If you’ve just been diagnosed with Ulcerative Colitis (or even if you’ve had it for some time) you may be feeling uncertain about what it is and the potential impact it may have on your life.
We’ve addressed some of the common questions about Ulcerative Colitis below. You can find more in-depth information in our free Ulcerative Colitis booklet.
If you’d prefer to speak to someone, we’re very happy to answer your questions through our Information Service.
What is Ulcerative Colitis?
Ulcerative Colitis is a condition that causes inflammation and ulceration of the inner lining of the rectum and colon (the large bowel). In UC, ulcers develop on the surface of the lining and these may bleed and produce mucus.
The inflammation usually begins in the rectum and lower colon, but it may affect the entire colon. If UC only affects the rectum, it is called proctitis, while if it affects the whole colon it may be called total colitis or pancolitis.
It’s one of the two main forms of Inflammatory Bowel Disease (IBD). The other is Crohn’s Disease.
Ulcerative Colitis is a chronic condition. This means that it is ongoing and lifelong, although you may have long periods of good health known as remission, as well relapses or flare-ups when your symptoms are more active.
What are the symptoms?
Ulcerative Colitis is a very individual condition and its symptoms will vary from person to person. They range from mild to severe and may also change over time.
Some people remain well for a long time, while others have frequent flare-ups. The most common symptoms are:
• Cramping pains in the abdomen
• Tiredness and fatigue
• Feeling generally unwell or feverish
• Loss of appetite and weight loss
• Anaemia (a reduced level of red blood cells).
Find out more about the symptoms of Ulcerative Colitis
Who gets Ulcerative Colitis?
It’s estimated that UC affects about one in every 420 people in the UK (roughly 146,000 people).
UC is more common in urban areas and in northern developed countries, although we’re starting to see an increase in numbers in developing nations, too.
UC is also more common in white Europeans, especially those of Ashkenazi Jewish descent (those who lived in Eastern Europe and Russia).
It can start at any age, though it often appears for the first time between the ages of 15 and 25. It affects men and women equally.
UC tends to develop more frequently in non-smokers and ex-smokers than in smokers – but health professionals strongly advise against smoking as a way of treating Ulcerative Colitis. See Smoking and IBD for more information.
Our Ambassadors embody the wide range of people who get Crohn's and Colitis. Read their stories.
What are the causes & is there a cure?
Although there has been a lot of research, we still don’t really know what causes Ulcerative Colitis. However, advances have been made in recent years, particularly in genetics. We now believe that UC is caused by a combination of factors:
- the genes you’re born with
- plus an abnormal reaction of the digestive system to bacteria in the intestine
- along with an unknown 'trigger' that could include viruses, other bacteria, diet, stress, or something else in the environment.
At the moment there is no cure for Ulcerative Colitis, but drugs, and sometimes surgery, can give long periods of relief from symptoms. Research, including work funded by Crohn’s and Colitis UK, is continuing into new treatments to improve patients’ quality of life and eventually find a cure.
What treatments are there for Ulcerative Colitis?
Ulcerative Colitis can often be managed by medication (drug treatment). If your quality of life has been affected by repeated flare-ups and you have not responded well to medication, you may be advised to consider surgery.
Your treatment will depend on the type and severity of your UC and the choices you make with your doctor.
Find out what treatments are available for Ulcerative Colitis.
Can Ulcerative Colitis have complications?
More than a third of people with UC develop other conditions outside of the digestive system, mainly affecting the joints, eyes and skin.
Inflammation of the joints (arthritis) affects about one out of 10 people with UC. Some people with UC also develop ankylosing spondylitis, a condition in which the joints in the spine and pelvis become inflamed and stiff. Drugs and physiotherapy are used to treat these symptoms.
A variety of other health conditions can be associated with UC, including:
- skin problems, such as mouth ulcers, blisters and ulcers on the skin, and painful red swellings, usually on the legs
- inflammation of the eyes
- thinner and weaker bones
- liver inflammation
- blood clots (including deep vein thrombosis)
If you have had extensive or total colitis (pancolitis) for many years, you have a slightly greater risk than normal of developing cancer in the colon or rectum. However, the overall number of people with IBD who develop bowel cancer is very small, and cancers can be more successfully treated if detected early. For more information about this, see our information sheet Bowel Cancer and IBD.
What are the challenges of living with the condition?
Living with a chronic condition like Ulcerative Colitis can have both an emotional and practical impact on your life. Though there may be times when you have to make adjustments and take time to recuperate, for example, if you are having a flare-up, when you are well you are likely to be able to live life to the full.
Most obviously, you are likely to see your GP and perhaps also your hospital IBD team quite regularly. It’s good to build up a good relationship with them, as that can make seeking and receiving treatment a less stressful process. See our booklet My Crohn’s and Colitis Care for more information about to work with your IBD team to get the best out of your care.
Flare-ups can be disruptive to relationships and work – sometimes you may need to cancel engagements and take time off when you are feeling unwell. It can be very helpful if you feel you can open up about your condition to those around you – your family, friends, work colleagues and employers. Telling the people closest to you something about your illness may make them feel reassured and more able to give you the support you need.
So far there is little evidence that any particular food or additive causes or triggers UC, but you may find certain foods make your symptoms worse. Everyone is different, but during a flare-up bland, soft foods may cause less discomfort than raw vegetables, spicy and high-fibre foods. Generally, the most important thing is to eat a nutritious and balanced diet to maintain your weight and strength, and to drink sufficient fluids to stop you getting dehydrated.
Most women with Ulcerative Colitis can expect a normal pregnancy and a healthy baby. Also, for most women, having a baby does not make their UC worse. If you do get pregnant during a flare-up, you may be more likely to give birth early or have a baby with a low birth weight. However, your doctor should be able to help you to control your symptoms as much as possible – and, with a few exceptions, most IBD treatment can be continued while you are pregnant. If you are trying to start a family, or if you are already pregnant, discuss this with your doctor or IBD team.
Around a quarter of people are children or adolescents when they are diagnosed with IBD. Ulcerative Colitis in children tends to be more extensive in children than adults. Watch our series of short videos to hear from young people about how they cope with the challenges of living with Crohn’s and Colitis.
Download our free information sheet on Staying well with IBD.
Ulcerative Colitis, Edition 9a - last review November 2017. (Next planned review 2020).