Ulcerative colitis

Ulcerative colitis is a chronic (long-term) condition — colitis means inflammation of the colon, also known as the large intestine or large bowel, and ulcerative refers to the formation of ulcers. 

Ulcerative colitis, therefore, causes the lining of the colon to become inflamed, as well as small ulcers to develop that bleed and produce pus. Ulcers usually occur in areas of inflammation, which damages the lining of the colon, exposing the underlying tissue. Ulcers look like small, red craters in your gut lining. 

Inflammation can occur in your rectum ie at the end of the large bowel where your stools are stored, or spread throughout your bowel.

Symptoms include passing blood and mucus, diarrhoea, abdominal pain and a frequent urge to open your bowels (poo). Depending on the extent of your bowel inflammation, ulcerative colitis may cause difficulties in your daily life. You may have periods of time with no symptoms (remission), followed by flare-ups, where your symptoms are worse.

Ulcerative colitis can develop at any age and occurs in around one in 420 people in the UK, affecting men and women equally. It is most commonly diagnosed between the ages of 15 and 25. However, around one in seven cases are diagnosed in the over 60s. It is more common in black people and white people of European descent, particularly in Ashkenazi Jewish communities. It is less common in people of Asian descent.

There is no cure for ulcerative colitis but it can usually be managed with medical advice and changes to your diet.

Symptoms of ulcerative colitis vary in severity depending on how much of your colon is inflamed and the severity of the inflammation. While some people experience mild symptoms, for others symptoms significantly reduce their quality of life. Symptoms include:

• Abdominal pain
• Feeling unwell, sometimes accompanied by a loss of appetite and unexplained weight loss — this is more common when inflammation affects a large part of the colon, which can cause a fever, anaemia, nausea and tiredness
• Frequent diarrhoea, which may contain blood or mucus — water is not absorbed well when your colon is inflamed, which causes runny stools (diarrhoea)
• Increased urge to open your bowels
• Tiredness and fatigue 

In some cases, ulcerative colitis can make you feel irritable and low. It can also cause:

• Anaemia — low iron in your blood
• Anal fissures
• Episcleritis — painful red eyes
• Joint and bone problems — this includes: 
• Ankylosing spondylitis — a type of arthritis that affects the spine
• Osteoporosis — a disease that causes fragile bones and is linked to vitamin D deficiency
• Sacroiliitis — inflammation of the joints between the bone at the base of your spine (sacrum) and your lower spine 
• Sore, swollen joints
• Primary sclerosing cholangitis — inflammation of the bile ducts of your liver 
• Skin problems — this includes:
• Erythema nodosum — an unusual rash on your legs
• Pyoderma gangrenosum — a skin condition where painful pustules form large ulcers 

In severe ulcerative colitis, where you have to empty your bowels at least six times a day, you may also develop: 

• A fast or irregular heartbeat 
• A fever
• More blood in your stools
• Shortness of breath

Signs of a flare-up 

You can go without symptoms of ulcerative colitis for weeks or months (remission) or only have very mild symptoms. Your symptoms may then worsen — this is called a flare-up or relapse. A flare-up doesn't always just cause gut symptoms, you may also develop:

• Arthritis — painful, swollen joints
• Irritated and red eyes
• Mouth ulcers
• Patches of painful, red, swollen skin

If your ulcerative colitis only causes inflammation of your rectum (proctitis), signs of a flare-up may be different. Instead of diarrhoea, your stools may be normal but you may notice bleeding from your rectum, or you may become constipated but frequently feel that you want to have a bowel movement.

Ulcerative colitis is a chronic condition that goes through periods of remission and flare-ups. The severity of your symptoms will depend on how inflamed your colon is and how often you have flare-ups. The first time you develop symptoms ie the first flare-up is usually the most severe. 

Ulcerative colitis usually starts with inflammation in your rectum — this is called proctitis. For some people, ulcerative colitis remains limited to the rectum, while for others it spreads to the other parts or all of the colon. 

In between flare-ups, the inflamed parts of your colon will heal and your symptoms will reduce or go away altogether. Flare-ups are classed as: 

• Mild —  you empty your bowels fewer than four times a day and have small amounts of blood in your stools but do not feel unwell
• Moderate — you empty your bowels four to six times a day and have some blood in your stools but do not feel unwell
• Severe — you empty your bowels more than six times a day, have blood in your stools and feel unwell; you may also develop a fast or irregular heartbeat, fever and/or anaemia

In a given year, around half of people with ulcerative colitis will have mild or no symptoms (remission) and the other half will have a flare-up. Flare-ups can occur gradually over weeks or suddenly over several days.

