Living with an invisible illness

[Warning: don’t read while you’re eating, or if you’re squeamish. Some of it is too much information.]

Start

Back in September 2013, I was diagnosed with ulcerative colitis, an auto-immune disease I’ll have for the rest of my life.

The Russian gastroenterologist who diagnosed me put me on mesalazine tablets, which I have to take two of every morning and every evening. If I’m lucky and the symptoms die down I may be able to reduce this at some point in the future. I tried last year over a period of three months or so, but had to up the dose again in December.

When I’m in the UK, I can get them on the NHS, although the first doctor I saw only gave them to me under protest, telling me I’d have to be diagnosed in the UK to be able to get them, since a Russian diagnosis wouldn’t be accepted there. Luckily, the doctor I’m now registered with is considerably more reasonable, much more helpful, and didn’t question my diagnosis at all. He just asked if it might be possible to get my Russian medical notes translated into English to add to my records.

When I’m not in the UK, I have to pay for them. I get through a box of 100 tablets in 25 days, and they’re expensive. In Sevastopol, they cost £43 for a box, which then went up to about £65 in March last year. When I bought a box in Canada, along with a box of another tablet I need, they cost £90. I’m very lucky that I can afford to pay for them, as many wouldn’t be able to.

In addition to these tablets, and various others that I was on and off like a yo-yo in 2013-2014, I was also told I needed to manage my diet. These were the original conditions:

• 300g of food every 3 hours, to keep my body working regularly without big peaks and troughs;
• no raw fruit or vegetables – they all have to be cooked, giving my body less work to do;
• no milk;
• no added fat of any kind (oil, butter, margarine etc.) – it can line your intestine, making it harder to absorb food properly;
• no fried food (following on from the previous point).

This was OK, because as long as I had small portions, I pretty much eat what I wanted. My health improved considerably, and I lost a stone (7kg). When I went back home at Christmas, everyone commented on how healthy I looked, and how ill I’d been before I went away in September.

Escalation

In March 2014, lots of things went wrong, and I got ill again. I had blood in my stool and bad diarrhoea, so I went to the gastroenterologist on Monday. I was given IV injections of hormones for 15 minutes a day for three days, which meant it went away. By the following Monday it was back again. This process repeated itself for three weeks, until the doctor told me she couldn’t do this any more, and prescribed prednisalone tablets for me, and an even stricter diet. That weekend I was very depressed, as my friend and I had real trouble working out what I would actually be able to eat from the list I was given. In the end we settled on:

• non-fatty meat/fish
• potatoes
• rice
• cooked apples
• honey
• red jelly (no citrus)
• cooked carrots
• …and not much else.

A week after I started this diet, I went to the UK for a week to see my grandad, go to IATEFL and celebrate my birthday. I was pretty depressed because one of the things I’d been most looking forward to about going to the UK was the food, particularly being able to have cheddar. If it hadn’t been for being with friends at IATEFL, I probably wouldn’t have been brave enough to go to restaurants with my dietary requirements, but I know some very supportive people, and it wasn’t as bad as I’d expected. I was also lucky enough to have arranged to stay in a flat anyway, so was able to cook for myself.

Because of having to plan around when conference talks were, I managed to get into a routine of eating at 7am, 10am, 1pm, 4pm, 7pm and 10pm, something I hadn’t really worked out on the first incarnation of the diet. I didn’t always have the 10pm meal, but I’ve now realised that if I don’t, I wake up starving in the morning, and I’m really tired the next day if I have any less than six 300g meals in a day. 15-20 minutes before I’m due to eat I start to get tired, and by the time it’s 30 minutes past when I’m due to eat, I can’t string a sentence together, I find it difficult to concentrate, and my legs get really heavy if I’m walking. I also tend to yawn a lot because my blood sugar has dropped.

Addition

Looking things up on the net wasn’t much help, as any two diet pages would contradict each other in some way, especially since nobody really knows what causes ulcerative colitis, and everybody has different triggers for flare-ups. Some of these are food-related, but for me, the most common seems to be stress.

A friend is training to be a nutritionist in the UK, and has been very helpful giving me advice. We eventually decided that I was actually on an elimination diet (although I’ve been mistakenly calling it an ‘exclusion diet’ until I just looked it up – no wonder people didn’t understand!), and could gradually add food back in to my diet. Strangely, the Russian doctor said I could still eat bread/wheat, but on my friend’s advice, I decided to cut out gluten too, especially since my mum is a coeliac.

Her advice was to try a very small quantity of something to see if it had any effect, then a larger quantity a little later, then add it in properly. I edited this to a little bit one day, a normal-sized portion two or three days later, then normal-sized portions on a few consecutive days. I wasn’t really sure what effect I was looking for, but everything seemed to be OK.

