About Ulcerative Colitis
Ulcerative colitis is one of the two most common Inflammatory Bowel Diseases (IBD). The other is Crohn’s disease, also known as Crohn syndrome and regional enteritis, a type of inflammatory bowel disease that may affect any part of the gastrointestinal tract from mouth to anus, causing a wide variety of symptoms. Ulcerative colitis is a chronic (long-lasting) disease that causes inflammation and sores which are also known as ulcers, in the inner lining of the large intestine which includes the colon and the rectum.
Like Crohn’s disease, ulcerative colitis can be debilitating and sometimes can lead to life-threatening complications. Symptoms usually develop over time, rather than suddenly.
Ulcerative colitis usually affects only the innermost lining of your large intestine (colon) and rectum. It occurs only through continuous stretches of your colon, unlike Crohn’s disease, which occurs anywhere in the digestive tract and often spreads deeply into the affected tissues.
There’s no known cure for ulcerative colitis, but therapies are available that may dramatically reduce the signs and symptoms of ulcerative colitis and even bring about a long-term remission.
Ulcerative colitis can be classified into three classes: Mild - Moderate - Severe
These can vary depending on how much of the colon is affected and the level of inflammation. Symptoms include:
- Bloody diarrhoea with mucus
- Abdominal pain (cramps or persistent pain)
- Frequent need to go to the toilet
- Appetite and weight loss
- Tiredness and fatigue
Symptoms can range from mild to severe, with the condition sometimes being unpredictable. Symptoms are often worse first thing in the morning and they can flare-up and then disappear (known as remission) for months or even years. During a flare-up, the patient is considered to be in the acute phase.
The severity of the condition is judged by the following:
- How many times you are passing stools?
- Are those stools bloody?
- Whether you also have more wide-ranging symptoms such as?
- Fever, rapid heartbeat, anaemia
- How much control do you have over your bladder?
- General wellbeing
When to seek medical advice?
If you are experiencing the symptoms above, you should seek medical advice.
If you are experiencing a severe flare-up of symptoms you may be required to be admitted to hospital as a precaution. A severe flare-up is usually described as passing six or more bloody stools in one day and having symptoms that suggest you are very unwell such as fever, rapid heartbeat and anaemia.
If you have ulcerative colitis, you should note that in all cases, without treatment, symptoms will eventually return.
How is ulcerative colitis diagnosed?
The physician will first ask you about your symptoms, general health and medical history. A physical examination will be conducted, particularly in the abdomen and the rectum. The physician will then obtain blood and urine samples in order to perform certain laboratory tests.
If the results of these tests confirm the suspicion of ulcerative colitis, further examinations will be necessary to determine the type of your disease as well as its location and extent in the gastrointestinal tract. For this part of the diagnosis, you might be referred to a Gastroenterology specialist.
The simplest and least invasive of all these methods is the ultrasound examination of the abdomen, also known as sonography.
In determining the extent of the digestive tract affected by any ulcerative colitis, it is crucial to determine the exact site(s) of inflammation. A number of methods are available, including endoscopy, radiography and, in special cases, scintigraphy (A two-dimensional graphical record of the distribution of a radioactive tracer in a tissue or organ, obtained by means of a scanning scintillation counter).
Once these tests results have been obtained, the physician will be able to rule out other causes of your symptoms and determine if you might have ulcerative colitis.
There is currently no cure for ulcerative colitis so the aim of treatment is to relieve symptoms during a flare-up and prevent symptoms from returning during remission.
Managing mild to moderate ulcerative colitis
Depending on the severity of the disease, mild to moderate "flare-ups" can usually be treated at home. The most common current treatment is the administration of 5-ASAs or steroids.
In April 2013, a new treatment option product by the name of TRUD™ (medical device- a regulatory classification) has been developed and registered across Europe effective for patients suffering from mild to moderate ulcerative colitis. TRUD™ contains biocompatible and natural components which are also produced by your body system and promotes the healing of ulcers in the colon and rectum.
In some cases, patients might be intolerant to certain medication, and/or have used it and no longer respond to the medication. The latter group are also known as non-responders. TRUD™ might be an effective option for these patients or for patients looking for a non-drug approach to ulcerative colitis.
Managing severe active ulcerative colitis
A severe flare-up needs to be treated in hospital as there is a chance of serious complications. Severe active ulcerative colitis should be managed in hospital to minimise the risk of dehydration, malnutrition and potentially fatal complications such as your colon rupturing. You will be given intravenous (injected directly into your vein) fluid to treat dehydration.