Ulcerative colitis can usually be controlled, so make an appointment to see your GP. If your GP thinks you may have an inflammatory bowel disease ie ulcerative colitis or Crohn’s disease, they will refer you to a gastroenterologist (a doctor specialising in the digestive system).

Your doctor will carry out a physical examination of your abdomen to check for tenderness, which is caused by inflammation. They will also check if you are pale, which can be a sign of anaemia. You may need an X-ray or CT scan to rule out other more serious complications.

They may ask you to collect a stool sample for testing to rule out gastroenteritis (infection of the stomach and bowel), which has similar symptoms to ulcerative colitis. In some cases, an infection can trigger a flare-up of ulcerative colitis and treating the infection can ease your symptoms. 

Your doctor may also recommend blood tests to check for anaemia and inflammation anywhere in your body and/or a biopsy where a small sample of tissue from your bowel is collected to check for bowel inflammation.

A biopsy can be collected during one of two different procedures: 

Sigmoidoscopy 

A thin, flexible tube with a camera on the end (sigmoidoscope) is inserted into your rectum to examine it and your lower colon, and if needed, collect a tissue sample. This is an outpatient procedure, so you can go home the same day, and it takes around 15 minutes. You will be awake, however, you can have a sedative to relax you.

Colonoscopy 

If after your sigmoidoscopy your doctor thinks your ulcerative colitis has spread further than your lower colon, a different thin, flexible tube with a camera on the end (colonoscope) will be inserted into your rectum and passed further along your colon to examine all of it and if needed, collect a tissue sample. 

This is an outpatient procedure, so you can go home on the same day, and it takes around 30 minutes. You will be awake, however, you can have a sedative to relax you and pain medication to make you more comfortable.

Your colon needs to be completely empty before you have a colonoscopy, so you will be given strong laxatives beforehand.

The exact cause of ulcerative colitis isn’t known. However, it’s thought to be a combination of unknown environmental triggers, genetics and your immune system reacting abnormally. 

Genetics

Over a quarter of people with ulcerative colitis have a family history of it — if a close relative has it, you are 10 times more likely to develop it. Certain gene changes have been identified that increase your risk of developing ulcerative colitis if exposed to a trigger for the condition. Some of these genes are thought to be involved in your immune system. 

Ulcerative colitis is also more common in black people and white people of European descent, particularly in Ashkenazi Jewish communities. It is less common in people of Asian descent. 

Immune system

Ulcerative colitis may be caused by an autoimmune response. This is when your immune system mistakenly attacks healthy tissue. There are several theories as to what happens in ulcerative colitis: 

• A harmful bacterial or viral infection triggers your immune system, which is a healthy response, but after the infection has cleared, the immune system continues to attack your colon, causing inflammation 
• There is no infection to trigger your immune system but it behaves in an abnormal way, which causes inflammation
• Your immune system mistakenly attacks 'good' bacteria in your colon, causing inflammation

Another theory suggests that ulcerative colitis is caused by an imbalance between 'good' and 'bad' bacteria in your colon. 

Environmental factors

Ulcerative colitis is more common in urban areas of North America and northwestern Europe. It is also more common in countries with better sanitation, suggesting that reduced exposure to bacteria may affect your risk of developing ulcerative colitis.

Other triggers

• Anti-inflammatory medicines 
• Gastroenteritis — this is linked to flare-ups in people who already have ulcerative colitis
• Withdrawal from nicotine when quitting smoking

Ulcerative colitis can't be cured, but you can usually manage the symptoms through diet, medication and/or surgery. Your consultant will discuss options with you, based on your symptoms and the extent of your bowel inflammation.

During a very severe flare-up, you may require hospital treatment as an in-patient.

Diet

Making small changes to your daily diet may relieve your symptoms. Try:

• Changing from three daily main meals to five or six small meals every day
• Drinking lots of water
• Avoiding caffeine, alcohol and fizzy drinks

Also, your consultant may recommend taking food supplements to replace nutrients lost as a result of frequent diarrhoea. You may also be referred to a dietitian, who’ll help you follow an ulcerative colitis diet plan.

