The most astounding thing about this illness is the fact that it doesn’t just take hold of your bowel, it takes hold of your body. In fact, IBD takes hold of every fibre of your being, chews it up and spits it back out in a mangled mess. Or at least that is what it feels like.

In the first few months post diagnosis and with strong medication in my veins, the immediate issue was no longer my diseased intestine but my back. I simply could not move. As I have written before, the pain in my bowel was making itself known in the form of a burning sensation that ripped through the right hand side of my lower back. During my time in hospital this area had swollen and any form of movement was becoming an increasing struggle. After my discharge, I was told the swelling was likely to be water retention from the IV steroids and to try ‘walking it off’.

At my ward follow up, with no improvement, my consultant decided it might be worth while referring me to a rheumatologist who specialised in arthritic conditions associated with IBD. I was due in Valencia for Las Fallas, a firework festival, just 4 weeks after my hospital discharge and was in desperate need of help. With my referral looking at least 6 months away, I was forced to seek out help in the world of private health care.

Attending the appointment at the Nuffield with a private rheumatologist was both a life saver and an utterly fascinating experience.  The Dr spent a good 90 minutes with me assessing me physically and looking at all my MRI scans and X-Rays that were taken whilst I was in hospital. Beyond my back what we discovered is that my heart, instead of sitting on the left hand side of my chest like normal people, sits centrally behind my breastbone. I was told this shouldn’t ever cause me too much issue from a health perspective but at least I know my heart is safe from a sniper attack and should anyone ever tell me that my heart isn’t in the right place? Well, they’d be right.

The other thing that became evident was the fact that the base of my spine seemed to be suffering a pretty serious looking kink. The rheumatologist explained that it was likely my muscles on the right hand side of the lower back had gone into spasm and wrapped themselves into a tight ball strong enough to kick my spine out of line. It was no wonder I couldn’t stand up straight. I was put on a high dose of diazepam and codeine to help loosen the muscle and ease the pain.

Safe to say, with a pharmaceutical suitcase and a pair of hiking poles in hand, I made it to Valencia.

After 3 months off and a period of private physiotherapy I made it back to work on a phased return in May and have successfully managed to remain at full working hours since June.

The other positive news is that, following further MRI scans on the NHS I was told in August that the pain in my back is most likely associated muscle pain rather than any form of arthritis. That was some of the best news I have had all year. I am still suffering from stiffness and the odd twinge but at least I can now walk about like other people my own age, even if I do tire easily.

That’s the thing. The other symptom I cannot seem to shift is fatigue. But by fatigue I don’t mean I am a little tired. It’s a common misconception that when a person says they are tired they perhaps haven’t been sleeping well or they were out late the night before. But these days I sleep like a log most nights and going out and still functioning past midnight still seems a distant memory. People suggest it’s just a symptom of getting older but I refuse to believe I would have grown this old this fast without the help of Bernie. When I get tired in the day it isn’t just my eyes feeling heavy. My whole body feels as though I have weights of lead hanging from each limb and my whole physicality changes as I start to drag myself through each day.

This fatigue is clearly, in part, associated with the fact that my body is in a constant battle with itself. I understand that my body needs rest to win, to keep healthy, to keep from falling off the precipice that is this disease. BUT, I am 25 years old and having to be wary of my body’s limitations and continuously staying in of an evening rather than overloading myself socially can be a real drain in itself. I used to constantly be rehearsing for the next show or catching up with friends but I just don’t have the stamina. Having said this, I have overstepped the mark a couple of times. Just this last Monday I went to see the new Bond film, Spectre after a rather heavy weekend of gatherings and bonfires in the run up to the 5th November. Pushing myself to see a film on top was the last straw and I promptly fell asleep in the cinema and missed the majority of the film. Clearly, Bernie isn’t a Bond fan…

Lastly, my brain function seems somewhat limited in comparison to what it was before diagnosis. I used to pride myself on my ability to communicate, particularly at work where eloquence was the name of the game when it came to speaking to visitors within a National Trust property. Since using the steroids, though it could be the condition, my memory seems, frankly, shot to shit. I can’t remember things that have happened, what conversations I have held with people and my ability to drag a word from the depths of my vocabulary is no longer existent. This may seem rather trivial in the grand scheme of things but I was proud of my mind, if that makes any sense, and I can only hope that over time the smog that seems to cloud my head will lift.

In fact, I hope that over time all these additional symptoms will slip away and that Bernie and I will learn to live a more harmonious existence. It’s all a question of balance.

I was discharged on a Wednesday. It was a strange feeling. When I entered A&E on February 9 I had no idea I would be staying one night in a hospital let alone 10. Hospitals have always freaked me out. For as long as I can remember they have given me this strange wave of anxiety and unease the moment I have walked through the automatic doors from the world of the healthy into the world of the sick. However, my view, having spent a fair while in one, has certainly changed. A good thing really considering a hospital will be a reasonably constant part of my life for the foreseeable future. I have a lot to be thankful for. Without that institution and without a diagnosis this blog could have been a very different beast.

In one hand I was elated at the thought of going home. I had spent hours of my life alone in a room that was stuffy and outrageously hot. Some serious building work was being undertaken at the hospital and the windows of my room had been sealed shut. For the middle of February it felt more like I was lying in the Mediterranean in July but without the bonus of gaining a tan and with a serious lack of decent scenery. I was also longing for home comforts and decent food. I had only started to eat again a few days before my discharge and the hospital offering was not helping me to regain my appetite.

I was, however, also petrified at the concept of leaving. The nurses were all so kind and gentle and I had grown comfortable in my routine of medication administration. Those nurses were there at a touch of a button and never once turned their back. One nurse, I can’t remember her name now, sat with me for some time one evening when I was in such pain I thought I must have been dying. She made me pant and breathe as if I were suffering contractions until the fire in my belly calmed. She then stayed with me until I had taken the relevant pain killers and anti-spasmodics to keep it at bay and they had started to kick in. I cannot tell you how thankful I was to have that kind of support. The thought of not having a medical professional at my bedside when I returned home was terrifying.

Although I was still very fragile the return to my familiar surroundings certainly helped. I had one week before I would return to Digestive Diseases for a ward follow up which would allow me to meet my assigned consultant and learn more about the disease. By the time I reached that appointment I had already devoured most of the information available to me.

What I had discovered was that Ulcerative Colitis is believed to be an auto-immune disease. Ultimately what this means is that my large intestine has become the battlefield in which the bacteria in my gut are embroiled in some kind of civil war. The problem is, 2 thirds of a person’s immune system resides in this battlefield of good bacteria killing other good bacteria. What results is an inflammation in the lining of the gut wall which leads to painful ulceration and indescribable pain.

Your large intestine is responsible for absorbing the last of the nutrient from whatever mass is left from the small intestine and is also responsible for absorbing any excess liquid before disposing of the waste as faeces. When your gut is inflamed you are no longer able to absorb these nutrients or liquids in the same way which quickly results in a state of malnutrition and dehydration.  Symptomatically you are left with incredible pain, diarrhea, bleeding and the production of excess mucus from your rear end. Attractive combo eh?

Armed with this information the consultant, at my ward follow up, explained to me what my immediate future looked like. I was to remain on oral steroids known as Prednisolone for a further 7 weeks to tackle the internal inflammation and would continue taking a drug called Mesalazine, which I began in hospital. The idea was that this would become my maintenance drug that would help to subdue the intestinal inflammation and hopefully retain remission which is only achieved once the symptoms of the disease are held in check.

This all seemed very positive and suggested a reasonably quick return to some sort of healthy normality. The reality, however, has taken me down a rather bumpy road.

I will never forget the moment I was given my diagnosis. I was lying in a bed recovering post Flexi Sig. merely expecting to be collected by the porter who had dropped me off at Digestive Diseases some time before. I certainly didn’t expect a consultant to be at my bedside offering information that would change my life. She was quite a young woman, with blonde hair. I can no longer see her face just a blurred mass beside me. What I do remember clearly is the file she had in her hand with photographs pinned to it. These photos showed some internal orifice which looked extremely red and bumpy. Turns out these were images of my colon. The red showed just how sore my insides had become and the bumpy bits were literally ulcers. No wonder I was in such agony.

Having explained that I had Ulcerative Colitis but not offering any detail on what this meant, the consultant then scared the living daylights out of me when she uttered the words ‘the surgeon will be along in a moment to talk to you’. I was literally petrified. The ‘moment’ it took for the surgeon to reach my bedside felt like eternity while I began to concern myself with what might happen next. The dark haired man that appeared, however, offered nothing but positive news. He told me that surgery is not off the cards with such a condition but that it was now a last resort with up and coming medications proving successful with many patients and that the team would do all they could to prevent surgery in the future.

With that, I was left to ponder over this diagnosis for a further two hours while I awaited the porter. My mother was waiting for me in my room and never have I wanted to get back to her to talk over what had happened so much in my life. However, during this long and painful wait I had a conversation with a lady in a bed opposite which I will never forget and which had a real positive impact on how I dealt with the diagnosis. She was recovering from her colonoscopy and told me she had suffered with UC from the age of 13. My guess would be that she is now in her mid forties. Realising that I was a newcomer to the IBD club she offered real encouragement through her own experiences.

What this lovely woman told me most importantly was that it was a condition that can be managed. She explained that she was now able to catch a flare in its early stages and that she could phone her GP, explain the situation, tell them what drugs she would take and for how long. In other words, she was now in control. She also stated that the worst thing I will encounter as a sufferer on a reasonably frequent basis was the colonoscopies that would now be a part of my life and would occur at least once every three years. The last piece of advice which has stuck in my head ever since was to try drinking Actimel on a daily basis as it contained bacteria that was beneficial to the gut. Interestingly, I have had Actimel in the fridge ever since my discharge from the hospital. Do I think it helps? I think it’s more the placebo effect but what I have discovered since is that we are all after a miracle cure and will all swear by something that we believe helps to either retain remission or curb the symptoms.

The journey back to my room was long and uncomfortable. I was made to be transported in a wheelchair which I felt was a little over the top but in hindsight was entirely necessary. My body was now seriously weak as I hadn’t eaten anything for days. This too was also probably a good thing as my body also couldn’t handle the bumpy surfaces the wheelchair was navigating and I found myself retching all over the place when I returned to my bed.

I remained entirely unaware as to what this whole new world would mean for me throughout the rest of my hospital visit. From the point of diagnosis 5 days post admission I was then required to stay a further 5 days while I had a course of IV steroids administered and during this time was merely left with a few leaflets about the condition and information about Crohns and Colitis UK. This is an amazing charity that has now become an important part of my life. They not only raise money for research but also offer the most comprehensive information not only on the conditions themselves but also help and advice on living with the disease.

In hindsight I can understand why the hospital didn’t bombard me with information at that moment in time. I already had enough to contend with what with a new diagnosis, a lot of pain, fatigue, antibiotics, steroids and new drugs I was told I would now have to take every day. Just getting through each day at this stage was enough. I was to learn more once I was discharged, assigned a consultant and offered an outpatients appointment.

Well here I am, flexing my writing fingers for the first time since finishing my MA back in the summer of 2013. Why? Well I like writing, I miss it. I miss the idea that you can use words as a means with which to remember, to note down important moments or feelings whether that be in a cathartic sense or purely because you don’t wish to forget. The power of words as a means of recording, of noting patterns, of remembering good times and bad and, ultimately, charting one’s progress in the ebbs and flows of life lures me to write once more. But, I don’t wish to be clever or thought provoking, this is not an exercise to empower some great discovery or a means in which to attempt to inspire some great purpose in others. My plan for this blog is simple. My wish is merely to record a journey, the  journey of Bernie and me.

‘Hang on, who’s Bernie?’

Bernie, in short, is the name I have given to my bowel or large intestine. Before February of this year my bowel was like any other. He cracked on with the shit in my life quietly and without too much fuss but I took him and his work for granted. I suppose to an extent I abused him. We all do. We absolutely refuse to acknowledge the fact that this organ deals with the crap, the waste, the shit. That is, until you’re forced to acknowledge otherwise.

You see, in February I was diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease. This diagnosis has altered my life and my perceptions and, while 6 months has passed, I find myself in no better position to understand what this disease means for my future or what journeys I will have to embark on in order to regain some of the health and vitality on which I once thrived and which currently seems a distant memory.

That all sounds a bit morbid. To an extent it is, it’s shit. It’s shit and it’s terrifying but that isn’t the whole story. People learn to cope with this disease one way or another and live their lives to the full extent that their bodies will allow paving their own paths in this world of medication, therapy and potential surgery. They are remarkable and inspirational folk.

That is where this blog comes in. I do not wish to be bound or defined by my illness. I intend whole heartedly to fight towards remission and some level of health that I can both understand and can enjoy. Beyond this, I want to rediscover my identity, who I am outside of my condition. To learn once more what makes me tick, what my body can endure and what makes this life fun and exciting. I am about to embark on my own journey of discovery, to build my own path in the hive of uncertainty that awaits. But I do so in the full knowledge that Bernie will be here beside me every step of the way.