Exclusive liquid diet in the treatment of Crohn’s disease; a guide for children and their parents/guardians

Introduction

This leaflet has been written to answer some of the questions that you might have about the liquid diet for the treatment of Crohn’s disease and to help relieve any questions you might have.

What is the liquid diet?

The liquid diet is where you drink a specialised ‘milkshake’ to replace your normal diet. Modulen IBD is often used but standard nutritionally complete supplements may also be advised. Those with proven food allergies may be advised to take Elemental 028 Extra.

How does it work?

No one knows exactly how the exclusive liquid diet works although it provides all your nutritional requirements, it does not work by simply restoring good nutrition. We know that taking the liquid feed alone actually heals the lining of the gut better than steroids and that it has a specific anti-inflammatory effect. It is likely that by taking exclusively this liquid diet (i.e. without any other food) the balance of bacteria in the gut is somehow altered. We know that it is an abnormal immune response to gut bacteria that causes bowel inflammation in Crohn’s disease. By dramatically changing the type of food that enters the gut (e.g. with the liquid diet) and providing only that one type of protein (dairy protein), the type and number of bacteria may be changed enough to reduce the overactive immune system that causes ulceration of the bowel wall.

Are there any side effects?

You can feel hungry when you start the diet but if you are still hungry on your target amounts, please do have more to drink. This can also be a sign that your gut is healing and you are beginning to feel better. If you have lost a lot of weight before being diagnosed, very rarely your body can react to the sudden increase in good nutrition. Your team are aware of this and will therefore start the feeds more slowly, but you may need some blood tests in the first few days. This occasionally requires you to take some additional mineral supplements. You might be left with a strange taste in your mouth when taking only this milk. Make sure that you clean your teeth regularly and keep drinking extra water. If you think you are getting bad breath please contact us. If you drink your milkshake too quickly it can make you feel nauseous, so try and take it slowly over about 20 minutes.

Can I have anything else to eat or drink?

No. This is a medical treatment (as well as your food!) for the next 6 weeks. In order for it to work, you need to take only the milkshake and water. Studies have shown that children who eat other food respond much less to the treatment than those who take only the liquid diet. It is important that you drink water as well as the milkshake, as being dehydrated (not getting enough fluid) can make you tired and give you a headache.

How long do I need to follow it for?

You will need to take the liquid diet for six weeks from the day you reach your full target volume. After this your dietitian will discuss reintroducing solid food gradually and until you are eating normally you should continue some liquid feed along with your solid food.

How will we know if the diet is working?

Studies have shown that the diet already has an anti-inflammatory effect after 3 days. Within a few days of being on you full volume, you should start feeling better.

You will know if the diet is working in the following ways:

• You will gain weight
• You will feel stronger and have more energy for your daily routine
• Any symptoms that you had before the diet will start to improve e.g. tummy ache, loose stools or vomiting
• You will have more of an appetite

When you come to clinic the doctors will also look at your blood test results to look for signs of inflammation to see if these are improving.

If there is no noticeable benefit after 2 weeks on full volume, your doctors review you and consider other treatment options.

Hints and tips

• Drink the milk from covered beakers with straws or sports bottles
• The drinks are best taken cold
• Have the drinks slowly over about 20 minutes
• Clean your teeth more often to keep your mouth feeling fresh
• If you are hungry you can have more feed but make sure you drink extra water as well
• Use a cool bag (or insulated mug or bottle) to transport your drinks when you are not at home
• You can freeze the mixture and eat it with a spoon for variety but it should only be frozen for 24 hours and then eaten within 24hours
• Crush up some ice in a blender or smoothie maker to add to it for a change in texture
• Use a frother, or blender (large or small) to make the milkshake more frothy
• If you are cold you can heat the liquid gently (but do not boil or it will affect the vitamins and minerals)
• Give everyone in the house a challenge for the next six weeks to help you along – this could be someone giving up sweets and chocolate or someone doing more exercise or helping with the housework
• Make a chart so you can cross off progress you have made and give yourself something to look forward to

1. give yourself a treat when you get to small targets e.g. four days this could be a packet of stickers, a nail varnish, a magazine etc.
2. and a larger treat at the end of a fortnight e.g. a trip to the cinema, a new
   football etc.
3. and a family celebration when you get to the end

• Having the liquid diet will not stop you doing anything that you want to do. There is no reason why you cannot go to parties, go ‘round to your friends’ houses or for sleep overs, but you may need to take your drink with you so you need to plan ahead. Remember sticking to the liquid diet will make you feel better so you can enjoy these activities more
• If you have an important event while you are on liquid diet e.g. a birthday, a family celebration etc. please discuss this with your dietitian or specialist nurse before the event
• If you feel upset at what has happened to you in the past few months and weeks, consider finding somewhere that you can write your feelings down – this could be a diary for you to read yourself or a message box that you can leave for your parents to read. Or email your dietitian or specialist nurse
• Write yourself a list of the benefits that following the diet will bring, so that you can read it again if you are struggling. The good points can include feeling better, increased energy levels so you can play with your friends, relief from symptoms and better growth

Your chosen formula is……………………………….

Your total volume is……………………………………

Your dietitian is…………………………………………… (01223 216655)

Your Specialist Nurse is ………………………………… (01223 274757)

Please do not hesitate to contact us if you have any questions or are finding things difficult.