My General Wellbeing
At times it may feel like CGD dictates your health and well-being but there are things you can do to help keep yourself well.
Keeping yourself as fit and well as you can will help you feel good about yourself, give you energy, avoid infection and get better more quickly if you are unwell.
Here are other things you can do for yourself to keep you at your best:
» Flu vaccine
» Preventing infection
» Looking after your teeth
» Sun care
» Emotional health
» Healthy bones
» Don't smoke
» Don't drink too much alcohol
» Living a healthy life with CGD: one person's view
It is important to take regular exercise. This helps keep you fit, boosts your immune system and releases the body's natural 'feel good' chemicals.
Exercise doesn't mean you have to do anything excessive. Activities to consider are:
• Basketball/volley ball/netball
• Swimming (in clean, chlorinated swimming pools)
• Dancing, yoga, pilates
• Cycling, scootering or roller-skating
• Walking – just down the road, to the shops or taking the dog for a walk
Build up exercise gradually and find something that you enjoy, so it doesn't feel like a chore. Don't do too much too often or you’ll feel exhausted and it may put you off doing anything at all. Many people who have CGD find that they get tired more easily than others, so don't let do too much or you may end up feeling exhausted.
A few minutes of exercise that speeds up the heart rate is good, but if you have breathing or heart problems, take advice from your nurse or doctor first.
Check out your local health centre, library and sports centres for local classes. Many local council-run sports centres have a gym and offer classes for different age groups and abilities/levels of fitness. They often have a discount card scheme and concessions rates.
A good diet...
….helps maintain a healthy weight
People with CGD often have problems absorbing nutrients because their bowel can be inflamed. It means you 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 as long as the majority of your food is nutritious.
Try not to skip meals. Instead have three small, manageable meals a day and have healthy snacks for break time, after school and before bed, such as plain biscuits, milky drinks, cereal, fruit or yoghurt.
I don't want to get fat
It might feel like you are being told to eat more food than your friends are. But people with CGD tend to use up energy quicker than others so you need a bit more 'fuel'.
If you eat a balanced diet with lots of different foods and fruit and vegetables, it's very unlikely that you will put on too much weight. If you do feel that you have got bigger, don’t just go on a diet without the help of a doctor, nurse or dietician (a specialist in food and nutrition). You can ask your doctor to refer you to a dietician at your local clinic or hospital. If you are concerned about your weight or have issues with food, talk to someone who can help such as your school nurse, doctor or the CGD nurse.
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/
The flu can cause a nasty chest infection. So make sure you ask your GP for a flu vaccine in the autumn every year.
Don't forget to take plenty of rest to build up your reserves. Letting yourself get tired and run down won't help you stay well. You may find there are days where you feel generally 'weary' and some people have 'achy' legs or joints from time to time. If you find yourself feeling very tired, it's your body's way of telling you to take a break. So listen to it!
No one wants to go to bed early every night and you don't have to miss out on going out and doing the things you want to do. But every now and again, you might need to have a lazy day, an early night or do something relaxing just to re-charge. It's okay to feel tired. Watch a favourite DVD, read a magazine or comic, eat some favourite food – in other words enjoy being lazy. Then it doesn't feel as if it's boring to take some rest. You’ll feel better for it.
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
• Avoiding infections when you’re young can make a difference to how well you are when you are older.
Looking after your teeth
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 remember to brush your teeth in the morning after breakfast and before you go to bed. Using a mouthwash can help keep sore gums and mouth ulcers away.
It is important that you see the dentist at least every six months. You’ll need to tell them you have CGD, If you have a tooth out, or other dental work which might make your gums bleed, you’ll need to take extra antibiotics before and after your trip to the dentist. This is 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.
Good oral health isn't just about brushing regularly. 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 sweets as treats. It’s better to have them at mealtimes rather than on and off during the day as they cause less damage to teeth.
You may find that your skin is extra sensitive. Use soap-free body wash or fragrance-free cleansers and skin care products, and plenty of moisturiser. If you are concerned about your skin, talk to your doctor or nurse.
Some people with CGD find that they are extra sun-sensitive. In the sun, you may burn more easily, develop skin rashes or blister. Some medications, such as steroids and septrin, can also make some people more sun sensitive.
• Apply high factor sun cream (SPF 15-30) or sun block. 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 your neck.
• Remember sun can get through clothes – dark clothes protect the skin better than lighter colours.
• Try to stay out of the sun between 12–3pm. This is when the sun is at its hottest.
• It's particularly easy to burn when swimming or on a boat trip. The light reflects off the water and you can spend a lot of time in the sun without realising – so take extra care.
• When you’ve been out in the sun, make sure you 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.
• Drink plenty of water so you don't get dehydrated.
