Ulcerative colitis is a type of inflammatory bowel disease (IBD). Along with Crohn’s disease and unclassified IBD, it’s one of the most common types of IBD. According to Crohn’s & Colitis UK, half a million people in the UK are living with Crohn’s or ulcerative colitis – almost double that of the previously estimated 300,000.
Ulcerative colitis is a lifelong condition and its symptoms can have a significant impact on quality of life. However, while there’s currently no cure, lifestyle changes and treatment like medication and surgery can help with managing the condition.
Here, we’ll look closer at ulcerative colitis – including symptoms, causes, treatment options, and ways to cope. Throughout the article, we’ll also hear from Vicky, 40, who was diagnosed with ulcerative colitis in 2013.
What is ulcerative colitis?
Ulcerative colitis is a type of inflammatory bowel disease (IBD) that causes the immune system to attack the gut lining. Parts of the colon and rectum become swollen, inflamed, and ulcerated, causing symptoms like diarrhoea, extreme fatigue, and blood in stools.
Ulcerative colitis is a lifelong condition, but there’s support and treatment available to help people manage their symptoms and live well. The condition can affect anyone, but it’s most commonly diagnosed between the ages of 15 and 40.
There are three main types of colitis, categorised by how much of the large bowel is affected. These are…
- Proctitis – causes inflammation that affects the rectum only
- Left-sided colitis (also called distal colitis) – affects the rectum and left side of the colon
- Total or extensive colitis (also called pancolitis) – affects the majority of the colon and rectum
The term ‘colitis’ in general means ‘inflammation of the colon’, and is what we’ll refer to in this article.
What are the symptoms of ulcerative colitis?
Everyone experiences ulcerative colitis differently, but some of the most common symptoms include…
- Frequent diarrhoea (six or more times a day), which may contain blood, pus, or mucus
- Severe abdominal pain
- Needing to poo often and urgently
- Extreme fatigue
- Weight loss
- Loss of appetite
Some people also experience symptoms in other parts of their body. For example, in the form of mouth ulcers; painful, swollen joints; irritated, red eyes; and areas of red, painful, or swollen skin.
It’s common for people with colitis to fluctuate between periods of good health (known as remission) and flare-ups – which is when symptoms become more active. You might go weeks or months with very mild symptoms or no symptoms at all before having a flare-up. Alongside the more common symptoms, severe flare-ups can also cause shortness of breath, high temperature, and a fast or irregular heartbeat.
Vicky says, “My symptoms came on very suddenly and progressed quickly. It started with an urgency to use the toilet immediately, and then I started having accidents quite a lot and was passing blood too.
“I think the hardest thing for people to understand about colitis is the fatigue. Everybody understands the stomach cramps and needing to go to the toilet, but the fatigue – and the brain fog that comes with it – is debilitating. Fatigue isn’t just feeling tired – it feels like your body is made of concrete and you’re walking through treacle.”
Ulcerative colitis and mental health
Research has identified a link between IBD and mental health – and there are a few reasons why.
Ulcerative colitis can be unpredictable and significantly impact daily life. For example, some people experience disrupted sleep and low mood, and may fear leaving the house due to fear of having an accident.
Diagnosis can also come as a shock to some people, as it’s not uncommon for the condition to develop suddenly – even if you’ve never experienced gastrointestinal issues before. Plus, because there remains a level of stigma and misunderstanding around IBD, many people suffer in silence.
As such, studies have found that people with ulcerative colitis are more likely to experience depression or anxiety than those without the condition. In fact, one third of people with IBD are believed to experience anxiety, and a quarter experience depression.
There’s also evidence that the connection between IBD and mental health works both ways. This study found that anxiety and depression exacerbated symptoms of colitis – and those with depression had more frequent flare-ups.
The gut-brain axis (which is the connection between the gut and central nervous system and how they influence each other) helps to explain this connection. Simply put, the gut and brain are in constant communication with one another. And, interestingly, research suggests that the gut microbiome can influence brain signals and activate the areas of the brain responsible for regulating emotions.
