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After being diagnosed with Crohn’s disease you may be left wondering what to expect from your future and how the disease is going to affect your day-to-day life. In this article we take a look...
Crohn’s disease is known as a relapsing and remitting disease. This means that there will be periods when you are well and periods when you are unwell. You may hear people referring to these as flare ups (or Crohn’s disease attacks) and remission.
Doctors don’t fully understand what causes people to have flare ups of their Crohn’s disease and they can often happen suddenly. This unpredictability can be difficult when it comes to carrying out day-to-day activities such as working, socialising and looking after children or planning future activities such as trips or holidays. To help with managing this impact you may find it useful to talk to your family and workplace about your Crohn’s disease and the way it can affect you and put in place some plans in case you become unwell. You could also take out a specialist travel insurance to cover your Crohn’s disease in case you need to change your plans, however this will probably cost you more than standard travel insurance.
There have been many advances in treatments for Crohn's disease in recent years which help to control flare ups and get you into remission. There is also a better understanding and public awareness of Crohn’s disease meaning that more and more people with the condition are able to live a fulfilling life.
As Crohn’s disease is a life-long condition it’s completely normal to feel overwhelmed when you are first diagnosed by the emotional impact having a chronic disease can have. You may feel confused, angry, anxious, upset, sad, lonely or any number of other feelings. You may find it helpful to talk to family or friends about how you feel, or you could ask your doctor if there is someone, such as a counsellor or psychologist at the hospital they could refer you to or a charity or support group you could speak to.
As you go through life you may find that your Crohn’s disease has an impact on your mental wellbeing, especially during flare ups. Again, this is completely normal and being honest and open with people you trust and your IBD doctors or GP can make sure you receive any support you may want or need.
It’s likely that you will need to take medication for the rest of your life. You will also need to attend regular appointments with a doctor who specialises in Crohn’s disease, known as a gastroenterologist. At these appointments you will be asked to talk about the symptoms you are having (including any toilet-related symptoms) and you may be asked to provide some samples of blood and/or poo. You will also need to have regular endoscopy tests - where a camera on a long, thin tube is inserted into your mouth (gastroscopy) or bottom (colonoscopy). These tests may feel invasive and embarrassing, but they are really important in helping to monitor your Crohn’s disease and checking if your treatment is working.
The aim of your treatment will be to get you into clinical remission so that your disease isn’t active and you aren’t experiencing Crohn’s disease symptoms. Finding the right treatment for you can take some time and you may need to try several different ones. Tests are now becoming available, such as PredictSURE IBD, a biomarker test which can help predict whether you will have a more ‘mild’ or ‘aggressive’ form of Crohn’s disease. The results from this can then be used to help target your treatment better, meaning you may find a medication that works for you sooner. If you are predicted to have milder disease you can also have greater confidence in less frequent monitoring by your doctor.
If your Crohn’s disease isn’t kept under control then you may be at risk of some complications such as strictures, abscesses and fistulas which may result in you needing surgery, deficiencies and malnutrition and some types of cancer. You can find out more about all of these in this article: How serious is Crohn's disease?
Having Crohn’s disease can also place you at greater risk of developing some other conditions. This can include other autoimmune conditions such as rheumatoid arthritis, psoriasis and ankylosing spondylitis. You may also find that other parts of your body can be affected, such as your eyes, skin and teeth.
A flare up is when you have Crohn’s disease symptoms and/or markers in your bloods or stool (poo) which show that inflammation levels in your body are raised. A flare up may also be confirmed by endoscopy tests (such as gastroscopy or colonoscopy). During a flare up the inflammation in your digestive system caused by your Crohn’s disease may cause damage to your insides, so it’s really important to let your doctor know if you are having symptoms such as pain, nausea, diarrhoea, vomiting or blood in your poo which aren’t being brought under control by your treatment. Getting the inflammation under control is the main aim of your treatment so if it isn’t working then your doctor may want to change your medication.
What a Crohn’s disease flare up (or Crohn’s disease attack) feels like is different for everyone depending on the severity of your Crohn’s disease and the symptoms it gives you. You may also find that each flare up you have is different from the last one. Over time you may start to recognise some signs that a flare up is beginning, meaning you are able to react quicker by speaking to your doctor.
If you are in a flare up then it’s likely that it will have a significant impact on how you live your day-to-day life. It may cause you to need to change plans and adapt how you live your life. If you experience diarrhoea and/or urgency then you may want to make sure you are always near a toilet and this means you may choose to avoid doing activities that mean you are away from facilities. There are some patients who report having ‘accidents’ when they are unable to make it to a toilet in time so many people carry spare clothes and wipes with them in case this happens. Similarly if you experience vomiting during a flare this may make you anxious about leaving the house or bathroom facilities.
Pain, such as in your abdomen, can be a common symptom of a Crohn’s disease flare up and having bouts of pain can make it difficult to sleep, exercise, study or work. It’s also likely you will also feel extremely tired. This tiredness is known as fatigue.
All of these symptoms can make it difficult to work during a flare up. In the UK many people with Crohn’s disease are classed as having a disability under the Equality Act 2010 which means that your employer may be required to make reasonable adjustments to allow you to work. You can read more about your work rights in this guide from Crohn’s & Colitis UK.
Some things you could try to make things easier when you are in a flare up include:
Remission is when your Crohn’s disease isn’t active and there is no inflammation in your digestive system. When doctors have evidence that there is no inflammation (such as from blood, stool or endoscopy tests) they may refer to your remission as clinical remission. If the markers are showing that you still have inflammation, but you are having no Crohn’s disease symptoms then this is called symptomatic remission.
Once in clinical remission some people remain well for many years. Being in remission should mean that you can live your life fairly normally, if not completely normally. Some people even forget that they have Crohn’s disease when they are in remission. However, it’s really important that you don’t forget to follow your treatment plan to keep you well.
To help you understand more about what to expect with Crohn’s disease you may want to read stories from other people who have it.