Me and My Crohn's

Modulen

Being admitted for treatment

So, after getting my Crohn’s diagnosis in December 2011, I returned to hospital in January 2012 to begin treatment and it honestly couldn’t have come soon enough. I know I wanted to postpone starting the liquid diet until after Christmas, and I certainly enjoyed my roast turkey with all the trimmings, but my symptoms escalated to an alarming degree over the holidays. Not only was I still constantly vomiting, going to the bathroom north of 15 times a day and experiencing major stomach cramps, I now had developed a strange “rash” on my legs, arms and abdomen. My mum took me to the GP but naturally they had absolutely no idea what it was, to such an extent that the doctor actually asked me if he could take some pictures for their medical encyclopaedia as he had never seen anything like it. I’m apparently now a medical model and pioneer. Yay. This “rash” then developed from large red patches into an excruciatingly painful burden. I couldn’t walk at all, so I obviously couldn’t take the stairs at home. I stayed glued to the sofa in our living room and my dad had to use a wheelie bin carrier (yes, you read that right) just to hoist me to the toilet and back. It sounds rather comedic now I grant you, but at the time it was no laughing matter.

I was admitted as an emergency on 4^th January and they provided me with a wheelchair to get around the hospital for scans and tests (thank goodness!). I can’t even begin to explain the pain of what was eventually diagnosed as erythema nodosum. It felt like my limbs were burning alive. Even a slight brush of my leg and I was in agony. Not to mention the sky-high temperature that came with it. I barely remember that hospital stay as I was so delirious for most of the time. But I do remember laying in bed with my mum by my side watching Despicable Me on a portable television while I had my first try of Modulen. If you are unfamiliar with Modulen, it is one of many brands of liquid diet. It is a whole-protein powdered formulation which is mixed with water to give your body all the nutrients it needs, without the aggravation of having to digest food.

The nurse initially brought me some little “shots” of different flavours to try, the least offensive of which I found to be strawberry. I mean, let’s not sugar coat it, it’s medicinal powder in water masquerading as a “milkshake” because they mix it with some Nesquik in order to try and make it taste less disgusting. I quickly discovered that not only the flavour, but also the amount would be a real challenge. Initially I had to drink 9 pint glasses a day at certain times (meaning I had to be woken up at 6am and forced to drink the first dose) and I felt constantly nauseous and extremely bloated from all that fluid. But after 3 days in hospital, they agreed that I was ready to go it alone and I was discharged on January 7^thwith some Modulen and my first medicine: Pentasa.

No food

Ahh, food. I was always a big eater as a child, and an adventurous one at that. I knew it would be a struggle not only consuming excessive quantities of the same gross tasting drink every day for weeks on end, but also being constantly surrounded by food that I so desperately craved but couldn’t have. Honestly, you don’t realise how omnipresent food is until you can’t have it. From being out in town and passing at least 4 restaurants, 3 coffee shops and 2 supermarkets on every street, to smelling my family’s dinner cooking in the kitchen every night. Even stupid things like being bombarded with food advertising on buses, online and in magazines and scrolling through what’s on tv to find at least 6 cooking/ baking shows. I felt completely tormented and my life became an exercise in restraint. But it was paying off. I was able to return to school within a few weeks, albeit not in “good health” but I was a trooper back then! Not eating had allowed my inflamed bowel to rest and with that, my erythema began to lessen.

School

Returning to school after all this was by far one of the hardest parts. I still wasn’t particularly mobile, so my mum drove me to and from school every day and my GP wrote P.E exemption letters. I was also given a “green card” and my teachers were all told about me, which meant that I was allowed to leave lessons to go to the toilet/ medical office should I need to. But even with all this in place, it was a struggle. Firstly, because I’d been off ill for so long that people had obviously been talking about me. There were various rumours: that I had cancer, that I went on a cruise, that I was being home schooled, that I was pregnant (ridiculous given my personality and impossible given that because of my Crohn’s I was a “late bloomer”!), etc. There were generally three categories of people upon my return: 1) people who were nice and considerate and merely welcomed me back without question, 2) people who, despite barely talking to me before, suddenly had an invested interest in knowing all the ins and outs of my absence and weren’t afraid to publicly interrogate me about it, and 3) people who thought that I was a new student because they’d barely seen me all year. And then of course, there was my group of friends. There were about 5/6 of us in total, but I was closest to 3 of them so I confided in them about what had happened. They had never heard of Crohn’s either, but with some explanation, they tried their best to support me.

It wasn’t easy, however. I still looked incredibly pale and severely malnourished, which raised a lot of suspicions- not helped by the fact that I literally wasn’t eating anything. The latest rumour was then that I was anorexic. Even the rest of my friends who didn’t know about me suspected it. And I inevitably got an endless stream of questions about my “milkshakes” which looked even more conspicuous with strange lumps of white powder floating in them. I had to bring a fair few to last the school day, so I had to carry a separate “cool” bag stocked with ice blocks to keep the formula cold enough to stomach.

Then one morning I arrived at school and the worst had happened. Somehow, the rest of my friend group had “found out” what was wrong with me. It still bothers me to this day that I don’t know how, or should I say who. They maintain that they “researched” it online and “guessed”, but one of my other friends must have blabbed. I was mortified. And this was only made worse when one of them accidently knocked over one of my “milkshakes” at lunch time. A small amount spilled on her and she freaked out, shouting “Ew! Am I going to catch it now?!” Enough said.

But eventually, I got used to strange looks and people questioning me. I learned who my real friends were and how to tell other people (politely, of course) to mind their own business. Soon I was old news and people left me be. Sure, there was still the odd comment, but if everything I’d already gone through didn’t break me, then some random peoples’ opinions definitely wouldn’t get me down. I had my friends, my family and I was back at school, learning. That was enough for me. I even established a new reputation as the score keeper in P.E as I couldn’t participate, a role which I grew to enjoy and which all the non-sporty girls envied.

Re-introducing food

So, the rules. I had to drink 9 cups of Modulen for 6 weeks straight without any food. Then after 6 weeks, I could slowly reintroduce certain food groups and test for an intolerance/ trigger for my symptoms whilst still taking a reduced dose of Modulen. At week 7, I was down to 6 cups of Modulen and a new food every 2 days. At week 8, I was down to 4 cups of Modulen and a new food every 2 days still. Then at week 9, I was on 3 cups of Modulen and a new food every day. After this I had to keep at least one cup of Modulen in my diet (usually as a substitute for breakfast) to ensure that I steadily gained weight. To organise all this, I had frequent appointments with my hospital’s paediatric dietician, who gave me a list of the order in which to re-introduce different foods. And, just for fun, I’ll list the order here:

Every 2 days:

Potato
Lamb
Pear
Chicken
Yeast
Milk
Pasta
Butter
Bread
Egg
Cheese
Cabbage
Beef
Pork

Every day:

Carrot
Tomato
Onion
Peas
Rice
Sugar
Corn
Rye
White fish
Chocolate
Orange
Nuts
Ham
Fat
Berries
Oily fish
Pulses
Herbs
Spices
Banana
Apple
Grapes

Phew, take a breath! Although painstakingly long, the reintroduction process was incredibly worthwhile. Not only does it enable the body to slowly come to terms with digesting a proper diet again, it is also designed to help patients identify which foods trigger their symptoms. I guess you could say that Crohn’s patients have a love-hate relationship with food i.e. they love food, but it hates their guts (literally). Diet is therefore an essential factor in managing the condition and everyone is different. I kept a food diary and each time I added a new food, I recorded any symptoms I had. (Check out my posts on what I currently eat to find out more about my food triggers.)

“I got home and ate my first bite of food (potato) in 6 whole weeks! If I could describe the moment in one word it would be… AMAZING!/ RELIEF!”– Quote from my journal, 16th February 2012

I have never been so grateful for the most basic of foods, to remember the sensation of chewing something solid and tasting a real flavour. Boiled potato is boring you say? Far from it. The first few days of rediscovering the humble potato were absolute bliss and taught me not to take any food for granted. I realise how bizarre I probably appeared, again especially at school. I went from eating nothing at all, to appearing to have weird short-lived fetishes with the oddest of foods.

I ate nothing but boiled rice one day and tinned pear the next and gushed excitedly over how amazing plain chicken tasted. I even remember that, despite how cinemas ban all foods not purchased at the theatre, I sneaked in plain grilled lamb chops and mashed potatoes for a snack to eat while watching War Horse! What a feast! And at this point, I was in such a heavenly foody state that I didn’t take much notice of the strange stares from the other cinema goers.

After several months of rigorous experimentation, I was back to a reasonable diet- excluding the foods which triggered my symptoms, but I still remained on 1 cup of Modulen as a daily meal supplement. I felt better than I had done for a long time and I was so grateful that the Modulen kept me well until March 2013, when the signs of my first flare up started to bare their ugly head.

Looking back

Having been on a liquid diet many times now and currently on one as we speak, I still sympathise with how difficult it is. You just have to hold onto the fact that it will help your digestive system to rest. The process taught me a lot about self-control and doing what’s best for your health, even though it may not be the most pleasant. And to this day, I have such an immense appreciation for food as well as a healthy knowledge of how my body reacts to different types of food. Not only that, I appreciate my mobility when I have it.

As for school, I am proud of how I handled my reception on returning. Its not easy being looked at like you’re an alien and being questioned about your personal life by people who wouldn’t have noticed you otherwise. In fact, now I laugh at some of the conspiracy theories surrounding my absence. For all they knew I could have been a Russian spy! After all, through intense self-study at home to distract myself from the pain and sickness, I somehow managed to maintain the highest grades of my year group- much to everyone else’s annoyance and again, suspicion. “How do you do it?”, I was always asked. The honest answer is, I wanted to have something other than my illness to define me. I was distanced from my friends, deprived of doing my favourite hobbies and sports, and suddenly just became “the sick one”. I studied so hard to instead become “the smart one”, at least that was better, and I had a say in the matter. Now I realise how I wrong I was to think that way.

My illness is a part of me, that’s a fact. But its just one part. I don’t need to be just one thing. I was still me; my illness hadn’t changed that. And anyway, I think looking back that eventually a part of me secretly liked appearing so mysterious to everyone at school. I had defied all odds; I was getting the highest grades despite barely being there. It looked like I just rocked up after 4 relaxing months at home and got an A* like a boss without even trying. If only they knew. All I can say is that, although it’s a challenge going through these things when it feels like your life is on display, you are in control of who you are and how much you tell people about yourself. I chose to keep my Crohn’s to myself, at first because I was scared of judgement and being treated differently, but eventually because I decided that it was my own business and that I had the right to share however much or little I wanted. Unfortunately, you can never escape the gaze of other people, but as long as you are content, that’s what matters.

Falling ill

So, as I sit on my bed writing this I am realising that it has been over 8 years since my journey with Crohn’s began. I had only just turned 12 years old when I first fell ill and honestly, as sad as it sounds, I cannot remember what it feels like to be “normal”. I mean, no one really remembers the first ten years of their life that well. And more to the point, no one really takes notice of their health until it’s gone. Hindsight’s a beautiful thing.

I was that child who was skinny no matter what or how much I ate. I was that child who never got ill, had every 100% school attendance certificate and seemed immune to even the common cold. The envy of many. My invincibility however proved short lived in May 2011 when I contracted a virus at school. So many other people had already caught it, had their week off and returned to school unfazed. I was a little different. After the first week had gone by, my symptoms seemed to be getting worse rather than better, and soon I was off to the GP. They told us not to worry and that it would probably sort itself out. Phew. But as more days passed, I only declined further. I entirely lost my appetite, began vomiting frequently and experienced horrendous abdominal pain and diarrhoea. On returning to the GP a couple of weeks later, I was prescribed some over-the-counter anti-diarrhoeal medicine. But the problems only got worse. Within a month or so I was going to toilet between 15 and 20 times a day (absolutely no exaggeration), I was as a white as a sheet and was practically skin and bone. After several blood tests (at which time I was terrified at the prospect of a needle, ah to be a naïve child!), I got referred to a larger hospital in Essex. I remember how terrified I was, it was all becoming rather real. Not to mention the fact that I’d been off school for months and felt like I was stuck in limbo while all my friends carried on with their lives. I’d gone from being healthy, sporty and happy to bedbound in a matter of months. I couldn’t believe this was happening to me. No one ever thinks it will, until it does.

Referral

It was during my first referral appointment that I was questioned about my symptoms. Here we go again, I thought. The same questions I’ve been answering at the GP for the last few months. Except this time, there was a new one. “Do you have any mouth ulcers?” My parents and I looked at each other wondering how on earth that was important given the plethora of severe symptoms I was displaying. But interestingly enough, the answer was “yes”. And within an instant the doctor’s facial expression changed. She told us she was going to refer me immediately to a major hospital in London, but at this point she gave nothing away as to what she suspected was wrong with me.

I had my first appointment in London on 16^th November 2011, at which point the doctors told me I would be admitted to hospital for some tests. I was completely petrified. I’d never even been to a big hospital like this and the only tests I’d ever had done were blood tests, and at the time those seemed traumatic enough. They told me they would put me to sleep and insert cameras inside me (a.k.a. a colonoscopy). “How is that even possible!?”, I asked my mum. I was a bundle of anxiety on December 12^th when I got admitted. And despite the mini Christmas tree on the children’s ward, I did not feel festive in the slightest. It felt grossly unfair that while everyone else was enjoying the Christmas season, I was stuck in a hospital bed feeling like death. And the fun was only just beginning! For that night I had my first taste of what I maintain to be the most disgusting thing to ever grace a human tongue: Piccolax. The nurses basically had to force feed me this hot, fizzing, bile-tasting bowel prep throughout the night, meanwhile I was constantly running to the bathroom and throwing up into an endless supply of kidney bowels (sorry about that lovely image!). The next morning, in my silk pyjamas and pink fluffy dressing gown, my stuffed tiger Tigy in hand for support (I got him when I was 6, so please excuse the slightly uncreative name…), I was walked down to theatre with my mum. I was a complete wreck of tears the entire way down what seemed like an endless number of stairs leading to my eventual doom. Then they asked me to lay down and put the oxygen mask over my face and through my tears I just saw my mum crying with the distress of seeing her once healthy child in this sorry state.

Diagnosis

Okay, so waking up from your first anaesthetic is weird. I felt so detached, drowsy and like I wasn’t really there. But soon reality crept back in. The first thing I saw when I opened my eyes was my mum crying hysterically whilst consulting one of the doctors. Not a good sign. After I’d come to, they sat my mum, dad and I down and explained that I had Crohn’s Disease. I’m sorry, what? None of us had never heard of that, but anything with the word “disease” in the name automatically seems cause for concern. They explained that I had “severe oesophageal, gastric, small bowel, pancolonic and perianal inflammation”. Naturally that meant nothing to me. But not to worry, after the colonoscopy they had some delightful visual aids to help explain. (If you’ve ever seen the internal imaging of a Crohn’s patient you’ll know that it is NOT a pretty sight…) “So how do I get rid of it?”- that was my only thought, other than being entirely grossed out by the look of my own insides of course. Then they explained that I couldn’t, not exactly. They told us that this was a chronic condition, in other words that I’d have it for life. WHAT?! We were all just completely blind sighted by this. How did this happen? How did my life fall apart so quickly? Will I never feel normal again? Can I go back to school? How do I tell my friends? My brain was in overdrive.

My parents then asked what we were going to do about it and the doctors explained that I had two options: steroids or an exclusive liquid diet. Naturally, my parents, who knew nothing about the condition, were against the idea of pumping their child full of any medication at all, let alone Prednisolone a.k.a. “the death drug” (now we laugh about our naivety in this department, having since been on steroids so many times I’ve developed a resistance). They refused to put me on steroids and made the decision for me, I was not to eat for a minimum of 6 weeks and only drink Modulen supplement shakes to allow my bowel to heal. The doctors wanted to keep me in hospital to begin treatment then and there, but my mum didn’t want me to miss out on Christmas at home. And I wasn’t about to go without Christmas dinner, not a chance! So, much to the disgust of the hospital, we postponed starting treatment until January 1^st, and that’s when my new life with Crohn’s really began.

Looking back

I am a firm believer that when you go through something traumatic, your brain does its best to forget. I don’t remember everything, but throughout this whole period I kept a journal. I started it for fun really, but I suppose deep down it was more of a coping mechanism and a way for me to process all the struggle and confusion.

“I must say it was probably (definitely) the worst experience of my life, but I just hope we have caught it early and the supplement diet works so I can feel normal again.”– 14^th December 2011

“I think I’m starting to get used to the idea of having a disease for the rest of my life, as mummy said she would handle it and it wouldn’t ruin anything.”- 16^th December 2011

Now 20 years old, reading this back both saddens and humbles me. I was so naïve, but somehow also so strong. Maybe it’s because I didn’t understand the implications of the diagnosis or what was ahead of me. I didn’t even know how to spell my disease (in my journal I attempted to spell it “chromes”), let alone what it meant for my life. I thought my parents could protect me from everything, so did they. Accepting you are going to have an illness that you can’t control for the rest of your life is hard, there’s no denying that. But staying positive, as hard as it can be when things are tough, is the only way forward. It may seem alien at first but living with a chronic illness will become your new “normal” and you’ll be stronger for the hard times and appreciate the good times so much more.

The Liquid Diet, Erythema Nodosum and Going Back to School.

My Crohn’s Diagnosis.