Medications such as aminosalicylates (5-ASAs) and corticosteroids (steroid medications) are most often used but are also dependent on a patient’s response to the medication(s) and severity of the disease.
If you like to read more about TRUD™, please click here.
There is a general treatment scheme which is followed by physicians with increasing severity of treatment:
- First line: 5-ASAs (click here for more information)
- Second line: Steroids (click here for more information)
- Third line: Immunosuppresants (medication that works by suppressing your immune system) (click here for more information)
- Fourth line: anti TNF-α (click here for more information)
- Fifth line: Surgery (click here for more information)
This table (click to zoom) shows how decisions are made for treatment during the acute (flare-up) phase. TRUD™ is not mentioned in the list above or the table below because TRUD™ is a new treatment option for mild to moderate inflammatory bowel disease which has only just been made available in 2013.
The choice of treatment is dependent on the patient’s history and severity of the disease (recognised from the symptoms).
If you like to read more about the various classes of medication in detail, please click here (this takes you down to more information on drugs).
If you experience a severe flare-up you may need to be admitted to hospital where you can be given injections of corticosteroids or immunosuppressants.
Once your symptoms are under control it may be recommended that you continue to take certain medication (usually 5-ASA) as these can help prevent further flare-ups; this is known as maintenance therapy.
Once the symptoms are in remission, taking a regular dose of 5-ASA should help prevent symptoms reoccurring. If the condition frequently reoccurs, a regular dose of an immunosuppressant might be recommended.
If your ulcerative colitis flare-up was extensive, a lifelong maintenance therapy is normally recommended.
If your ulcerative colitis flare up was limited to a small part of your colon, you may be able to stop therapy, if two years pass without a return of symptoms.
Treatment options in detail
Aminosalicylates are the first treatment option for mild to moderate ulcerative colitis. They help reduce inflammation and can be taken:
• Orally: as a tablet or capsule that you swallow
• Suppository: a capsule that you insert into your rectum, where it then dissolves
• Enema: where fluid is instilled into your colon
How you take aminosalicylates will depend on the severity and extent of your condition.
The side effects of aminosalicylates can include:
• Feeling sick
• Skin rashes
Corticosteroids (steroid medication) may be used if your ulcerative colitis is more severe or not responding to aminosalicylates. Steroids act much like aminosalicylates. That is, they help by reducing inflammation, except they are a lot stronger.
As with aminosalicylates, steroids can be administered orally, topically or as a suppository or enema.
Long-term use of steroids, especially oral steroids, is not recommended as they can cause potentially serious side effects. Therefore, once your colitis responds to treatment, it is likely you will need to stop using them.
The side effects of short-term steroid use can include:
- Changes in the skin (e.g. acne)
- Sleep and mood disturbance
Side effects of prolonged steroid use (more than 12 weeks) include:
- Osteoporosis – weakening of the bones
- High blood pressure (hypertension)
- Diabetes – or worsening of existing diabetes
- Weight gain
- Cataracts – where cloudy patches in the lens of the eye can make vision blurred or misty
To minimise the risk of prolonged steroid use, it is important that you:
- Eat a healthy and balanced diet with plenty of calcium
- Maintain a healthy body weight
- Stop smoking
- Do not drink more than the safe limits of alcohol (recommended daily levels are three-to-four units of alcohol for men and two-to-three units for women)
- Exercise regularly
You will also require regular appointments to check for high blood pressure, diabetes and osteoporosis if your treatment requires long-term use of corticosteroids.
You may be given immunosuppressants if your condition is still not responding to treatment, sometimes in combination with other medicines although it may also be recommended to withdraw your steroid treatment to reduce possible side effects. This is known as steroid-sparing therapy.
Immunosuppressants work by reducing or suppressing your body’s immune system. This will then stop the inflammation caused by ulcerative colitis but they may take a while to start working (typically two to three months). The drawback is they affect your whole body, not just your colon. This may make you more prone to infection, so it is important to report any signs of infection, such as inflammation, fever or sickness, promptly to your GP.
They can also lower the production of red blood cells, making you prone to anaemia. You will need regular blood tests to monitor your levels of blood cells and check for any other problems.
The preferred immunosuppressant used in the treatment of ulcerative colitis is a medicine known as azathioprine. This is because it rarely causes side effects in most people. However, long-term use of azathioprine has been linked to a small increase in the risk of cancer, particularly skin cancer.
Azathioprine is not normally recommended for pregnant women. Unfortunately, if it is the only treatment that successfully controls your condition, it is likely you will be advised to continue taking it. Any risk to you or your child is far outweighed by the risks presented by ulcerative colitis.
