How to Work with Your Health Care Provider
Home parenteral nutrition (HPN) allows people to not only survive, but thrive. However, it carries potential complications, and for some it can be cumbersome and limiting. While it would be great to take even one day each week off of HPN, not everyone can do that. We’d like to discuss some options that may allow you to reduce your HPN.
The first option is to visit with your nutrition support team to optimize your diet and medications. In some cases specialized surgical procedures may be appropriate. Another option is a new medication called Gattex® (NPS Pharmaceuticals).
All medical interventions involve a partnership between the consumer and the clinician. It cannot be a one-way street. So, what do you need to know and what do you need to do when starting Gattex?
- Know what the drug does and how it is administered. Gattex is an analog of GLP-2 which increases absorption in the small intestine. It is administered as a daily injection. You (the client) or your caregiver will administer this in your own home.
- This drug should be used only under the guidance and monitoring of skilled clinicians with a substantial knowledge of short bowel syndrome (SBS) and HPN.
- Be aware of the potential complications. For example, as absorption through your intestine is increased, you may start retaining more fluid. You will be able to tell by an increase in body weight, puffiness around your feet, ankles and hands, or even shortness of breath. If this occurs, call your health care provider immediately so he or she can adjust your PN volume. If there are any adverse reactions, the dose of the Gattex may have to be adjusted.
- And what about diet? Does Gattex mean you can eat whatever you want when you want it? Well, not necessarily. Many will be able to eat normally and enjoy most foods. But you may be able to maximize absorption and the Gattex therapy if you follow a diet that is based on your own special gastrointestinal anatomy (see “Dietary Management for Short Bowel Syndrome: What You Eat Does Matter” and “Dietary Recommendations for Patients with Intestinal Failure,” LifelineLetter, September/October 2008 and July/October 2004 respectively). It will be helpful to work with a knowledgeable dietitian who can assist you with food choices and monitor the process of weaning from HPN. There are many centers with experience in managing HPN and SBS that can be helpful in this process (see Oley’s Centers of Experience list).
If you haven’t worked with your nutrition support team to ensure that your HPN, diet, and medication regimen is optimal, talk with your nutrition support team members. This is always the first step. When the standard therapies have been exhausted, then it is time to consider Gattex in partnership with your health care provider.
Submitted by Laura Matarese, PhD, RD, LDN, FADA, CNSC, FASPEN; reviewed by Carol Ireton-Jones, PhD, RD, LD, CNSD, FACN.