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According to a research study commissioned by the charity Crohn’s & Colitis UK and carried out at the University of Nottingham, the prevalence of those living with inflammatory bowel disease in the UK is much higher than previously thought.
The research shows that 1 in every 123 people in the UK is living with an inflammatory bowel condition, which includes colitis. For those over 70, the numbers rise further, with 1 in every 67 people suffering. These statistics put the UK in second place globally for the prevalence of such diseases.
Let’s take a look and find out a little more about colitis, how it is different to other inflammatory bowel diseases and the outlook if you’re diagnosed with the condition.
What is colitis?
Colitis is often the shorter, more common name for Ulcerative Colitis. It comes under the umbrella of Inflammatory Bowel Disease (IBD). Inflammatory Bowel Disease is a group of conditions that primarily affect the colon and small intestine.
Colitis is the most common IBD and it affects the colon. Crohn’s disease is another common IBD but Crohn’s can affect the whole digestive tract, from mouth to anus. Often, the two conditions are combined into the umbrella term of IBD.
With colitis, a person’s large intestine (the colon) becomes inflamed, swollen and ulcerated. This causes many distressing and debilitating symptoms. Colitis is an unpredictable lifelong condition. A sufferer often has periods of remission, where they are in good health for a time, but then they may have a relapse or flare-up of their colitis at other times.
Unfortunately, there is no cure for colitis although there are treatments including surgery to help manage the condition.
What are the signs and symptoms of colitis?
Colitis has some common signs and symptoms, but it is important to note that these symptoms can be different for each sufferer. Symptoms can be mild or more severe, and they can fluctuate and change over time. The severity of symptoms also depends on whether the disease is in an active stage and how severe the colitis is.
The most common symptoms of colitis include:
- Diarrhoea – Having looser poo more regularly than is normal.
- Blood and mucus in your poo.
- Urgency – Where you might need to get to a toilet quickly.
- Bleeding from the anus.
- Cramping pain in the abdomen when you need to poo.
- Constipation – Not pooing often and finding it difficult to empty your bowels fully. This may result in straining and poo may be dry and/or hard.
- Feeling unwell including feeling feverish, having an elevated temperature or heart rate.
- Fatigue – Extreme tiredness can be a result of blood loss through the poo or a lack of sleep if the symptoms are keeping you awake.
- Anaemia – Again, caused by bleeding in the intestines or as the result of a poor diet/low appetite as a result of symptoms.
- Loss of appetite – Many people do not feel like eating when they have a flare-up.
- Weight loss – This can be a result of the body not being able to absorb enough nutrients from the food they eat, as a result of diarrhoea, and due to the sufferer not feeling like eating as they are unwell.
Aside from these symptoms, someone with colitis often experiences inflammation in other parts of their body. This is because colitis is an autoimmune condition and often those with autoimmune conditions can have multiple problem areas due to their overactive immune system. It is not uncommon for someone with colitis to experience inflammation of the skin, eyes and joints too.
What causes colitis?
Colitis is an autoimmune condition. This means that the body’s immune system starts attacking the lining of the colon causing ulcers and inflammation in the gut including the rectum.
Colitis affects the inner layer of the bowel, which is the layer that takes in nutrients from the food we eat. The inflammation can cause bleeding and excess mucus and, as the condition progresses, ulcers develop on the inner layer. The inflammation affects all aspects of the bowel and its functioning including how the body absorbs nutrients, digests foods and gets rid of waste.
No one really knows what triggers this abnormal immune system response.
Some suggested causes include:
- Food sensitivities which trigger a response when certain foods are eaten.
- Gut bacteria producing toxins that irritate the inner layer of the colon.
- Genetic predisposition. If someone in your family has been diagnosed with colitis, you are at a greater risk of developing it too.
- Use of medicines such as ibuprofen and aspirin that have irritated the colon.
- Viruses that may trigger an inflammation response. Some scientists believe that after an infection, the immune system forgets to “turn off” and then it starts attacking otherwise healthy cells in the body such as in the colon.
- Environmental factors. Where someone lives can affect their chance of developing ulcerative colitis and this suggests that some environmental factors are at play. This could be certain diets, air pollution and the use of medicines. Countries where there is improved sanitation tend to have an increased number of people diagnosed with colitis. This implies that exposure to bacteria or not may affect a person’s risk of developing colitis.
How is colitis diagnosed?