This type of medication is only used to treat severe active ulcerative colitis if you are unable to take steroid medication for medical reasons, such as being allergic to it.
There is also a relatively new type of medication called infliximab that can be used to treat severe ulcerative colitis where corticosteroids cannot be used for medical reasons.
It works by targeting a protein called TNF-alpha which the immune system uses to stimulate inflammation.
This is given through a drip in your arm over the course of two hours (infusion administration). Further infusions are given after two weeks and again after six weeks. Infusions are then given every eight weeks, if treatment is still required.
Around one-in-four people have an allergic reaction to infliximab and experience symptoms such as:
- Joint and muscle pain
- Itchy skin
- High temperature
- Swelling of the hands or lips
- Problems swallowing
Symptoms range from mild to severe and usually develop in the first two hours after the infusion has finished. Rarely, people have experienced a delayed allergic reaction days or even weeks after an infusion. If you begin to experience the symptoms listed above after having infliximab, seek immediate medical assistance.
You will be carefully monitored after your first infusion and, if necessary, powerful anti-allergy medication, such as epinephrine, may be used.
Other complications that might occur and have been reported are:
- "Reactivation” of a previously dormant tuberculosis (TB) infection - therefore, it may not be suitable if you have a previous history of TB;
- The same is also true with the viral infection hepatitis B;
Infliximab is also not recommended for people with a history of heart disease.
Infliximab will make you more vulnerable to infection, so avoid contact with people who have a known chickenpox or shingles infection. It’s important to report any symptoms of a possible infection, such as coughs, high temperature or sore throat, to your GP.
Surgery is the most extreme course of treatment and may be recommended when all medications have failed or if “flare-ups” of symptoms are frequent. This involves the removal of a section of the colon.
If you are not (or no longer) responding to intensive medical treatment, then surgery may be required. You may also wish to consider surgery if your maintenance therapy is not working and the condition is affecting your quality of life. Surgery involves permanently removing the colon– a colectomy.
As part of the operation, your small intestine will be re-routed from the colon so it can pass waste products out of your body. This used to be achieved by carrying out an ileostomy, where an incision is made in your stomach and the small intestine is pulled slightly out of the hole and connected to a pouch (which collects waste materials).
However, in recent years, another technique known as the ileo-anal pouch has been increasingly used. This is an internal pouch constructed by the surgeon out of the small intestines and then connected to the muscles surrounding your anus. The pouch can be emptied in much the same way when you pass stools.
The advantage of this technique is that you are not required to carry an external pouch.
Who is affected?
Ulcerative colitis is not an uncommon condition. The condition normally appears in a person between the ages of 15 and 30.
It is more common in white people of European descent – especially those descended from Ashkenazi Jewish communities – and black people. The condition is much rarer in people of Asian background. The reasons for this are unclear. Both men and women seem to be equally affected by ulcerative colitis.
Emotional impact of ulcerative colitis
Living with a long-term condition that is as unpredictable and potentially debilitating as ulcerative colitis, particularly if it is severe, can have an emotional impact. In some cases anxiety and stress caused by ulcerative colitis can trigger depression.
You may find it useful to talk to others affected by ulcerative colitis, either face to face or via the internet.
A good resource would be your local patient association. This website, operated by the UK’s leading charity for people affected by ulcerative colitis, contains details of local support groups. The site also contains a large range of useful information on ulcerative colitis and related issues.
Outlook for the patients
The outlook for most people with ulcerative colitis is usually quite good. Symptoms are often mild to moderate and can be controlled with medication. However, an estimated one-in-five people with ulcerative colitis have severe symptoms that fail to respond to medication. In these cases, it may be necessary to surgically remove the colon.
What should you keep in mind, as a patient with ulcerative colitis?
Maintain regular medical follow-up even in phases when your illness is in remission (Patients with complications should seek rapid referral to a gastroenterological centre in which internists and surgeons will cooperate in your care)
Inform yourself about possible dietary measures and consult a reputable dietician. (Never forget: the more you control your disease the less your disease will control you)
If your physician prescribes a long-term drug therapy regimen, you must comply with it as closely as possible (Medications should only be discontinued or their dose changed after consulting with the responsible physician. Ask your doctor about possible side effects and about how to recognise them)
Learn to recognise the signs of increased disease activity. In ulcerative colitis, these include changes in the stool, up to and including bloody diarrhoea, abdominal pain and general signs such as tiredness and fatigue. There may be symptoms outside the bowel, including pain in the joints, inflammation of the eyes, changes in the skin and mucous membranes, back pain and renal colics. You should inform your doctor immediately if these signs are recognised. However, these symptoms may not always be due to ulcerative colitis. Often, they may be due to dietary mistakes (for example, diarrhoea following consumption of raw fruit) or bowel infections, which may occur as well in patients with ulcerative colitis.
