Health management

Regular exercise keeps you fit and boosts your immune system. It also releases the body’s natural ‘feel good’ endorphins to improve your well-being. Exercise doesn’t have to mean doing anything excessive. Activities to consider are:

• Gym classes such as zumba, dancing, yoga or pilates Swimming (in clean, chlorinated swimming pools)
• Badminton / tennis
• Cycling
• Walking (just down the road, to the shops or taking the dog for a walk)

Build up exercise gradually and find something you enjoy so that it doesn’t feel like a chore. Often people who have CGD find they get tired more easily than others. So don’t try to do too much too often or you will feel exhausted and it may put you off doing anything at all.

A few minutes of exercise that speeds up the heat rate is good, but if you have breathing or heart problems take advice from your nurse or doctor first.

….helps maintain a healthy weight

People with CGD often have problems absorbing nutrients because their bowel can be inflamed. It  means they tend to use up energy quicker than other people and need a bit more ‘fuel’

…keeps the immune system healthy

Eating a healthy diet that is rich in antioxidants such as vitamins A, C and E, zinc and selenium helps the body fight infection and maintain the immune system.

It is vital that you eat regularly and have a balanced diet. It’s the best way to maintain your weight and ensure your body has the fuel it needs.  ‘Balance’ is key. This doesn’t mean that you have to avoid treats such as burgers and pizzas completely. You can eat them in moderation by ensuring that the majority of your food is nutritious.

It’s best not to skip meals even if this is tempting if you are going through a phase of not wanting to eat very much or are busy at work or studying. Try to eat three small, manageable meals a day and healthy snacks for mid-morning and afternoon breaks and before bed, such as plain biscuits, cereal, fruit or yoghurt.

If you are concerned about issues to do with food, see your doctor or contact your CGD nurse. They can refer you to a dietician at your local clinic or hospital.

Most people do not need to take vitamin supplements and can get all the vitamins and minerals they need by eating a healthy, balanced diet.  Your GP or medical team may recommend specific supplements if you need them.  General advice about vitamin supplements can be found at

https://www.nhs.uk/common-health-questions/food-and-diet/do-i-need-vitamin-supplements/

Adequate rest is important to help you stay healthy. There will be days when you feel generally ‘weary’ and your joints ache. On these days, remember that that this is your body’s way of telling you to take some time out and have a break. It’s important that you watch out for these signs and pay attention to them – they’re an early warning sign to help you stay away from infection.
Having a ‘duvet day’ is a good thing to do once in a while. Have a lazy day at the weekend, an early night or do something relaxing just to re-charge your batteries. See it as an investment in your health.

This is important for a number of reasons:

• If you feel fit and well, you’ll be able to go about your daily life and do what you want
• Keeping free of infections means you’ll be less likely to end up in hospital

Sometimes influenza can cause a nasty chest infection. So make sure you ask your GP for a flu vaccine in the autumn every year.

People with CGD do sometimes get sore gums and mouth ulcers. Not looking after your teeth makes it really easy for bugs to get into the blood and cause an infection. To avoid this have good oral hygiene – brushing every morning and night and using mouthwash to keep sore gums and mouth ulcers away.

Remember, sugary drinks and sweets can cause a lot of damage to teeth. This doesn’t mean you can’t have them but try to keep them as treats. Have them at mealtimes rather than on and off during the day. This way you’ll cause less damage to teeth.

See the dentist at least every six months and remember to tell them you have CGD. If you’re having invasive work done, you will need to take extra antibiotics before and after a trip to the dentist to make sure you don’t get an infection. Ask your doctor or CGD nurse about this when you’re planning a trip to the dentist.

You may find that your skin is extra-sensitive. Soap-free body wash or fragrance-free cleansers and skin care products can be better for your skin. You might also find that you’ll need to use a lot of moisturiser. If you are concerned about your skin, talk to your doctor or nurse.

Sun care

Some people with CGD find that they are extra sun-sensitive. This means you may burn more easily, develop skin rashes or that your skin blisters in the sun. Medications, such as steroids and septrin, can also make people more sun sensitive.

• Apply a high factor sun cream (SPF 30-50 or total sun block). Make sure you re-apply it every couple of hours
• Wear a hat, sunglasses and a T-shirt in the sun
• Don’t forget to protect easily-burnt places like feet, hands, faces, ears and the back of the neck
• Remember sun can get through clothes – dark clothes protect the skin better than lighter colours
• Try to keep out of the sun during the hours of 12–3pm when it’s at its hottest
• It’s particularly easy to burn when you’re swimming or on a boat trip – the light reflects off the water and it’s easy to pass a lot of time in the sun without realising – so take extra care
• When you’ve been out in the sun make sure your skin gets plenty of moisturiser You don’t need to spend money on expensive after sun products. A good ‘ordinary’ moisturiser will do just as well
• Make sure you keep well-hydrated

 

Thinning of the bones – osteoporosis – is quite common in the general population, particularly in later life. Having thin bones means you are more likely to break a bone (even from only a minor accident) or need a hip or knee replacement because your joints are worn-out.

People with CGD are at particular risk of developing thin bones, particularly if they have had periods of being very underweight as children or young people.

Bone thickness (or density) gradually increases during childhood and early adult life until it reaches its peak when you’re 30 years old. After 30, your bones begin to get thinner.

You’re more likely to develop thin bones if you:

• smoke
• are female and don’t have periods or stop your periods early in life
• don’t have enough physical activity
• are underweight
• have a diet low in calcium and vitamin D

Strengthening your bones

There are simple things that you can do to protect your bones:

Eat a bone-healthy diet – Healthy bones need a well-balanced diet, including plenty of calcium. The best sources of calcium are milk and dairy products, such as cheese and yoghurt. It’s also found in green leafy vegetables, baked beans, bony fish and dried fruit.

Exercise – Like muscles and other parts of the body, bones suffer if they are not used. Take regular exercise where you’re on your feet, such as running, walking, playing tennis, badminton and basketball. Dancing counts, too. These types of exercise help stimulate bones so they are strong.

Smoking lowers your immunity and damages the lungs, whether you’re doing the smoking yourself or being exposed to passive smoke from other people’s cigarettes. 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. And smoking also thins the bones.

If you want help to quit, speak to your GP or contact the NHS support service Smokefree on 0800 0224332 or visit www.smokefree.nhs.uk

Some reports show that smoking can cause bowel inflammation. So, if you smoke and have CGD, you may be more likely to suffer more from bouts of bowel inflammation, if this is part of your condition.

It is particularly important for CGD-affected people not to smoke marijuana because it contains fungus which is inhaled straight into the lungs.

Enjoying a social drink with friends and family is a part of adult life for many people. However, drinking too much alcohol can cause long-term damage to the liver and interfere with your medicines, making you feel unwell. Drinking too much may also put you in a position where you forget to take your medicines.

Stick with the UK Government guidelines. They advise that both men and women should not regularly drink more than the daily unit guidelines of 2 units per day and to not exceed 14 units per week. “Regularly” means drinking every day or most days of the week.  Look at the Drinkaware website for details on guidance on alcohol consumption.