Ulcerative colitis as a long-term condition: flare-ups, remission and monitoring

Ulcerative colitis is one of a group of conditions called inflammatory bowel disease (IBD). The NHS explains that parts of the large bowel (the colon) and the rectum become inflamed. Crohn's & Colitis UK adds that the inflammation affects the inner layer of the bowel wall, and that ulcers can develop there as the condition gets worse and heal as it improves.

It usually begins in the rectum and lower colon but may spread to involve all of the large bowel. When only the rectum is inflamed it is called proctitis. How much of the bowel is affected shapes the symptoms and, later, some of the monitoring and treatment choices.

It is thought to be an autoimmune condition, in which the immune system attacks healthy tissue. The NHS says the cause is not known. Crohn's & Colitis UK is clear that it is not contagious and that there is nothing you could have done differently to prevent it.

Because ulcerative colitis is lifelong, much of living with it is about the cycle between quiet and active disease. The NHS says that you may have no symptoms or only mild ones for a period (remission) and then an episode of very bad symptoms, called a flare-up or relapse, which can last anywhere from a few days to several months.

Crohn's & Colitis UK describes remission as feeling better because the colitis is well controlled, with blood tests and endoscopy showing the bowel is less affected. Some symptoms, such as fatigue, may not go away completely. In a flare-up, tests show the gut is sore and inflamed and symptoms such as diarrhoea, urgency, extreme tiredness and tummy cramps return.

The NHS lists possible triggers: stress, infections, changes in medicines, taking NSAIDs such as ibuprofen or aspirin, and certain foods. It also notes that sometimes there is no obvious trigger.

• Diarrhoea, which may contain blood, mucus or pus.

• Tummy pain, particularly in the lower left part of the tummy, which may ease after pooing.

• Needing to poo frequently, urgently or during the night.

• Feeling like you need to poo even though your bowel is empty.

• Bleeding from the bottom, bloating and passing wind.

• Fatigue, reduced appetite and weight loss.

• During a flare-up, symptoms elsewhere: swollen or painful joints, a high temperature, red eyes, mouth ulcers, or tender red or darker patches of skin.

The NHS separates symptoms that need an urgent GP appointment or NHS 111 from those that need an emergency response. Ask for an urgent GP appointment or get help from NHS 111 if you have symptoms of ulcerative colitis and very bad or bloody diarrhoea, a high temperature or feeling hot, cold or shivery, a fast heartbeat, or you cannot fart or poo, or you are worried. If you already have a diagnosis and a severe flare-up, you can also contact your care team.

Call 999 or go to A&E if you have severe tummy pain, are bleeding non-stop from your bottom, there is a lot of blood or you see large blood clots when you poo, or you are vomiting blood or poo, or your sick looks like coffee grounds or soil. The NHS advises not driving yourself to A&E and bringing your medicines with you.

Crohn's & Colitis UK describes acute severe ulcerative colitis (ASUC) as a serious medical emergency that requires a stay in hospital, where treatment may include a high dose of steroids given through a drip.

The NHS says ulcerative colitis is usually diagnosed in hospital by a gastroenterologist. Tests may include blood tests, a stool sample, scans such as an X-ray, CT or ultrasound, and a colonoscopy, in which a thin flexible tube with a camera is passed into the bottom to check the bowel. A small sample of bowel lining (biopsy) is taken during the colonoscopy for testing.

Crohn's & Colitis UK explains that a colonoscopy looks at the whole large bowel and the end of the small bowel, while a sigmoidoscopy looks at only part of the colon, and that the colon must be completely empty for a colonoscopy. The same charity says that as many as 1 in 10 people diagnosed with ulcerative colitis have the diagnosis changed to Crohn's disease or IBD unclassified in the first five years, so the label can be revised as more is learned.

Doctors may also ask about smoking, recent travel, food intolerances, recent antibiotics or NSAIDs and infections, because other conditions can look similar. Irritable bowel syndrome has some similar symptoms but is a different condition with different treatment.

The NHS says treatment aims to relieve symptoms during a flare-up and to reduce the chance of them coming back, and depends on your symptoms and how much of the bowel is affected. Crohn's & Colitis UK stresses that treatment options may include medicines, surgery, or a combination, and that you and your healthcare professionals work out what suits you.

The NHS lists complications of ulcerative colitis including not getting enough vitamins and minerals, anaemia, weakened bones (osteoporosis), depression and anxiety, delayed puberty or stunted growth in children, and an increased risk of bowel cancer. It says ulcerative colitis is rarely life-threatening but a severe flare-up may need emergency treatment in hospital.

Crohn's & Colitis UK explains that people with colitis are more likely to develop bowel cancer than the general population, but the actual increase in risk is low and the number of people with colitis who develop bowel cancer has fallen over the last 20 years. The risk rises from around eight to ten years after symptoms begin and is highest when much of the large bowel is affected. The NHS says you will be offered regular bowel cancer screening, and encourages you to attend those appointments.

Depending on your symptoms, the NHS says you may also be referred to a dietitian, a rheumatologist (joints), a dermatologist (skin) or an ophthalmologist (eyes).

The NHS suggests taking prescribed medicines even when you feel well, keeping a food diary (and speaking to your care team before changing your diet), drinking plenty of fluids if you have diarrhoea, having vaccinations you are offered, managing stress, eating a balanced diet and exercising regularly. It advises against NSAIDs unless a doctor prescribes them, and against drinking more than 14 units of alcohol a week.

Crohn's & Colitis UK says there is no clear evidence that specific foods cause, cure or treat the inflammation in colitis. It also notes that colitis is more common in non-smokers, but smoking carries many other health risks.

Feeling stressed, anxious or embarrassed is common. The NHS points out that you can refer yourself directly to an NHS talking therapies service without a GP referral, and that charities and local groups can offer peer support. Crohn's & Colitis UK also provides information on pregnancy: most people with colitis have normal pregnancies and healthy babies, and it recommends talking to your IBD team when planning one so medicines can be reviewed.

In the NHS, long-term care for ulcerative colitis is organised around an IBD team led by a consultant gastroenterologist, usually with IBD nurse specialists, and sometimes a dietitian, pharmacist and psychologist. Crohn's & Colitis UK says everyone with a diagnosis should be seen by an IBD specialist and that the team should be able to support you from first assessment to flare-up care and surgery.

Some people use private care for quicker access to a first appointment or colonoscopy, or for a second opinion. The underlying tests and medicines are broadly the same; what tends to differ is waiting time and choice of clinician. Because ulcerative colitis needs lifelong monitoring, it helps to be clear which team holds responsibility for prescribing, blood tests and cancer surveillance, so nothing falls between services.