Inflammatory bowel diseases can affect anyone of any age, but the most common age for diagnosis is between 15 and 40 years of age. Usually, a person is diagnosed with ulcerative colitis after a series of tests and examinations. Firstly, the GP is the usual port of call when a person develops their first symptoms of the condition.
The first symptoms that often trigger an appointment with a GP and later a referral to a specialist are persistent diarrhoea, blood and mucus in the poo, as well as other symptoms such as anaemia and fatigue.
The GP will often make a referral to a gastroenterologist where there are often further investigations carried out such as a sigmoidoscopy or colonoscopy. A sigmoidoscopy uses a thin, flexible tube containing a camera that is inserted into the rectum and travels up through the colon. During the sigmoidoscopy, the doctor can also take a sample of the colon lining for a biopsy. The sample is tested in the lab. A sigmoidoscopy can be uncomfortable, so a sedative is usually given to help the person relax. It’s quite a quick procedure though, so you can expect it to be over within about 15 minutes.
A sigmoidoscopy only looks at the rectum and the lower part of the colon (the sigmoid colon). If the doctor believes that more of the colon is affected, then he/she may perform a colonoscopy which is similar but views more of the colon.
For a colonoscopy, the whole bowel needs to be emptied. This means that the person must take strong laxatives and eat a very restricted diet in the days leading up to the procedure. This procedure takes around half an hour or so.
How is colitis treated?
Treatments for ulcerative colitis vary and depend upon the stage and severity of the person’s condition. The treatments are designed to reduce symptoms and induce remission as well as maintain remission. Sadly, as mentioned, there is no cure for colitis and although people can remain in remission for extended periods, it is a condition that they will have to manage for their whole life.
Controlling symptoms, inducing and maintaining remission usually involves taking different medications. Sometimes surgery is an option too.
To treat symptoms and help someone stay in remission, medication is used. These medications include aminosalicylates, corticosteroids and immunosuppressants.
These medications are known as 5-ASAs and they are medicines that reduce inflammation which allows the tissues in the colon to heal. Aminosalicylates are usually the first port of call when it comes to treating colitis, especially in mild to moderate cases.
5-ASAs are also used for flare-ups in the short term. In the long term, they work as a medicine to help maintain remission and can be taken for the rest of a person’s life.
5-ASAs are taken by mouth in a tablet or capsule or can be taken as a suppository or through an enema too. The method of taking 5-ASAs depends on how severe the condition is. Normally, someone begins taking this medicine as a suppository or as an enema. However, if it doesn’t work too well, they will also add in a capsule or tablet form.
Unfortunately, there are some side effects with 5-ASAs.
- Abdominal pain.
- A rash.
Corticosteroids (often shorted to ‘steroids’) are medicines such as Prednisolone. They also work to reduce inflammation. They are an alternative to 5-ASAs or can also be used in addition to them if 5-ASAs are not working on their own. A person can take steroids by mouth in tablet form, or through an enema or suppository.
However, steroids are for short-term use only. Using them for long periods can be dangerous and can cause serious side effects that include osteoporosis (weakening of the bones) and cataracts.
They also have some other side effects including:
- Weight gain.
- An increase in appetite.
- Mood changes/mood swings.
- ‘Moon face’.
Medicines such as azathioprine and tacrolimus are immunosuppressant medications that are used in treating colitis. They work by reducing the immune system’s activity – they suppress it. Normally, these medicines are taken in tablet form and they help to treat mild or moderate flare-ups of the condition. They can also be used to help maintain remission if other medications haven’t worked.
Immunosuppressants work very well in these cases, but they do take a little longer to start working than other options.
However, there is a risk with taking immunosuppressants too. They make a person much more vulnerable to infection, including COVID-19. People who regularly take immunosuppressant medication are classed as Extremely Clinically Vulnerable and were advised to shield during the pandemic. Taking immunosuppressants also lowers the production of red blood cells in the body and so can make a person more prone to anaemia.
Treating more severe flare-ups
If a person has a severe flare-up, their treatment cannot be managed at home. They are often admitted to hospital so that they can lower any risks that are associated with a severe flare-up such as dehydration and colon rupture – a severe and life-threatening complication of ulcerative colitis.
As an inpatient, medicines and fluids are given intravenously. The medicines may include a corticosteroid and/or an immunosuppressant such as infliximab or ciclosporin.
This drug is given to a patient via a drip in their arm. The infusion is usually continuous for a week and is given very slowly.
There are some side effects of this drug, however, which include:
- Increased hair growth.
- Nausea and vomiting.
- Swollen gums.
