Short bowel syndrome

When to get urgent help

Many people with SBS have a central feeding line, and sepsis is treated in hospital. (NHS: Dehydration; Sepsis)

Immediate action required — dehydration

Call 999 or go to A&E if you or somebody else has signs of dehydration and:

• blue, grey, pale or blotchy skin, lips or tongue – on brown or black skin, this may be easier to see on the palms of the hands or soles of the feet
• skin that feels cold
• difficulty breathing, or is taking lots of quick breaths
• are confused
• are sleepier than normal or difficult to wake

These could be signs of shock, which is a serious complication of dehydration.

Do not drive to A&E. Ask someone to drive you or call 999 and ask for an ambulance. Bring any medicines you take with you.

Immediate action required — sepsis

Call 999 or go to A&E if a baby or child under 5 years:

• is breathing very fast or having difficulty breathing – they may make grunting noises or their tummy may be sucking under their ribcage when they breathe
• has blue, grey, pale or blotchy skin, lips or tongue – on black or brown skin, this may be easier to see on the palms of the hands or soles of the feet
• has a rash that does not fade when you press it
• has a very high temperature – 38C or more in babies under 3 months old, or 39C or more in babies 3 to 6 months old
• has a very low temperature – less than 36C, or feels cold to the touch or is shivery
• has a weak, high-pitched or continuous cry
• is not responding like they normally do, is not feeding, is difficult to wake or is more sleepy than usual
• has not had a pee for the last 12 hours
• has symptoms you're worried might be sepsis

Call 999 or go to A&E if an adult or child aged 5 years or over:

• is breathing very fast
• is confused, has slurred speech, or is not making sense
• has blue, pale or blotchy skin – on black or brown skin, this may be easier to see on the palms of the hands or soles of the feet
• has a very high or very low temperature, feels hot or cold to the touch, or is shivery
• has a rash that does not fade when you press it
• has symptoms you're worried might be sepsis

Do not drive to A&E. Ask someone to drive you or call 999 and ask for an ambulance. Bring any medicines you take with you.

Trust your instincts. Get immediate medical help if you or your child are unwell and you think there's something seriously wrong.

If you have a central line: fever or shivering during or soon after a line feed can be a sign of a line infection. The British Intestinal Failure Alliance says a line infection is suspected when a fever or shivering (rigors) starts, often within 30 to 60 minutes of starting (or occasionally disconnecting) a feed (BIFA). Call your intestinal-failure unit's urgent number straight away, or call 999 or go to A&E if you have any of the sepsis signs above.

Urgent advice

Ask for an urgent GP appointment or get help from NHS 111 if:

• you're feeling unusually tired (or your child seems drowsy)
• you feel dizzy when you stand up and it does not go away
• you have dark yellow pee or you're peeing less than normal (or your baby has fewer wet nappies)
• you or your child are breathing quickly or have a fast heart rate
• your baby or child have few or no tears when they cry
• your baby has a soft spot on their head that sinks inwards (sunken fontanelle)

These can be signs of serious dehydration that need urgent treatment.

You can call 111 or get help from 111 online. Call 111 if you need advice for a child under 5 years old.

What is short bowel syndrome?

Short bowel syndrome (SBS) happens when so much small bowel is missing or not working — usually after major surgery — that the bowel cannot absorb enough nutrients, fluid and salts from food and drink. The British National Formulary for Children describes it as a shortened bowel after large surgical resection needing medical management to ensure adequate absorption; the European Society for Clinical Nutrition and Metabolism (ESPEN) defines the underlying problem, intestinal failure, as gut function reduced below what is needed to absorb macronutrients and/or water and electrolytes, so that intravenous supplementation is needed.

Without management, SBS causes diarrhoea or very high stoma output, dehydration, weight loss and poor absorption of nutrients and some medicines. The aims of treatment are to ensure adequate nutrition and drug absorption and to reduce the risk of complications.

In England, care is commissioned as the specialised Severe Intestinal Failure Service (NHS England service specification 230701S) — SBS is looked after by specialist centres, not managed in primary care alone. The BSG published UK guidelines for the management of patients with a short bowel (Gut 2006), ESPEN updated its chronic intestinal failure guideline in 2023, and the AGA published an expert-review Clinical Practice Update on managing SBS in 2022.

Why it happens

SBS is commonly caused by surgery needed to remove abnormal bowel. In adults, this may be needed for conditions including mesenteric ischaemia (loss of blood supply to the bowel), Crohn's disease and radiation enteritis. In children, it is often because of necrotising enterocolitis in premature babies, or other conditions such as volvulus or gastroschisis, and some children are born with a short bowel (NICE TA804, section 3.1). A stoma (for example an ileostomy) may be formed as part of that surgery.