Even if CGD does not affect you that much, you may still have strong feelings about it. You might feel angry that it is you who has it, and it may even make you cross with your family and friends. You might feel guilty because you think you are causing your family or friends to worry.
Remember, it's okay to feel afraid, angry, frustrated or fed-up sometimes. Growing up, coping with school, exams, boyfriend or girlfriend trouble and becoming more independent from your parents can all be stressful. CGD can add to this.
Being different from other people, having to take medication every day and feeling perhaps that you can't do everything you would like to do, can all contribute to feeling 'down'.
It can be helpful to talk to someone in a similar situation, share experiences, discuss problems and possible solutions. You might find it helpful to talk to a nurse or doctor who you get along with.
Sometimes it's helpful to talk to someone who isn't too close to you or who isn't involved in your medical care, such as a school counsellor, or social worker and/or the psychologist at the hospital you go to who can offer you some support and help.
You may also be able to access help through your GP. They can refer you to a counsellor or local psychology services. You may also be able to refer yourself to a counsellor and psychology services too through a service called Improving Access to Psychological Therapies (IAPT). Visit the IAPT website to see a list of services in your region.
Whoever you choose, don't be afraid to admit that you are feeling low or that you're finding things tough.
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 one (even from a minor accident). Important bones, such as hips and knees, are also vulnerable to 'wearing out' (If this happens, you’d need an operation to replace the worn-out joint with an artificial one.) Some people with CGD are at 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 in your teenage years and early adult life until it reaches its peak when you are around 30 years of age. After 30, bones begin to get thinner. Things you do in everyday life when you’re young can affect how much bone density you hold on to later in life. For this reason it is really important to look after your bones.
Risk factors for osteoporosis
Doing the following, increases your risk of developing thin bones:
• not having periods or stopping periods earlier in life, if you are female
• not enough physical activity
• being underweight
• diet (if your diet is low in calcium and vitamin D)
So if you are underweight, don't exercise or have a poor diet, especially one that is low in calcium, you could develop thin bones as you get older. If you have inflamed bowels or takes steroids for any length of time, this too can cause thinning of the bones.
Strengthening your bones
The good news is that there are a number of simple things that you can do to protect your bones:
Eat a bone-healthy diet – Healthy bones need a well-balanced diet, especially 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. You need regular exercise like running, walking, playing tennis, badminton and basketball. Dancing counts, too. These types of exercise stimulate bones to get stronger.
Smoking lowers your immunity and damages your lungs so 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 smoke, you are likely to have more flare-ups and will need extra medicines to treat symptoms.
Smoking also causes thinning of the bones. When you have CGD, it's particularly important not to smoke 'dope' (marijuana) – it actually contains fungus which is inhaled straight into the lungs when you smoke it.
Don't drink too much alcohol
Drinking alcohol regularly when you are too young can cause long term damage to your liver, so it's generally not a good idea. Drinking too much means can mean you lose control over what you are doing and what is happening to you which can get you into tricky and potentially dangerous situations. Drinking too much can also interfere with your CGD medicines and make you feel horrible. Even worse, you also might forget to take them.
You may want to have a drink every now and again at home and that's fine. Learning to enjoy having a social drink but not to drink too much can be a part of growing up for many people.
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.
Living a healthy life with CGD: Bobby's view
Bobby is 13, has CGD and manages to live to the full. His rule is: “Don't let CGD stop you doing anything – you can usually find your way around a problem.
Important things for Bobby
• Eating well
• Having fun
• Having an education – getting through it, although it may take longer than it does for other people
• Having strategies for coping with being ill
• Keeping in contact with friends, so that you don't lose touch and you don't feel as though you've been in prison
• Trying to have an aim every day, like going for a walk
• Speaking to the CGD nurse if you have any worries.
Bobby’s four top tips for staying well
1. Keep fit – physically and mentally. This helps you to recover faster if you do get ill
2. Don't smoke. Smoking weakens the lungs and makes it more difficult for your body to fight off infection. It is especially important not to smoke when you have a lung infection
3. Don't drink alcohol too much or too often
4. See a doctor or phone the CGD nurse if you've got a temperature or you are feeling unwell.
How to manage
You may start growing later than your friends but you will catch up with them eventually, especially if you eat a healthy diet and get plenty of rest. If you are worried about self-image and self-esteem, you may want to talk to someone about it, like your GP. They can refer you to a counsellor or local psychology services.
You may be able to refer yourself to a counsellor and psychology services through Improving Access to Psychological Therapies (IAPT). Visit the IAPT website to see a list of services in your region.
Try to plan something nice to do with your friends that you really enjoy.
If you want to talk to other CGD-affected youngsters about things they like to do, contact the CGD Society on the form below.
This information was reviewed by the CGD Clinical Nurse Specialist, March 2020
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