Inflammatory Bowel Disease

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 disease and persistent psychological stress. However, stress factors may have an influence on the course of the disease.^[2][3]

Living with a life-long and often painful condition like UC or CD can trigger fear and worry and increase your levels of stress about all different types of practical issues.^[4] You may, for example, worry about how to tell people around you about your condition. Telling your friends or colleagues about your illness 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.^[5] Depression does not simply involve feelings of sadness; it is a complex condition with many symptoms.^[5] These can include:^[4][5]

• Feeling really down for more than a few weeks
• Losing interest in things you used to like
• Feeling empty and isolated, ‘not good enough’ or like the world would be better off without you

Whilst coming to terms with a diagnosis of IBD may not be easy, it is important that you understand that you are not alone, and that there are many people like you out there, 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 in the same situation as you, who understand you, sharing your emotions and getting involved can really change your outlook on your IBD. Simply listening to someone who has the same condition as you can be reassuring.^[6]

To find out about local communities and patient associations that can help, please see here.

One of the most important steps you can take is adjusting your diet in order to find out which foods trigger flare-ups and you’ll need to avoid. It’s important to avoid gassy foods, only eat a moderate amount of fibre, and avoid large meals.^[7] You should also pay attention to what you eat before experiencing a flare-up so you can recognise your trigger foods. These will vary per person and will take some time to determine. Try keeping a journal of everything you eat and talk to a dietician about alternatives if you’re unsure.

One of the biggest issues that those living with IBD can face is the fear of becoming socially isolated.^[8]

Remember you are not alone and in addition to connecting to local communities and patient associations, your family and friends want to help and support you. Let them learn with you and don’t feel guilty if your plans need to change – do what is right for you and your family and friends will understand and will want what is best for you. Below are some helpful tips, as well as our LEXICON which may help with starting difficult conversations.

• Speak to family and friends – being open about your problems can help them understand
• Explain that plans may need to be cancelled last minute. Not everyone will always be understanding, but it is important that you prioritise your health. You should not feel guilty if you need to leave early or even not attend at all
• Your friends may have questions that seem strange, but accept that people without IBD don’t know much about it
• They might also make silly suggestions, or tell you things you already know. Remember that they are trying to help, so simply explain that you are managing your condition and that you understand what works best for you

IBD can get in the way of intimate relationships. Here are some tips to help you manage the situation a little better:

• Be honest with your partner: Openly communicate your feelings. Explain the emotional and physical impacts of IBD, and how this can impact intimacy
• It may be helpful to explain that sometimes there is a disconnect between how you feel emotionally and how you feel physically
• Be prepared for some difficult conversations; not all potential partners will understand your apprehensions. You may have to decide whether or not that person is right for you

More information can be found on the websites listed in the relevant section on our ‘useful websites’ page.

Living with IBD can make the thought of leaving the house — whether for work, education, or even just to go to the shops — a little daunting. 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! IBD shouldn’t stop you from doing the things you like.

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. Items you might want to consider packing include:

• Toilet paper or wet wipes
• Antibacterial hand gel
• Clean underwear

• Employers and educational establishments have a responsibility to try to accommodate any reasonable health-related requests. If you are a student, you might find it useful to let your teachers or student services know about your requirements. Similarly, if you are in employment, you could inform your line managers or human resources. In each case, they may be able to make provisions for flexible working arrangements, deadline extensions etc.
• If you are in an office, see if you can be seated in an area with easy access to the bathroom, or sit near the door of your lecture theatre/classroom

For many people, work is an important part of life, and your IBD shouldn’t stop you continuing your education or career or having the job you want.

• When travelling abroad, use only 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

Extreme fatigue is a common aspect of living with IBD. Although it may not be apparent to others, it can have an enormous impact on all aspects of your daily life, including work, education, socialising and relationships. It is important to ensure you are getting enough sleep and making time to rest and since fatigue isn’t visible, you’ll have to communicate with your friends and family about how you feel. Sometimes, you’ll need to leave gatherings early or decline invitations altogether. Over time you’ll learn how much you can handle and eventually, you’ll become an expert on budgeting your time.

The following points might be useful if you are prone to periods of fatigue:¹³

• Identify your warning signs: Learn how to recognise oncoming fatigue and be sure to take the time to rest
• Take holidays! Many people living with IBD say that even a short relaxing break can restore energy levels and make them feel more positive – both emotionally and physically
• Reserve energy: Save your spare time for things you enjoy and plan your agenda according to your needs
• Find exercise that works for you: Exercise is important for your overall wellbeing and may help you manage your IBD. If you feel well enough, you could explore gentle exercise such as yoga or light swimming, before attempting more rigorous activities
• Eat healthily: Like exercise, eating well is an important part of managing your IBD. You can make things much easier by planning meals in advance, cooking multiple portions and freezing meals so that good food is always on hand
• Get enough sleep: It is important that you get a good night’s sleep on a regular basis. Not getting adequate rest will make you feel run down and may cause flare-ups, or make them worse.

If you have IBD, it’s important to consult your doctor as soon as you decide that you’re going to try and get pregnant, so they can determine the best treatment and management plan for you. While some medications are considered safe during pregnancy, some should be avoided, so it’s a good idea to discuss this carefully with your doctors. They will give you advice on staying healthy during pregnancy and answer any questions you have about how IBD might affect a pregnancy. Local patient associations also provide support when you’re preparing yourself for parenthood.

According to available research, if you have mildly active or inactive IBD when you become pregnant, it is unlikely to get worse in pregnancy. If you become pregnant while your disease is active, it is more likely to remain active during your pregnancy.

If you are pregnant and have IBD, it’s important to take regular breaks – pregnancy can be tiring and IBD can add to this, so making time for rest is important.

Also remember to keep in touch with your doctor – if you have questions about your treatment during pregnancy/breastfeeding (not all treatments can be taken when breastfeeding), before considering stopping your medication, make sure you speak to your doctor first. They are also there to help with any worries or concerns you have so don’t hesitate to lean on them more at this time if you need to. Your doctor will be able to discuss your personal circumstances and help you cope during pregnancy and once the baby arrives.

And lastly – don’t forget to lean on your support network - having a good support network in place is important both during your pregnancy and when the baby comes, as well as not putting too much pressure on yourself to be the ‘perfect parent’. Seek additional help if you need it; remember that stress can cause IBD flare-ups.¹⁵¹⁶

Remember - most people with IBD who want to have children go on to have a healthy pregnancy and healthy baby.¹⁴