PATIENT SUPPORT
COMMON CONCERNS
People with short bowel syndrome with intestinal failure (SBS-IF) are parental support (PS) due to the inability of their bowel to absorb enough nutrients from food.1
The ability to eat and drink will depend on the function of remaining bowel and this varies for different people. Factors shown in Figure 2.1
While some people with SBS-IF may tolerate small quantities of food and drink, others may have to completely avoid eating or drinking to prevent complications.1
You should consult with your healthcare professional for specific information on what you can eat or drink.
FIGURE 2
People with SBS-IF may be able to travel with home parenteral nutrition (HPN), but this should be discussed with the medical care team in advance.2
As SBS-IF is a complex disease and HPN requires strict management, it is essential that you and your healthcare professional discuss and prepare for travel appropriately.2
- Check if HPN supplies can be shipped to the destination and a refrigerator is available to store everything
- Prepare a list of medications that may be needed
- Take the right number of infusion bags for the trip
- Check if support is available via patient groups/organisations
- Ensure that there is a nearby hospital or medical centre with expertise in intestinal failure
FIGURE 3
Normally, people on HPN can have showers or baths when they are not connected to their infusion bag.1,2
Individuals on HPN should use waterproof dressings that cover the catheter exit site to prevent it getting wet and to minimise the risk of infection.1,2
Many people on PS can safely have pets. You will need to ensure that your line is always protected and that after being in contact with pets you wash your hands thoroughly.3
If the pet in question is likely to nibble/chew on anything, then it is fundamental that they never get close to the catheter or parenteral nutrition sets.3
There are important warning signs to watch out for that may indicate a catheter infection, such as a high temperature, shaking and any other cold or flu-like symptoms. If a catheter infection is suspected, medical advice must be sought as early as possible.3
Recognising an infection early is vital to improve the success of a treatment to ensure you recover as quickly as possible.3
- Parenteral nutrition: information for patients. Department of Nutrition & Dietetics. Accessed from: https://www.christie.nhs.uk/media/2620/legacymedia-2777-980.pdf. Date accessed: April 2020.
- Home Parenteral Nutrition – Frequently Asked Questions. Accessed from: https://medicalnutritionindustry.com/files/user_upload/intranet/documents/HPN/HPN_FAQs_MNI_final.pdf. Date accessed: April 2020.
- Parenteral feeding: your questions answered. Accessed from: https://pinnt.com/Membership/New-Members-Information/Q-A-PN-in-Paeds-(FINAL).aspx. Date accessed: April 2020.
Date of preparation: April 2020 C-ANPROM/INT//7389