Guest Writer - Joey

It's been almost 6 years since I was diagnosed with Crohn's Disease. I vividly remember the first time I started to feel a dull ache every now and again from a part of my body you never want to feel pain - you guessed it, the anal region. I wasn't too concerned at first as I thought it may just be part of growing up, but I guess I was naive. 

At the age of 16, everyone thinks that they are invincible when they are that young. It was probably weeks maybe even months before I actually plucked up the courage to tell my parents about it, as you would have guessed I was very embarrassed, I hadn't even said anything to my closest friends but the pain was becoming quite unbearable and it just wasn't going away. I knew I had to do something.

The doctors were originally very vague in telling me what was actually wrong with me and couldn't actually give me a definite answer on any of the questions I had, which I would later find out was one of the major factors in why it would get so severe. Had they been able to diagnose it sooner I don't believe my condition would have got as bad as it did.


After making numerous visits to my GP they came to the conclusion that it was an ingrowing hair which had caused an infection. Boy, could they be any more wrong? As you can imagine stress levels were high. At this period in my life I was in the middle of my GCSE's and I would later find out that one of the main triggers of Crohn's is stress. Things were getting worse and I still did not know why. Coming away from the doctors surgery very unhappy and dissatisfied with their diagnosis me and my parents discussed that the only other option would be to make an appointment at the Gastroenterology department in Hereford Hospital as the pain was starting to get rapidly a lot more difficult to deal with. 

It was soon after this that eating was starting to become a real issue for me as I just stopped. I couldn't even explain why I just felt full all the time and couldn't even stomach my mums Sunday dinners which showed just how serious the problem was who can refuse their own mums Sunday dinners! It was at this point that my closest friends at school were starting to see a real change in my character as well as my physical appearance, as most people know I've always been quite a stocky lad and my weight was dropping at an alarming rate down to nearly under 9 stone. This was increasingly frustrating for me as I wanted to let my friends and classmates know what was happening but I didn't even know myself. But I was about to find out.

Of course I was extremely nervous on the morning of my hospital appointment what young lad wouldn't be? But I was in such pain that I just wanted a resolution to the problem. The consultant examined me and deemed everything okay for a small routine operation to remove some infected skin which I was told would be the end of my problem. It was only then that I happened to mention that the pain was coming from a different area also (a smaller lump that had appeared) . On re examination the consultant then looked at both me and my mum and told us he had made a mistake. We looked at each other directly in the eyes thinking exactly the same thing, Cancer. To my relief he immediately quashed this fear but he did diagnose a serious chronic condition that we knew nothing about. This was the first time I had ever heard of Crohn's Disease.


The operation still went ahead but they decided to use a camera to try and investigate the extent of the inflammation. I would later find out that this was inconclusive and they didn't actually find out anything they didn't already know. Things accelerated so rapidly after this as what I didn't know was an abscess was forming. At this point I was only really attending school to sit my actual GCSE's and I would like to thank Fairfield High School for the understanding they showed allowing me to take comfy cushions into my exams as well as jelly babies and other sweets to keep my energy levels high as the extreme fatigue caused by the condition was something I had never experienced before. 

In the days after the exams things really started to take a turn for the worse as the abscess was about to burst. The pain at this point was so severe that I remember saying to my mum I wanted to punch a brick wall so hard that at least it would change the focus of pain even for a couple of seconds. I was so angry with it I couldn't think or do anything else. I was admitted to hospital immediately and put straight onto morphine to try and control the pain and after a few days an operation was finally carried out. It wasn't until I had awaken from the surgery that I knew the extent of what was needed to relieve my symptoms. 

The operation left me with an open wound that would require packing and dressing every

day for many weeks. The nurses at this point tried to show my mum how to dress this for me but after taking one look at the damage that they had left she fainted right there in the hospital ward and needed oxygen herself!.It's safe to say she wasn't fit to do this and the job was left to district nurses and this was one of the worst experiences of my life. Imagine at the age of 16 having to have nurses intrusively everyday looking at the most private areas of body, especially when they were young and good looking!