Keep control of your disease so it does not control you. Inform yourself about your disease and about your individual case. It may also be helpful to keep a diary or journal. In any long-term disease, it is probable that a number of physicians, independent of each other, will be involved in your care. Collect information on the examinations you have undergone as well as surgical reports. The names and addresses of the physicians and hospitals who examined you or performed operations or other procedures are important as well as the date and measures undertaken. You yourself should know how extensive your inflammation is and what treatment methods have already been tried. Also note any side effects or intolerance to medications.
What to observe?
Although diet does not seem to play a role in causing ulcerative colitis, it can help control the condition.
The following advice may help:
- Keep a food diary: 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 eliminate problem foods from your diet.
- Eat small meals: eating five or six smaller meals a day, rather than three main meals, may make you feel better.
- Drink plenty of fluids: it is 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 as these will cause gas.
- Food supplements: ask your GP or gastroenterologist whether you need food supplements, as you might not be absorbing enough vitamins and minerals, such as calcium and iron.
Although stress does not cause ulcerative colitis, successfully managing stress levels may reduce the frequency of symptoms. The following advice may help:
- Exercise: exercise has been proven to reduce stress and lift your mood. Your GP or gastroenterologist should be able to give advice 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 be of great benefit
What causes ulcerative colitis?
Ulcerative colitis is thought to be what is known as an autoimmune condition. This means the immune system goes wrong in some way and attacks healthy tissue. One theory is the immune system mistakes harmless bacteria inside the colon as a threat and attacks the tissues of the colon, causing it to become inflamed. In severe cases, painful sores which bleed and produce mucus and pus may form.
It is likely, that chronically recurring episodes of inflammation in the bowel are related to a complex interaction between various environmental factors and a hereditary predisposition for ulcerative colitis.
Genetic predisposition requires the action of other, still unknown factors in order for an affected individual to actually develop the disease. These factors may include viruses or bacteria, changes in nutritional behaviour or the consumption of certain preservatives or other food additives, as well as disturbances of the body’s own immune defence system. To date, no definitive evidence has been found to prove a connection between these factors and the development of inflammatory bowel disease. It is, however, very probable that environmental factors play a role.
The role of psychological factors remains controversial. While stress may under certain circumstances, provoke an acute flare-up of an existing disease, it is not the underlying cause of inflammatory bowel disease.
Physical changes that might occur
The reduced absorption of vitamins and some trace elements (minerals) in patients with ulcerative colitis might result in symptoms such as:
- Night blindness,
- Changes in taste sensation,
- Vulnerability to infection,
- Hair loss, infertility (in men),
- Growth retardation (in children) and,
- Certain skin changes
Not all patients have experience these physical changes.
For example, a patient might encounter:
- Anaemia due to iron deficiency, loss of blood from the bowel, and/or by vitamin B12 mal-absorption;
- Reduced uptake of bile acids in the small bowel and an increased absorption of bilirubin (bilirubin is the yellow breakdown product of normal heme catabolism. Heme is a principal component of red blood cells) in the colon and have an increased risk of gallbladder stones;
- Increased loss of water which may result in kidney stones;
- Inflammation of the bile ducts (tubes that transport bile out of the liver) – this is known as primary sclerosing cholangitis and can cause symptoms such as itchy skin and tiredness
These can affect a few patients. Serious complications that have been reported are:
- Acute ballooning of the bowel due to gases becoming trapped inside the colon (“toxic megacolon”) – affecting approximately 1 in 20 persons with severe ulcerative colitis (click here for more information);
- Perforation, the formation of a hole in the wall of the bowel;
- Extensive haemorrhage;
- Primary sclerosis cholangitis (PSC) (click here for more information) – affects 1 in every 20 cases;
- Bowel cancer (click here for more information);
- Osteoporosis (click here for more information) - affecting an estimated 1 in 6 people;
Due to these serious complications, peritonitis (inflammation of the membranous lining of the abdomen), and/or intestinal obstruction (medically known as ileus) may occur. These are life-threatening conditions requiring immediate hospital admission and often emergency surgery.
People with ulcerative colitis also have an increased risk of developing bowel cancer. Because of this, regular bowel cancer check-ups are recommended.
