Arguably the hardest part about doing a liquid diet for IBD and sticking to it is your mindset. Most people are used to eating between 3 and 5 meals a day at regular times and these meals become important social cues which divide up their day. But when you’re on EEN (exclusive enteral nutrition), things are very different. Your day no longer has these clear divisions and you no longer experience the typical fluctuations of hunger and satiation that you would before and after eating a meal. Instead, its about keeping your energy at a reasonable level by “topping up” every couple of hours.
The temptation of food
The biggest struggle you are likely to face whilst doing a liquid diet is of course the temptation to eat food. People often don’t realise how large a role food plays in daily life (and how often they think about it) until they can’t have it. From family meals, to tv advertising, to food being sold in shops, you just can’t escape it! Suddenly everything around you seems to mock your inability to eat. It’s also hard when you live with other people as you are likely to smell whatever they’re cooking for dinner from a mile away- I swear your senses become extra acute to food when you crave it so much! But, as someone who has done many liquid diets over the years lasting from a few weeks to many months, I can say that the first couple of weeks are the worst because they’re such an adjustment. Soon not eating will become normal and you will be less interested in food. But if you find your mind drifting, it’s just important to keep reminding yourself why you are doing the liquid diet in the first place; it can really benefit your health. And if you’ve already been doing it for longer than a week or so, you hardly want to waste all the effort you’ve already put in by giving in to your donut craving. Stay strong and it will pay off! Also, your friends/ family will likely be more self-aware about eating or talking about food in front of you if you let them know you are unable to eat. Plus, they can then cheer you on and encourage you to stick with it.
The taste
Another issue a lot of people have is the taste of the liquid supplement drinks. Though the quality has improved greatly over the years and various flavours are available now, they certainly aren’t designed to be anything to look forward to. They serve a medical purpose and in the context of IBD, this is to calm down patients’ digestive symptoms and enable them to gain weight by being nutritionally balanced. Personally, I find the pre-made brands like Fresubin and Ensure, which come in flavours like vanilla, banana, strawberry and chocolate, much easier to stomach compared to the powered forms like Modulen that require you to make up the drinks yourself with water. I would recommend ordering a few different brands and flavours and seeing which you prefer, sometimes you can also try them in hospital. To make them more bearable though, I have two pieces of advice. Firstly, always drink through a straw- at least then you can skip over most of your taste buds if you don’t like it that much. Most of the pre-made drinks come with straws attached, so that’s useful! And secondly, three words: refrigerate, refrigerate, refrigerate. I cannot stress enough how much easier it is to tolerate them when they’re extra cold.
You may also begin to miss the sensation of chewing solid food, but there is a small loophole which may help you with this: you are allowed sugar-free gum and lolly pops/ hard-boiled sweets. These basically dissolve before entering your stomach anyway, so they are acceptable in moderation during a liquid diet and a good way to taste a different flavour too!
Practicalities
Then, there’s the practical side of being on a liquid diet. If you’re ill and at home, it’s pretty easy- just re-stock your fridge with enough bottles for the next day (or enough cold water if you’re using powder) and grab/ prepare a dose whenever you want one. If you’re planning to go out though, it’s a bit more complicated, but far from impossible. If you are working, it’s likely that you will have a fridge in your office, so make full use of this. Otherwise, what I do for a day out is freeze a couple of ice blocks the night before and pack the drinks in a zip-lock cool bag. With the ice packs, they stay cold enough for 8-10 hours, sometimes longer. Thermal flasks are effective too- just make sure you buy a good brand as sometimes the drinks start to taste a bit funny if you leave them in cheap flasks for too long… Obviously, all of this is quite heavy to carry around all day though, so either ask to split the weight with whoever you’re with or use a backpack with support straps to distribute the weight better.
The ordering process
The other practical thing to consider about liquid diets is ordering the supplements in the first place, which is usually done via prescription. People tend not to realise how many drinks they actually need. Just bear in mind that you are living on them and nothing else! My prescription this time around is about 8 drinks a day and lasts a month each time. That’s roughly 240 drinks per order… Yikes! When I was living at home, this was pretty easy. My mum just did a few trips to our local pharmacy and stuffed the boot of her car full of them! But when I went to university and was told to go back on EEN all of a sudden, I was faced with the task of singlehandedly transporting several tonnes of Fresubin from the pharmacy to my dorm room and looking incredibly weird doing it. To combat this, I recruited an in-the-know friend and a spare suitcase to help me move it all. So, if going on EEN is something you tend to fall back on and you are starting university soon, I would definitely recommend leaving an empty suitcase in your room just in case- mine was a lifesaver!
Now, you may be asking the question of where I was going to store it all and how I was going to refrigerate it without my 8 clueless flatmates getting suspicious about why I wasn’t eating all of sudden and why my fridge shelf had gone from fresh food to only weird milkshake-looking drinks. Luckily, I was on Humira at the time and was authorised to have a private medical fridge in my room which meant that I could store around 15 bottles in there at a time and didn’t need to implicate myself by using the communal fridge. But, if you don’t have your own fridge at university and this is a concern for you, just ask the disability team for one and they should provide it for free if you give them a letter from your hospital explaining the situation.