Due to the inflammation in my bowel, an abnormal passageway had been caused. This was otherwise known as an anal fistula. This is essentially a small channel that develops between the end of the bowel, known as the anal canal or back passage and the skin near the anus, where obviously waste leaves the body. My problem was that the fistula was branching out into more than one channel. There was only one way to stop this and this was to insert a number of small drains into the passageways to help divert the waste and stop the build up. This would prevent another possible abscess. 

These drains were to stay with me for around 9 months and I have never told anyone this but I had to use pads walking around to collect any lets say..unexpected gifts. Having placed me on steroids the combination of them and the drains, finally got the condition under some control. This was never a permanent situation and whenever they tried to reduce the dosage of steroids, I would see myself falling ill again. This would happen over and over for a good 12-18 months. There was no real way to get the Crohn's under control. At my worst I was taking almost 100 different tablets a week. 


The most frustrating thing for me and my family was just nothing worked. Any time there was a bit of hope the Crohn's would flare up again. I tried to live as normal a life as possible. At this point, I was enrolled in Hereford Sixth Form College and was trying to get on with my education, but obviously I was incredibly embarrassed by my condition and only a select few of my closest friends knew what I was dealing with right through Sixth Form. They know who they are, and I thank them. Eventually after 3 years of unsuccessful treatment, I was trialled on a brand new, very expensive drug called Infliximab. 

Since August 2010, I have been regularly attending the hospital every 8 weeks. I have this drug administered through an intravenous drip. This combined with a daily drug called Azathioprine and regular blood tests has allowed me to steadily gain weight again, eat what I like and generally stay fairly healthy. I still suffer from the fatigue and some other minor issues but at least for the moment my quality of life has much improved. I have been told that the Infliximab is incredibly strong and nobody knows the real long-time side effects, so it is not an option to stay on this permanently. 


I really don't know what the future holds for my disease, and I hope that when I am no longer able to take this drug that there is something new for me take instead as I do not want to go back to the way I was almost 6 years ago. Although this could happen, I just try not to think about it. Despite the severity of this condition, and I admit at times it has got me really down and  quite depressed. I try to be as positive about it as possible. 

It hasn't stopped me in life as I am in the last few months of a business and management degree at Cardiff Metropolitan University, something I could never see myself doing a few years ago. It goes without saying I appreciate the support and understanding of my parents and friends about my condition but I would like to say a huge thank you to my sister Katie as she has written a few pieces as well as a radio appeal on Crohn's Disease and is extremely understanding and supportive of my condition.  


Crohn's disease is a very debilitating and embarrassing disease to live with. I have never spoken about what I have gone through before as to be honest, I never really knew the true meaning and just tried to ignore it. As there is currently no cure for the disease, I am purely writing this to help raise awareness in the hope that there can one day be a cure to stop people going through what I have and what the thousands of other people in the UK are going through- many who have had it a lot worse than me. 


Thanks for reading,
Joey

You can follow Joey's story at his blog: My Crohn's Disease

Guest Writer - Rosina

You Were More Likely To Win The Lottery

The title should give you relief in that what happened to me, it is very unlikely to happen this way. ...And if it does, you will survive! 

March 2012: 1 KFC later (this was before I knew anything was wrong, don't tell me off!) I had incredible pains in my stomach/gut and had no idea what on earth had happened. I had had bloating, IBS and general nausea regularly for the last 2 years but I just thought that was just going to be my life and all was fine. 

Over the next few months the pain would come and go, sometimes I couldn't drink anything, even water let alone eat much without it feeling awful. The worst was the middle of the night, I would wake up and be in incredible pain, screaming out for my parents to keep me company and make it go away, obviously they couldn't, but I was scared and I needed the company. I was batted back and forth between home, the doctor and the dietician and no diagnosis was made. So I decided to go for a private consultation. 

July 2012: The private consultation was not what I was expecting, I thought nothing much was wrong with me, but this was when the dreaded C word reared it head for the first time, 'Worst case scenario, you could have Crohn's. "Worst case," I thought, "So I won't have that will I?!"

August 2012: A few weeks later and I was admitted to hospital with more pain and severe dehydration, left in acute assessment for a week, I eventually found myself in woman's health (not the magazine unfortunately). The nurses knew nothing of digestive issues and the doctors were an endangered species, but I had privately booked an MRI so there was hope! Segregated to my own room, as I was an infection risk, I felt a bit better and thought maybe I was OK. 

Then the MRI came around and the dreaded 2 jugs of dye. There were tears, there were tantrums, the time it should have taken to drink said dye doubled then tripled, after lots of blackcurrant cordial and 1 jug of dye, they decided to give it a punt and somehow I managed not to throw up all over the shiny MRI machine. 

The results came back the following day; 5 doctors in my tiny side room and me sat intimidated on my own. 'You have Crohn's Disease'. I kept it together until they left, at which point I burst into tears at the fact I was going to be ill forever. One thought that kept coming back to me at various points since I was diagnosed was that I was never going to sit down the pub with my friends for a quiet drink and a laugh ever again (this wasn't true though!). 


The nurses shut my door and left me to it, I rang my boyfriend and he tried to console me but it wasn't going to work. A few days later I was feeling brighter, they were putting me on medication that should stop the pain and heal the inflammation. The fact these tablets were steroids didn't actually seem to bother me strangely enough, I was happy that there was some sort of solution. 

A month or so went by and I was put in to have a colonoscopy, I wasn't happy about it, but I was being brave (for me) and looking forward to eating after the dreaded prep and 24 hour starvation. Unfortunately, it didn't go as planned and we were unable to go through the whole procedure because of the pain. I left and thought nothing of it, proceeded to eat my weight in food the following day and not worry when I didn't go to the toilet for a few days because I'd just emptied my whole system right? Wrong! So so wrong. 

September 2012: 3 days later I woke up with usual Crohn's pain, I thought nothing of it, swiftly went to the toilet expecting the norm, however, I ended up in absolute agony. I am a bit of a worrier, so thankfully I had taken my phone to the toilet with me and as I began to feel faint and collapse on the floor in agony, I rang my parents to come and save me. We weren't sure what to do, whether I should just go back to bed? I mean it had been pretty damn painful before right? Maybe this was just a bad day? 

I didn't feel right, I'm not really sure why, but I knew something was wrong so we rang the consultant and she told us to call an ambulance. The first response woman had arrived and was lovely, gave me some gas and air but it wasn't really touching the pain. I was screaming, it was loud, I was in PAIN. Once the ambulance arrived, they were less than impressed with me, I was too loud and I should have taken my painkillers (I was prescribed codeine, if anyone has experienced the effects of codeine, then they know they aren't the best idea). 

Apparently I needed to take less gas and air and I should have known that (never been in an ambulance before or had gas and air) then once we had arrived, I was apparently being disrespectful by being noisy because there were people who were actually ill and I apparently was not one of those people? Anyway, after several hours of screaming and pain and dehydration in A&E they got a cannula in my hand after several attempts and took me up to the correct department (Yay!) I was also finally given some morphine as my blood pressure had come up a bit, one of the nurses was shocked I was still awake and in pain after I'd had enough morphine to knock out even the most tolerant of patients. 

Then I met my amazing surgeon who told me I had a perforation and needed surgery. I was having none of it: "Why do I need surgery? I don't need surgery! It's me, why would I need surgery?!" Well I eventually realised, in my drugged up stupor, I definitely did need surgery and after several attempts at concentration I managed to read and sign the consent form. I was going to theatre and I was going to have to deal with it. 

My operation lasted 6 hours and I woke up in intensive care or some such department where you get your own TV and your own personal nurse 24 hours a day (pretty nice if i wasn't actually too ill to appreciate it) I had my morphine and my TV and my nurse, I was emotional but happy to be OK-ish. 

I had, however, woken up with a stoma, something I was warned of, but again it was the worst case scenario so I didn't think that would happen again? It totally did. At first with all my drugs and my aliveness I wasn't too bothered, then I got moved up to the ward and realised I wouldn't have my special nurses helping me all the time and I would have to do everything myself and I would have to go home and live my life with my stoma (FYI it was an ileostomy). 

