Presenting HRH Queen Crohn's

I am a 26-year old female humunculus from England. This blog is intended to be a retrospective diary of my experience, from the onset of symptoms in 2009 , to my diagnosis in 2012, until the present day, including three incorrect diagnoses, a multitude of treatments and all the embarrassing anecdotes along the way. From the days when I was blessedly ignorant of the minute details of how the bowel functions, to the days of laying in A&E, listening to an old man beg the nurse to pull the poop out because he couldn't push any more (A&E nurses are amazing human beings).

I remember being at rock bottom with Crohn's Disease in 2012 and I found it quite soothing reading about other peoples experiences with the condition. One of the biggest problems with Crohn's and other "invisible illnesses" can be the loneliness. Therefore, reminding yourself that there are other people out there who know what you're going through can be very therapeutic. It's only taken me about 2-years to get around to starting this blog. I am a skilled procrastinator in my spare time.

If you are reading this you are probably already familiar with Crohn's Disease to some extent, but for those of you who are not - IT CAN BE HELL!!!

I say "can be", because at present, I am extremely fortunate to have been in remission for just over 12 months, however the treatment for Crohn's has numerous side effects itself. Furthermore, for me remission was preceded by 3-years of absolute hell as I struggled to accept the severity of the problem and faced an uphill battle to get the correct diagnosis. Unfortunately the latter is a common problem among sufferers in the U.K.

Crohn's affects everyone differently, but the symptoms that occur in the majority of patients are diarrhoea, abdominal pain, nausea and vomiting. The digestive tract becomes inflamed as a result of the autoimmune system attacking perfectly healthy cells and, depending on the severity and location, there can be a vast number of physiological and psychological consequences. It is characterised by periods of 'flare ups', where symptoms make a normal life impossible, and periods of 'remission', whereby symptoms are manageable or absent.

There have been some comical moments and some very dark moments and it is only now that I feel I am coming out the other end (no pun intended), but I promise it will at least be entertaining! Using some colourful anecdotes and helpful quotes, I hope just one Crohn's sufferer feels a little less lonely.

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About Me

I'll try to keep this brief. I am not particularly interesting.

Age: 26      Gender: Female     Nationality: British

Height: 5,foot 1/2inch or 154cm (AKA hobbit)

Weight: Depends on my symptoms! About 7 - 7 1/2 stone or 100lb or 46kg average

Likes: SLEEPING, walking in the countryside, The Big Bang Theory, Only Fools and Horses, football

Dislikes: Ignorant people who think they know everything, reality TV, slow internet connection, steroids, being an inpatient, politicians, having to buy my clothes in the kids section... this list could go on for a while - in case it isn't clear yet I also have depression!

If I Were An Animal: Jack Russell - big personality in a tiny package, loyal yet independent, energetic and workmanlike.

I am very tiny, so when people

get drunk they like to lift me in the

air to make themselves feel strong

• I was born in a seaside resort in South East England

• I have two older brothers who tortured me as a child and then complained that I was a tomboy

• I grew up in a single-parent working class family in a semi-detached house. I was part of the last generation in this country to spend all their spare time playing outside - before computers, obsessive parenting and playing in roads became off-limits because there are so many cars.

• I loved school and learning. Unfortunately I loved winding people (i.e. teachers) up even more.

• When my Dad was diagnosed with cancer in 2006 I decided not to be a checkout girl and to go to uni instead (this was prior to the obscene tuition fee hike of course, I would never dream of going now).

• In my final year of uni I developed worrying gastro symptoms. However, as I was 21 (and therefore invincible), instead of listening to my body I decided to go backpacking on the other side of the world.

• Forced to return to Blighty and my beloved NHS, because of those very symptoms, I have spent the last few years trying to obtain a correct diagnosis and adjusting to my unexpected life as someone with a chronic illness

Apologies In Advance

Before reading the Blog you should probably take note of the following:

1. Please forgive me if I use the word 'journey' in any context other than transport - It makes me feel like I am part of a cult, but unfortunately it just pops out sometimes.

2. I may be explicit. The symptoms of Crohn's Disease are not everybody's cup of tea so please do not be offended.

3. Sometimes I may sound like a crazy spiritualist. I promise I'm not, I just have a mind that is beyond reasonable control and will think what it thinks.

4. If you are a prospective employer of mine please take note of the excellent grammar and spelling and ignore the actual content as much as possible.

5. If you are a prospective romantic partner, please cease reading immediately.
6. If you are one of those blokes that struggles to accept us ladies have to poop, this blog probably isn't for you. 

7. If you dispute my title as 'Queen Crohn's' please contact my lawyer. First you will have to pay for me to hire a lawyer of course.
8. Any individuals or dates referred to are entirely from my memory. My memory is rubbish so feel free to correct me where necessary.
9. Some images on the site are my own so feel free to use them for non-commercial purposes, and links to third party sites are provided where appropriate, but I accept no responsibility if you happen to use something illegally!

30. Full Circle?

Period: July 2014

When I returned from my holiday, I received a letter from the hospital telling me that they needed to cancel my consultants appointment in August and had rescheduled me for the next available time - in December! My first reaction was naturally anger because I just wanted to try and come off the Infliximab to know one way or the other if I could stay well. Then came relief, because it meant at least another 6-months of treatment and (finger crossed) staying relatively well. Then came acceptance of that which is largely beyond my control.

If you have read this far, you may recognise that since the onset of symptoms, I have essentially followed the 5-stages of grief, except anger and bargaining were the other way around - but I guess I've always been a bit mixed up  :-p

If you have read the blog in it's entirety you will know that in the beginning I was very obviously in denial. While backpacking in New Zealand in 2009, I pushed my body extremely hard because I refused to let my symptoms prevent from getting on with my everyday life. For a long time I convinced myself that vomiting, diarrhoea and severe pain are in fact perfectly normal or at worst it was caused by IBS. I don’t regret this because I did have an amazing time, but I can’t help but wonder how different the whole experience would have been without the constant intrusion of Crohn’s Disease. Throughout all the further stages of the cycle there was always an element of denial!

In terms of bargaining, when I returned from backpacking, I tried to live a healthier lifestyle in the hope that it might somehow stop my symptoms. I improved my diet, tried to give up smoking and went crazy for exercise. By the time I received a diagnosis in 2012 I was very much in the anger phase. Angry at myself for not being pushier with the doctors. Angry at all the doctors and incorrect diagnoses. Generally just angry that my life had effectively been put on hold because of the situation.

Following the Crohn’s diagnosis, the depression started. Unfortunately, with the experiences that followed in terms of steroids and hospitalisations I allowed it to manifest. Furthermore, I convinced myself that once I got my physical health under control, my mental health would magically follow suit.  By the time I started Infliximab and my Crohn's recovery, 12-months later, the depression had well and truly taken hold. Where I had previously been so preoccupied with my physical symptoms, their absence now magnified the depression and it took the place of Crohn’s as the constant worry in my life. I now feel like I am in the acceptant stage, but it’s most definitely not complete. For one thing the recent improvements had a lot to do with those annoyingly effective anti-depressants, and that's hardly a long term solution! Furthermore, little things like an inconvenient urge to poop or severe fatigue still fill me with resentment rather than the serene acceptance I would prefer. 

In July, having been off work for a month, I had intended to commence my job hunt and I realised that starting a new job in my current frame of mind was not the best idea if I wanted to sustain the little improvement I had made. Back in 2012, when I finally admitted defeat and took myself to A&E with Crohn's after 3-years of hell, the realisation that I was unable to work had been a significant factor in forcing me to take the matter seriously at last. I now found myself in the same position with depression and I visited the doctor to obtain anti-depressants. I was fed up with feeling miserable and I knew this wasn't the real me.I had also decided to cease counselling - the thought asking a new employer for even more time off made me feel depressed in itself. I thought asking for anti-depressants would feel like defeat, accepting that I could not handle this alone. Instead, the recent me-time had afforded me some self-reflection - I now realised that depression was not my biggest weakness, it was the inability to ask for help that was the primary problem!

28. Struggles 'R' Us

Period: May 2013

Either the stress or the fatigue or coincedence made my Crohn's symptoms a lot more severe during this period. It had been some time since I had experienced a prolonged period of severe pain and it was an unpleasant reminder of the uncertainty that the future may hold. For some reason, I still found it difficult to accept that Crohn's would be a constant presence in my life.

The experiences with the car once again reinforced my negative perception that I was a very unlucky person. At the same time I was finding it increasingly difficult to commit to my job. In the past I had always given 110% to every job, no matter how menial, but I now found myself struggling to muster any motivation or enthusiasm. The same was true of my studies. 

When I contacted the car dealer a fourth time, within a week of the third "repair", to tell them that the problem had returned, I was informed that the owner was on holiday and no action could be taken until his return in two weeks time. I sought counsel from Citizens Advice and I proceeded to send them a letter by recorded delivery outlining my issues and how I would like it to be solve - I wanted to return the car for a full refund, which, under Trading Standards, I am entitled to do if I have given them three chances to repair. Following a phone call to Citizens Advice, I proceeded to send the garage a letter outlining the problem and my request for a refund.   

In the meantime, I was spending £100 a week hiring a car just to get to work and back. The alternative was simply not an option with my morning poop issues, as it would require a bus, a train and a 20-minute walk every morning and evening. My mental health sunk to an all-time low - I knew that the confident pre-Crohn's me would have coped with these difficulties no problem, but the chronic fatigue and stress was too much in my fragile state. I decided to hand in my notice and work and for the first time take a break from everything to get my head together. My family were fairly unaware of the severity of my depression and as a result I knew they would criticise me for giving up work, even temporarily, so I lied and said that they had decided not to keep me on after my probationary period. Living with my Mum and brother for so long had not really helped me beat the depression as they are inherently negative people. For instance, when I was walking out the front door for a job interview earlier this year my Mum's exact words were "just don't get your hopes up"!

27. Crohn's: A Very Tense Commute

Period: May 2014

After the second trip to the car dealers for a repair, the stress was starting to get to me a bit and my recent burst of positivity was a distant memory. I felt like they weren't taking their responsibility seriously and were just trying to fob me off. What's more, I was starting to hate myself again for being a pussy and not putting my foot down with them, just like I had done with the doctors! Instead, I would drive over an hour to work each day, and then again home, constantly worrying that I was going to break down. When the problem returned a third time I emailed them and after they refused my request to have the repairs done at my local garage, I yet again agreed a convenient time  to drive the 25-miles to the garage in fear of what was going to happen to the car. In the email I had explained that I would be leaving the car with them until a couple of days later to give them plenty of time to finally figure out the root cause.

When I arrived the owner of the establishment rudely told me that they were not expecting me because I hadn't phoned to say I would be bringing the car in. I told him that I had an email that showed I was told to arrive with the car at this time and did not mention any need to call in advance. He cut me off and said "I can show you an email" - and I actually doubted myself and thought perhaps I had missed something. He told me that I was aggressive - this is a 6-foot man accusing a 5-foot non-confrontational woman of aggression! Before this happened, I had been loathing myself for some time because I am not insistent enough in such circumstances - the most obvious example being my dealings with doctors!

I nearly got angry, but thankfully I quickly realised that shouting wouldn't work and they would have an excuse to refuse to take the car. Instead, I did the only thing I could think of to make them take me seriously and I decided to make them feel extremely uncomfortable by crying, which wasn't difficult - I just remembered how much stress and inconvenience this whole saga was causing me! It sort of worked, but they insisted on doing "the work" there are then while I waited in the showroom. Before I was given my keys they made me sign a document stating that I had arrived unannounced, and because I hadn't given them time to source the correct parts, should the problem return they would allowed a fourth opportunity to repair the vehicle! (In the UK car dealers have three opportunities to repair the vehicle under such circumstances). I just wanted to get out of there so I signed it and vowed that I would not be returning to be taken for a mug once again. Needless to say, when I got home I checked the email and there was definitely no mention of phoning ahead.

After this, my self-esteem was fairly low. I was kicking myself for being duped in to buying a car that had caused me nothing but stress from the moment I brought it. I started to retreat in to myself once more, I felt increasingly isolated at work and I was finding it hard to really settle in to the job, not least because of all the time I had to take off to attend medical appointments. With the uncertainty over the car I was reluctant to move out of my Mum's - with the monthly fees for my course taking a handsome slice of my income I couldn't afford to move out and buy another car. Therefore, the commute to work was taking its toll on my pathetic body and seriouslt testing my anal sphincter control n the mornings!

26. Tribulations and Trials

Period: March 2014 - April 2014

Just a few days before my notice period came to an end I landed the perfect job that it ticked all the boxes -.it was in Human Resources, it was some distance away so I would be more motivated to move out of Mum's and, best of all, I would be working largely on my own, so less stress about interacting with others. I finally felt like the tide was turning in my direction. It was nice to recognise optimism in my thoughts again, which made me hope that the old me was slowly returning. What's more, for so long I had been unable to think about the future because it brought about a lot of fear and anxiety, but I now found myself capable of looking ahead and seeing some blue sky at last.

The plan was to settle in to the job before moving closer within a few months. As my new job was about 30-miles away I was delighted I had invested in a car. I had purchased it from a dealership, to be more confident there wouldn't be any nasty surprises, and if there was it would come with a short warranty. Unfortunately, in my optimism I had forgotten that many car dealers are unscrupulous thieves who would sell a death-trap to their grandmother. On the journey from the dealership back in February, the oil light and "stop" warning lights had started flashing whenever I slowed for a junction of traffic lights. As I was about 5 miles away from work  and 20-miles from the garage - and the vehicle had supposedly just undergone a full safety inspection - I continued my journey and called the dealership as soon as I arrived at work. You have no idea how much I regret not rejecting the car there an then, but I wanted to give them the benefit of the doubt.

They seemed fairly relaxed about it on the phone and told me it was fine to drive and I arranged to take it up for a repair the following week. This solved the problem for a few weeks, then it started happening again intermittently before slowly getting worse. By this time I had started my new job and it wasn't so easy to get the car to the dealership, which was 25-miles away from my house in a totally different direction to work. Nevertheless, I wasted another Saturday taking the car back, only to return for my keys to be told they had simply added "oil stabiliser" and still couldn't tell me what the problem was!!!

In the meantime, during the first two weeks of my new job I was scheduled to have my Infliximab infusion, I also had an appointment with the gastroenterologist; an appointment with the gynaecologist to check on the state of my cervix again, and an appointment with the councillor! I ended up cancelling the appointment with the gastroenterologist because I couldn't bear to ask for so much time off.

25. Fighting The Current

Period: January 2014 - March 2014

In the new year I started to pull myself together a little bit. I still enjoyed being alone more than being in company, but I forced myself to accept invitations to socialise. The big difference was the fact that for the first time in several years I had been able to enjoy a normal Christmas and New Year, without the stress of worrying that every little thing I ate would make me feel unwell.

Until now, I guess I had been hoping that the Infliximab would continue to improve my health, but instead I had reached a point where I realised that this was as good as it was going to get. I suppose a part of me had held on to the hope that I would be as fortunate as my brother and essentially make a complete recovery (that said, while I have been typing this he just had a fart or poop moment and had to throw away his second pair of underwear in month, I shouldn't laugh but he is an ass so I can't help myself!).

Instead of waiting for things to get better, I started to accept that my bodily functions would always be a little bit unusual and, while I didn't always feel great, I should appreciate the times when I did feel good. Furthermore, for so long I had refused to settle down and make some roots because I had always held on to the hope that I would be going backpacking again, but I was now begrudgingly accepting that this was my life and it was time I started making the best of it. Therefore, I spent January deciding what I could do to make myself feel better (i.e. improve my confidence and motivation) by spending the money I had been saving for my travels. I guess even my extraordinary self-denial had to face up to reality sooner or later.

With my health as good as it would ever be, I wanted to move on from the last few years and start afresh. It suddenly felt like I had been waiting for this moment for a very long time and I threw myself in to the effort 100%. I have never had much luck with cars, but then again I had never spent more than a few hundred pounds on a vehicle before. My previous old banger had died on me a few months before and it had become a nightmare travelling the 20-mile round trip to work by bus. Therefore, on the 1st of February I spent £2000 on a car. Furthermore, knowing that the unpredictable hours in my chosen industry of hospitality were not particularly conducive to a healthy routine, I also decided to follow my interest in Human Resources. I enrolled on a pricey Human Resources Diploma, handed in my notice at work and started looking for appropriate jobs all over the county (yes I realise I seem a bit bipolar right about now!).

24. Plodding Along

Period: October 2013 - December 2013

Returning to my old job was good for me. Being hospitality, there was a high turnover of staff so plenty of new people to get to know, and enough of the same team to feel right at home straight away. But I still held back and kept my distance, lacking in confidence and practice at forming friendships.

I just couldn't understand why I wasn't happy to have my health back. In reality, I was delighted to be well again, but for so long my daily routine and thoughts had been dictated by my Crohn's symptoms - I didn't really know where to start to get back to normal. During this period, I found myself just plodding along, trying to get the dreaded depression monkey off my back but lacking the tools, support and motivation. What's more, I could no longer blame my sour mood on the Crohn's symptoms and instead I started to blame myself.

By this time, I had lost contact with ALL of my old friends. I find it difficult to say "no" and as my health had deteriorated, instead of picking up the phone, being honest and saying "sorry I can't come out tonight, I'm not really feeling up to it", I chose to ignore the phone, or just turn it off completely for extended periods of time. For some reason, I had felt like my friends may not believe me, or worse still, think I was using the illness as an excuse. Gradually the phone had stopped ringing and before I had realised it, I was completely alone. It had also been a long time since I had encouraged new friendships, as I just didn't feel like I had much to offer in that way of time or fun! 

This was a marked difference from my attitude and personality just three years previously when I had set off backpacking to NZ, and I struggled to reconcile myself with these changes in my character. I felt that on the outside I was still the same person, at least that is what I tried to present to the world, and if I allowed myself to form close friends they would soon realise that the real me was boring and suicidal, which I couldn't handle. It felt like a catch-22 situation. I couldn't get in touch with old friends without explaining that I had frozen them out because of depression; I couldn't make knew friends because they would quickly realise I had depression and I couldn't get out of depression because of the overwhelming loneliness.

23. Emptiness

Period: September 2013

Having been working part-time as a barmaid, at the end of August I took the decision to return to my previous employer. I was still experiencing relatively mild symptoms, like urgent pooping, cramps and swelling and I was also still relying on the Fortisips for about 600 calories a day on average. But the symptoms were ten times more manageable than they had been 6-months earlier and I was more concerned about getting my mental health in order now. I considered returning to a more challenging job to be an important step for improving my confidence.

However, in early September, between the two jobs, I spent an entire weekend in my bedroom with the curtains closed, doing nothing but smoking weed and researching suicide on the internet. Thankfully I've got a very strong sense of guilt and so far this had always stopped doing anything stupid, but I realised it was now a serious problem and I went to the GP surgery first thing Monday morning.

I was prescribed anti-depressants and promised the doctor that I would arrange a new appointment with the councillor. Unfortunately, I was so full of pride and euphoria for admitting to myself and my GP that there was a problem, that I didn't think I needed the anti-depressants after all, so I threw the prescription away! If you've read this far it goes without saying - I'm a bit of a independent, stubborn idiot! However, I did make an appointment with the councillor.

It was around about this time that I read a comment on a Crohn's forum that I will never forget. A women had posted a message saying how lucky we all are to have Crohn's disease because we will get to know our bodies so much better. I envied her that positivity. My body and I were much happier when me maintained a cool, wary distance. While I try to look on the positive side as much as possible (I will probably never be obese!), I would gladly sacrifice any possible benefits to not feel like I'd lost a couple of years of my life to Crohn's.

22. On The Brink

Period: June 2013 - August 2013

I was informed that it usually takes about three infusions before it;s clear whether the Infliximab is working or not, which would take a couple of months. Not for the first time, I felt like I was in total limbo. I would not have believed myself capable of being so negative, but the fear of yet another disappointment led me to be extremely cautious in believing that the Infliximab was working.

in June I had my first ever smear test. Naturally, it did not come back clear and I received a letter informing me I had moderate dyskaryosis, or "pre-cancerous changes in the cervix". It further reinforced my increasingly negative perception that I was an extremely unlucky individual and that I had become one of those boring people who spends all of their time attending medical appointments! After the indignity of the colonoscopies I now had a couple of delightful colposcopies and  the affected cells were lasered away.

Nevertheless, slowly but surely my Crohn's symptoms started to improve. It was a very gradual change but by August I was no longer in constant pain and there was an element of normality to my pooping. I had also completely stopped vomiting. Around this time I finally received an appointment with a councillor, however I decided to cancel it. Instead of learning from my mistakes with the Crohn's, I refused to accept that I had depression and I was determined to snap myself out of it. I reasoned that my physical health was improving so I had no right to be depressed. In fact, I felt extremely guilty that I wasn't making the most of being well again. I also declined the councillors appointments because I was fed up with being in medical institutions all the time!

Throughout the past couple of years, I had always assumed that once my physical health improved I would just pick up my life where I left off. However, what I hadn't really considered was how much it had changed my life and me as a person. After three years, I was so used to being permanently ill that I just didn't know how to handle being healthy. I was so used to saying "no" whenever people invited me out that I couldn't bring myself to say yes to anything. I slowly but determinedly started to distance myself from the outside world even more - I eventually suspended my Facebook account, changed my mobile number and spent most of my spare time alone.

The worst part was, to the outside world, for instance colleagues, I seemed extremely happy. During my illness I had spent so long pretending to everyone that I was fine that I was now conditioned to be a different person in public. At work, all my colleagues and regular customers saw me as a happy-go-lucky character that could handle everything. Alone, I would spend my time dwelling on the fact that I was lying to everybody and hating myself for it.

21. Hopelessness

Period: March 2013 - May 2013

In February, I took the decision to change jobs. In my current position, unpredictable absences were a major inconvenience for my colleagues and, although they had been fantastically supportive throughout everything, I just wanted to be without the guilt of letting my team down. Although I enjoyed my job, when I went back after being off sick for a couple of months I permanently felt like I needed to prove myself to them. It was all in my head of course, but that didn't make it any easier. A previous employer was happy to take me back on and although the job was a little more physically demanding, unpredictable absences were more manageable.

Unfortunately, a few days before I was due to start, I ended up back in hospital again fearing for my life. Back on the steroids for the third time in a year, I hit rock bottom. Just 12-months earlier I had still been determined to get well and eventually go off travelling again, but throughout that time I had suffered disappointment after disappointment as I struggled first to obtain the correct diagnosis and then to get the doctors to take me seriously. Whilst in hospital (and back on steroids for the third time in 12 months) the specialist IBD nurse informed me that I would be starting Infliximab infusions the following week, but I could not allow myself to even dare to hope that it would work.  If Infliximab proved ineffective, surgery would be the only option, but I already knew full well that surgery would not guarantee a Crohn's-free life. Although I couldn't see it at the time, I was already suffering from depression and I couldn't find any hope left to believe that I would return to a "normal" life.

Starting the Infliximab infusions felt like defeat in itself. If they did work, at around £12,000 a year per patient according to the NICE guidelines, I would be tied to the NHS for at least a couple of years, which meant letting go of the backpacking dream. I found it very difficult to accept how much my life had changed when I had expected to be making the most of my early twenties and the freedom that comes with it. After being discharged from hospital I went to the GP surgery to obtain my prescriptions:

40mg Prednisolone daily

100mg Azathioprine daily

Tramadol when required

Fortisip x3 per day
Lactulose 15ml x3 per day (all the other medication had made me go from severe diarrhoea to severe constipation!)

When the GP read my hospital notes, he commented on how difficult it must have been. I would like to say I uncharacteristically burst in to tears, but by this time spontaneous blubbering was becoming a pretty common occurrence! I declined anti-depressants. I felt like I had been defeated by the Crohn's and I could at least beat the blues without medication! Plus I worried about my poor little liver already working overtime to process all the Crohn's medication. I did accept a referral to a counsellor - having distanced myself from the world for so long I recognised it would be helpful to have someone to talk to, even if I dreaded the thought of it.

Rather than rushing back to work, I decided to take my time to try and recover properly. The steroids meant I was back to sleeping just 3-5 hours a night, but I didn't seem to have the energy or euphoria I experienced previously. Not only that, but because of all the medication I was taking, I had gone from pooping all the time to not pooping at all. After a fortnight period in which I had only pooped once (you are right to wince), I went to the GP for something a little stronger than Lactulose. When there was still no let-up after a further 4-days, I took matters in to my own hands. The doctor had prescribed me sachets to take three times a day, but I woke up one morning and decided to drink one every hour until I pooped! I don't at all recommend taking matters in to your own hands like this, but it worked like a charm.

20. Rollercoaster

Period: December 2012 - February 2013

After coming out of hospital, I felt completely invincible! For the first time in a couple of years I had bags of energy and I wasn't in constant pain. A family friend with ulcerative colitis warned me that it was the prednisolone making me feel so good and that I shouldn't push my body too hard, but I just wanted to make the most of feeling so amazing! I had ridiculous insomnia, getting  between 3-5 hours sleep a night, but at first I didn't care because I had so much energy during the day.

It was around this time that I noticed a significant change in my Mum. I hadn't realised it before, but my declining health had a massive impact on her mental well-being and when I arrived home from hospital she was suddenly more relaxed. I felt extremely guilty thinking about what I had put her through - if I have children I seriously hope they do not inherit my stubbornness!

I insisted on going back to work full-time immediately, but my bosses were great and forced me to come back gradually. Having watched my slow descent first-hand (and knowing how stubborn I was) at least they realised I wasn't ready, even if I refused to see it! I tried to enjoy that Christmas, despite being on the LOFFLEX diet, and in my euphoria I started thinking about the future again. Unfortunately, by the time my prednisolone dosage was reduced to from 40mg to 20mg, my symptoms were coming back with a vengeance and my mood swings were making life very difficult. I wish I had put a camera in the car, because my road rage was out of this world!

At my hospital appointment in February, by which time it was clear the prednisolone had not had the desired effect, the doctor prescribed me the immunosuppressant Azathioprine. Unfortunately, I was back to feeling hopeless and I was painfully aware of my lack of conviction that the treatment would work. I was conscious of how negative my mindset had now become, which made things much more difficult as I have always believed that the mind plays an important role in physical health.

19. Drama

Period: December 2012

And so, three years after my symptoms started I was admitted to hospital and placed on intravenous hydrocortisol. Within a few days I felt a million times better. After so long, to have some respite from the pain was the most incredible feeling in the world. When I looked in the mirror after a few days, I was shocked to see the difference in my face! In that moment I finally realised why everyone had been telling me how ill I looked (yes, more self-denial!). After a week, the doctors informed me that they had managed to squeeze me in for a colonoscopy the following afternoon. As much as I disliked the thought of taking a bowel prep while using a shared toilet, I hoped that they might finally have some success in reaching the affected area.

I also hadn't pooped the whole week I'd been in hospital and at least the Moviprep helped with that!

During the colonoscopy I was rambling away to the team in my drug fuelled stupor and watching the inside of my bowel with interest. Everything in my large intestine looked healthy enough and they were approaching the entrance to my small intestine. A Junior doctor I was familiar with had taken over the camera to gain some experience. I don't think the poor man will ever forget me! I remember them injecting the fairly innocuous drug Buscopan, which I had received during my previous colonoscopy, and I vaguely thought "that's strange, the injection is quite painful and it was a brand new cannula this morning". 

That was the last semi-coherent thought I had before a sharp pain started to build in my head and quickly overwhelmed me. The team must have noticed something was wrong when I went straight from jabbermouth to total silence. When the nurse asked if I was OK, all I could do was mumble "my head, my head, my head", over and over again. I felt the doctor pull my t-shirt down over my shoulder and heard him say I had I rash. Then I heard them say my face was swelling. At first the sedatives and pain stopped my brain processing things and I didn't really know what was happening. Eventually, after I had vaguely heard the word 'epinephrine', somewhere in the back of my mind I realised I was having an anaphylactic reaction.

When I was eventually wheeled back on to the ward a short time later, the swelling and the rash was slowly subsiding, but it was a little unnerving when I opened my eyes the following morning and found myself staring at an epinephrine needle. Apparently it was left there in case I had another reaction during the night! Needless to say, they still weren't able to view the affected area of my bowel.

18. Crohn's: Acceptance

Period: November 2012

It was now three years since the first severe episode and yet I felt even further away from a solution. Having finished the liquid Fortisip diet - with limited success - I was to go straight on to the LOFFLEX diet (low-fat, fibre-limited, exclusion diet). I had assumed it would be difficult maintaining the level of self-control needed to follow such a restrictive diet, but in fact it gave me a sense of deep satisfaction. For the first time it felt like I had some control and that had been severely lacking in recent months. Following this strict regime was something I could do for myself, safe in the knowledge that I was doing the best thing for my body. If anything I became a little obsessive about it!

I had been off work for nearly 2-months and I had made arrangements to return on a part-time basis. However, when I started to slowly reintroduce solid foods in to my diet the symptoms immediately worsened. The pain increased dramatically and I started vomiting within a few days. I had still not received an appointment for my MRE and I was aware that I would not be able to return to work as scheduled. After my life had slowly been consumed by my symptoms, it took the realisation that I was unable to work that made me accept that A&E was my only option. Even so, I was still very reluctant to make a fuss and delayed it for as long as possible, trying to hide the severity of the symptoms from my Mum.

Then, about a week after reintroducing solid food, I feared enough for my life to agree to go to the hospital. I had lain awake in to the early hours of the morning with my stomach slowly getting larger and larger. The pain became unbearable and in my fear I genuinely believed that my bowel was about to rupture. My Mum phoned for a taxi whilst I started vomiting. When I had finished vomiting, the swelling reduced and the pain subsided slightly. As hard as it may be to believe, I actually considered cancelling the taxi and just climbing back in to bed to try and get some sleep! Thankfully, I made the right decision.

17. Crohn's: Realisation

Period: September 2012 - November 2012

By the end of September, it was clear that the Pentasa was having absolutely no effect and I was finally forced to take time off from work. I had been waiting for an appointment with a dietician since July and when I attended in October my weight was below 7 stone. The dietician was fantastic - in all honesty she was the first medical professional I had met with who genuinely seemed to want to help relieve my immediate symptoms. She immediately placed me on a liquid diet. For 4-weeks I was to consume nothing but six Fortisips (1200ml) per day and water.

Halfway through the diet I had an appointment scheduled with the consultant, by which time my pooping had eased a little and I had stopped vomiting, but I was still in constant severe pain. The liquid diet also made my A-hole burn so much it felt like acid leaking out of me! I explained that the Pentasa had done absolutely nothing and asked that I stop taking it. I was on 4g on day, which meant taking eight giant pills without any apparent benefit - in fact most of it just seemed to come straight out the other end as little white granules! My appointment was in fact with a registrar and he gave me neither a "yes" nor a "no" when I put the question to him. I also explained that I had been off work for 4-weeks and that the liquid diet had so far provided little relief. To be honest, by now I was starting to lose faith in the care I was receiving and I think it's fair to say a lot of people would have lost faith a long time ago. When the registrar showed no response whatsoever to my tale of misery I burst in to tears once more as I felt the hope drain out of me.

Prompted by my outburst the registrar went in to the next room to speak with the consultant and when he returned he advised me that they were going to refer me for an MRE. In the meantime I was to continue with the liquid diet. I left the hospital feeling very alone. For the first time, I finally resolved that I would attend A&E should the liquid diet prove ineffective. It became crystal clear that if I relied on these useless appointments I could be waiting forever for some kind of relief. It made me realise why A&E departments are struggling to cope with patient numbers! (BBC)

With every new appointment, new test and new treatment over the last few years, I had been filled with hope that I might get answers and solutions. With every new disappointment, my hope had faded a little. Having seen my life become nothing but worry and illness at a time when I should have been enjoying myself and starting my career, I was slowly starting to fall in to the abyss of depression. For me the worst part was feeling like I had no control over my life. I had been off work for over a month and working only part-time hours for several months prior to that. At 24-years old, I could see no realistic prospect of being financially stable enough to move out of my Mum's house, though I was grateful to have a roof over my head for relatively little rent. I had also watched my life quickly slide from the high of graduation and backpacking to endless pain and embarrassment. However, instead of asking for help with depression, I did my usual routine of pretending everything was fine. It's decisions like this that make me seriously question my cognitive faculties!

16. Crohn's: Patience

Period: June 2012 - August 2012

The primary focus of my life for the previous 12-months had the waiting for various appointments, but at least I now knew what was wrong with me. When I was doubled over in pain or vomiting I could at least tell people what was causing it now! Unfortunately, I didn't know much more than that and everything I read on the internet seemed to contradict itself constantly. I was in a state of limbo, not knowing what I could do to make the symptoms better and with no idea if and when there would be an end to this hell. My mental health was becoming more and more fragile and this was not helped by the steroids playing havoc with my temper.

I remember on one occasion the refuse collectors knocked on the door to ask if I would move my car (living in a cul-de-sac, parking is limited so even a kerb space is a prime spot!). Having got home from work at midnight I was still half asleep when my Mum woke me up.  I grabbed my keys and trudged up the hill to the car. I asked the chap if his colleague would back-up the truck slightly to give me room to manoeuvre. Not impolitely but perhaps cordially. As I went to get in the car I heard him mutter something about my parking. This was my first taste of steroid-rage - I just let RIP!!! Every profanity you can think of coming out of this tiny little woman was enough to leave the poor man rooted to the spot in shock. Once I had finished, I just got in the car, moved it and went back to bed to dwell on how little control I seemed to have over myself.

Every day was now a struggle, from dealing with diarrhoea every morning to wondering if I was going to vomit every time I ate. My weight was slowly dropping and I tried to eat as much as possible just to stop my Mum nagging at me. I had been forced to quit playing football in March and in July I had to reduce my hours at work. I was permanently exhausted and it was seriously taking its toll. I felt very lonely yet being with people just made me feel lonelier and I was too tired to enjoy myself when I did socialise.

At my next appointment in July I advised the consultant that the steroids hadn't made much difference, except perhaps to delay the symptoms getting worse. I was prescribed the anti-inflammatory drug Pentasa and went home again full of hope that it might work. It brings a nostalgic smile to face when I remember how blissfully ignorant I was back then - Pentasa is a relatively limited Crohn's treatment used to treat mild to moderate forms of the disease. Full with optimism that this would be the treatment to put this matter to bed, I set off to a music festival in mid-August, with a substantial supply of toilet roll and wondering if there would be anything on sale that I could reasonably expect to eat without unpleasant repercussions. Part of me still tried believed it was the things I ate that brought about my symptoms and that I could just get it under control with my diet. I suppose its a natural response of the brain, when eating seems to bring about unpleasant symptoms like pain and vomiting, it is only logical that food must be the cause.

Naturally, when setting up our tent for the festival, toilet access was the key priority and we pitched up overlooking a nice big block of smelly port-a-loos. On the second morning, I awoke to find a small queue forming at the toilets. As was the norm by this point, within a few seconds of regaining even the remotest degree of consciousness, I needed an urgent poop. I calmly joined the queue doing my utmost to stop the inevitable and I had made it to the front of my line, when a lorry pulled up and the driver announced these toilets were closed for cleaning and we would have to go over to the other side, where there was already a significant queue forming. Swallowing my pride, I promptly crept up to him and advised him that I had bowel disease and waiting any longer was not an option for me. Bless his heart, he shouted to his colleagues that they were to wait for me to finish and nodded me in. Although I enjoyed the festival as much as possible, it was a bit of a wake up call when I looked at the pictures and saw how sick I looked, all pale and gaunt.

15. An End To Ignorance (And Anal Virginity)

Period: March 2012 - May 2012

Within a week of my Crohn's diagnosis, I called the IBD nurse and left a voicemail, explaining that I was told to call if I needed a prescription. I waited by the phone all day. As the following day was Saturday, I had to wait until Monday to visit the GP. I explained that, now they had told me it was Crohn's, surely there was some medication they could prescribe to help with my symptoms?

The GP contacted the IBD nurse directly and I was put on a 3-month course of the steroid Budesonide. In May I had the delightful experience of my first colonoscopy. If you have never had a colonoscopy, let me tell you that the actual procedure is a doddle. It is even quite fun watching your bowel on a screen. What isn't fun is wasting an entire day of your life drinking copious amounts of what I can only describe as drain cleaner, to clear your bowels completely.

When I arrived for the procedure the matron was lovely and explained that, as my inflammation was in the small intestine there was a high chance they might not be able to get the camera inside, but they would try to get a biopsy sample at least. To be honest this news came as a bit of a shock to me. I had been anticipating the colonoscopy as the beginning of the end to this hell. I had been on steroids for a few weeks and, apart from making me increasingly prone to rage they did not seem to be having any significant effect. To find out that they may not even be able to confirm it was Crohn's disease was a big disappointment and I was annoyed that the consultant had not taken a few minutes out of his day to explain this to me previously.

When I had recovered, my Mum and I were taken in to a tiny room with a desk and a nurse. When she sat there and told me that my colonoscopy was clear and the most likely cause for my symptoms was IBS, I just wanted to cry. Before I could scream at her that I did not have IBS my Mum politely informed her that she was wrong and that we already knew it was not IBS. Instead of listening, she told us WE were wrong and started blathering about peppermint and fibre. Knowing my temper was already close to the surface because of the steroids. I did the only thing I could and politely stood up, thanked her for her time and took my paperwork, which had been sitting in front of her.

It was not until I arrived home and read the notes that I discovered they had not even been able to access my small intestine after all. At the top of the page it read quite clearly "CT scan shows inflammation of the terminal ileum" and at the bottom it stated just as clearly that they had been unable to access the terminal ileum. They had been able to take a biopsy, but this turned out to be too fragile for examination. In my anger I fired off an email of complaint to the hospital about the nurse. To their credit they did contact me within a couple of weeks, but once I had simmered down I decided to let it go.

14. Crohn's: A Diagnosis (Sort Of)

A Portrait of Crohn's Disease

Period: February 2012 - March 2012

By this time, many of my colleagues and friends were also aware that there was an issue, but not how serious it was. By this time one of the most frustrating aspects of the whole ordeal was not being able to tell people what was causing it, because although I had my suspicions, I still didn't have a diagnosis. It also wasn't easy having to dash away from the desk to get to the loo in time. There was nothing more nerve-racking than being in the middle of a telephone reservation when you realise you're about to poop - they were always the customers with the most questions! For me, the most spirit-crushing part was the pain. I have never had a hernia, but I can only assume it felt something like that. It was like there was a dead weight in my lower right abdomen, like a rusting metal ball just sitting there and sometimes visibly protruding through my stomach. Carrying luggage up three flights of stairs while trying to ignore the agony and engage the customer in polite conversation was no easy feat. In all my appointments with GP's and consultants, I had never been prescribed anything for the pain.

I eventually saw the consultant in late February and was referred for a CT scan. By now of course, I was fairly sure in my mind that it was Crohn's disease, but as the doctors did not seemed concerned, I just carried on as normal. However, although I wasn't aware of it at the time, it was taking its toll on my Mum. I was staying with her and she couldn't understand why I was not more bothered by it and tried to convince me to got to A&E many time. When someone has to jump out of the bath to let you poop and help clean up your vomit, its impossible to hide the severity of the problem. But I just shrugged her off, thinking more about my own problems than the effect it might be having on her stress levels.

Following my CT scan, in April the consultant informed me that my bowel was indeed inflamed and the most likely cause was Crohn's disease. The only way to know for sure was to carry out a colonoscopy. In the meantime, he jotted down the number for the specialist IBD nurse and told me I should call her if my symptoms worsened. When I got back in the car, I remember thinking to myself "How much worse can it get before they offer me any prospect of relief?". I retrospect, I should not have insisted on attending all my consultant appointment alone. One piece of advice for any potential Crohn's sufferers - make sure you take someone along who cares about you and has seen you at your worst. Chances are they will be much more forceful than you. 

I thought I would feel relief when I finally knew what the problem was, but I had been so intent on finally getting a correct diagnosis that I hadn't really considered what they might mean. Even though at that stage I was still relatively ignorant of the full nature of the Crohn's Disease, I knew enough to realise there was no magic cure. Most importantly, the thing I had been working and saving so hard for - my dream of continuing my backpacking adventure - was looking less and less realistic in the near future.

13. Crohn's: Endurance

Period: January 2012

In the new year I waited for the ultrasound follow-up with the consultant. And waited. In February, when there was still no word from the hospital my dear Mum called them, to be told that I had slipped thought the system (A.K.A forgotten about).

At this point, worrying about my health had taken over my daily thoughts. It's difficult to explain to someone who has never suffered a long-term illness, but as an example, when a healthy person is engaged in a conversation, chances are they will be focusing 100% of their attention on the person and what they are saying, or thinking about something random like what to have for dinner. When you have Crohn's, you are trying to maintain a normal conversation while really you are thinking about how much pain you are in.

This sort of thing was particularly important as I worked on the front desk of a luxury hotel. I used to try and get the afternoon/evening shifts as much as possible, as starting work at 7am meant spending a large portion of the morning in the toilet. Thankfully, there was a toilet above reception that I could use, providing no functions were taking place. Unfortunately, it was also right next to a guest room, so one of the first things I would do upon arriving was check the computer to see if it was occupied. When someone is paying £200 for a night's accommodation the last thing they want is to be woken by the receptionist exploding out of her rear end!

One particularly funny memory involves the poor cleaner knocking on the toilet door at about 8am to tell me there was someone at reception waiting to check out. Before 9am there was only one member of staff to man the front desk. There was absolutely nothing I could do but sit there and wait for the poop to stop leaking from my burning A-hole! By the time I returned thankfully the customer had left, at least it avoided the need to provide an explanation when I finally returned.