Nearly a year down the line, this is what I can eat (remember: all fruit and veg has to be cooked, not raw):

• oats and any form thereof, e.g. oat flour
• honey
• coconut
• rice and any form thereof, e.g. rice flour, rice flakes, rice noodles
• potato
• polenta
• oregano
• dill
• parsley
• pineapple juice (very watered down)
• non-fatty meat/fish (nothing smoked or salted)
• red jelly (no citrus)
• eggs
• apple
• apricot
• spinach
• carrot
• pears
• beetroot
• peach
• banana
• leek
• squash
• sweet potato
• cinnamon
• ground almond
• feta
• plain yoghurt
• cheddar (I think – still in the process of trying this)
• some very specific gluten-free products, like Mrs Crimble’s apple rice cakes

If I cook for myself, this makes for a fairly varied diet, and considerably wider than what I started off with in March last year. I cook meals in bulk almost every day, and eat most of them cold, because I don’t particularly enjoy reheated food.

When I go to a restaurants, I always ask for un-marinated meat or fish, with rice or potatoes. I’ve only ever been told that there’s nothing I can eat at all twice, and a few times I’ve been told I can only have one half of that meal – normally just the meat with no rice/potatoes because they’re pre-prepared.

Motivation

Here are some of the reactions I’ve received to my food/diet:

• “How can you eat that?” [Necessity, and I actually quite like it.]
• “Why are you eating now?” [I normally tell people about colitis and what it means to me at this point.]
• “That looks horrible.” [Thanks.]
• “That’s really boring!” [It’s a good job you don’t have to eat it.]
• “I could never do that!” [You could, you just haven’t needed to yet.]
• “I hate eating cold food/dry rice/carrots…” [You don’t have to.]
• “If you told me I couldn’t eat ______, I wouldn’t survive.” [I’m pretty sure you would.]
• “Is that all you can eat?” [Yes.]
• “What about ____? Can you eat that?” [No. That’s why I didn’t mention it.]
• “What can’t you eat? We can make something without that.” [I’ll tell you what I can eat. If you can’t cook that for me, I can’t eat here.]
• Adding garnishes to my meals in restaurants because the plate looks really empty. [I either send it back or pick it off if that’s easy to do.]

These are all singularly unhelpful reactions, and it would have been very easy to give up, especially considering the amount of organisation it takes to cook all the time. However, there are some real motivations to stick to the diet:

• I’m not quite 30, and I’m planning to use my body for a good few years yet.
• I like the bits of my body where they are: it could lead to me having my colon/large intestine removed or edited.
• Eating food which doesn’t agree with me has very serious effects, which I’ve only discovered this week.

The last of these is currently the most powerful. On Saturday I went to a café here in Thailand. I don’t speak Thai, and I couldn’t communicate with the waiting staff at all. I should have gone somewhere else, or eaten the food I’d got with me, but I really felt like eating something somebody else had cooked. In the end, I just ordered rice and roast chicken from the menu, knowing it would probably come with other things, but hoping it wouldn’t. When it arrived, it was in a tomato, onion and slightly spicy sauce which I decided to eat anyway. After all, I’d been a good girl for nearly a year. I knew it would probably make me ill, but I thought it would be OK. I decided to follow it up with some coconut ice cream, since if I was going to be ill anyway, I might as well eat all of my potentially ‘dangerous’ things together.

Two days later it hit me. For the last 36 hours I’ve had very bad diarrhoea and a lot of blood. I’ve started taking the prednisalone tablets I only use during a flare-up. Going to the doctor is pointless, because there is nothing they can do unless it gets worse, in which case I should be heading back to England anyway. I have all of the tablets I need for now, and as the doctor in Canada said (for £110), all they can do is tell me not to get stressed, and to eat as carefully as I already am. I’m now back on a very bland diet until I’m through this flare-up. Needless to say, I won’t be naughty again.

On the plus side, at least I now know what effect I’m looking for when I try new things, although I have no idea which of the things in the sauce caused it.

Travel

The hardest thing to deal with while on this diet is long journeys, as I have to take all of my food with me. I can’t guarantee I’ll be able to buy food I can eat on the way and/or that I’ll be able to eat on the plane. This means a lot of calculations. How long is the journey, including transit time and sitting around at airports/stations? How many meals does that mean? What about crossing time zones? Are there any restrictions on taking food into a country? How much space is it going to take up in my hand luggage? What if the journey is delayed in any way?

On the way to/from the States, this meant 7 meals, and I cried on the plane when I couldn’t eat the meals which everyone else was being served. On my return journey, they hadn’t even got the bland meal I’d ordered, so it was lucky I had my own food.

Travelling to Thailand, I needed 8 meals. I’d ordered gluten-free meals on the plane, and although I couldn’t eat everything, I managed to have a couple of hot things from the meal, something which made me inordinately happy. Annoyingly, I have to throw lots of things away, since I can’t eat any of the bread, fruit or salad which comes with these meals as I can’t see the ingredients/they’re not cooked. I’ve discovered gluten-free is normally the best starting point, since I can at least eat some of it. Frustratingly, you can’t order meals for multiple dietary requirements, like gluten-free and dairy-free – you have to choose one or the other. I’m not really sure what gluten-free vegetarians do.

Food plan for journey to Thailand

Going to the Grand Canyon for a weekend, with train journeys at either end and no stops in places with kitchens, involved 16 meals, although I was lucky to have had a diner recommended to me for breakfast, and also managed to eat in the restaurant in Grand Canyon village. I had three bags with me, most of which were just for food. The trip was worth every second of planning and every gram of weight I carried with me.

The first thing most people mention when I say I’m going to a particular place is the food and the restaurants. Since I went onto this diet, the only local speciality I’ve managed to have was Dungeness crab in San Francisco – it was gorgeous! I have no idea what real Ukrainian/Russian/American/Canadian/Thai food tastes like, since I eat the same kind of food in all of their restaurants.

When I choose accommodation, I have to make sure I have access to a kitchen. Youth hostels are particularly good for this, and I also experimented with airbnb for the first time last month, staying with a lovely family in Greenwich.

One of the most depressing things I do is walk all the way around a shop, sometimes even a medium-sized supermarket, and if I’m lucky, find one thing I can eat. Shopping in a new place takes me at least a couple of hours as I have to read all of the ingredients on things.

The only periods of illness I’ve had since March were 24 hours on arrival in the States, which I think was from the stress of the journey, 3 weeks in December when I was stressed on the very intensive course in Vancouver and didn’t know what was happening with Sevastopol, and now.

But it’s not all bad. Moving around has given me the chance to try lots of different types of food, like rice flakes in Sevastopol, lots of gluten-free things in North America, rice tortillas in Canada (which I became pretty addicted to and now can’t find anywhere else!) and rice flour in Thailand.

The benefits

Living with such a strict diet has actually had a lot of benefits.

I’ve lost 3 stone (21kg) and am the right weight for my height for the first time in my adult life.

I feel much healthier, and my bad knee doesn’t protest as much.

I’m much more aware of what I’m eating, and know the ingredients of pretty much everything I put into my body.

I’ve become a much more creative cook, and experiment a lot more to try to make my diet interesting: it’s amazing how cooking the same combination of ingredients in a different way can make it taste completely different.

I’ve learnt the difference between the taste of herbs – before I just used mixed herbs, or none at all.

I’ve tried things which I didn’t like or had never had before, like beetroot and polenta.

I’ve learnt how to cook some things I’d only ever had in meals made by others before, like squash and sweet potato.

I can now make pancakes, meatballs (though some say they’re not really meatballs because they’re not friend), and different versions of cake (one of which I was told has a similar texture to cookies) without recipes.

I almost always have food with me, so never get hangry.

I know that a large pan of rice and meat is enough for at least two days worth of meals.

I’ve realised how organised I am 😉

I’ve discovered that my friends are a fount of recipes and ideas to make my diet more interesting.

My friends and family have been very supportive and understanding.

I’ve become very quick (I hope!) at explaining colitis and my diet, and people seem to be genuinely interested in trying to understand it. Once they realise I’m not just being awkward, they’re normally very accommodating.

The future

So far, I haven’t needed to be admitted to hospital. I’m hoping that by managing my diet, I’ll be able to avoid that.

People with ulcerative colitis are at increased risk of bowel cancer, so in a few years I’ll have to start having regular colonoscopies to check I’m OK. That means I want to be based in one place by then.

I know somebody else who had to go through an elimination diet as a teenager. It took him about 3 years to get back to eating ‘normally’ with a couple of exceptions. He’s now in his 30s, and is almost always fine. It was great to know there’s a possible end point to the diet, although I know there will probably be some things I’ll never be able to have again.

I’m really looking forward to having my own kitchen again when I arrive in Poland in August, so that I can start experimenting properly again. I miss having an oven here in Thailand!

In my immediate future, it’s midnight here and before I go to bed I have to pack up the food I’ve been cooking while writing this post, so that I can eat tomorrow. I’ve been meaning to write this for a very long time and it’s good to get it out of my system!

The end

I’m very happy to talk about what’s happening to me, because I think it’s important that people know about illnesses like colitis and the related illness of Crohn’s disease, which my uncle has. They are normally invisible, and they can be difficult to talk about because of the embarrassing effects they have on your life. I also think it’s important people know that life doesn’t have to stop if you’re diagnosed with something like this. We’re all very good at getting on with life when it gets difficult.

Ultimately, I know that I am very lucky to know what is wrong with me, to be in a position to get treatment for it, and to be able to continue living my currently pretty amazing life. Long may it continue 😉