Vicky says, “Having colitis affected my mental health massively. I became really housebound, I was afraid to leave the house, and I felt like I was being a huge burden to everybody. It really gets you down.
“But I’d also say, in many ways, it made me strong too. My daughter was only young at the time and when you’re a mum, you really have to try your best to power through.”
Ulcerative colitis and bowel cancer risk
In some cases, ulcerative colitis can increase the risk of bowel cancer due to ongoing inflammation.
According to Crohn’s and Colitis UK, this risk increases around eight to 10 years after colitis symptoms first start.
How much of your colon is affected by colitis can also influence your risk. Research shows that the risk of cancer is highest if all, or most, of the colon is affected (total, extensive, or pancolitis). Meanwhile, proctitis (colitis in the rectum) carries a risk that’s less or no greater than that of people without the condition.
If you have an increased risk of bowel cancer, you’ll be offered regular colonoscopies to check for early warning signs. Keeping your symptoms under control can also help to prevent future risks.
You can read more about the link between ulcerative colitis and bowel cancer on the Crohn’s and Colitis website.
What causes ulcerative colitis?
The exact cause of ulcerative colitis remains unknown. However, there are a few theories.
Many experts believe that colitis is an autoimmune condition. Either, ulcerative colitis may cause the immune system to mistake healthy bacteria (which support digestion) for an infection. Or, it may be triggered by the immune system responding to a viral or bacterial infection, but then never ‘switching off’ once the infection has passed.
Other research has put ulcerative colitis down to missing gut microbes, inherited genes, and environmental factors like medicine, diet, and stress. It’s possible that a combination of factors could play a role.
How is ulcerative colitis diagnosed?
To diagnose ulcerative colitis, your GP will ask you about your symptoms and check for signs of the condition, such as stomach tenderness.
They may also take a stool sample to check for signs of infection, such as gastroenteritis, which sometimes has similar symptoms to colitis. Blood tests may be carried out too, to check for inflammation in other areas of the body.
If your GP suspects you have IBD, they’ll refer you to a specialist for further tests. This may include an X-ray, CT scan, or a detailed examination of your colon and rectum through a sigmoidoscopy or colonoscopy, during which a small sample of bowel tissue may be taken.
Crohn’s and Colitis UK has more information on how ulcerative colitis is diagnosed on their website.
Note: Being diagnosed with colitis can come as a shock, and it’s normal to feel overwhelmed. But you’re not alone. If you’re struggling to come to terms with your diagnosis, Crohn’s and Colitis UK have a confidential Helpline where experts are happy to answer any questions or worries you might have.
What are the treatment options for ulcerative colitis?
Anyone diagnosed with ulcerative colitis will be cared for by an IBD specialist and a team of health professionals. They’ll be there to help you with everything from treatment information to rapid care during flare-ups.
While there’s currently no cure for ulcerative colitis, there are treatment options which can help people manage their symptoms. The right treatment for you will depend on the severity of your symptoms and how much of your bowel is affected.
The most common treatments for ulcerative colitis include medication and surgery. Some people also find that certain lifestyle changes help their symptoms, which we’ll cover in the following section.
Medicines
Most people with ulcerative colitis will be given medication to treat their symptoms.
Aminosalicylates (ASAs), which work to reduce and control inflammation, are often the first option. Corticosteroids may also be prescribed to get inflammation under control quickly, but they’re not suitable for long-term use.
If you have frequent flare-ups and ASAs aren’t keeping your inflammation under control, you may be offered alternative medication, such as immunosuppressants. You can read more about these on the NHS website.
Surgery
If ulcerative colitis is significantly affecting your quality of life, you develop severe complications, or your symptoms aren’t responding to medication, surgery may be an option.
Surgery for ulcerative colitis involves permanently removing the colon. After surgery, your small intestine will be used to pass waste from your body, instead of your colon.
The main types of surgery for colitis are…
- Ileostomy (stoma) surgery – the small intestine is diverted out of a hole made in your tummy. After surgery, stoma bags are placed over the opening to collect waste.
- J-pouch surgery – involves removing the colon and rectum and joining the small intestine to the anus. A pouch is made from the small bowel, which can store poo until you’re ready to go to the toilet.
