Supporting someone with Crohn's or Colitis

Crohn’s Disease and Ulcerative Colitis are the main types of Inflammatory Bowel Disease (IBD). Microscopic Colitis is another type of Inflammatory Bowel Disease.

The main symptoms include:

• Tummy pain
• Diarrhoea
• Fatigue
• Weight loss

Crohn’s and Colitis can also affect parts of the body outside the gut causing mouth ulcers, joint pain, and problems with the eyes, skin, bones or liver.

Treatment for Crohn’s and Colitis varies from person-to-person. It may include tablets, injections, drips, enemas, specialist liquid foods, or surgery.

If you do not have Crohn’s or Colitis, it may be hard to understand what it's like to live with one of these conditions. You could ask the person affected to try to explain what it is like for them. But remember it’s not always easy to talk about bowel problems. Our talking toolkit might help them find the right words.

Useful points about Crohn’s and Colitis:

• They are lifelong conditions. Right now, there is no cure. Treatment can help keep Crohn’s or Colitis under control, but symptoms can flare up again.
• They affect everyone differently. You may know someone whose symptoms rarely trouble them. Others may need surgery or lifelong medicine.
• They change over time. For this reason, they are sometimes called fluctuating conditions.
• They are invisible conditions. A person may seem fine on the outside, even if they have painful and distressing symptoms.
• They are unpredictable. Symptoms can change from one day to the next.
• Crohn’s and Colitis are not contagious. You cannot catch Crohn’s or Colitis by spending time with someone who has it.

You may want to find out a bit more about their condition. There’s a lot of misleading information online, so it’s best to focus your search on reliable sources such as Crohn’s & Colitis UK or the NHS website. Our information all about Crohn’s and Colitis is a good starting point. We also have information on a wide range of topics, from food and treatment to coping with symptoms and everyday life. All our information is certified as trusted health information by the Patient Information Forum.

Before you start finding out about Crohn’s and Colitis, check how much your friend or relative wants you to know about their condition. Some people may feel their privacy is being invaded if their friends know details about the symptoms they’re having. Or that their parents are trying to take control away from them by doing all the research on possible medicines. Some people want to avoid knowing too much about their condition altogether, so telling them facts about it may be unwelcome. Discussing this beforehand, or reading about the condition together, can help avoid misunderstandings.

It’s natural to feel anxious and helpless when someone you care about is unwell. It can be hard knowing that you cannot take their condition away. The good news is that you can help them live well with it. Crohn’s and Colitis are largely hidden conditions that can cause stigma, fear and isolation. Letting your friend or relative know that you’re there for them can be a great comfort. Here, we outline some things you can do to support them.

Be there to listen if they want to talk

Sometimes they might prefer just to carry on as usual and not talk about their illness. But at other times they may appreciate someone to talk to. Take time to try to understand what they’re going through.

Help them see the funny side

Having a sense of humour about the situation can make some people feel better. It can help them realise that they do not need to be embarrassed about their symptoms in front of you. But this approach may not work for everyone.

Put yourself in their shoes

Things that seem straightforward to you can be more difficult for someone with Crohn’s or Colitis. For example, they may seem overly anxious about taking a long journey. Or appear to be fussy about when and where they’re going to eat. But quick access to toilets can be crucial, and being careful about their diet may be a way they manage their symptoms. It helps to be flexible and accommodating in your plans and to consider their needs.

Help boost their confidence

Having a negative body image and low self-esteem are common among people with Crohn’s or Colitis. When active, the conditions can lead to weight loss, hair loss, skin changes, scars, stomas, and fistulas. And some of the medicines used to treat Crohn’s and Colitis can have side effects, such as weight gain. Having a strong support system of friends and family can make a big difference to how your friend or loved one feels about themselves.  Reassuring them that you are there, and you do not see them differently can make a big difference to them.

Be understanding

Crohn’s and Colitis can be very unpredictable, which can make planning things in advance more challenging. Sometimes your friend or loved one may not be able to make it to an event, or they may have to cancel plans at the last minute. They likely feel disappointed about letting you down, so it’s important to understand that it’s out of their control. It’s helpful to reassure them that it’s no trouble to change your plans. Find a way to still involve them if possible.

Living with Crohn’s or Colitis may also have had a negative effect on their finances, for example if they have had to take time off work. This can mean some tough decisions about what they can afford to say yes to. If possible, find a way to work around their situation so they can still be involved. For example, you could go to see them at home if they’re unable to attend an evening out.

Keep them in the loop

If they’re regularly missing out on work, school or social events because of ill health, they can feel isolated. This can have a negative effect on their mental health too. Keeping them updated on what’s been going on will help them feel that they’re still part of the group. It also helps them to feel like themselves, and not like they’re defined by their condition. While it’s important to be mindful of not making them feel left out, it can be nice for them to know you have not forgotten about them.

Do not judge their food choices

The relationship with food is different for everyone living with Crohn’s or Colitis. Foods that may help one person may do nothing or even make symptoms worse in another. If you want to help by cooking for them, find out what they feel comfortable eating.

Help them find a community if they want to

Helping your friend or loved one connect with other people who know what they’re going through can really help. People with Crohn’s or Colitis who take part in events run by their hospital or our local networks often say it helps them feel they are not alone. We also offer virtual social events, which can be a great way to connect with other people even if they do not feel up to going out. But this is not for everyone, so check what your friend or family member is comfortable with.

You may be able to offer help with the practical challenges of living with Crohn’s or Colitis. But it is important not to ‘over-help’. Try to strike a balance between helping and letting your friend or loved one control their own life. As with anyone, it’s important for people with Crohn’s and Colitis to maintain as much of their independence as possible. Everyone is different, and some people appreciate more support than others. Talk to your friend or family member to find out what they need. This will vary from person to person. It could involve things like helping with housework, shopping, or childcare. The level of support they need may change as they become used to dealing with their condition, or as their symptoms vary. It’s also important that you’re not taking on more than you are able to or comfortable with.

Here are some ideas on how you may be able to help the key challenges of living with Crohn’s or Colitis.

Fatigue

Many people with Crohn’s or Colitis experience fatigue. Fatigue is ongoing tiredness, lack of energy or exhaustion that does not improve even after rest or sleep.  It can affect concentration and make it hard to remember things.

Fatigue can impact the person’s life in every way, such as their performance in school or at work, relationships, their ability to do everyday tasks and their social life. Because of this, many people with Crohn’s or Colitis say fatigue is the most difficult symptom to deal with. There are many little things that you could offer to do to help, such as

• Make a cup of tea, run them a bath, or help with the housework
• Share your class notes with them
• Plan relaxing ways to spend time together when your usual activities may be too much of a strain
• Catch-up online if they do not feel up to meeting in-person
• Offer them a lift so they do not have to drive or deal with public transport

It may sound odd, but doing exercise can sometimes help fatigue. You could suggest doing some gentle exercise together. But remember that sometimes your friend or loved one might not be able to manage even light activity.

Our information on fatigue has lots of hints and tips on how to help others living with fatigue.

Pain

Crohn’s and Colitis can cause severe tummy, joint or back pain. But there is not much good evidence to guide pain relief in Crohn’s and Colitis. You could ask what helps your friend or family member manage their pain and support them with it. Some people find hot water bottles helpful. If you make a hot water bottle for them, make sure you wrap it in a cloth or towel, so it does not scald them.

Some studies have shown that slow deep breathing and mindfulness exercises like meditation can help with pain. You can find lots of apps, online tools or in-person courses to help with this.

You could help them keep a note of their pain or other symptoms so they can spot any patterns or possible triggers.

Pain can be difficult to describe to healthcare professionals, so you could help your friend or relative find the right words. Some people describe their pain as aching, cramping, stabbing, burning, shooting, tender or throbbing. It can also be useful to tell their nurse or doctor how the pain affects their daily life. For example, “I couldn’t go to work this week, because my pain made it too hard to travel.” Or “I couldn’t look after the children yesterday because it was too painful to pick them up”.

Seeing someone you care about in pain can be distressing, especially when it feels like there’s nothing you can do. Acknowledging their pain and helping them find ways to cope with it can mean a lot. People who feel more in control and have better social support are able to cope better with their pain.

Medicines

The thought of taking medicines long-term can be overwhelming for some people. Information about medicines and their possible side effects can be scary and difficult to process. We have information on medicines used to treat Crohn’s and Colitis that you might find helpful.

You could also ask if they’d like someone to collect their prescriptions, remind them to take their medicines, or encourage them to keep taking their prescribed medicines even when they feel well.

Some medicines for Crohn’s and Colitis can be given by injection at home. This can be frightening at first, and having someone with them can put them at ease. A specialist nurse may be able to train you to help them, or to do their injections for them.

Access to toilets

People with Crohn’s or Colitis sometimes need to use the toilet urgently.  Keep this in mind when planning trips or events. Try to be patient if you end up waiting for them for a while, or if they suddenly rush off to the toilet. Some people might also experience bowel incontinence. We have separate information about managing bowel incontinence. This includes tips on helping them prepare if they’re worried about bowel incontinence or bowel leaks while out.

You could encourage your friend or loved one to become a member of Crohn’s & Colitis UK, or gift membership to them. By doing this they will get a ‘Can’t Wait Card’, which explains that they need to use the toilet urgently. They will also get a free Radar Key to unlock disabled toilets. People with Crohn’s or Colitis are sometimes challenged about using accessible toilets by people who do not understand about invisible illnesses. They may appreciate having someone to support them in these situations.

If you are out and about at venues and attractions, you could download our venues and attractions letter. This is a letter that they can give to the staff at the venue. It helps explain what it’s like living with Crohn’s or Colitis and the impact the conditions can have on days out.

Appointments and procedures

People with Crohn’s or Colitis might have lots of medical appointments. Dealing with these and fitting them into everyday life can be challenging.

You could help your loved one make a list of things they want to discuss at the appointment, to make sure they do not forget anything. You could offer to attend appointments with them to keep them company. Or take notes or help them take in what the healthcare professional says. Our information on medical terms might be useful to understand some of the terms you might hear.

Sometimes people will need a medicine to make them relaxed and sleepy when they have a test or procedure. Because this can make them drowsy, they are not allowed to drive or travel home alone afterwards. If you’re able to, you could offer them a lift or travel with them. And keep them company until they feel better again.

Check if they can access and understand the information they get from the hospital. Letters and test results are often accessed online. If the person you support cannot access them online, see if they can be provided in a different format.

Support after surgery

Some people with Crohn’s or Colitis need surgery. Afterwards, they may feel weak and tired. They may be unable to do any lifting or driving for a while. Offering to do things like cooking and cleaning could be a great help. We have more information about surgery for Crohn’s Disease and surgery for Ulcerative Colitis. It covers what to expect before and after surgery. It includes information on the impact of surgery on everyday life, which can be helpful for friends and families. It covers topics like diet, work, exercise, relationships, fertility and travelling.

Explaining to others

You may be able to help your friend or loved one by advocating for them. For example, by standing up for them if someone questions why they often cancel arrangements or are picky about food. Helping others understand the impact of your friend’s condition can be helpful. But make sure it is something they are comfortable with. If they want to have these conversations themselves, you could offer to help them work out what to say. Our Talking Toolkit can help to explain what they want other people to know.

Support at work or school

Some people with Crohn’s or Colitis might need support or adjustments at work or school. You could help them find out what they need and how to get it. We cover these in some of our other resources:

• Our guide for employees covers the support that people with Crohn’s or Colitis are entitled to at work, and adjustments that can make coping with work easier.
• Our guide for employers outlines how employers and managers can help provide a safe, inclusive and supportive work environment for people with Crohn’s or Colitis.
• Our factsheet for schools explains how school staff can support children with Crohn’s or Colitis.

CICRA, a charity supporting children with Crohn’s and Colitis and their families, has more information for schools.

Some people with Crohn’s or Colitis experience stigma and discrimination at work. This is often because of a lack of awareness about the conditions. If you have a colleague who is experiencing this, you could help by raising awareness of the conditions. But first make sure they are happy for you to do this.

Financial support

Depending on their circumstances, your friend or family member might need, or be eligible for, financial support. We cover these in some of our other resources:

• Money and finding financial support covers financial support that may be available, like benefits, grants, and help with health, housing and transport costs.
• Disability benefits lists benefits that some people with Crohn’s or Colitis might be eligible for.

We also have guides on who may be able to claim personal independence payments (PIP) or disability living allowance (DLA), and how to do it. Having Crohn’s or Colitis does not mean someone is automatically eligible for these benefits. Many people who apply may not be successful.

Raising awareness

Raising awareness of Crohn’s and Colitis is a great way to show your friend or relative that you’re not embarrassed by their condition, and you want to help them.

• Join in with raising awareness. You could follow Crohn’s & Colitis UK on social media, campaign with us, or just talk about your experiences. Make sure the person with Crohn’s or Colitis is comfortable with what you’re planning. And check they’re OK with others knowing about their condition if you plan to mention their name. We have more information on ways you can get involved.
• Make a difference. Many people choose to donate, take part in one of our events, or fundraise for their loved one as a way to make a real impact. Whether that's training IBD nurses, funding research into new treatments, or helping people to get an earlier diagnosis. You could also treat them to a gift membership, which will provide them with vital information and tools to help them live well.

You might not think of yourself as a carer but if you regularly support someone with Crohn's or Colitis, you play an important caring role. Supporting someone who has a lifelong condition can put a strain on your relationship. It can be difficult if you feel that your relationship with the person you care about has changed. They might seem more irritable than usual if they’re in a lot of pain. Or be too tired to do the things they used to do. It’s important to remember that they’re still the same person they have always been, just in a different situation.

You might feel that your relationship is becoming unbalanced, and the only time you spend together is when you’re looking after them. It’s important to make time to do something you both enjoy together. They will probably appreciate the chance to feel like themselves again and not just a patient. This includes not feeling like they’re being protected from difficult situations just because they’re unwell.

Young carers

When the person you support is having a flare-up, you may have to take on more responsibilities. This can be a lot to deal with if you’re a young person and this is the first time you have had to look after someone. If you can, share responsibilities with other people in your family or social circle so that you’re not overwhelmed. It is OK to need help.

The NHS has information for young carers, including how to get help and support if you need it.

Parents

Crohn’s or Colitis can be a lot to cope with on top of all the other challenges young people face. Try to be as understanding as possible if they seem irritable or stressed. You might find it helpful to hear other young people share their experiences of living with Crohn’s and Colitis. They cover things like school, leaving home for the first time, and transitioning into adult care.

Having a child with Crohn’s or Colitis in the family can affect the whole family, including other children. It can be hard to meet everyone’s needs. It’s important to be as honest as possible with siblings about what’s going on. Although they may be scared about the treatment their brother or sister might need, they can worry if their parents keep information from them. They can also feel very protective of their sibling and might worry about them being bullied at school.

If your child has had Crohn’s or Colitis from a young age and you’re used to looking after them, it can be hard to adjust as they want to take more responsibility themselves. Our information on transition to adult care outlines the transition process, how you can help and how you can start giving them more independence. Even when your child becomes an adult, you will probably still worry about their health. It’s important to talk to them to find out how much involvement they’re comfortable with.

We offer virtual social events where people can share their experiences and tips for living with Crohn’s and Colitis. These are not just for people who have the conditions – they’re also open to family, friends or colleagues. Some of the sessions are specifically for parents and carers.

Partners

You might find that the balance of your relationship changes. There may be times when your usual daily life becomes interrupted, for example by hospital appointments or because your partner is fatigued. You might need to take on more of the everyday tasks and roles. If your partner cannot work, you might need to take on more financial responsibility.

You may find that your sex life changes or there is a loss of intimacy in your relationship. This could be because of:

• Fear of experiencing symptoms during sex
• Symptoms during a flare-up affecting how attractive your partner feels
• Lower testosterone levels in men taking steroid or opiate medicines, or with inflammation
• Low body image and self-esteem
• Depression or anxiety
• Side effects of medicines used to treat depression and anxiety
• Fatigue

Or it could be because you fear hurting them or making their symptoms worse. Try to be as honest as possible about how you feel. It’s likely your partner has similar concerns themselves. We have separate information on sex and relationships, which might help you think and talk about sex, intimacy and relationships.

You may also have questions about having children together. Having Crohn’s or Colitis does not generally affect fertility. But some types of surgery might have an impact. Most women with Crohn’s or Colitis can expect to have a standard pregnancy and a healthy baby. We have more information about reproductive health, pregnancy and birth, and postnatal care and breastfeeding.

People living with Crohn’s or Colitis are more likely to experience mental health problems than the general population. This includes conditions like anxiety and depression. Around half of all people with Crohn’s or Colitis say it has affected their mental health in some way.

Living with a lifelong condition can trigger lots of different feelings and emotions. Your friend or loved one may feel anxious, frustrated, sad, scared, or angry about having the condition and dealing with distressing symptoms. These feelings are completely normal, and many people with Crohn’s or Colitis experience them from time to time. You may be able to help them by:

• Letting them know that you care and have time for them
• Being there to listen without judging when they want to talk
• Not forcing them to talk or making them feel uncomfortable
• Offering practical help in a way that works for them
• Doing what you usually do

If you think your friend or loved one is finding it hard to cope, you could suggest they talk to their GP or IBD team. They can help them access the support they need. This may be medicines or talking therapies. Talking therapies can help people with Crohn’s or Colitis cope better with their symptoms. They can also help lower stress levels and improve mental wellbeing.

We have more about how to look after your mental health if you have Crohn’s or Colitis in our information on mental health and wellbeing.

It can be disheartening if you feel a friend or loved one is not looking after their health, especially when they have a lifelong condition. For example, you may notice that they miss doses of their medicine or ignore worrying symptoms. This can be frustrating, but it’s important to accept that they need to make their own choices. There are limits to what you can do to support someone else.

Do your best to be patient. You cannot force someone to talk, but you can make sure they know you’re there for them when they feel ready. Try not to take it personally if they do not want your help at this point and accept that they are responsible for their own health.

Sometimes you might feel you can tell when your loved one is becoming unwell before they do. For example, they may not realise they have been more tired than usual when they get home. You could try making a list of warning signs together while they are well. This can make things easier to talk about when you notice things changing. It’s a good idea to decide together how they want you to help if they do become unwell. Remember that it may not help to be overbearing or treat your friend or loved one like a patient.

If you are supporting a vulnerable adult and you feel that they are not looking after themselves, you should contact your local adult social services. You can do this in confidence without giving any names and just have a conversation about the situation. This will then help to decide if any further action is needed by the local authority.

Supporting someone with Crohn’s or Colitis can be rewarding and can bring you closer together. But it can also be tiring, putting a lot of demands on your physical and emotional energy. It’s important to find the right balance between supporting them and looking after yourself.

To make sure you have enough energy to help someone else and look after your own wellbeing, you could try the following tips:

• Be realistic about what you can do. Your help is extremely valuable, but you cannot support your loved one effectively if you do not look after yourself too. Setting boundaries may be difficult for both of you, but they’re important to ensure that you both understand your roles. You can reassure them that you’re still there for them, even at times when you cannot physically help.
• Be honest about your feelings. Often friends and family try to protect each other by hiding when they’re struggling or not speaking up when they have concerns. Being honest about your feelings may make it easier for your loved one to open up about theirs.
• Do not burn yourself out. Be sure to take breaks if you’re feeling overwhelmed. Do not feel guilty about taking time for yourself. You will be able to support the person you care about much better if you look after yourself properly.
• Confide in someone. Looking after someone with Crohn’s or Colitis can have a big impact on your life as well as theirs, and it’s important you feel supported. If you feel your friends do not understand what you’re going through, connecting with others in the same situation can be helpful. Support and caregiving for people with Crohn’s or Colitis may be different across communities. You may find help within your own community, or you may prefer to look outside your community for help. You could join our closed Facebook forum or attend one of our in-person Local Network events or virtual social events. But check that the person you support is comfortable with this. Carers UK also offers support and information. You might want to consider counselling if you feel overwhelmed.
• Do not do it alone. Take any support that’s available to you and share your caring responsibilities with others if you can.

You do not need to do everything; even small actions matter. Small things can have a big impact and just being there for your friend or loved one can help a lot.

Research has suggested that people with Crohn’s or Colitis who are lonely and stressed have worse health-related quality of life.  So just keeping them company and helping them relax can be a great help.

We follow strict processes to make sure our information is based on up-to-date evidence and is easy to understand. We produce it with patients, medical advisers and other professionals. It is not intended to replace advice from your own healthcare professional.

We hope that you’ve found this information helpful. Please email us at evidence@crohnsandcolitis.org.uk if:

·       You have any comments or suggestions for improvements

·       You would like more information about the evidence we use

·       You would like details of any conflicts of interest

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE. Or you can contact us through our Helpline by calling 0300 222 5700.

We do not endorse any products mentioned in our information.