Toxic megacolon is a rare and serious complication that occurs in approximately 1 in 20 of cases of severe ulcerative colitis. In severe cases of inflammation, gases can get trapped in the colon, causing it to swell.
This is dangerous as it can:
- Send the body into shock (a sudden drop in blood pressure)
- Rupture (split) the colon
- Cause an infection in the blood (septicaemia)
The symptoms of a toxic megacolon include:
- Abdominal pain
- High body temperature (40°C or 104°F)
- Rapid heart rate
Toxic megacolon can be treated with intravenous fluids, antibiotics and steroids. At the same time, a tube will need to be inserted into your rectum and colon so the gas can be drawn out and your colon decompressed.
In more severe cases, a colectomy will need to be performed.
Treating symptoms of ulcerative colitis before they become severe can help prevent a toxic megacolon from developing.
Primary sclerosis cholangitis (PSC)
PSC is where the bile ducts become progressively inflamed and damaged over time. Bile ducts are small tubes used to transport bile (digestive juice) out of the liver and into the digestive system. PSC does not usually cause symptoms until it is in an advanced stage.
Symptoms can include:
- Fatigue (extreme tiredness)
- Itchy skin
- Weight loss
- High temperature (fever) of 38°C (100.4°F) or above
- Jaundice: yellowing of the skin and the whites of the eyes
There is no direct treatment for PSC but medications, such as rifampicin, can be used to relieve many of the symptoms, such as itchy skin.
In more severe cases of PSC, a liver transplant may be required.
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 extensive.
The longer you have ulcerative colitis, the greater the risk is:
- After 10 years the risk of developing bowel cancer is 1 in 50.
- After 20 years the risk of developing bowel cancer is 1 in 12.
- After 30 years the risk of developing bowel cancer is 1 in 6.
People with ulcerative colitis are often unaware they have bowel cancer as the initial symptoms of this type of cancer are similar to ulcerative colitis, such as blood in your stools, diarrhoea and abdominal pain. Due to these issues you will probably be advised to have a colonoscopy every few years to check no cancer has developed. The frequency of the colonoscopy examinations will increase the longer you live with the condition.
To reduce the risk of developing bowel cancer, make sure you eat a healthy, balanced diet including plenty of fresh fruit and vegetables. It is also important to take regular exercise, maintain a healthy weight and avoid alcohol and smoking. It has been reported that taking 5-ASA as prescribed should also help reduce your risk of bowel cancer.
Osteoporosis is a common complication affecting an estimated 1 in 6 people with ulcerative colitis. Osteoporosis is a condition that affects the bones, causing them to become thin and weak. The condition is not directly caused by ulcerative colitis, but develops as a side effect of prolonged steroid use. Although risks associated with steroid use are well-known, in some people long-term use of steroids is the only way to control symptoms of ulcerative colitis.
There are several medications, such as bisphosphonates, that can be used to strengthen the bones.
You may also be advised to take regular supplements of vitamin D and calcium, as both of these substances have bone-strengthening effects.
Self help groups
Ulcerative colitis/Crohn’s disease
Australia Australian Crohn’s and Colitis Association Inc. (ACCA) National Office P. O. Box 201 Moorolbark, VIC., 3138 Tel.: +(61) 397/269008 Fax: +(61) 397/269914 E-mail: email@example.com Internet: http://www.acca.net.au
Austria Österreichische Morbus Crohn/ Colitis ulcerosa Vereinigung – ÖMCCV – Obere Augartenstr. 26–28 A-1020 Vienna Tel./Fax: xx (43) 1-3330633 E-mail: firstname.lastname@example.org Internet: http://www.oemccv.at/257_DE
Belgium Crohn en Colitis ulcerosa Vereniging vzw (CCV) Groeneweg 151 B-3001 Heverlee Tel.: +(32) 16207312 Fax: +(32) 16208732 E-mail: email@example.com Internet: http://www.ccv-vzw.be
Paolo Gionchettia, Fernando Rizzelloa, Flavio Habalb, Claudia Morsellia, Cristina Amadinia Rossella Romagnolia, Massimo Campieria: Standard Treatment of Ulcerative Colitis. Dig Dis 2003;21:157–167.
Siew C. Ng, MRCP,* and Michael A. Kamm, MD†: Therapeutic Strategies for the Management of Ulcerative Colitis. Inflamm Bowel Dis ● Volume 15, Number 6, June 2009.
The Patient Education Institute, Inc. www.X-Plain.com. 1995-2008.
This presentation does not represent the opinion of MDT. It is a selection of articles from public references.