At first I was devastated, full blown depression and crying everyday, wanting to go home but knowing my life would definitely not be the same. Then came the shower! If you have ever been in hospital and incapacitated for any length of time, you will know how amazing the first shower is, it is like a turning point, the beginning of normality. The shower made me so much happier and I went on an online shopping spree buying clothes that would hide my stoma etc. 

The rest of the hospital trip definitely had its ups and downs with people coming and going and me staying and staying some more. Even people with conditions worse than mine seemed to come and go too! I did finally get home, it was a long process to get back to normal. 

You get frustrated and upset that you have no energy and you get angry that this happened to you but you do get over it. The antibiotics were horrible, the constant worry about things going wrong was horrible, but at the end of the day, it saved my life. My friends didn't have a clue that I had a stoma unless I told them, neither did work colleagues or anyone else for that matter. I worried about it, but I really didn't need to. I had mishaps etc but still nobody knew. When it neared my reversal I didn't want it reversed! 

February 2013: I was scared about my operation, I'd been through social events, christmas, I had a happy relationship and I was managing to go to work. I could quite happily have kept it if I had needed to, but I did want it reversed, in my heart of hearts I knew I needed to be brave. And I was and it all went fine. I had to go to the toilet a million times a day and it was annoying but I was still not going to let it get me down and it gets better, almost normal within a month, the only way has been up since then! 

I have since gone back to my job full time, fully grasped my medical needs/appointments/injections, gone on an amazing holiday with my boyfriend, started a qualification, had a busy social life, gone jet skiing(!!), eaten a KFC again (my bad), gone out to night clubs (I have stopped drinking though, but I never thought i'd go on a night out again last year!) and gone on several weekends away with friends and lots and lots of other things that anyone in my previous situation would definitely not think was possible!

Basically my life is as good as, if not better than, it was before any of this ever happened and I am a much more confident and grown up individual than I was a year ago. This is a bit of a horror story, but as the title says 'you were more likely to win the lottery' which is a direct quote from my consultant when describing how quick and what happened to me last year. I have just started on Azathioprine, after nearly a year of no crohns related issues (since my first op) as a preventative treatment due to the aggressive nature of my disease. Hopefully the only way is up! *touch wood!* You will survive! Please think positive :)

Guest Writer Helen

I was diagnosed with Crohn's disease when I was 16 years old after developing severe stomach cramps and fatigue. I was very quickly offered surgery to remove the affected part of my bowel. I dropped out of college a year early as my absences were mounting up and my tutor could not understand my illness, as to her I was not visibly ill. The operation was a miracle. I soon slipped straight back into my teenage life with no consideration to what I had just been diagnosed with. 

For the next three years I turned a blind eye to my condition as the operation had left me symptom free. I began volunteering at a special needs school and soon developed my passion for working with people with learning disabilities. I began my training at Northumbria University as a Learning Disability Nurse in 2010 and everything began to fit into place. 

In September 2012 I began slowly losing weight. I love to go to the gym and be as active as I can, so I put my weight loss down to this. Over the next two month I started to develop other Crohn’s related symptoms however I put these off and tried to make other excuses for it. I knew there was a possibility my Crohn’s had returned however I thought that if I didn’t face it then things would somehow sort themselves out. Unfortunately this was not the case.

In March 2013 I came home from University extremely unwell hoping to get a quick answer from my doctor. By this time I had lost 2 stone, I was unable to get out of bed, my appetite was nonexistent, I wasn't sleeping due to horrendous stomach cramps and I had developed an anal fissure that left me in excruciating pain every time I went to the toilet (which was a lot.)

I went to see my GP and he referred me to an IBD consultant. Due to me being so unwell the consultant didn’t want to do any investigations until I had picked up. I was put on to steroids, vital milkshakes, a no fibre diet and a combination of vitamin boosting drugs.

For the next month I was very unwell, I seemed to get worse before I started to feel better. This left me feeling very down in the dumps. I’d left my university life that I loved! I’d moved away from my friends and my boyfriend and to top it all off I missed starting my final placement as a student nurse.  I was missing out on so much at university. It was a very difficult time for me, my weight had dropped to 7 stone, and none of my clothes fit me anymore. I felt so insecure.