As for a couple more tips about ordering your supplements, first of all, it may sound obvious but make sure that the request is specific. Don’t just ask for “Fresubin” for example. You need to say which type, the dose, if there should be any additives i.e. fibre, how many you need per day (use the top end estimate) and which flavours you want. I find the 2kcal ones too concentrated which makes me nauseous and I can’t tolerate the ones with added fibre. So, my current request is “Fresubin Energy, 1.5kcal, no added fibre, 7-8 daily, vanilla and banana”. Also, be organised and make sure you order more BEFORE you run out! If you forget then you literally won’t have anything to sustain yourself for several days and may have to resort to breaking the liquid diet- fail!
Side-effects
Another practical aspect of being on EEN which not many people consider is how it might affect your sleep. I tend to take a long time to fall asleep and I’ve found in the past that because having a 300kcal drink is nowhere near the same as having a full-sized meal in the evening, unless I have one right before bed, I end up having to get out of bed before I’ve fallen asleep to have another one, which just wakes up my digestive system again. So, now what I tend to do is leave 2-hour gaps between most of the drinks during the day and then leave only a 1-hour gap between my final 2 drinks, the last one being pretty much right before I go to bed. That way I don’t have to get out of bed due to hunger- it’s all about the timing. So, if you are like me and can’t fall asleep quickly, this may work for you as well.
As for more physical side effects of EEN, you may experience diarrhoea in the first 1-2 weeks as your system “clears out” and gets used to running on fluids and no solids. A lot of people assume that this is a bad sign and give up immediately thinking that EEN doesn’t work for them, but this is not always the case. I would give it at least 2 weeks before throwing the towel in to see if these symptoms settle down- mine usually do. Bloating is also very common with liquid diets and this may be eased by drinking slower, doing some exercise or massaging your stomach to move excess air. I’ve also experienced acid reflux in the first couple of weeks on past occasions, but this has been rectified by acid-neutralising medicines like Omeprazole or Nexium. You may also get what’s known as “coated tongue”. This is where the bacteria in your mouth changes without normal food and your tongue becomes whiter than normal. If you experience this, just make sure you are keeping your mouth as clean as you can by brushing well- including your tongue!
Socialising
Now for a point I touched upon earlier: looking “weird” for not eating anything and socialising whilst on EEN. Honestly, this is nowhere near as bad as it seems. I mean, I obviously avoid food-specific events like meals out and barbeques as it would be pretty pointless to go! But as for going out in general, I either drink one or two before I go and tell whoever I am with that I ate beforehand, or I just bring my Fresubin in a flask and tell people it’s a milkshake. It really is as easy as that! If you end up having to tell people you’re on a liquid diet, then so be it- they don’t necessarily need to know why you’re doing it and you really don’t look as weird as you probably feel. Plus, it’s really important not to let being on a liquid diet stop you from spending time with other people. I actually found that a surprising effect of EEN was that I started over-working without even realising until I added up how much time I would usually spend cooking, eating/ socialising with my flatmates, and washing up several times a day. I concluded that without any of that, I had resorted to spending almost my entire day working and on my own. So, if you are doing or about to start EEN, make sure you still take breaks as you usually would whilst eating a normal diet and that you don’t isolate yourself, that way your routine is less disrupted and adapting becomes easier.
The only thing that may pose a slight issue socially- but not one that can’t be solved- is going to large-scale events where food and drink are banned. I recently went to a concert at the O2 arena and on all the customer information it said that you couldn’t bring any food or drink and that you had to use transparent bags only i.e. no cool bags allowed. So, I got in touch with the customer care team about a week beforehand, explained my situation and sent over a letter from the hospital. I received an email back to show security on arrival which exempted me from this rule. I was allowed under 500ml of Fresubin in its original packaging- just enough to last me through the show, and I was told to go through the disabled entrance for a bag check. Annoyingly, despite my preparation I was still stopped at the gate and told I wasn’t allowed in with it, but soon the issue was cleared up and it all worked out in the end. So, if you’re attending a big event like this, make sure you are well-prepared, have read the customer information and, even if they don’t ask for it, always bring a letter of evidence with you just in case.
Travel
One final point I would like to address is going on holiday whilst on a liquid diet. It’s far from ideal, but as someone who has been to Rome and Vienna whilst on two different kinds of EEN, I know that sometimes it’s the only way you can go abroad if your symptoms aren’t under control. I would definitely say that taking the powdered form is easier if you can stomach it, unless you’re only going away for a couple of days. The bottled forms take up much more space in your luggage and may incur extra weight charges as they are heavy little buggers! Either way, to avoid suspicion (especially if you’re attempting to transport giant tins of white power into another country…), I would always bring relevant prescriptions and letters from your hospital explaining what you have with you and why- that way you hopefully won’t get stuck at airport security! Make sure you bring more than you need and if you can, put some in your hand luggage as well as your hold luggage in case your bags get lost. Also, always look into contact details for local hospitals before your trip as a plan B if anything goes wrong. Other than that, usual rules apply: use a cold bag or, if you’re staying in a hotel without access to a freezer, try and book a room with a mini bar so you can use it as a fridge. Alternatively, make sure you buy plenty of bottled water if you’re making up compound shakes and refrigerate it in the mini bar likewise- it’s much safer than using tap water on an already dodgy tummy! And don’t forget the milkshake powder to flavour it!
So, all in all, it’s true that being on EEN probably isn’t the most fun you’ll ever have. But at the end of the day, it serves a real purpose and shouldn’t realistically prevent you from living your life. With patience, planning and a few canny adaptions, you will be a pro in no time!
Me and My Crohn's 