Overview

Ulcerative colitis is a long-term condition, where the colon and rectum become inflamed .

The colon is the large intestine (bowel), and the rectum is the end of the bowel where stools are stored.

Small ulcers can develop on the colon's lining, and can bleed and produce pus.

Title
Ulcerative colitis

Symptoms

The main symptoms of ulcerative colitis are:

You may also experience fatigue (extreme tiredness), loss of appetite and weight loss.

The severity of the symptoms varies, depending on how much of the rectum and colon is inflamed and how severe the inflammation is. For some people, the condition has a significant impact on their everyday lives.

Symptoms of a flare-up

Some people may go for weeks or months with very mild symptoms, or none at all (known as remission), followed by periods where the symptoms are particularly troublesome (known as flare-ups or relapses).

During a flare-up, some people with ulcerative colitis also experience symptoms elsewhere in their body. For example, some people develop:

In severe cases, defined as having to empty your bowels six or more times a day, additional symptoms may include:

  • shortness of breath
  • a fast or irregular heartbeat
  • a high temperature (fever)
  • blood in your stools becoming more obvious

In most people, no specific trigger for flare-ups is identified, although a gut infection can occasionally be the cause. Stress is also thought to be a potential factor.

Causes

Ulcerative colitis is thought to be an autoimmune condition. This means the immune system – the body's defence against infection – goes wrong and attacks healthy tissue.

The most popular theory is that the immune system mistakes harmless bacteria inside the colon for a threat and attacks the tissues of the colon, causing it to become inflamed.

Exactly what causes the immune system to behave in this way is unclear. Most experts think it's a combination of genetic and environmental factors.

Diagnosis

To diagnose ulcerative colitis, your GP will first ask about your symptoms, general health and medical history.

They'll also physically examine you, checking for signs such as paleness (caused by anaemia) and tenderness in your tummy (caused by inflammation).

A stool sample can be checked for signs of infection, as gastroenteritis (infection of the stomach and bowel) can sometimes have similar symptoms to ulcerative colitis.

Blood tests may also be carried out to check for anaemia and to see if there's inflammation on any part of your body.

Further tests

If your GP suspects you may have inflammatory bowel disease(a term mainly used to describe two diseases: ulcerative colitis or Crohn's disease), you may be referred to hospital for further tests.

These could include an X-ray or computerised tomography (CT) scan to rule out serious complications and a detailed examination of your rectum and colon.

Sigmoidoscopy

A diagnosis of ulcerative colitis can be confirmed by examining the level and extent of bowel inflammation. This is initially done by using a sigmoidoscope, a thin, flexible tube containing a camera that's inserted into your rectum (bottom).

A sigmoidoscopy can also be used to remove a small sample of tissue from your bowel, so it can be tested in a laboratory. This is known as a biopsy.

The procedure can be uncomfortable, and you can be given a sedative to help you relax. It usually takes around 15 minutes and you can often go home the same day.

During this procedure, only the rectum and lower part of the colon are examined. If it's thought your ulcerative colitis has affected more of your colon, another examination will be required. This is known as a colonoscopy.

Colonoscopy

A colonoscopy uses a flexible tube containing a camera called a colonoscope, which allows your entire colon to be examined. A biopsy sample can also be taken.

Before having a colonoscopy, your colon needs to be completely empty so you'll need to take strong laxativesbeforehand.

A colonoscopy can be uncomfortable, but you'll be given sedatives and pain medications to help you relax and make the procedure as painless as possible.

The procedure takes around half an hour and you'll be able to go home the same day.

Treatment

Treatment for ulcerative colitis aims to relieve symptoms during a flare-up and prevent symptoms from returning (known as maintaining remission).

In most people, this is achieved by taking medication such as:

Mild to moderate flare-ups can usually be treated at home. However, more severe flare-ups need to be treated in hospital to reduce the risk of serious complications, such as the colon becoming stretched and enlarged or developing large ulcers. Both of these can increase the risk of developing a hole in the bowel.

If medications aren't effective at controlling your symptoms, or your quality of life is significantly affected by your condition, surgery to remove your colon may be an option.

