Transitioning to adult care with a feeding tube

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Find out what needs to be done to prepare for the transition to the adult health-care system and what to expect from the new health-care team.

Key points

  • Some teens with feeding tubes will be able to manage the transition to adult care on their own, while others will need support from their parents and caregivers.
  • Most paediatric patients will transition to adult care around their 18th birthday.
  • Before transitioning, you will need to be able to manage tube and stoma care and have a primary care provider who will become your main contact and care coordinator.
  • You will meet with the G Tube Feeding Program nurses before transition to make sure you know how to change the tube, care for stoma issues, review your transition package, and have a final tube and skin assessment or tube change if needed.

Some teens with a feeding tube will be able to manage their own transition to adult care, while others will need help from their parents or caregivers.

Transitioning to the adult health care system

Most paediatric patients will transition to the adult health care system around the time they turn 18. Preparing to transition to the adult health care system starts several years before then.

To learn more about transitioning to adult care, and the differences between paediatric and adult care, please see the page "Transitioning to adult care (for teens)" or "Transitioning to adult care (for parents)".

Transitioning with a G, GJ, combination G/GJ or J tube

At SickKids, there are many knowledgeable and easily accessible health-care providers to help with your feeding tube. In the adult health-care system, this may not be the case. There is usually no adult G Tube Feeding Program and you cannot access the paediatric G Tube Feeding Program after 18 years of age. You will need to learn how to navigate the adult health-care system to get help with tube and stoma issues.

Your primary health-care provider (i.e., family physician, nurse practitioner) will be your main contact and care coordinator. It is important to engage them in tube and stoma care right away. This can be done in the following ways:

  • Discuss stoma and tube health with them at appointments​
  • Update them when there are issues with the skin or tube and share how the issue was managed or treated
  • Involve them in skin and tube issue management
  • While you are a SickKids patient, encourage your primary care provider to connect with the G Tube Feeding Program so they can ask questions about tube care and how best to support the transition to adult care

If you have a pediatrician, it will be important to find a family doctor before you turn 18 years old so that they can get to know you and your feeding tube needs.

Home care nursing, including wound care nurses, may also be accessible for complex stoma issues. Speak to your primary care provider about whether a referral for these services would be appropriate.

Changing the feeding tube

If you or your child have a balloon-style G tube, make sure you know how to change it by yourself, as this will be an expectation before and after 18 years old. Reach out to the G Tube Feeding Program if you have not yet been taught to do this.

If you or your child have a balloon-style GJ, such as a Mickey J, or a balloon-style combination G/GJ tube, you will need to access an interventional radiology (IR) department at an adult hospital for tube changes. Adult IR departments are different from paediatric departments in a few ways:

  • Adult IR departments do not typically offer sedative medications to sleep for tube exchanges.
  • Parents will not be allowed in the room during a procedure.
  • Adult IR departments may not have the same tube you had at SickKids, so it’s possible the tube may change at some point.

Your primary health-care provider or gastrointestinal (GI) specialist will manage the referral to the adult IR department.

If there is an urgent issue with the tube before you are connected to the adult IR department, you may need to go to the emergency department of the hospital. If possible, go to the emergency department of the hospital where you will be followed or where your GI specialist practices.

The AboutKidsHealth Tube Feeding Learning Hub will continue to be a resource for you and your family, with videos and helpful tricks and tips for managing your stoma and tube. Your primary care provider can also learn more about managing your stoma and tube at Academy Online.

Transition appointment

Before your or your child's 18th birthday, you will have an in person or virtual (video call) transition appointment in the G Tube Clinic with one of the G Tube Feeding Program nurses. At this appointment:

  • The tube and skin will be assessed for the last time at SickKids. Treatment will be recommended, if needed.
  • You will show the nurse how to exchange your balloon G tube.
  • If you have a GJ or combination G/GJ tube, a last tube exchange in IGT will be organized.
  • You will review your transition package, which includes helpful information and resources for both you, your family, and your primary health-care provider.
  • Prepare for this appointment by having a list of questions or concerns ready to share. It is normal to have questions or concerns that you may not want to share in front of your parent(s). Set aside some time to speak with the G Tube nurse alone. Here are some tips for talking with your health care team.

The G Tube Feeding Program nurses will send the transition package and visit note to your primary health-care provider directly after the appointment.

Last updated: March 2nd 2022