Total Parenteral Nutrition or Tube Feeding can be normal parts of life with SBS
Some patients with SBS may need parenteral nutrition or tube feeding. Nutrition support can be a significant lifestyle adjustment.
Life-sustaining nutritional support
The primary SBS healthcare goal is making sure you absorb the proper amount of nutrition and fluid. After discussing with a doctor, achieving proper nutrition and fluids can include eating, drinking, receiving IV nutrition and/or fluids and tube feeding.
Be sure to talk to your doctor about what would be best for you.
Tube feeding, also known as enteral nutrition or EN, delivers nutrients through a feeding tube directly into your stomach or small bowel for those with a partially functioning GI tract. The feeding tubes are passed through the nose, mouth or skin on your abdomen.
Tube feeding helps stimulate your digestive process and provides nutrients at a much slower rate than food taken orally. It can help maintain or improve the absorption power of your remaining bowel, potentially offering enough nutrients and fluid to avoid the use of total parenteral nutrition.
Total Parenteral Nutrition
Total parenteral nutrition (TPN), or total intravenous nutrition, is liquid food delivered through a catheter linked directly to your bloodstream through a large vein in your chest or arm. TPN bypasses your stomach and small intestine to deliver nutrients straight into your blood.
With proteins, carbohydrates, fats, vitamins and minerals, TPN is customized to your specific nutrition needs.
TPN is a common management strategy for the first few weeks or months after surgery but is also commonly used on a long-term basis.
You can receive TPN in a hospital or be trained to administer it at home. When taken at home, some refer to TPN as HPN, which is short for “home parenteral nutrition".
Remember to always talk to your doctor before adjusting your healthcare routine.
For decades, Parenteral Nutrition has been the standard in SBS treatment.
The Physical Challenges of Tube Feeding and TPN
Going from eating and drinking to tube-feeding or TPN can be a difficult and uncomfortable adjustment for your body with a variety of possible complications.
Learning how to sleep, use the bathroom and have sex while hooked up to your equipment can also be trying.
Getting the hang of all of your new medical equipment takes time. Dealing with clogged tubing or managing the pump can pose additional challenges.
You may experience painful irritation at the site of your tube or PICC line (catheter) or skin irritation at the insertion site. Tubes can leak, and bulky tubing can make dressing difficult or show through your clothes.
While these adjustments are difficult to go through, know that you are not alone and many others are going through the same challenges. It can even be helpful to reach out to these people through support groups and foundations.
For more information about these adjustments, utilize the Oley Foundation for helpful resources and always reach out to your doctor with your questions and concerns.
The video below features Kevin, a patient with SBS, describing his personal experience with TPN.
The Emotional and Social Challenges of tube feeding and TPN
There are more than physical challenges that come with tube feeding or parenteral nutrition.
Unfortunately, you may experience emotional and/or social challenges, as well, but know that there are resources available to help you. You can and should reach out to your doctor about these challenges.
There are social adjustments that come with tube feeding and TPN. Since most people don’t know much about it, people may make presumptions about you when you are out in public. Your equipment may draw attention and comments. Be aware that people may look at or question you about your equipment when you are out and about. But, know you’re not alone and that there are resources, such as support groups, that can help.
Sometimes, the unpleasant physical changes that come from tube feeding and TPN can create a poor self-image and send people on an emotional roller coaster. Talk to your doctor if you have any of these concerns.
Your sex life may also be affected by your tube feeding and TPN. If you're single, you may find that dating feels more complicated. You and your partner may be less interested in being intimate or having sex. Either way, a decline in intimacy can be an embarrassing and delicate issue.
For many on tube feeding and TPN, it takes a lot of work to keep sexuality alive. Often, this means a frank discussion about it with your partner or planning out the logistics of how and when to be intimate.
Though doctors may not bring up sexual issues, their support can make a big difference.
Kevin, a patient living with SBS
Regardless of what challenges you face, it’s important to seek out help and support when you need it.
Having the necessary support from family, friends or caregivers can be enormously helpful. Reaching out online to others in a similar situation can offer a sense of support, as well. Remember to always talk to your doctor about any challenges you’re facing.
With support, it may be easier to get back on track when something goes awry. You may also discover that your condition can help build stronger relationships.
Depending on your needs, you may need help from healthcare professionals. Talk to your doctor about your concerns and challenges, and he/she may refer you to specialists like psychologists, enterostomal therapy nurses, dietitians, etc., depending on your specific needs.
Utilize the Oley Foundation’s My Home Parenteral Nutrition (My HPN) Resource
My HPN is an online educational tool that provides strategies and resources to become more active in your healthcare. You can find it online by visting Oley.org and searching for "My HPN" on that site.
Learning more about your condition and therapy can also give you a sense of empowerment and help you speak more knowledgeably with your healthcare team. The Oley Foundation and American Society for Parenteral and Enteral Nutrition (ASPEN) offer many resources for those living on TPN and tube feeding (EN).
And, as always, talk with your doctor and healthcare team about all your concerns and experiences. Together, you can build a plan of action that can help all members of your support system.