For Patients & Parents
Tube feeding is a life-changing experience and will affect many aspects of life, whether it’s you being tube fed or someone you’re caring for. The way you spend time with family and friends and your ability to continue work might change whilst you are being tube fed. For example, travelling, dating, taking part in the activities you enjoy, might initially be challenging and overwhelming. Support from your family and friends can make all the difference and give you confidence in adapting to your new ‘normal’.
Once you are at home and settled in your routine, it is important to continue with social activities. You will find that feeding may take some time and be a bit restrictive, however with careful planning you can fit your feeds around your social life.
You can plan holidays at home or abroad with family and friends with the support of the tube feeding provider who can help with the necessary arrangements and deliver the tube feed and equipment to your holiday destination (if applicable). Your healthcare team will provide the relevant documents to allow you to obtain travel insurance, supply fitness to fly certificates (if applicable) and give practical advice on managing tube feeding away from home. It is advisable to plan in advance to avoid disappointment and give your healthcare team and tube feeding provider plenty of notice to make arrangements.
There is no reason why you shouldn’t be able to return to work if you are well and have the approval of your healthcare team. Your healthcare team will advise on the appropriate time and support you with making specific arrangements to
accommodate your feeding routine. With portable pumps or bolus feeding you should also be able to feed while on the move.
Participating in sports will depend on your medical condition and mobility. Your doctor will provide advice on what sports you are able to take part in and which should be avoided. Physical contact sports are not recommended as there is risk of the gastrostomy or jejunostomy tube getting dislodged. You may require extra water when you are training so speak to your dietitian who will provide more guidance and adjust your tube feeding plan.
Tube feeding should not prevent you or the person you care for from being involved in a relationship with someone. You can be intimate with your partner, however adjusting to your new body image may take time and it is important to progress at a pace you feel comfortable with.
If you are a woman on tube feeding and would like to have children, it is important to discuss this with your doctor. Starting a family may require some planning and consultation to make sure you receive all the necessary nutrients needed for the baby to develop normally.
Despite the flexibility with your tube feeding regime your medical condition may cause some additional limitations and if you have any questions or concerns it is important to speak to your healthcare professional.