Learning to adjust to home enteral nutrition (HEN) can take time. However, there are numerous ways to begin the process of living life as fully as possible with HEN.
Acknowledge the ups and downs. Some days will be harder than others, but they’re not here to last. Consider keeping a journal to chart how you feel on a given day, and then refer back to the “good days” when things are harder. When possible, focus on solutions that promote wellness instead of problems.
Be prepared for, but not resigned to, low days. Expect that you’ll have down days, and be prepared with a list of activities or solutions that you know can lift your mood at these times.
Put your health first. Your physical health is the most important foundation to living a quality life, so learn to pay attention to your body’s messages that it may be time to slow down, rest, or replenish. This also means getting adequate nutrition and hydration, and to trust symptoms that may point to depletion, or a need for a regimen change, such as nausea, constipation or diarrhea.
Seek support. Turn to family, friends, or peers who are also living with HEN. The UDA recommends you think of managing HEN as a kind of team sport, like football. All “players” have to learn the right skills to work together, and to develop new strategies when challenges come your way. You don’t have to do it alone. Help your family and friends work with you to allow you the most independence, as well, by assuming responsibility for as many aspects of your HEN care as you can.
When necessary, seek a specialist. The challenges of HEN don’t start and stop with the body; you may experience mood and emotional challenges. Remember to seek support from a specialist for whatever issues you’re experiencing—it could be a psychologist if your mood or body image is affected; a nurse who can help with insertion site issues; or a dietitian who can support your nutritional needs.
Empower with information. The Oley Foundation suggests that patients find fulfillment and empowerment through education and videos about your unique diagnosis/condition through resources such as their website, as well as libraries, online forums for those living with HEN and other advocacy resources. This could also mean seeking out new and innovative equipment and treatments, as medical products change and improve frequently.
Are you using HEN? What is a big challenge you’ve learned to overcome? Let us know on Facebook!