Why it happens
Chemotherapy damages cells that renew quickly, and those lining the bowel are among the fastest. The result is that the bowel absorbs water less well and expels it. The colorectal cancer drugs that most often cause it are:
- 5-fluorouracil and capecitabine (FOLFOX, FOLFIRI, CAPOX): diarrhoea that usually starts within a few days and worsens if untreated. It is more severe in people with DPD deficiency, which is why this is tested before starting.
- Irinotecan (FOLFIRI, FOLFOXIRI): two types. Early, during the infusion or in the first 24 hours, with sweating, watery eyes and cramps (cholinergic syndrome; stopped with atropine in the day unit). And late, from day 3-5, which can be severe and prolonged.
- Anti-EGFR drugs (cetuximab, panitumumab) and some oral drugs (regorafenib, fruquintinib) also cause it frequently.
- Immunotherapy (pembrolizumab, nivolumab, ipilimumab) can cause immune-mediated colitis: it is a different mechanism, can appear weeks or months after starting, and is not treated with loperamide at home: always tell your team, because it may need corticosteroids.
What to do at home (chemotherapy)
- Loperamide as instructed by your team. For irinotecan diarrhoea the regimen is more intensive than the leaflet says (a starting dose and then every few hours until 12 hours have passed without a stool). Do not use it if there is fever or blood without checking first.
- Fluids: 2-3 litres a day in sips, alternating water with broths, oral rehydration solution from the pharmacy or drinks containing salts. Water alone does not replace what you lose.
- Diet: white rice, pasta, boiled potato, carrot, banana, stewed apple, grilled chicken or fish, toast. Avoid dairy (except yoghurt), fats, fried food, spicy food, coffee, alcohol, raw fruit with skin, raw vegetables, pulses, pastries and sweeteners (sorbitol, "sugar-free" chewing gum).
- Small, frequent meals. Look after the skin around the anus: lukewarm water, pat dry, barrier cream.
- Note the number of stools per day compared with what is normal for you: that is the figure you will be asked for.
When it is an emergency
Call your day unit's number or go to the emergency department if any of these apply:
- Seven or more stools a day above your usual, or diarrhoea that wakes you at night.
- Fever of 38 °C or more (with low white cells, diarrhoea with fever can be a serious infection).
- Blood or mucus in the stools, or black stools.
- You cannot keep fluids down; very little, dark urine; dizziness on standing, very dry mouth, cramps.
- Severe abdominal pain or a swollen, hard belly.
- The diarrhoea does not improve within 24-48 hours of properly taken loperamide.
- You are on immunotherapy and have new diarrhoea or a change in bowel habit: report it even if mild.
Dehydration in someone on treatment is serious and is fixed quickly in hospital with a drip. Nobody will criticise you for calling "about diarrhoea".
If you have a stoma
With an ileostomy, diarrhoea means a bag that fills with liquid many times a day, and dehydration arrives sooner. If you have to empty it more than 8-10 times or the output is like water, the same applies: oral rehydration solution, loperamide as prescribed and an early call.
What to ask at your appointment
- What exactly is my loperamide regimen, and when should I not take it?
- Which number do I call at night or at the weekend?
- Have I had the DPD test (and UGT1A1 if I am on irinotecan)?
- If I am on immunotherapy, what should I do at the first loose stool?
- Can I take probiotics or a thickening agent? Which ones?