Many people think surgery is the final treatment option for ulcerative colitis, but this isn’t always the case. Some people choose to undergo surgery because, once the colon is removed, ulcerative colitis can’t come back.
Vicky decided to have ileostomy surgery in 2016. She explains the huge difference that having a stoma has made to her life…
“Deciding to have surgery gave me my life back. I’d been housebound, in severe pain every day, was down a lot, and I felt like my daughter didn’t have the mum she deserved. Having surgery took all of that away, immediately. The recovery was a lot quicker than I anticipated too.
“There are things you have to think about when living with a stoma. For example, you have to watch what you eat a little bit. But for me, it’s a million times better than being ill.
“You also don’t have to have a bag forever, as there are other options like J-pouch surgery. I’ve just chosen to stick with having a bag because it suits my lifestyle.”
4 tips for living with ulcerative colitis
1. Take care of your mental health
Living with colitis can trigger lots of different emotions. You may feel anxious, scared, frustrated, or worried about the future. Long-term health conditions can be difficult to come to terms with and it’s normal to feel this way. But it’s important to allow yourself the space to process and accept your feelings.
If you’re struggling with your mental health, you might find our articles, 10 things you can do to help yourself through feelings of depression and 7 tips for coping with stress and anxiety, useful. The healthy mind section of our website also has information on counselling and therapy services if you feel you’d benefit from extra support.
2. Learn what works for you
Everyone’s experience of ulcerative colitis is different, so there’s no one-size-fits-all formula for managing symptoms. This often means that it can take some trial and error to find out what works best for you.
For example, some people find that lifestyle factors like diet, stress, and caffeine influence their symptoms, while others say they have no bearing at all. There’s also evidence that complementary therapies, such as yoga, mindfulness, probiotics, and curcumin (a natural anti-inflammatory found in turmeric), can sometimes help with colitis symptoms.
Using a diary to track your symptoms can be a useful way to identify potential triggers.
This advice stands for people who’ve had surgery too, as Vicky explains: “After surgery, the stoma nurses are able to give you a little bit of advice around what you should and shouldn’t eat. But I found it was more a case of learning what worked best for me.
“For example, I was told I’d never be able to eat foods like nuts or fruit with skin again because they can cause stoma blockages. But I’ve found I’m actually able to eat most things – the only foods I completely avoid now are sweetcorn, barley, and mushrooms!”
3. Plan ahead
For people with colitis, leaving home, even for short periods, can be daunting. You may worry about having an accident or what you’ll eat while out and about.
However, planning ahead, for example, by checking out restroom facilities and meal options, and packing extra clothing in case you need to change unexpectedly, can lower anxiety and give you back some control.
4. Create a support network and be open with loved ones
Some people with colitis struggle to open up to others about the condition. But, having a strong support network of people you trust and can rely on can make all the difference.
Vicky says, “Having a really good support network was key for me. Being able to lean on friends and family, and also connecting with other people going through the same thing via social media support groups really helped me to cope.
“Colitis isn’t something you should be embarrassed about. Let’s face it, everybody poos! And being open about what you’re going through allows people to understand and learn how they can support you.”
If you’re finding it difficult to open up to people, Crohn’s and Colitis UK have some useful resources on their website. For example, they offer a personalised talking toolkit, which offers tips if you’re struggling to find the right words.
Alternatively, if you’d like to connect with other people going through the same thing, you could consider joining one of Crohn’s and Colitis UK’s local networks. These aim to bring local people affected by Crohn’s and Colitis together through educational talks and social events, empowering them with the support and confidence to live freer, fuller lives.
Final thoughts…
Being diagnosed with ulcerative colitis can be a shock, and you might wonder what life with the condition will look like. It’s normal to feel overwhelmed, but remember that you’re not alone, and there’s plenty of hope for the future.
Vicky says, “With the right support, treatment, and care, it’s entirely possible to live a full and happy life with ulcerative colitis.”
For further reading, head over to the general health section of our website.
Do you have any experience of living with ulcerative colitis that you’d like to share? We’d be interested to hear from you in the comments below.