Medication

To prevent symptoms recurring or relieve symptoms during a flare-up, your consultant may prescribe:

• Immunosuppressants
• Aminosalicylates or steroids - to reduce inflammation
• Monoclonal antibodies - drugs which target specific cells

Surgery

If ulcerative colitis is affecting your daily life and other treatments are unsuccessful, your consultant may suggest surgery. In most cases, this involves removing your large bowel so that waste is passed out of your small intestine instead. This requires either:

• An ileostomy – an opening in your abdomen for your small intestine to drain into an external pouch
• An ileo-anal pouch – where a pouch is made inside and connected to your anus to pass waste as normal

Ulcerative colitis can't be cured but you can usually manage the symptoms through diet, medication and/or surgery. Treatment aims to reduce your symptoms (inducing remission) and ensure you remain without symptoms for as long as possible (maintaining remission).

Your doctor will discuss your options with you, based on your symptoms and the extent of your bowel inflammation. If you have just developed ulcerative colitis, you will usually be prescribed medication for several weeks to help clear your symptoms. You will then be prescribed medication every time you have a flare-up. The medication you receive will depend on the severity of your symptoms and where your bowel inflammation is mainly located.

Making small changes to your daily diet may relieve your symptoms. Try:

• Avoiding caffeine, alcohol and fizzy drinks
• Changing from three daily main meals to five or six small meals every day
• Drinking lots of water

Your consultant may recommend taking food supplements to replace nutrients lost as a result of frequent diarrhoea. You may also be referred to a dietitian, who’ll help you follow an ulcerative colitis diet plan.

To prevent symptoms from recurring or relieve symptoms during a flare-up, your consultant may prescribe:

Aminosalicylates 

Also called 5-ASAs, aminosalicylates help reduce inflammation, which gives damaged tissue a chance to heal. If you have mild to moderate ulcerative colitis, aminosalicylates are usually the first treatment given. They can be used to treat flare-ups (short-term use) or to maintain your remission (lifelong or long-term use). 

They can be taken orally as tablets or capsules, as a suppository ie inserted into your rectum where it dissolves or as an enema ie where a fluid version of the drug is pumped into your colon. The severity of your condition will determine how your medication is given. Mild to moderate ulcerative colitis is usually treated with a suppository or enema and if after four weeks your symptoms are not better, you will be given tablets or capsules. 

Aminosalicylates do not usually cause side effects. However, rare side effects include: 

• A rash
• Diarrhoea
• Feeling sick
• Headaches
• Tummy pain

Corticosteroids 

Corticosteroids (eg prednisolone) help reduce inflammation. They are stronger than aminosalicylates and can be used alongside them or instead of them to treat a flare-up. They can be taken orally as tablets or capsules, as a suppository ie inserted into your rectum where it dissolves or as an enema ie where a fluid version of the drug is pumped into your colon.

They can't be used for long-term treatment as they have serious side effects when used for a long time, including osteoporosis and cataracts. Short-term side effects include:

• Acne
• Increased appetite
• Insomnia
• Mood changes and irritability
• Weight gain

Immunosuppressants

Immunosuppressants (eg tacrolimus and azathioprine) reduce the activity of your immune system and are used to treat mild to moderate flare-ups or to maintain remission when other treatments are ineffective. They are given as tablets orally and take two to three months before they start to be effective.

Immunosuppressants put you at greater risk of catching infections, so if you notice signs of an infection (eg fever or sickness), tell your GP as soon as possible. They also increase your risk of anaemia as they can reduce your production of red blood cells. You will therefore need regular blood tests to check your red blood cell numbers. 

Monoclonal antibodies 

This treatment uses antibodies to target cells that cause inflammation. Monoclonal antibodies are usually only recommended when other treatments have been ineffective.

During a very severe flare-up, you may need hospital treatment as an inpatient to prevent you from becoming dehydrated or developing life-threatening complications, such as your colon rupturing. You will be given medications, usually ciclosporin or infliximab, and if needed, you will also be given fluids directly into a vein (intravenously). 

Ciclosporin

This is a strong immunosuppressant that takes just a few days to work. It is given intravenously and continuously for around seven days. Side effects include: 

• Diarrhoea
• Excessive hair growth
• Fatigue
• Nausea and vomiting
• Swollen gums
• Tremors — uncontrollable shaking or trembling of part of your body

It can also cause high blood pressure and reduced kidney and liver function. However, you will be closely monitored to check for signs of these conditions.

