Living with Inflammatory Bowel Disease (IBD): Daily Life, Diet and Support
Inflammatory bowel disease (IBD) can have a significant impact on your life, both physically and emotionally.12 What symptoms do you get? How can you relieve them? How do you handle these new emotions? How can your friends and family help? How can you continue to do the things you enjoy? These are just some of the questions you might be asking yourself. In this section, you will find practical tips and advice to help you cope with the condition and its symptoms.
Whilst it may not feel like it at the start of your diagnosis, with a bit of planning and recognising your own triggers, you can still achieve your goals and live life to the fullest. No two people with IBD have the same experiences, but these tips should be a helpful starting point on your personal journey to help manage your daily life with IBD.
Inflammatory Bowel Disease Treatment
Managing IBD and Your Relationships with Others
One of the biggest concerns people living with IBD can face is the fear of becoming socially isolated.56 Remember that you are not alone. Your family and friends want to help and support you, alongside local communities and patient associations. Let your loved ones learn with you and know it’s okay if your plans need to change and prioritise your well-being. Your family and friends will understand and want what is best for you. Here are some useful tips which may help with starting difficult conversations:
Sharing your concerns can help them better understand what you are going through and offer more meaningful support.
Sometimes you may need to cancel last minute or leave early, and that is okay. Your health comes first. Most people will understand, especially when you communicate openly.
People may tell you things you already know or information you have already heard. In most cases, they may have the best intentions, so simply explain that you are managing your condition and that you understand what works best for you.
Intimate Relationships
IBD can sometimes affect intimate relationships, both emotionally and physically. Here are some tips to help you navigate these moments with more confidence:
Taking Care of Your Mental Health
For a long time, researchers suspected that psychological factors could be a trigger for IBD. Today we know that there is no direct connection between the onset of the disorder and persistent psychological stress. However, stress factors may have an influence on the course of the disorder.67 Living with a lifelong and often painful condition like ulcerative colitis (UC) or Crohn’s disease (CD) can trigger fear and worry, and increase your levels of stress about all different types of practical issues.38 You may, for example, worry about how to tell people around you about your condition. Sharing your illness with friends or colleagues may not seem easy.
Overthinking your situation for a long period of time may at times affect your mood and make you feel anxious or even depressed.7
Depression does not simply involve feelings of sadness; it is a complex condition with many symptoms.
These can include:89
- Losing interest in things you used to like
- A sense of hopelessness or feeling empty/numb
- Finding it difficult to fall asleep
- Feeling you are unable to concentrate
- Low confidence
Whilst coming to terms with a diagnosis of IBD may not be easy, it is important that you understand that you are not alone, as well as multiple associations, health institutions and networks that can offer advice and help you when you may feel you are struggling. Connecting with others who understand you and sharing your emotions can really change your outlook on your IBD. Simply listening to someone who has the same condition as you can be reassuring.
If you are struggling with your mental health, speak to your healthcare team.
If you need support on how to open up about your disorder, click here:
Working with IBD
Whether you’re a student or employed, inform the administrative services about your health-related requirements. In each case, they may be able to make provisions for flexible working arrangements, deadline extensions, etc.1011
If you are in an office, try to sit in an area with easy access to the bathroom. Alternatively, consider whether provisions could be made for you to work from home, if that is your preference. If you are a student, try to sit near the door of your lecture theatre or classroom.
For many people, work is an important part of life, and your IBD shouldn’t stop you from continuing your education or career or having the job you want.
Travelling with IBD
IBD should not hold you back from doing what you enjoy, including travel. With a bit of forward planning, like checking your medication, locating nearby medical support or pharmacies, travelling with IBD possible and can just be as enjoyable.
There are a number of things you can do to help reduce stress and anxiety, enabling you to be more confident when out in public for long periods of time, or even to take a holiday!12
Remember to pack some supplies: IBD can be unpredictable at times, which means uncomfortable symptoms can occur unexpectedly.
Make a ‘just in case’ kit for those emergency moments. Here are some helpful tips to keep in mind when travelling:12
- Always keep toilet paper or wet wipes with you
- Always keep antibacterial hand gel with you
- Keep spare clean underwear with you
- Use bottled water for drinking, brushing your teeth and washing food
- Avoid ice cubes in drinks, as these are often made with local water supplies
- Avoid all street food
- Do not eat any raw or undercooked foods
IBD and exercise
It’s not always easy to be physically active while living with IBD, but it is important for your physical and mental well-being. In fact, physical activity can help reduce fatigue and inflammation and could serve as a form of stress relief.13
You might find it difficult to exercise if your IBD is severe, as symptoms such as stomach or joint pain, fatigue, or the urgent need to go to the bathroom can interfere. In that case, listen to your body. Exercise takes many different forms, and you don’t have to push yourself to your absolute limits to stay active.13
Most guidelines recommend that adults aim for approximately 2.5 hours of moderate intensity activity each week. Moderate intensity exercise is activity that raises your heart rate. Here are some examples:1314
- Brisk walking
- Cycling on flat ground
- Swimming
- Dancing
- Yoga
Getting support
IBD can often leave you feeling isolated; it is important to remember that you do not have to take this journey alone; your family, friends and healthcare team are available to support you. You may also find it helpful to speak with others in a similar position to yourself.
Visit the IFCCA website to explore resources and connect with others: Go to IFCCA Website
IFCCA
The International Federation of Crohn's & Ulcerative Colitis Associations (IFCCA) represents 46 national Crohn’s and Ulcerative Colitis (IBD) patient associations. IFCCA are an organization of people united in our commitment to improve the life of over 10 million people living with IBD worldwide (3.4 million in Europe alone) and to give them a louder voice and more visibility. Want to find out more about how to manage your IBD?
There are also ways you can help in supporting yourself:
Keep a diary
Keeping a diary helps you get a handle on your feelings, as well as identify your triggers. It’s also helpful for any medical appointments to enable you to discuss any symptoms or side-effects you may have been experiencing.
Set your own pace and goals
Take each day as it comes and focus on what you can control. On good days you can set small goals such as going for a walk, calling a friend for a chat. Make a list of short and long term goals and tick off what you can. Avoid making too many changes at once, and with a bit of planning and recognising your triggers, you can still achieve your goals and live life fully.
Watch out for symptoms of depression
It is important to recognise when stress or negative feelings are turning into depression. If this happens to you, speak to your healthcare team. They may refer you to a psychologist or psychiatrist who can help you. If you’re depressed, let people know why. Some friends or family members may not understand why you feel depressed. Keep being open and honest with them and encourage them to take the same approach with you.
Stay positive
Keeping a positive mindset can be difficult, especially on a bad day, but many people with IBD lead happy and productive lives, and always remember, there are simple steps you can take to help manage the condition.
Remember to always talk to your healthcare professional to get advice if you are experiencing symptoms, especially if there has been a sudden change.
A Guide to Symptoms, Diagnosis and Management
A Guide to Symptoms, Diagnosis and Management