What it can feel like

• Diarrhoea, or very high stoma output
• Losing large amounts of fluid and salts — thirst, dry mouth, dark pee, dizziness on standing
• Weight loss and poor absorption of nutrients
• Poor absorption of some medicines taken by mouth

This page cannot tell you whether your symptoms are SBS, another form of malabsorption, or something else.

How it is managed

Care is led by a specialist intestinal-failure team. NICE CG32 covers starting, giving, monitoring and stopping oral, enteral and parenteral nutrition support in adults — these are clinician-managed decisions, not things to adjust at home.

Standard care, described by NICE TA804, is parenteral support (nutrients and fluid given intravenously) where needed, plus best supportive care:

• Medicines that slow the bowel
• Medicines that reduce gut secretions
• Fluid restriction (as advised by your team)
• Diet changes

Teduglutide is recommended by NICE as an option for treating SBS in people aged 1 year and above whose condition is stable following a period of intestinal adaptation after surgery (NICE TA804). In clinical trials, teduglutide reduced the number of days a week people with SBS needed parenteral support compared with placebo; NICE notes uncertainty about how much, because the trial design may not reflect NHS practice.

Children and babies

Babies born preterm or sick term babies who need parenteral nutrition are covered by a separate NICE guideline, NG154 (neonatal parenteral nutrition). Children’s management of SBS is described in the BNFC treatment summary for short bowel syndrome.

See or call your team (non-emergency)

Contact your intestinal failure or nutrition team, or your GP, if your output, weight or symptoms are changing. Your UK pathway runs through specialist intestinal-failure centres.

Approaches people discuss

SBS is managed by specialist teams. Nothing on this page replaces the plan your intestinal-failure team has set:

• Established Specialist intestinal-failure care under NHS England commissioned services, following UK BSG guidance and international ESPEN and AGA guidance. Sources: NHS England 230701S; BSG 2006; ESPEN 2023; AGA 2022.
• Established Parenteral support where needed, plus best supportive care — bowel-slowing medicines, antisecretory medicines, fluid restriction (as advised by your team) and diet changes — with nutrition support started, monitored and stopped by clinicians. Sources: NICE TA804; NICE CG32.
• Established Teduglutide for people aged 1 year and above with stable SBS after intestinal adaptation, as an option under NICE TA804 — NICE notes trial-design uncertainty about the size of the reduction in parenteral support days. Source: NICE TA804.

What not to self-manage

• Don't wait out any of the 999/A&E or urgent-tier symptoms above at home; severe dehydration and sepsis are treated in hospital.
• Don't start, adjust or stop parenteral nutrition, or your prescribed bowel-slowing or antisecretory medicines, yourself — starting, administering and stopping nutrition support are clinician-managed decisions covered by NICE guidance.
• Don't start a restrictive diet, or change fluid routines, without your dietitian or intestinal-failure team — diet and fluid advice are part of specialist care.
• Don't rely on rehydration advice alone if you're losing large amounts from diarrhoea or a stoma — the NHS urgent tier applies above.
• Don't try to manage a child's poor feeding, drowsiness or fewer wet nappies at home — the NHS 111/GP urgency wording and baby-specific signs above apply.

Day-to-day

Follow the fluid plan your intestinal-failure team gives you. For some people with SBS, especially with a stoma high in the small bowel, drinking more water, tea, squash or juice can increase output; your team may limit these and prescribe a specific higher-salt rehydration solution (BSG 2006; ESPEN 2023; NICE TA804). Keep taking your medicines as prescribed. Bring a list of your medicines if you ever need to attend A&E. Peer support for people on home artificial nutrition is available from PINNT, the UK charity for people on parenteral, enteral and oral nutritional supplements.

Different from

• Coeliac disease — also causes malabsorption, but bowel length is normal and it is treated with a gluten-free diet; SBS is loss of bowel and needs specialist nutrition care. See coeliac disease.
• Bile acid malabsorption — diarrhoea after ileal disease or resection with absorption otherwise normal; SBS involves larger loss with dehydration and nutrition risk. See bile acid malabsorption.
• Lactose intolerance / fructose malabsorption — single-sugar malabsorption; bloating and loose stools, not dehydration or weight loss from global malabsorption. See lactose intolerance and fructose malabsorption.
• IBS — symptoms without malabsorption or bowel loss. See IBS.
• SIBO — can complicate SBS but is a separate diagnosis; they are not the same thing. See SIBO.

Community insights

Anecdotal themes the community talks about:

• Life organised around fluid — what to drink, where the next toilet is, watching pee colour — long before anyone uses the words “intestinal failure”.
• The relief of a named plan: knowing which specialist centre you belong to and exactly when to phone them.
• PINNT being the first place people on home parenteral nutrition find others who understand line life.
• The adjustment after bowel surgery — including living with a stoma — being as much practical as medical.