Infliximab

Infliximab belongs to a group of medications called biologicals. It is a monoclonal antibody and reduces inflammation by targeting cells that cause inflammation. It is used to treat moderate to severe ulcerative colitis in adults as well as children and adolescents aged six to 17 if other treatments are ineffective. 

It is given for a year unless it is shown to not be effective. It is given intravenously over one to two hours. The usual course of treatment is to have your first dose and then another dose two weeks and then six weeks later, and then every eight weeks thereafter if it’s still needed.

Side effects of infliximab include:

• Allergy-like symptoms eg breathing difficulties, headaches and hives
• Dizziness and vertigo (feeling that the environment around you is moving)
• Increased risk of infection — if you notice signs of infection (eg cough, a fever or sore throat), see your GP as soon as possible

Most adverse reactions to infliximab occur within two hours of your first dose of the drug, which is why you will be closely monitored after your first dose. However, some people have delayed reactions, several days or weeks later. You should therefore stay alert to any of the above side effects. If you notice any signs of an allergic reaction, get urgent medical assistance; you may need to be given a strong anti-allergy medication called epinephrine.

Infliximab is not suitable for people who have had tuberculosis (TB) or hepatitis B and must be used with caution in people with HIV or hepatitis C. This is because infliximab has been shown to trigger dormant infections. Infliximab is also not suitable for people with heart disease or multiple sclerosis.

Tofacitinib

Tofacitinib is a newer treatment for moderate to severe ulcerative colitis, which is used when other treatments, including biologicals, are not suitable or ineffective. It blocks the activity of an enzyme that is involved in the immune system. It is not suitable for pregnant women. Women in their reproductive years who take tofacitinib should always use reliable contraception and continue to do so for at least four weeks after they stop taking the drug. 

If ulcerative colitis is affecting your daily life and other treatments are unsuccessful in managing your symptoms, your doctor may suggest surgery. About a quarter of people with ulcerative colitis need surgery at some point. 

Surgery is usually recommended if: 

• You develop cancer or pre-cancer of your bowel
• You have a life-threatening flare-up eg if your colon swells considerably (megacolon), punctures (perforates) or bleeds uncontrollably
• Your condition isn't well-controlled with medication, leaving you unwell and dealing with frequent flare-ups

In most cases, surgery involves removing your large bowel so that waste is passed out of your small intestine instead. This requires either:

• An ileostomy — an opening in your abdomen for your small intestine to drain into an external pouch
• An ileoanal pouch — where a pouch is made inside your body and connected to your anus to pass waste as normal; this is more commonly used as it avoids the need for an external pouch

Surgery cures ulcerative colitis as it removes the colon. However, as with any surgery, there are risks and you will have to adjust to permanently living with an ileostomy or an ileoanal pouch. 

You do not need to follow a special diet but your doctor will recommend following a healthy, well-balanced diet. If you have proctitis, they may recommend a high-fibre diet to reduce your risk of constipation.

If you develop anaemia as a result of your ulcerative colitis, you may be prescribed iron tablets, intravenous iron, vitamin B or folic acid tablets.

Your doctor may recommend getting vaccinations against hepatitis, human papillomavirus (HPV) and pneumonia, particularly if you are on medication that reduces the activity of your immune system.

During a flare-up, you may need to take painkillers. 

Changes to your diet

You do not need to follow a special diet, however, some changes to your diet may help manage your condition. This includes: 

• Eating five or six smaller meals every day instead of three larger meals
• Drinking lots of water to avoid dehydration when you have bouts of diarrhoea — avoid alcohol, caffeine and fizzy drinks as these make your symptoms worse 
• Taking food supplements as advised by your GP or gastroenterologist if they think you aren't getting enough vitamins and minerals

During a flare-up, you may want to try temporarily eating a low-residue or low-fibre diet to reduce how often you have a bowel movement and reduce the volume of your stools. Always speak to your care team before starting on a low-residue or low-fibre diet. 

Foods that form part of a low-residue diet include:

• Cooked vegetables, excluding the skin, peel, seeds or stalks
• Eggs
• Lean meat and fish
• Refined breakfast cereals ie not whole grains
• Refined pasta and noodles
• White bread and white rice

Keeping a food diary

Keeping a record of the foods you eat and your symptoms may reveal foods that aggravate your symptoms and foods that you tolerate well. You can then make changes to your diet accordingly. However, you should never exclude entire food groups from your diet without first speaking to your care team as you could end up lacking in certain vitamins or minerals. 

