Patients & caregivers
Living with intestinal failure at home
Practical guides for patients and caregivers managing intestinal failure, short bowel syndrome, a high-output ostomy or fistula, and parenteral nutrition.
These guides are general education. They do not replace instructions from your treating clinicians, infusion pharmacy, home-health nurse, or emergency team. Always follow your individualized care plan and your TPN orders. For a medical emergency, call 911 or go to the nearest emergency department.
On this page
- Understanding parenteral nutrition
- Home infusion safety checklist
- Central line care and infection prevention
- High-output ostomy or fistula
- Hydration, electrolytes, and lab monitoring
- Hospital-to-home discharge checklist
- Caregiver guide
- When to call, and whom
More guides
Understanding parenteral nutrition
What is PN or TPN?
Parenteral nutrition is nutrition delivered directly into a vein. It is called total parenteral nutrition, or TPN, when it provides most or all of a person's nutrition. It can supply fluid, calories, protein, fats, electrolytes, vitamins, and trace elements when the digestive tract cannot absorb enough nutrition or cannot be used safely.
Why you might need it
You may need PN if you cannot maintain enough nutrition, hydration, or electrolyte balance by eating, drinking, tube feeding, or a combination of these. PN may be temporary or long-term, and your team will reassess your needs regularly.
What is in the bag
Every formula is individualized. Yours may include dextrose for carbohydrate calories, amino acids for protein, lipid emulsion for fat calories and essential fatty acids, electrolytes such as sodium, potassium, magnesium, calcium, and phosphate, plus vitamins, trace elements, and any prescribed additives. The formula may change based on laboratory results, weight, hydration, gastrointestinal output, kidney function, liver tests, blood glucose, medications, and how much you are able to eat.
Who is involved in your care
Your care may involve a physician or advanced practice clinician, a dietitian, a pharmacist, a home-infusion pharmacy, a home-health nurse, a surgeon, a gastroenterologist, your primary care clinician, and other specialists. AIRI coordinates communication among these teams.
Do not change your PN rate, infusion time, additives, IV fluids, or medications unless your prescribing team tells you to. Check each PN bag and supply delivery when it arrives, keep all laboratory appointments, and tell your team about vomiting, diarrhea, increased ostomy or fistula output, swelling, fever, chills, changes in urine output, or trouble with your line.
Home infusion safety checklist
Use the instructions from your infusion pharmacy and nursing team. This is a general reminder only.
Before you start
- Wash your hands thoroughly with soap and water
- Prepare a clean, dry work area away from pets, food preparation, and clutter
- Gather the PN bag, pump, tubing, supplies, disinfecting products, and flushes
- Confirm the bag label has your name and matches your prescribed schedule
- Check the expiration or beyond-use date and time
- Inspect the bag for leaks, particles, cloudiness, discoloration, or separation
- Confirm the bag was stored and warmed as your pharmacy instructed
- Check that the pump is charged or plugged in
During the infusion
- Keep the tubing secure and avoid pulling, kinking, or compressing it
- Keep the pump with you and protect it from water
- Follow your prescribed schedule for monitoring
- Do not change pump settings unless you have been specifically instructed
- Call your pharmacy or clinical team if the pump alarms, the infusion stops, the bag leaks, or you are unsure what to do
After the infusion
- Follow the instructions for disconnecting, flushing, and locking the line
- Dispose of supplies as instructed
- Record the infusion, symptoms, weight, blood glucose, and output if your care plan asks for it
- Store remaining supplies in a clean, dry place
Call your team right away if you cannot start or finish the infusion as prescribed, the pump alarms repeatedly, the tubing is damaged, or the bag looks abnormal. Call 911 for severe chest pain, severe trouble breathing, fainting, or other emergency symptoms.
Central line care and infection prevention
Many patients receiving PN use a central venous catheter such as a PICC line, a tunneled catheter, or an implanted port. Central lines provide essential access for nutrition and medication, but they can develop infections, clots, breaks, or blockages. Careful line care reduces these risks.
Everyday line safety
- Keep the dressing clean, dry, and secure
- Follow your nursing team's schedule for dressing and cap changes
- Wash your hands before touching the catheter, tubing, caps, or supplies — and make sure anyone helping does the same
- Use the cleaning and disinfection process your infusion nurse taught you, every single time you access the line
- Protect the catheter and tubing during bathing or showering as instructed
- Never use scissors, pins, or sharp objects near the catheter
- Avoid activities that could pull on, kink, or damage the line
- Never use the line for an unapproved purpose
Warning signs of infection or a line problem
Call your clinical team promptly for:
- Fever or chills
- Shaking chills or suddenly feeling unwell during an infusion
- Redness, warmth, swelling, tenderness, drainage, or bleeding at the catheter site
- New pain along the catheter path, shoulder, arm, neck, or chest
- A loose dressing, broken cap, cracked tubing, leaking line, or a line that has moved
- Inability to flush or infuse as usual
Call 911 or seek emergency care for severe trouble breathing, chest pain, fainting, uncontrolled bleeding, new confusion, or severe signs of illness. If your line becomes disconnected, damaged, or pulled out, follow your emergency instructions and contact your infusion team immediately.
High-output ostomy or fistula
An ostomy or fistula can cause substantial fluid and electrolyte loss. Your team decides what counts as “high” output for you, based on your anatomy, clinical condition, kidney function, and hydration needs. The amount that is concerning differs from person to person.
What to track
- Ostomy or fistula output in milliliters
- Stool consistency and any major change in appearance
- Oral fluid intake
- Urine amount, color, and frequency
- Daily weight
- Symptoms such as thirst, dizziness, cramps, weakness, nausea, or fatigue
Use a measuring container provided or recommended by your care team, and bring your log to appointments.
Signs of dehydration
Contact your clinical team promptly if you notice markedly reduced urine output, dark or very concentrated urine, new dizziness or fainting, a rapid heartbeat, severe thirst or dry mouth, muscle cramps, unusual fatigue or confusion, a sudden increase in output, or that you cannot keep up with your prescribed fluid intake.
Water alone may not replace the electrolytes lost through high output. Ask your team which fluids are right for you, and do not make major changes to fluid intake, antidiarrheal medicines, acid-suppression medicines, or electrolyte supplements without contacting them first.
Hydration, electrolytes, and laboratory monitoring
Patients with intestinal failure, high GI losses, PN use, kidney disease, or changing oral intake can develop fluid and electrolyte changes quickly. Laboratory tests let your team adjust PN, IV fluids, supplements, and medications safely.
Tests your team may monitor
Depending on your care plan: sodium, potassium, chloride, bicarbonate, calcium, magnesium, and phosphorus; kidney function; blood glucose; liver tests and bilirubin; triglycerides; blood counts; and nutritional markers including selected vitamins and trace elements.
How to prepare
- Complete lab draws on the schedule your team provides
- Ask whether the timing should relate to your infusion cycle
- Report a missed laboratory draw immediately
- Keep your team updated about new medications, vomiting, diarrhea, increased output, reduced intake, swelling, fever, or hospital visits
Do not change your PN, IV fluids, electrolyte replacement, insulin, or medications based on a single laboratory result unless your clinician instructs you to.
Hospital-to-home discharge checklist
Before you leave the hospital
- You understand why PN is needed and what your infusion schedule is
- Your home-infusion pharmacy has accepted the referral and confirmed delivery details
- You know when your PN and supplies will arrive
- You or your caregiver have completed infusion, pump, and line-care training
- You have the pharmacy's daytime and after-hours phone numbers
- You have the home-health agency contact, if home nursing is ordered
- You have a current medication list and know what to take, stop, or change
- You understand your IV-fluid, oral fluid, dietary, tube-feeding, and ostomy plan
- You know when and where laboratory tests will be drawn
- You have a follow-up appointment or a plan for AIRI contact after discharge
- You know the warning signs that require a call or emergency care
Your first day at home
- Confirm that all ordered supplies are present
- Store PN and supplies exactly as the pharmacy instructed
- Keep your contact numbers somewhere visible
- Use your written infusion schedule rather than relying on memory
- Start tracking weight, urine output, ostomy or fistula output, glucose, symptoms, and intake if ordered
Contact your team if supplies do not arrive as expected, you cannot use the pump or access the line safely, you are unsure about the schedule, you do not know when your next lab draw or visit is, or your condition changes.
Caregiver guide
Caregivers are important partners in safe home PN therapy. Your responsibilities will vary with the patient's needs, your training, and the care plan. You should receive hands-on teaching from the infusion pharmacy or nursing team before independently assisting with PN or central-line care.
- Keep supplies organized in a clean, dry area
- Know the PN schedule and the phone numbers for the infusion pharmacy, home health, and AIRI
- Encourage the patient to keep laboratory and clinic appointments
- Help track symptoms, output, weight, fluids, and infusion concerns if asked
- Watch for fever, chills, line-site changes, confusion, severe weakness, reduced urine output, or changes in breathing
- Ask for help if you are uncomfortable with any step of line care or infusion setup
Home PN can be demanding. It is entirely appropriate to ask the care team for more teaching, written instructions, home nursing support, or help connecting with social work and community resources.
When to call, and whom
Call AIRI or your prescribing team
- Changes in ostomy or fistula output, urine output, intake, weight, or symptoms outside your plan
- Persistent vomiting, diarrhea, poor intake, or dehydration symptoms
- New swelling, rapid weight change, increased fatigue or weakness, or abnormal glucose readings
- Questions about laboratory results, medications, nutrition, or follow-up plans
Call your infusion pharmacy or home health
- Pump alarms, a failed infusion, damaged or missing supplies, or delivery problems
- Questions about PN storage, pump operation, tubing, flushing, or line-care supplies
- Damaged catheter tubing, a loose cap, a leaking line, or trouble with infusion setup
Call 911 or go to the ED
- Severe trouble breathing, chest pain, fainting, or severe allergic symptoms
- Severe bleeding, or a catheter pulled out with uncontrolled bleeding
- New confusion, severe weakness, or inability to stay awake
- Signs of severe infection or sepsis, especially fever and chills with marked illness or rapid worsening