Pouchitis: symptoms, causes and treatment

An ileo-anal pouch, often called a J pouch, is a reservoir that surgeons build from a section of small bowel after the colon and rectum have been removed. A University Hospitals Birmingham leaflet describes it as a new rectum, sewn onto the anal muscles so that bowel function is restored. It is usually done in stages, with a temporary ileostomy while the pouch heals.

The operation is most often offered to people whose ulcerative colitis has not been controlled by medicine, or who have developed complications. Crohn's & Colitis UK lists the benefits of surgery as including the chance to stop medicines that may cause side effects, and no risk of bowel cancer in the removed colon.

Pouchitis means inflammation of the lining of that pouch. The Oxford University Hospitals leaflet explains that it occurs when the pouch lining becomes inflamed, and distinguishes it from cuffitis, which is inflammation of the small cuff of rectum left just above the anal sphincter.

Crohn's & Colitis UK lists needing to poo more frequently, blood in the poo and pain as symptoms. The Birmingham leaflet describes inflammation of the pouch causing some or all of pain, bleeding, a raised temperature, diarrhoea and a feeling of being generally unwell.

Because a working pouch already produces loose stool, the key clue is change: noticeably more trips to the toilet, new urgency or leakage, night-time emptying that was not there before, or blood. Dehydration is a particular risk. The Birmingham leaflet notes that people with a pouch are at increased risk of dehydration with an upset tummy because the small bowel is less good at reabsorbing water and salt.

Estimates differ between sources. Crohn's & Colitis UK says around half of people with pouch surgery get pouchitis at some point, while the Birmingham leaflet says fewer than 20% of people with pouches are likely to develop it. Different studies, follow-up periods and definitions may explain the gap, and a pouch team can say what applies locally.

Crohn's & Colitis UK says we do not really know what causes pouchitis, and the Birmingham leaflet says it is difficult to predict who will develop it. Crohn's & Colitis UK adds that the risk is increased in people who have both colitis and primary sclerosing cholangitis, a liver and bile duct condition.

Having an episode does not mean the pouch has failed. Many people have one or two episodes that clear completely.

The Oxford University Hospitals leaflet explains that the most common reasons for pouch problems are infection, inflammation of the pouch, an inflammatory bowel disease such as Crohn's disease, or a sinus or fistula, which is a channel developing in or around the pouch. Because the treatments differ, symptoms should be discussed with the pouch nurse, GP or consultant and treated under medical guidance.

Tests the leaflet lists include blood tests, which assess general health and nutritional deficiencies; a digital examination, in which the surgeon checks the back passage with a lubricated finger for a few seconds; and pouchoscopy, an endoscopic examination in which a thin flexible tube with a camera looks at the inside of the pouch, with biopsies taken if needed. A stool test for infection may also be requested by the team.

Crohn's & Colitis UK says pouchitis is usually treated with antibiotics, and the Birmingham leaflet says most episodes can easily be treated that way. The Oxford leaflet notes that a local pouchitis protocol advises on the pathway and recommended antibiotic cover, and mentions ciprofloxacin and metronidazole as examples of antibiotics people may be given for pouchitis symptoms. The choice, dose and length of a course are decisions for the treating team.

Cuffitis, the neighbouring problem, is handled differently. The Oxford leaflet says a topical local anaesthetic gel or a steroid cream or suppository may be recommended. If symptoms keep returning or do not respond, the team may look again for other causes, such as Crohn's disease or a narrowing at the pouch outlet, and adjust treatment.

Do not take antibiotics left over from another illness, or anti-diarrhoea medicines without advice, because they can mask the problem or cause harm.

The Birmingham leaflet advises taking extra fluid if you have watery stool, vomiting or increased sweating, and contacting the GP if symptoms continue, since a rehydration solution may be prescribed. The Oxford leaflet lists rehydration fluids, loperamide, and barrier creams among the items people keep to hand.

Skin care matters because frequent stools can make the skin sore. The Birmingham leaflet suggests alcohol-free and fragrance-free baby wipes, a barrier cream from the start, and avoiding soap around the anus. Eating regularly and keeping a record of bowel frequency can help the team judge how well treatment is working.

Dietitians experienced in pouches can advise if diet seems to affect symptoms.

Many people travel abroad after pouch surgery. The Birmingham leaflet says the important thing is to go prepared, and suggests asking a consultant or GP about carrying a course of antibiotics in case pouchitis occurs, drinking only bottled water and taking rehydration sachets. The Oxford leaflet suggests carrying loperamide, rehydration sachets and an antibiotic course as advised by the team, and stating the pouch and the reason for surgery when buying travel insurance.

Repeated episodes can affect work and daily plans, so a pouch nurse can help with a flare plan: who to call, what to start and when to go to hospital.

Call NHS 111 or seek same-day help if you have a high temperature, severe or worsening tummy pain, heavy bleeding, vomiting that stops you keeping fluids down, dizziness on standing or very little urine. Call 999 for collapse, severe pain with a rigid tummy or heavy bleeding that will not stop.

On the NHS, pouch care is usually led by a colorectal surgical team with a specialist pouch or IBD nurse, and a pouch clinic for follow-up. A GP can start the conversation and arrange blood and stool tests. People who choose a private colorectal or gastroenterology opinion should share clinic letters and pouchoscopy results with the NHS team and the GP.