During surgery, your small intestine will either be diverted out of an opening in your abdomen (known as an ileostomy), or used to create an internal pouch that's connected to your anus (known as an ileo-anal pouch).

Complications

If you have ulcerative colitis, you could develop further problems.

Osteoporosis

People with ulcerative colitis are at an increased risk of developing osteoporosis, when the bones become weak and are more likely to fracture.

This isn't directly caused by ulcerative colitis, but can develop as a side effect of the prolonged use of corticosteroid medication. It can also be caused by the dietary changes someone with the condition may take – such as avoiding dairy products, if they believe it could be triggering their symptoms.

If you're thought to be at risk of osteoporosis, the health of your bones will be regularly monitored. You may also be advised to take medication or supplements of vitamin D and calcium to strengthen your bones.

Poor growth and development

Ulcerative colitis, and some of the treatments for it, can affect growth and delay puberty.

Children and young people with ulcerative colitis should have their height and body weight measured regularly by healthcare professionals. This should be checked against average measurements for their age.

These checks should be carried out every 3-12 months, depending on the person's age, the treatment they're having and the severity of their symptoms.

If there are problems with your child's growth or development, they may be referred to a paediatrician (a specialist in treating children and young people).

Primary sclerosing cholangitis

Primary sclerosing cholangitis (PSC), where the bile ducts become progressively inflamed and damaged over time, is a rare complication of ulcerative colitis. Bile ducts are small tubes used to transport bile (digestive juice) out of the liver and into the digestive system.

PSC doesn't usually cause symptoms until it's at an advanced stage. Symptoms can include:

  • fatigue (extreme tiredness)
  • diarrhoea
  • itchy skin
  • weight loss
  • chills
  • a high temperature (fever)
  • yellowing of the skin and the whites of the eyes (jaundice)

There's currently no specific treatment for PSC, although medications can be used to relieve some of the symptoms, such as itchy skin. In more severe cases, a liver transplant may be required.

Toxic megacolon

Toxic megacolon is a rare and serious complication of severe ulcerative colitis, where inflammation in the colon causes gas to become trapped, resulting in the colon becoming enlarged and swollen.

This is potentially very dangerous as it can cause the colon to rupture (split) and cause infection in the blood (septicaemia).

The symptoms of a toxic megacolon include:

  • abdominal (tummy) pain
  • a high temperature (fever)
  • a rapid heart rate

Toxic megacolon can be treated with fluids, antibiotics and steroids given intravenously (directly into a vein). If medications don't improve the conditions quickly then surgical removal of the colon (known as a colectomy) may be needed.

Treating symptoms of ulcerative colitis before they become severe can help prevent toxic megacolon.

Bowel cancer

People who have ulcerative colitis have an increased risk of developing bowel cancer (cancer of the colon, rectum or bowel), especially if the condition is severe or involves most of the colon. The longer you have ulcerative colitis, the greater the risk.

People with ulcerative colitis are often unaware they have bowel cancer as the initial symptoms of this type of cancer are similar. These include:

  • blood in the stools
  • diarrhoea
  • abdominal pain

Therefore, you'll usually have regular check-ups to look for signs of bowel cancer from about 10 years after your symptoms first develop.

Check-ups will involve examining your bowel with a colonoscope – a long, flexible tube containing a camera – that's inserted into your rectum. The frequency of the colonoscopy examinations will increase the longer you live with the condition, and will also depend on factors such as how severe your ulcerative colitis is and if you have a family history of bowel cancer. This can vary between every one to five years.

To reduce the risk of bowel cancer, it's important to

  • eat a healthy, balanced diet including plenty of fresh fruit and vegetables
  • take regular exercise
  • maintain a healthy weight
  • avoid alcohol and smoking

Taking aminosalicylates as prescribed can also help reduce your risk of bowel cancer.

Risks

It's estimated that around 1 in every 420 people living in the UK has ulcerative colitis; this amounts to around 146,000 people.

The condition can develop at any age, but is most often diagnosed in people from 15 to 25 years old.

It's more common in white people of European descent (especially those descended from Ashkenazi Jewish communities) and black people. The condition is rarer in people from Asian backgrounds (although the reasons for this are unclear).