If you’re trying new foods, stick to one type of new food each day so you can easily identify anything that aggravates your symptoms. 

Reducing stress and anxiety

Reducing your stress levels can help reduce how often you have flare-ups. Exercise, relaxation techniques and talking to others about your condition can all help reduce your stress levels.

Also, be aware of signs of depression as it can be challenging to live with ulcerative colitis, especially if you have more severe symptoms. Signs of depression include feeling very low and hopeless and no longer enjoying activities that you used to find fun. Speak to your GP if you are concerned that you are depressed. 

Fertility and pregnancy

Ulcerative colitis doesn't affect a woman's fertility. However, surgery to create an ileoanal pouch can lead to complications that cause infertility — the risks of infertility are much lower with surgery to create an ileostomy. 

Pregnancy in women with ulcerative colitis is usually not affected by the condition. However, if you are pregnant or are planning to get pregnant you should still let your care team know that you have ulcerative colitis. This is because if you have a flare-up during your pregnancy or become pregnant during a flare-up, there is a risk of premature birth or having a baby with a low birth weight. It is therefore recommended that you try to get your ulcerative colitis under control before getting pregnant. 

Most medications for ulcerative colitis can be taken while pregnant. However, there are some exceptions, so you will need to discuss this with your care team and change your medications if needed. 

Osteoporosis

Corticosteroid treatments for ulcerative colitis increase the risk of osteoporosis (weakened bones that are more prone to fracture). Your bone health will therefore be regularly monitored and your doctor may recommend taking vitamin D and calcium supplements to strengthen your bones. 

Poor growth and development

In children, ulcerative colitis and certain treatments for the condition can slow down growth and delay puberty. Children and adolescents with ulcerative colitis will therefore have their height and weight closely monitored and checked against averages for their age. If any problems are detected, your child may be referred to a paediatrician (a doctor specialising in treating children and young people).

Primary sclerosing cholangitis

Primary sclerosing cholangitis is a rare complication of ulcerative colitis. It occurs when the bile ducts become inflamed and damaged over time. It is usually without symptoms until it reaches an advanced stage. Symptoms include fever, chills, diarrhoea, fatigue, itchy skin, jaundice and unintentional weight loss. Medications can help relieve symptoms but in severe cases, a liver transplant may be needed. 

Toxic megacolon

Toxic megacolon is a rare complication of ulcerative colitis, which is life-threatening if left untreated. It occurs when the colon swells due to trapped gas, which can lead to a rupture (split) and cause your blood to become infected (septicaemia). Symptoms include a fever, a rapid heart rate and tummy pain. Treatment includes intravenous fluids, antibiotics and steroids, and if those are not effective, then surgery to remove the colon. 

Bowel cancer

Ulcerative colitis increases your risk of bowel cancer over time, particularly if your whole colon is affected by the condition, you have frequent flare-ups and a family history of bowel cancer. 

Symptoms of bowel cancer are often similar to symptoms of ulcerative colitis and include blood in your stools, diarrhoea and tummy pain. You will therefore need regular check-ups for bowel cancer after about 10 years from your initial diagnosis of ulcerative colitis. 

Bowel cancer check-ups include having a colonoscopy, where a thin, flexible tube with a camera on the end is inserted into your rectum. The longer you live with ulcerative colitis, the more often you will need to have colonoscopies, varying from every one to every five years. 

You can reduce your risk of bowel cancer by: 

• Avoiding alcohol and smoking
• Eating a healthy, balanced diet 
• Maintaining a healthy weight
• Taking aminosalicylates as prescribed by your doctor 
• Taking regular exercise

With treatment, the life expectancy for people with ulcerative colitis is roughly the same as the general population. However, a severe flare-up can still be life-threatening and needs urgent medical treatment. 

Without medication, half of all people with ulcerative colitis have a flare-up on average once a year. Taking medication improves your chances of avoiding frequent flare-ups, although in a quarter of people with the condition, regular flare-ups will continue and surgery will become necessary.

A year after getting a diagnosis of ulcerative colitis and starting treatment, most people can work as normal and live a full life. However around one in 10 people will struggle to work with their condition.