Embarrassing Illnesses

The symptoms of cystic fibrosis can be considerably relieved through diet and exercise, both of which can be managed at home, with guidance from your GP and cystic fibrosis clinicians. The following recommendations are intended to be advice, always follow the guidance of your GP and cystic fibrosis clinicians.

Diet

If you or your child has cystic fibrosis, getting the right nutrition is vital. A healthy body weight is necessary to help you fight off infections, and it is important that you have enough reserve energy to rely on if you do become ill. Mucus build up blocks the ducts in your pancreas that produce a food-digesting enzyme, and as a result, your body cannot break down all of the food you eat and you do not get all of the nutrients you need. Therefore, the diet of someone with cystic fibrosis should be high in calories, as they will inevitably eat more than they can digest.

The special diet for cystic fibrosis should start as soon as the condition is diagnosed, and it will need to adapt as the person with the condition gets older. The dietary requirements of babies, children, and adults with cystic fibrosis are detailed below.

Babies with cystic fibrosis

• If your baby has cystic fibrosis, they may be breast fed as usual, or most baby milks and formulas should be suitable. Ask your GP or dietitian if you are unsure.
• Before your baby moves on to solid foods, they may need extra salt as both breast milk and baby milk are very low in it. This is because cystic fibrosis makes their sweat five times saltier and much of the salt in their bodies is lost through their skin. If your baby needs extra salt, your GP can prescribe a salt solution. You should never add salt to your baby's food or drink.
• You can feed your baby any normal solid baby foods, but they will need vitamin supplements to compensate for the loss of vitamins A, D and E in their stools. These are available in two liquid preparations; vitamins A and D are usually combined in one, and there is usually a separate one for vitamin E.
• Your baby will also need pancreatic enzymes, which take the place of the food-digesting enzyme missing from their digestive system, to help them digest food. These usually come in the form of granules, which can be mixed with fruit puree and spoon fed at the start of every meal. You should never give your baby dry granules as these can be a choking hazard. Your dietitian or hospital can advise on the right amount of granules to use.

Children with cystic fibrosis

• Children who have cystic fibrosis should eat a varied diet, but they should also eat a large amount of protein and calories. Give them plenty of meat, fish and eggs, as well as starchy foods like bread and pasta. If your child's appetite is poor, try giving them food little and often, and offer snacks in between meals. Children who find it particularly hard to gain weight can be given dietary supplements in the form of milk shakes or fruit juices. Talk to your GP or dietitian about these.
• Like babies, children with cystic fibrosis will need to continue taking vitamin supplements for vitamins A, D and E, in order to compensate for what they lose.
• Your child will also need to continue taking pancreatic enzymes at the start of every meal, which can be taken in easy to swallow capsules. Examples of pancreatic enzymes for children are Creon and Pancrease.
• Your GP may recommend salt supplements for your child to take in hot weather or on holiday, when they may lose salt through sweating.
• Your child will probably eat more sugary foods than normal due to their high calorie diet, so it is important to make sure they are brushing their teeth properly and visit the dentist regularly. 
• If your child cannot gain enough weight and dietary supplements have not helped, they may need to be temporarily tube fed in hospital. This will usually be either nastrogastric (in which the tube is inserted through the nose and goes down to the stomach), or gastronomic (in which the tube is inserted directly into the stomach).

Adults with cystic fibrosis

• Adults who have cystic fibrosis do not need to avoid any particular food, but they do need twice the amount of protein than normal. Try to eat plenty of meat, fish and eggs, and eat three meals a day with several high calorie snacks in between, such as nuts and oily fish.
• If you have cystic fibrosis and you want to be a vegetarian, talk to your GP or dietitian to about alternatives to meat. However, a vegan diet is not advised for people with cystic fibrosis.
• Most adults with cystic fibrosis need to continue taking pancreatic enzymes at the start of every meal to aid their digestion. There are many different kinds, so talk to your GP to find one that suits you. However, you should not stop taking pancreatic enzymes unless you are told to do so by your GP or dietitian, as this can lead to a serious blockage in your bowels.
• You will also need to continue taking vitamin supplements for vitamins A, D and E. For adults, these come in the form of prescribed multivitamin supplements.
• If you lose a lot of weight due to an infection or illness, you may need to be tube fed in order to help you gain weight. As in tube feeding for children, this will be either nastrogastric or gastronomic, depending on how long the tube must stay in for. A gastronomy tube (which is inserted directly into the stomach) is best for longer periods of time as it cannot be dislodged during physiotherapy.

Exercise

It is extremely beneficial for people with cystic fibrosis to exercise as it can help to prevent lung damage, and improves your body's strength and mass. Any sport or exercise that gets you moving and out of breath is good, such as football, running, tennis or swimming.

If your child has cystic fibrosis, let their school know that exercise is encouraged.

Young children can be encouraged to run around and play games.