My friends and boyfriend had never seen me suffer from my Crohn’s before so didn’t understand what was going on. I was getting constant texts and messages asking when I was coming back, which I was unable to give an answer to. It was difficult to explain to people I will be better when I’m better, I didn’t know when it would be or how long it would take but being bugged daily by everyone wasn’t helping. My relationships with my friends and boyfriend were going downhill and I was becoming more and more fed up of being ill. (I’m a rubbish patient.)  

After a month of steroids the consultant decided my symptoms had settled enough for him to do tests. For the next couple of weeks I underwent surgery to remove an abscess I had developed, I was poked, prodded and scanned until it was apparent my Crohn's disease had returned "all guns blazing."

Following my results I was put straight on to Azathioprine tablets daily and Infliximab infusions every couple of weeks.

The infusions seemed too good to be true, my stomach cramps were a lot better. It was still a couple of weeks before I started to feel slightly ‘normal’ again. 

On the 3^rd of May 2013 I moved back up to Newcastle. University and my Placement were very understanding. I was able to start my placement, just doing short shifts to get me back into a routine. I received financial support from University as initially I was travelling backwards and forwards between home and Newcastle to have my weekly blood tests and other treatments.
My first week back in Newcastle was terrible, I missed home so much. I cried my eyes out leaving my mum; she had been amazing, looking after me. She made sure I took my tablets, made my meals for me, took me to all my appointments and most importantly she understood! It was so hard remembering to take my tablets every day and having to explain to people why I couldn’t eat certain foods and why I had been so poorly. I just felt like no one understood.

 

Four months down the line I’m still learning about my Crohn’s, there’s so much to remember and come to terms with. I’ve learnt that if you don’t let people in and help them understand about Crohn’s disease then it’s a lonely road. Life is so much easier now my boyfriend, friends and colleagues have an insight to my illness.

My treatments have been amazing so far, I am back on a normal diet and not suffering from any symptoms. The only thing I struggle with is tiredness. I seem to be forever tired. I put this down to my determination to live a “normal” life. I do 13 hour shifts; go to the gym 4 times a week and I am as active as I can be. My friends understand that some days I just need to chill out and my boyfriend has come to terms with the fact it’s very unlikely I will watch a film without falling asleep half way through. It does worry me at times what the future may hold for my Crohn’s Disease, but I am confident that whatever comes my way I have the support of my family, boyfriend and friends to deal with it. I am determined that Crohn’s will not stop me living my life and following my dreams. 

Guest Writer Harvey - The Difficult Kids

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part THREE

I have come home from school crying again. Gary H keeps puffing his cheeks out to imitate my swollen face and he is doing it every time he sees me. Today he put me in a headlock in the playground and wouldn’t let me out of it until a dinner lady dragged him off me. He says, “I know you want me to apologise but I’m not going to.” to the dinner lady. “Why is that?” she responds. “Because I hate him,” Gary replies.

Fast forward a few months. It is leaving day at my primary school and the year has been very tough. My attendance has been low and I haven’t had any friends. My dreams of sailing through Yr.6 were short-lived and I can’t wait to get away from Gary H. He is stood behind me right now, because we are next to each other in the register. Our procession to get our leaving certificates is minutes away but I’m crying again. Since we were lined up Gary has been kicking me after every step we take, and kicks me repeatedly whilst we are standing still. I ask him to stop. He says “No”. The girl in front of me, Laura G, tells Gary to stop kicking me. He tells her not to tell him what to do, so she tells on him. I am dragged out of the line and into the girls’ toilets and cry my eyes out – I don’t understand why he is trying to make me feel so bad and this is supposed to be my special day. The procession goes on without my name being called, and I am reminded afterwards that people missed me. But it doesn’t really do much to make me feel better.

Fast forward a few months. It is my first day of secondary school. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and that’s good. I meet my new peers and teachers without having to mention my assorted maladies and for the first time since diagnosis I feel normal. Things are looking up.

Fast forward to next year. I am walking around school and everybody knows who I am. I am the boy with a “pipe in his face” – a nasogastric tube that is used to feed me a liquid diet. I’ve been off of school for 12 weeks now, and I wish I wasn’t back here, where stares come from every angle, but even this is preferable to spending another day in bed watching Scooby Doo. As I get pushed into a locker I reconsider.

Fast forward to 6^th form. GCSEs and AS levels have come and gone, and some of the guys still call me “tubey”. I look forward to leaving this place, to university. I am excited because nobody will know who I am and how I sometimes have “interesting bowel movements”, and nobody knows that I had a pipe in my face. Nobody will know that I was bullied by my friends, even by boys significantly younger than me. I’m nervous, but it’s that excited nervousness. I’ll be an equal.

Coming up in Part 4 - Uni and Conclusion...

Guest Writer Harvey - Telling School

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part TWO

Two days later. I am ready to go home from a two-week hospital stay where I learned I had Crohn's Disease, aged 10! I vow never to watch Scooby Doo as long as I live. I say thank you to the nurses who shoved thermometers in my mouth and pricked me with needles, give a hug to the special nurse called Sian who is very pretty and very friendly (I never see her again) and wobble my way back to the car. Two weeks in a hospital has taken its toll and I look forward to sleeping in my own bed, but things don’t go to plan. I stay feverish, with flannels all over my head to cool me down. I sleep fitfully and wake up shaking. I reluctantly agree to spend three more nights in the hospital.

Fast forward a month. I am on huge doses of medication and my face is swollen up from the steroids. I am at home and enjoying the last week of the summer the way any 10yr-old should – running back and forth from living room to toilet, sleeping with 3 fans in his room and not spending any time with friends(!). My only visitor is a teacher from school.

Mr Wallace, who is going to be my teacher for yr.6 comes along and asks me if I want to share the details of my diagnosis with the rest of the class when school starts in September. Kids can be cruel and I don’t want to regret anything, so I tell him I’ll see how I feel. I joke with Mr Wallace about how I could maybe say to the class that “every Friday evening, I turn into a big green monster” and he genuinely laughs, telling me that that is the exact kind of things that will make the children understand that I’m not to be feared, that I’m still the same Harvey. He leaves and I know that, with him as my teacher, I will be safe from the bullies.

 

Fast forward to the first day of school, and the moment of truth arrives. My friends have all asked about my fat face but I have declined to answer their queries. Whilst Sarah H talks about how she spent her summer dancing, I do some maths and work out that my 6 week summer holiday was split into 3 perfect parts – my holiday to Portugal, which was a write-off, my two weeks in hospital, which were a write-off, and my final two weeks of my holiday, also a write-off. As I look around the room, taking in the posters and noticeboards, the drawers to put our work in, and the bookcase full of new dictionaries, I realise that I am so, so relieved to be back around the children with whom I have grown up. Mr Wallace asks: “So, does anybody else want to share what they did with the summer holidays?”

I’m a confident child and, if I may say so, a pretty popular figure in the class, so I have no problems with public speaking. However, as I find my hand raising itself, almost automatically, I consider my ability to sail the impending storm if I do indeed choose to share my summertime misadventure. Mr Wallace doesn’t bat an eye-lid when he sees my hand in the air, a tiny fist with one finger pointing towards the sky, amongst 35 sets of hands that remain firmly in laps or fiddling with hair. “Harvey? How did you spend your summer?”

Many things happen at once. My hand falls into my lap. I question what I want to actually say. I actually put my hand up to say I went to Portugal, and to hide my new identity until the time was right. I see the faces of all the children who were bored stiff by Sarah’s ballroom dancing competition in the summer break. I look at Mr Wallace, willing me to do only that which leaves me feeling safe, understood and happy. In a moment of madness and sensing the silence in the room I say “I spent two weeks in hospital”.

Hair-fiddling stops and all eyes stare at me. Finally, an interesting story! Mr Wallace looks at me thoughtfully and, I will never forget this, he raises his eye-brows a bit and gives me a subtle, questioning nod. I reply in kind. He smiles. “Would you like to tell us why you were in hospital, Harvey, or would you like me to explain for you?”

I get stage fright and ask Mr Wallace to do it for me. I keep my head down, ashamed to be the centre of attention in such extraordinary fashion, so I don’t know what the other children are doing. But I listen. I listen hard, and Mr Wallace does a stellar job, explaining to everyone how I became very ill over summer but am now okay. He emphasises that I am not contagious or to be treated any differently to how I was before the summer. He asks if there are any questions. Simon V puts his hand up, sheepish but still noticeable. I dread his question. Mr Wallace suddenly becomes one of the greatest men I shall ever know by simply ignoring Simon’s hand and moving on. I breathe a sigh of relief and get on with the rest of my day. Nobody avoids me, but nobody asks me any questions; a perfect first day back.

Coming up in Part 3 - dealing with the difficult kids...

Guest Writer - Jon

Honesty in IBD

My name is Jonathan Clarke and I have Ulcerative Colitis. Those are probably two of the most important things to know about who I am. Another important thing about me is that I have recently published a book about my experience with UC; but I'll come back to that. I've had to come an awfully long way to get the stage of writing about this illness.

Yup, that's me!

I was first diagnosed in 2010 while I was on my Gap Year. I had no inkling of the ramifications Colitis would have on my life at the time, and I had no clue about just how unwell this disease can make you. All I cared about really was that I was having regular, bloody diarrhoea, and I wanted it to stop.

If you had told me at the time that three years later I would be writing a blog about the disease, and wanting as many people as possible to read about it as possible, then I'd have thought you were on too many meds! I was embarrassed to the extent of mortified at the prospect of going to Uni and having to cope in secret with such an intrusive disease. I'd had a bad enough time breaching the subject with my parents.

Fast forward six months or so and I had already dropped out of Uni and was housebound. I had been forced to leave my new friends and girlfriend at the other end of the country and, the way I was then, it seemed like there was no end in sight. I was lonely, I was depressed, and I made it all worse by accepting these (all too common) traits of IBD. I would talk to my girlfriend on the phone about my trials and tribulations at home and it was she who finally suggested I write down all the things I was venting onto her. That night I opened my laptop and just started typing and I didn't stop for several hours and many thousands of words. I had composed a substantial diary of my time with UC including many anecdotes of my experience.

For much of that year Colitis dominated my life and I realised that I was going to have to get used to it. There was nothing to be gained from brooding or asking "why me?" and so I did what I should have done a year before, and opened up. I sent what I had written to my friends and family, most of whom I had avoided speaking to; simply because I had nothing nice to speak to them about. It was only once I started getting the responses that I realised what a disservice I had done to myself and those around me by choosing to be isolated.

This disease, as most people here will know, is hugely misunderstood. It's more than just a "bathroom illness" it is a systemic problem, and it was only by being honest with everyone that they could really appreciate that. And it's not just a physical disease, it's a psychological one too. The two sides of IBD are intrinsically linked however, and helping one side of the coin will translate to the other. I found it so frustrating that my consultants never asked me how I was coping mentally. It was only when I said that "today's been bad because I've had to leave the house" that any doctor treated me as patient, rather than a puzzle.

Colitis used to be something I would avoid talking about at all costs, but now I am frequently asked about, I am writing about it, and even joke about it. As I said at the start it's become part of who I am, not just a negative extension. My life improved drastically after doing something as simple as talking. My anxiety improved, my embarrassment was non-existent, and in fact I became as happy as I've ever been in my life.

Since then I have promoting my book to the wider public; and I have been shocked at just how frequent IBD is. You can read all the statistics you want, but until you start meeting fellow sufferers it doesn't mean anything real. I was amazed at how often upon hearing about my illness the response would be: "ah my Mum has that" or "my friend's been unwell too" and even "Me too!". The funny thing about the last one is how excited people are about meeting fellow sufferers. More often than not the reason is because they don't have to shy away from the gory details, they don't have to play down the extent of a flare up because they know I can relate and I know that what you see is not what you get with IBD. But from what I've learnt they shouldn't have to shy away from this with anyone.

It hasn't just been IBD sufferers who are keen to talk to me about my symptoms either. I regularly find people who have overlapping issues like bloody diarrhoea and who have not been diagnosed. