Self care

Because of their condition, people with CGD have to watch what they eat. Mainly, they have to make sure they eat foods that help maintain a healthy weight.

People with CGD tend to use up energy quicker than others and so need a bit more ‘fuel’. They also tend not to effectively absorb the goodness from food and find that much of the energy it gives them is used to fight off infection.

As a result, children and young adults with CGD may grow more slowly and not be as tall as others of the same age.

Steroids can have an impact on what you eat if you’re living with CGD.

As well as calming inflammatory infections if taken over time, they can also slow down the body’s growth. This may make some people with CGD shorter than others of the same age.

If you are anxious because you or your child are not growing, talk to your doctor or call the CGD nurse. They can help reassure you and tell you about possible options if they think you or your child needs a growth ‘kick-start’. They may also recommend you see a growth specialist, called an endocrinologist.

A few days on steroids won’t affect your height or growth rate. When your doctor reduces or stops your course of steroids, normal development and growth can get going again.

A healthy diet is good for everyone – whether you have CGD or not. That means eating a variety of food including at least five portions of fruit and vegetables every day. This doesn’t mean that burgers and pizzas are out of bounds, but they should be part of a balanced diet where the emphasis is on healthy, nutritious food. Below you’ll find some tips on how to eat healthily if you or your child has CGD.

Eat healthy high-calorie foods.  Eating high-calorie foods, like butter or cheese, can be enough. However, some people may need a little extra help from dietary supplements – usually a milkshake-style or fruit-flavoured drink prescribed by a doctor or dietician.

Eat a little and often. You or your child might need to eat more but only have a small appetite. If this happens, it’s probably better to eat small, frequent meals rather than try and force yourself to eat one large meal.

Don’t skip meals. Try to have three small, manageable meals a day plus snacks, such as plain biscuits, milky drinks, fruit or yoghurt at coffee time, teatime and bedtime.

Don’t overload your plate. Making sure you don’t overload your plate, especially with children’s meals, can make food more appealing. Remember that children with CGD have small appetites and may feel they are eating as much as they can, so praise them when they’ve finished eating.

Disguise extra calories. Putting butter and cheese into meals can be a useful way of packing in the calories without children realising. Also remember that little ‘treats’ can provide extra calories too.

Consider tube feeding. Some people find it difficult to keep up their weight when they are ill and feel conscious about how thin they are. A short period of being fed by NG (nasogastric tube) can help. A fine tube goes through the nose into the stomach and a special high calorie liquid food containing all the necessary nutrients can be given to you easily through a pump overnight. You can do this at hospital or in your home. Your doctor can advise you on this.

Consider taking vitamins. Both adults and children with CGD may benefit from a standard vitamin and mineral supplement as it may be harder for them to absorb all their nutrients from food. A one-a-day multi-vitamin and mineral supplement is adequate. Some people find that iron doesn’t agree with them because it can cause an upset stomach, constipation and heartburn. So you might like to find a supplement that doesn’t contain iron or has a form of ‘gentle’ iron to help avoid these side-effects. Avoid taking large amounts of any one vitamin or mineral as they can be harmful or may interact with prescribed medicine so always take advice from your doctor or pharmacist.

Seek advice. If you have concerns about your or your child’s diet or weight, talk to your doctor or nurse. You can ask to be referred to a dietician.

Taking regular exercise helps to keep you fit, boosts your immune system and releases natural ‘feel-good’ endorphins into your brain to increase feelings of well-being.

However, many people with CGD get tired easily and have lower energy levels than others, so exercise needs to be planned with this in mind. Remember, exercise doesn’t have to be anything heroic or involve expensive gym fees. Our CGD Society Clinical Nurse Specialist recommends getting involved in any sport that interests you.

Such activities include:

•    basketball, volleyball or netball
•    swimming in clean, chlorinated pools
•    badminton or tennis
•    dance, yoga or other keep fit classes. Pick up local information at the library
•    pilates
•    cycling
•    walking – whether down the road, to the shops or taking the dog out.

Build up your exercise regularly and adjust it to suit you. Don’t aim to do too much too often or you will either feel exhausted or find that you can’t keep up your exercise plan, which won’t help your motivation.

A better idea is building exercise up gently and doing it ‘little and often’.

A short walk each day or using a dance game with friends at home may be more appealing than running around a football pitch, especially if you are recovering from illness.
People with breathing problems, or who are generally unwell, may benefit from seeing a physiotherapist. They can develop an appropriate exercise plan to target specific problems and boost your general health. Ask your doctor for advice.

If you don’t rest, you run the risk of getting run down, catching infections and not being able to fight them off. You may find there are days when you feel generally weary, and some people find they have achy legs or joints from time to time. It may be tempting to plough through, but your body is trying to tell you it’s tired – so listen!

Allow yourself to have a lazy day or ‘duvet day’ and an early night every now and again, or do something restful or relaxing just to recharge.

It’s okay to feel tired. In fact, it’s understandable given how CGD can affect you. So if you feel like taking to the sofa for the day, let yourself do it.

Watch a favourite film, read magazines, eat some favourite foods – in other words, enjoy indulging yourself. That way taking some rest won’t feel like a chore. In fact, you’ll feel better for it.

Smoking lowers your immunity and damages your lungs. If you smoke you are likely to get more infections, particularly chest infections. You could also develop long-term problems with your chest and breathing.

If you suffer from bowel inflammation and you smoke, you are likely to be unwell, have more flare-ups and will need extra medicines to treat your symptoms.

Smoking is harmful to your bones too, and could lead to weak bones later in life.

Smoking marijuana (also known as ‘pot’, ‘weed’ or ‘dope’) can be particularly dangerous for people with CGD. This is because it contains a fungus which is inhaled straight into the lungs when you smoke it.

For help giving up smoking, log on to the NHS website,  www.givingupsmoking.co.uk or phone the NHS Smoking Helpline on 0800 169 0169. Alternatively, talk to your GP.