It can also cause high blood pressure as well as reduce liver and kidney function, so a patient will have their blood and blood pressure closely monitored whilst they are in hospital.
JAK inhibitors are a relatively new kind of medicine that is used to treat ulcerative colitis. These drugs include filgotinib and tofacitinib. JAK inhibitors work by blocking enzymes in the body that the immune system responds to with inflammation. They are taken as tablets and they are often prescribed to people with severe ulcerative colitis if other methods have not worked or are not appropriate.
However, JAK inhibitors cannot be used by pregnant women, and women of childbearing age must use a reliable contraceptive whilst they are taking the drug and for a minimum of one month after.
Biologic medicines work by focusing on the immune system’s proteins that normally stimulate inflammation. They block the action of the receptors and therefore reduce inflammation. Biologic medicines are used when a person’s colitis is moderate or severe, or if other treatment options are not working.
Biologic medicines are given intravenously so require hospital admission and they must be given every one to three months. They can also be given as an injection every one to four weeks, depending on the severity of the condition.
A final option for people who suffer severely from ulcerative colitis and for whom other avenues haven’t proved successful is surgical intervention. This is particularly suitable for people who have frequent or unremitting flare-ups that affect the person’s quality of life.
Such surgery involves removing some or all of the colon (a colectomy).
With the colon removed, the small intestine is used to pass waste out of the body, normally in one of two ways:
- An ileostomy
An ileostomy is where the small intestine is directed to come through a person’s abdomen as a stoma where a special bag is worn to collect the waste.
- An ileoanal pouch (a J-pouch)
A J-pouch is where the small intestine is used to create a pouch inside a person’s abdomen. This collects waste and is connected to the anus, which allows the person to poo normally.
Surgery is a drastic option. However, without a colon, colitis does not come back again as the source of it has been permanently removed. However, such surgery will have a significant impact on a person’s life.
What is it like living with colitis?
Although many people share symptoms and experiences, colitis can be a very individual condition that is dependent on a number of factors. However, there are a few things that people can do to help them cope with their condition, both physically and mentally.
Many people with colitis change their diet in some way to help them cope with symptoms and to help them ensure they are getting good quality nutrition. Some people may find they need to avoid certain foods that trigger off some of their symptoms. During flare-ups, many people also find that they can’t always eat well.
Many people find they need to limit their fibre intake and generally this means reducing fruits and vegetables and all the goodness they can bring. Others may find carbohydrates more difficult to digest, resulting in bloating or diarrhoea. There’s also some research which shows that excess alcohol can trigger flare-ups.
Aside from these issues, many sufferers may also find that they are lactose intolerant and some also have coeliac disease or a wheat sensitivity. As such, many people also follow dairy-free, gluten-free or low-FODMAP diets.
It’s important to ensure that you’re having the right balance of nutrients, and this is not always possible when suffering from colitis. As such, many people take supplements such as iron, Vitamin D, Vitamin B12 and calcium.
Stress and emotional wellbeing
There is no definitive proof that stress affects the gut but, anecdotally, many people report that their colitis flares at times of stress. Fortunately, there are a few ways that you can manage stress levels to help keep colitis flare-ups at bay.
- Yoga or meditation.
- Joining a support group either in person or online.
- Seeking out counselling.
In addition to the above, it’s important that those with colitis have supportive families that try and understand what they are going through. There are ways that family and friends can learn about ulcerative colitis so that they can be a support to the sufferer.
There also should be reasonable adjustments made to schools and workplaces to ensure that someone with colitis has things in place should they need them. This may be access to an accessible toilet and/or a pass to leave lessons at school when required, for example.
Ulcerative colitis and women
Women may react differently to colitis due to hormonal changes. With colitis, it is still possible to become pregnant, but it might be a little more difficult if the disease is in an active state. Conceiving isn’t recommended during a flare-up. Also, certain medications are not compatible with trying to conceive such as JAK inhibitors. Women with active inflammation also tend to have reduced fertility.
Women usually have healthy pregnancies even if they have colitis. However, if the disease is active during the pregnancy, there is a risk of complications including miscarriage, stillbirth, developmental defects and premature delivery. Women need to discuss trying to conceive with their doctor if they have colitis.
Final thoughts on ‘What is Colitis?’
Colitis is a debilitating inflammatory bowel disease that is lifelong and causes significant symptoms for the sufferer. Whilst there are treatments available, it is not a case of ‘one size fits all’ and many people have to try multiple treatment options before they find one that works for them.
If you are suffering from colitis or know someone who is, there are many places you can access for support: