31. I love Inflximab

Period: 2015

For anyone reading this feeling close to despair having tried everything to relieve their Crohn's symptoms, hope is out there! Nearly three years have passed since I started Infliximab and my life has returned to a level of normal I would not have believed possible in those dark moments when I began to doubt that I would ever be free of those debilitating symptoms. It is not a miracle, I know from experience that I must also do my part and take care of my body as much as possible, but it has afforded me over two years of remission and allowed me to get my life back. After seeing every other treatment fail, I will confess I had reached a point where I began to doubt anything would stop the symptoms long enough to provide any meaningful form of relief.

In October 2015, having been healthy and able to work full time for a while I decided to take a trip to Australia. Having been forced to abandon my dream of spending a year backpacking the entire country I decided on a whistle stop 1-month trip to celebrate the fact that I had my life back and, most importantly, to get it out of my system. Sadly, I had such an amazing time jumping out of a plane, snorkeling the great barrier reef and wandering through both desert and rainforest, that I remembered why I loved travelling so much in the first place. And why I'd been so depressed upon discovering that I would have to visit the hospital every 6-8 weeks for Infliximab instead of going backpacking again. When I returned from my month in Australia, I decided that I would go back and do the full year like I had originally planned.

 

A further colonoscopy last year (thankfully done under general anaesthetic, at least there was no anaphylactic shock this time!) failed to access my small intestine, just as it had on all previous occasions. Therefore a couple of months ago I underwent an MRE. The purpose of these tests is to ensure the bowel is inflammatory free and therefore clear the way to cease treatment of Infliximab. The NICE guidelines (UK only) state that "infliximab should be given as a planned course of treatment until treatment failure (including the need for surgery) or for 12 months, whichever is shorter." As I've been receiving biological therapy for almost three years now, the time has come to see if I can maintain remission without it.

I have only spoken with a couple of other people who had stopped receiving Infliximab, and both had been forced to start it again with 12-months, so I knew there was a risk my symptoms would return. With that in mind I decided to embark on the dream I had been forced to leave behind earlier in the blog of further travelling.  As Infliximab has required me to visit the hospital every six to eight weeks for the last three years I had been forced to put that particular ambition to the back of my mind. I realised I had to take this opportunity now, whilst I had my health. The flight is booked for April 11th, eight weeks time.

This week, I received a call informing me that my MRI scan showed active Crohn's Disease. This shouldn't have come as a surprise to me, as I have always had occasional mild symptoms even while receiving Infliximab, but to hear those words from the nurse was a massive blow. The past 12-months had been fantastic, I was healthy, happy, had a good job and good friends and I was planning on an amazing trip to Australia, with no idea when I'd be coming home. In one sentence from the Nurse my mind went back to those dark days when my life was ruled by the symptoms of Crohn's. My dream adventure suddenly seemed less certain.

As useful as Infliximab is, one of the downsides as with many drugs is that the body gets used to it, and over time it becomes less effective. Even if I were not planning on moving to the other side of the world for a while continuing Infliximb treatment no longer seems like the miracle solution it once did. Thankfully there is an alternative called Humira (adalimumab), which patients inject themselves with. My nurse tells me she has another patient who went backpacking to Australia and uses Humira. I will find out more about the drug when I visit the hospital in the coming week or two, but I do know that most patients receive three months worth of supplies at a time and typically inject themselves every 2-weeks. Easy enough, I can handle that. Further investigation has revealed that it must be kept stored at 2-8 degrees Celsius (26-46F). Since I plan to live and tour in a van for the first few months of my trip, this is not an ideal solution.  

A week ago my thoughts were occupied by what to pack, the places I want to visit and the adventures I hope to have. Now I am contemplating the prospect of boarding planes with a bag full of needles and devising methods to keep the medication at its required temperature on the road, largely in the desert of all places. 

 

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.

.

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!

29. Time For Me

Period: June 2014

With my consultants appointment just two months away - and with it the prospect of stopping Infliximab - I had that annoying limbo feeling again with the uncertainty I perceived over the coming 12-months. On the one hand I wanted to cease the infusions because I needed to know one way or another if I could stay well without it, but on the other hand I was terrified at the prospect of my Crohn's symptoms worsening.

Furthermore, no matter how hard I tried I just seemed to be lurching from one nightmare after another - every time I felt like my mood was improving, something would come along and I would let it drag me down again. My mind was all over the place, I had seen a councillor three times since March and I really needed more frequent appointments to truly get anything out of it. Unfortunately, with all the regular blood tests, infusions and various other medical appointments, I just felt too guilty and embarrassed to take any more time off from work.

Therefore, with my last day at work fast approaching I decided it was finally time to put my own needs first. Since returning from New Zealand I had been more concerned with what my employers, colleagues and family expected of me to do the things I wanted to do. I started by booking a 4-night stay in a luxury log cabin - I left work on the Friday and I was due at the cabin on the Monday. On the Saturday, I received a letter from my bank and after calling them I discovered that my debit card had been cloned - someone had tried to withdraw money in New York, but thankfully the bank had blocked the transaction. Unfortunately it meant that my debit card had to be cancelled immediately! As I have never bothered with a credit card I was a bit uneasy about going away alone without plastic and carrying wads of cash, but I decided I couldn't let it stop me.


I had booked a similar holiday back in the Autumn and my little old Corsa had completely died just an hour in to the journey. When it had to be scrapped I was so depressed that I just came straight home. On my previous holiday, to Amsterdam in January 2012, I had developed terrible flu on the second day. The trip before that, New Zealand, was cut short by Crohn's. On this occasion I resolved I would not let anything get in the way of having a lush time!



Knowing how negative and judgemental my Mum and brother can be, I decided not to tell them about the trip until I got up on Monday morning and packed my suitcase. I was very excited as it was the first time I had been away in a long time and I didn't want their inevitable negativity and criticisms to ruin my excitement. Apart from a brief fart or poop moment on the drive there, I felt great the whole time. I arranged for a beauty therapist to come to the cabin and I had a fabulous full-body massage and my first ever facial. It felt great to treat myself when I had been living so frugally for the past few years. Having generally lived hand-to-mouth, normally when I spend money on non-essential things I feel incredibly guilty, but on this occasion all I felt was satisfaction and I resolved to do more of it! The rest of my stay passed in a tranquil blur of sunshine, walking, nature and quality food. The trip was not some momentous turning point, but it felt like a much needed escape that I could use as a springboard to overcoming the depression, which I was finally ready to acknowledge.

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!