Both men and women seem to be equally affected by ulcerative colitis.

Living with

There are a few things you can do to help keep symptoms of ulcerative colitis under control and reduce your risk of complications.

Dietary advice

Although a specific diet isn't thought to play a role in causing ulcerative colitis, some changes to your diet can help control the condition.

For example, you may find it useful to:

  • eat small meals – eating five or six smaller meals a day, rather than three main meals, may help control your symptoms
  • drink plenty of fluids – it's easy to become dehydrated when you have ulcerative colitis, as you can lose a lot of fluid through diarrhoea. Water is the best source of fluids. Avoid caffeine and alcohol as these will make your diarrhoea worse – and fizzy drinks, which can cause flatulence (gas)
  • take food supplements – ask your GP or gastroenterologist if you need food supplements, as you might not be getting enough vitamins and minerals in your diet
Keep a food diary

Keeping a food diary that documents what you eat can also be helpful. You may find you can tolerate some foods while others make your symptoms worse. By keeping a record of what and when you eat, you should be able to identify problem foods and eliminate them from your diet.

However, you shouldn't eliminate entire food groups (such as dairy products) from your diet without speaking to your care team, because you may not get enough of certain vitamins and minerals.

If you want to try a new food, it's best to only try one type a day, as it's then easier to spot foods that cause problems.

Low-residue diet

Temporarily eating a low-residue or low-fibre diet can sometimes help improve symptoms of ulcerative colitis during a flare-up. These diets are designed to reduce the amount and frequency of the stools you pass.

Examples of foods that can be eaten as part of a low-residue diet include:

  • white bread
  • refined (non-wholegrain) breakfast cereals, such as cornflakes
  • white rice, refined pasta and noodles
  • cooked vegetables (but not the peel, seeds or stalks)
  • lean meat and fish
  • eggs

If you're considering trying a low-residue diet, make sure you talk to your care team first.

Stress relief

Although stress doesn't cause ulcerative colitis, successfully managing stress levels may reduce the frequency of symptoms. The following advice may help:

  • exercise – this has been proven to reduce stress and boost your mood; your GP or care team can advise on a suitable exercise plan
  • relaxation techniques – breathing exercises, meditation and yoga are good ways of teaching yourself to relax
  • communication – living with ulcerative colitis can be frustrating and isolating; talking to others with the condition can help (see below)

For more information and advice, see:

Emotional impact

Living with a long-term condition that is as unpredictable and potentially debilitating as ulcerative colitis can have a significant emotional impact.

In some cases, anxiety and stress caused by ulcerative colitis can lead to depression. Signs of depression include feeling very down, hopeless and no longer taking pleasure in activities you used to enjoy. If you think you might be depressed, contact your GP for advice.

You may also find it useful to talk to others affected by ulcerative colitis, either face-to-face or via the internet. Crohn's and Colitis UK is a good resource, with details of local support groups and a large range of useful information on ulcerative colitis and related issues.

Read Tony's real life story of living with ulcerative colitis

Fertility

The chances of a woman with ulcerative colitis becoming pregnant aren't usually affected by the condition. However, infertility can be a complication of surgery carried out to create an ileo-anal pouch.

This risk is much lower if you have surgery to divert the small intestine through an opening in your abdomen (an ileostomy).

Pregnancy

The majority of women with ulcerative colitis who decide to have children will have a normal pregnancy and a healthy baby.

However, if you're pregnant or planning a pregnancy you should discuss it with your care team. If you become pregnant during a flare-up, or have a flare-up while pregnant, there's a risk you could give birth early (premature birth) or have a baby with a low birthweight.

For this reason, doctors usually recommend trying to get ulcerative colitis under control before getting pregnant.

Most ulcerative colitis medications can be taken during pregnancy, including corticosteroids, most 5-ASAs and some types of immunosuppressant medication.

However, there are certain medications (such as some types of immunosuppressant) that may need to be avoided as they're associated with an increased risk of birth defects.

In some cases, your doctors may advise you to take a medicine that isn't normally recommended during pregnancy. This might happen if they think the risks of having a flare-up outweigh the risks associated with the medicine.