise. with intolerance, it is important to determine whether the intolerance is related to the formula or something else. Please inform your doctor if you suspect you are experiencing any symptoms of intolerance.

Medication Record

Tube Feeding Monitoring Checklist

8 Guide to Adult Tube Feeding | 9 Causes of Intolerance Symptoms Nausea, Vomiting and Abdominal Discomfort n The stomach, esophagus or intestine may • Small bowel (jejunal feeding or J-Tube Possible Causes Prevention and Treatment not be working properly due to one of feeding) should be given with a Not tolerating the formula • Work with your health care provider to these issues: feeding pump at a controlled rate. determine cause and talk to your doctor • Infection n about switching to a tolerance formula. • Delayed gastric emptying Formula is the wrong temperature. Taking formula out of the refrigerator Formula may be going in too fast • Begin at a slow rate. • Malabsorption and administering it before it has had • Maldigestion • Increase the rate and amount gradually time to rise to room temperature can over 24-48 hours. n Type of formula doesn’t meet the lead to abdominal cramping and other Formula may be spoiled or contaminated • Wash and dry your hands prior to preparing patient’s needs. intolerance-related symptoms. during preparation a feeding or touching the feeding tube. n Formula is spoiled from contamination n Medication side effects. • Avoid touching any part of the feeding tube during preparation, storage or Many medications in liquid form contain system that will come in contact with the administration. sorbitol, a sugar alcohol that can cause formula. n Formula is going in too fast. diarrhea in some patients. In addition, • Record date and time on can after it is • When you are new to tube feeding, medications can also interact with each opened and store covered in the refrig- feedings should be started and other, leading to GI symptoms. erator. advanced at a slow rate. This allows n • Discard unused formula after 48 hours or as your GI tract to adjust to the formula Patient is lying flat while receiving tube recommended by formula manufacturer. and method of delivery. feeding.

• Bolus feeding should be reserved n Volume of formula is too large. Incorrect patient position during • Confirm tube placement prior to feeding for those tube feeders that have and after feeding if recommended by your health care demonstrated tolerance to a provider. continuous method of feeding. • Elevate your head 30 degrees or more by propping yourself up in bed or on a couch. • Keep your body in a raised position for at Your head should be least one hour after feeding. raised 30 degrees Stomach, esophagus or intestine not • The doctor may need to do an examination or more while tube working properly or other tests. feeding. Medication side effects • Ask the doctor if an alternative medication is available. • Sometimes switching to another form of the medication (i.e. from liquid to pill) can help alleviate side effects.

10 Guide to Adult Tube Feeding | 11 Diarrhea Tube Site Complications Possible Causes Prevention and Treatment Prevention and early intervention Medication side effects • Ask the doctor about substitute are key to decreasing the risk of medications. complications associated with the • Diarrhea can be worsened by antibiotics feeding tube site. (For comparison, or by medications containing sorbitol, here is a healthy stoma located right.) magnesium or phosphorus. Tube site complications can include: Not tolerating the formula • It is possible for a patient to be intolerant of a formula. A healthy stoma site n Hypergranulation Tissue • For these patients, it may be necessary to Thick, red, raised tissue that can form switch to a different formula. around the feeding tube where it enters Healthy Stoma Site • Switching to a fiber-containing formula the body. The tube site will be red and Look for: may bleed easily. In some cases, a clear can sometimes help alleviate the n Stoma pink in color, no or cloudy discharge may be present. This diarrhea. redness or drainage discharge can lead to breakdown of the Malabsorption, maldigestion or You may benefit from a formula that contains skin at the tube site. n No rash, ulcers or swelling in the impaired GI function specialized ingredients to support absorption surrounding skin and tolerance. n Wound Infections These infections can occur with all types of n No inflammation or excess skin at abdominal feeding tubes. Infection usually stoma site Bloating and Constipation is limited to the skin and subcutaneous tissue, although more severe infections n Leakage Around G-Tube can occur. The two primary types of wound Possible Causes Prevention and Treatment Drainage of any type of liquid around infections are Candidiasis and Peristomal Not taking enough liquids or fiber • Ask the doctor how much extra water you the exit site of the tube places the infections. should be taking in each day. patient at risk for skin breakdown and • Candidiasis is an infection of the skin infection. Leakage is considered a • If the current formula does not contain surface caused by yeast. It can be symptom of an underlying problem such fiber, discuss changing to a fiber-containing identified by redness; skin breakdown; as: formula with the doctor. small, inflamed, pus-filled, blister-type • Inward or outward movement Medication side effects • Ask the doctor if any of your lesions and a burning sensation at the of the tube medications could be causing entrance site. constipation. • Tube tract enlargement • Peristomal infections invade • Pain meds, iron and anti-diarrheals the tissue surrounding the tube. • Bolus feeding or overfeeding are common medications that can Identifying features of this type of • Balloon deflation contribute to the development of infection include redness, tenderness, Types of discharge from around the constipation. swelling and firmness at the site, tube site can include: gastric content; • Ask if there is an alternative medication pus-filled drainage from the site and semi-thick, red drainage; tube feeding that may have fewer side effects. possible fever. formula; medications or air.

12 Guide to Adult Tube Feeding | 13 Hypergranulation Tissue Tube Site Infections

Causes Prevention and Treatment Causes Prevention and Treatment Trapped moisture • Keep skin around the tube dry. Clean Germs normally found on the skin can • Wash hands before preparing and site with soap and water or non-toxic cause infection when the immune system administering tube feeding and before skin cleanser. Tube causes a foreign body reaction, is compromised. performing tube site care. resulting in rapid development of thick, • No dressing is necessary unless directed • Prevent the tube from accidental red tissue by your physician. Displacement of the tube removal by making sure that the • Protect skin with a waterproof ointment external skin disk is placed properly – Excessive tube movement when drainage is present. close to the skin. • Ask the doctor if he or she feels that the • Verify tube placement using method granulation tissue needs to be reduced. recommended by your physician. If • Minimize tube movement by making sure tube is out of place, notify physician to skin disk is placed properly close to the receive additional instructions. skin. • Do not feed through a feeding tube if you suspect a peristomal wound infection. This could spread or worsen infection. Contact your physician to determine if systemic Look for: antibiotics should be given. n Thick, red, raised tissue around the stoma site

n Bleeding at the tube site Look for: n Clear or cloudy discharge n Redness n Tenderness n Swelling and firmness at the site A stoma site with hypergranulation tissue n Pus-filled drainage n Possible fever Leakage Around the G-Tube n Foul odor

Causes Prevention and Treatment An infected stoma site Inward and outward movement of the tube • Verify tube placement using method recommended by your physician. Tube tract enlargement caused by • Stabilize the feeding tube externally by excessive back-and-forth motion adjusting the external skin disk, allowing for Rapidly infusing formula via bolus slight movement of the tube. • Infuse medications and formula slowly. Balloon bumper that is defective • Monitor fluid volume of the balloon to or needs more water ensure proper inflation.

14 Guide to Adult Tube Feeding | 15 Candidiasis (Yeast Infection) Dehydration Causes Prevention and Treatment Dehydration occurs when there is an imbalance between the amount of water taken Infrequent dressing changes • Remove the cause. Preventing into the body and the amount of fluid that is lost. Dehydration means that the body moisture buildup is the most important needs more water. Patients with dehydration can exhibit a number of different signs, intervention. Prolonged skin contact with moisture (wet including: increased thirst, dry lips, dry and warm skin, rapid weight loss, weakness, dressings) • Keep area dry and open to air – a fan or fever and urine that is dark and strong-smelling. hair dryer on a cool setting may be used Susceptibility to yeast (immune- to dry the area. compromised, diabetic) • Ask your doctor if an antifungal powder Patients on antibiotic therapy Causes Prevention and Treatment or cream would be helpful. Diarrhea • Notify your health care professional if you are experiencing vomiting, fever or diarrhea that lasts longer than 24 hours. Vomiting • Record the amount of water and formula Look for: that you are taking each day and make n Redness Fever note of the color and odor of the urine.

n Skin breakdown • Ask your physician how much extra water you should be taking on a daily basis. n Small, inflamed, pus-filled blisters Excessive sweating or drooling Extra water can be given through the n Burning sensation at the feeding tube using a syringe or feeding tube site Inadequate fluid intake bag. A stoma site with yeast infection

1 Good 2 Good Look for: n Increased thirst 3 Fair n Dry lips 4 Dehydrated n Dry and warm skin 5 Dehydrated n Rapid weight loss 6 Very dehydrated n Weakness n Fever 7 Severely dehydrated n Dark, strong-smelling urine When dehydration is present, urine becomes darker and more concentrated.

16 Guide to Adult Tube Feeding | 17 During the visit: Taking Charge of Your Doctor Visits n Use your list to check off each item as it is addressed.

n Take notes so that you can refer back to them after the visit (Use the Notes During a doctor’s appointment, you have many issues to discuss in a short amount of section on P. 30-31.). time. It’s easy to forget something important and realize afterward that you didn’t get the answers you need. n Make sure that you provide details/ history of any medical conditions One way to make the most of your appointment is to think of your appointment as you have that the doctor may not be having three stages: before, during and after. Following the easy tips below at each aware of. stage can make your visit a lot less stressful – and a lot more productive. n If you can’t follow something that is said, ask the doctor to explain it in a way that you can understand.

n If the doctor suggests a treatment What to bring with you: Before the visit: that you are unsure of, communicate This booklet, which includes your: n Review information that you this and ask what other treatment have documented in your Tube Feeding options might be available. n Tube Feeding Monitoring Checklist (P. 20-27) Monitoring Checklist and Medications n If you are discussing a problem, ask Record. how long it should take to improve n Medication Record (P. 28-29) and/or resolve after starting the n Make a list of questions and concerns n prescribed treatment. Notes page (P. 30-31) that you want to discuss. n A list of questions and concerns n Ask when and how you should follow n If you are going to be discussing a up after the visit (phone call, email or that you want to discuss problem, be prepared to provide the office visit). following information: • A detailed description of the issue, including when and how it began as After the visit: well as any symptoms n If you do not see results from the • What, if anything, you have done to treatment within the expected time treat the problem frame, inform your doctor as soon • Things that have made it better as possible. or worse n Don’t hesitate to call the office if you have questions or concerns.

n Don’t be afraid to ask your doctor for a referral when a problem is not resolving or when input from a specialist might be needed.

18 Guide to Adult Tube Feeding | 19 Tube Feeding Monitoring Checklist Date: