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If you have just been diagnosed with ulcerative colitis, or UC as it’s often called, you are probably wondering what it means for your future and day-to-day life. In this article we take a look…
As a relapsing and remitting disease you can expect to have periods where you are well and times when you are unwell from your ulcerative colitis. When your UC symptoms get worse this is known as a flare up and when there is no sign of your UC being active this is called remission.
It isn’t yet known exactly what can cause you to have an ulcerative colitis flare up and it may feel like the symptoms come on very suddenly with little warning. Unfortunately due to the unpredictable nature of ulcerative colitis it does mean that you may live with some uncertainty when it comes to your day-to-day life and planning ahead. It can be difficult for other people to understand this so you may want to talk to your family, close friends and workplace about how it can affect you and so that you can come up with some plans for childcare, work etc in case you do become unwell at short notice. You could also consider taking out some specialist travel insurance for people with ulcerative colitis. This will probably be more expensive than standard travel insurance but will give you peace of mind in case you need to cancel holidays and trips due to your UC.
It may be disheartening to learn that ulcerative colitis can be unpredictable, however there have been many advances in treatments for ulcerative colitis, and many others coming to the market all the time, which are effective in controlling flare ups so that you can live a good quality of life. Awareness of ulcerative colitis is also growing all the time, meaning that many more people have a better understanding of the support that can help people with UC.
Hearing that ulcerative colitis is a life-long condition may cause you to feel emotionally overwhelmed at first. It’s perfectly normal to feel confused, angry, upset, sad, lonely or a number of other feelings. Sharing these feelings with loved ones may help you. You could also ask your doctor if there is someone professional they could refer you to, or a charity or support group they can put you in touch with. These feelings may come and go throughout your life with ulcerative colitis, having an impact on your mental wellbeing. This can particularly be the case during flare ups. This is also completely normal and being honest with people around you can help you to find ways to cope. Your IBD team may have a psychologist available to them that they can refer you to for support.
Most people with UC will need to take medication for the rest of their life and you will also need to attend hospital appointments regularly to see your gastroenterologist (the IBD doctor who treats people with ulcerative colitis). Your appointments will include talking about your symptoms (including lots of talk about poo!) and you may need to do some tests such as blood tests and/or stool tests. You will also be asked to attend regular colonoscopy tests (also known as a ‘scope’). This is where a camera on a long, thin tube is inserted into your bottom and pictures of the inside of your bowels are projected onto a screen for the doctor to look at. How frequently you need to have ‘scopes’ will depend on how long you have had your ulcerative colitis. Your doctor should be able to tell you more. Colonoscopies may seem embarrassing and invasive, but they are really important in helping to monitor your ulcerative colitis, check if your treatment is working and keeping an eye out for any other changes to the bowel such as cancer (read more about ulcerative colitis and bowel cancer risk).
The medication that you take will try to get you into clinical remission, so that you don’t have active ulcerative colitis and you don’t get any UC symptoms. However, finding a treatment that does this can take a bit of time and you may need to try several different medications before finding one that works for you. This can be frustrating. There are tests now becoming available, such as PredictSURE IBD, which can help predict whether you will have a more ‘mild’ or ‘aggressive’ form of ulcerative colitis. This biomarker test can be used by your doctor to help find the best treatment for you, meaning you may not need to try as many different medications to get your symptoms under control. It can also give patients who are predicted to have milder disease more confidence that they can have less frequent monitoring of their UC.
It’s important that a treatment is found to get your ulcerative colitis under control and into remission so that you can live a better quality of life, but also to prevent some complications which can arise out of having active UC. You can find out more about some of these complications in this article: How serious is ulcerative colitis?
As well as these complications ulcerative colitis can also place you at greater risk of developing some other conditions, including other autoimmune conditions or conditions affecting other parts of the body such as your eyes, skin and teeth.
In a flare up your ulcerative colitis symptoms get worse and/or your blood/stool tests show that you have raised inflammation levels in your body. A flare up can also be seen on the bowel of your lining when a colonoscopy is being done. When you are having a flare up the inflammation in your large intestine can cause damage to your bowel which can lead to some unpleasant symptoms and also some longer term complications. If you start experiencing a change or increase in your symptoms (such as blood or mucous (slime) in your poo, diarrhoea, urgency to poo, tummy pain) you should let your doctor or IBD team know as soon as possible. They can then work with you to adjust your medication to the inflammation and get your flare up under control.
How a flare up of ulcerative colitis feels is different for everyone and you may find that each flare up is different. Generally people with UC experience an increase in bowel movements and blood in their poo during a flare up, but this doesn’t always happen. As time passes you may start to recognise some of the signs your body gives you that your ulcerative colitis is about to start flaring, meaning you can speak to your IBD team more quickly.
Having flare ups is likely to have quite significant impacts on your day-to-day life, meaning you may need to make some adaptations during times of flare. This may include changing plans at the last minute, making sure you are always near a toilet if you experience diarrhoea and/or urgency. Some people with UC have ‘accidents’ during flare ups where they soil themselves because they haven’t been able to make it to the toilet in time. This can be understandably embarrassing. To help in case this happens it’s a good idea to carry spare clothes and wipes with you during flare ups.
Some people with ulcerative colitis also get tummy pain during a flare up which can make it difficult to concentrate on activities, hard to sleep, exercise, study and work. Flare ups can also cause you to feel extremely tired. This tiredness is called fatigue and people often find that it doesn’t go away by having a good night’s sleep.
A UC flare up can make it very difficult for many people to work. In the UK the Equality Act 2010 classifies people with ulcerative colitis as having a disability, meaning your employer may need to make reasonable adjustments so you can work. You can read more about your work rights in this guide from Crohn’s & Colitis UK.
Everyone finds different things help them during a flare up, but some things you could try include:
If you are in remission for your ulcerative colitis it means that your UC isn’t active and there’s no inflammation in your large intestine. Your doctor will confirm this by doing blood and stool tests, and maybe also a colonoscopy. When a doctor confirms your remission it is known as clinical remission. Your doctor will probably ask you to continue with your treatment to help maintain remission, but they may adjust your medication or dosage.
Sometimes the doctor may still be able to tell that you have inflammation in your body, but you are not having any symptoms of ulcerative colitis. This is called symptomatic remission. If you are in symptomatic remission it’s important to remember that you still have inflammation in your large intestine even if you feel well so you should continue to take your treatments as prescribed by your doctor.
When in clinical remission it is possible to stay there for many years and live a normal life. Some people even forget that they have ulcerative colitis.
If you want to find out more about what to expect when you have ulcerative colitis you can read stories from other people here.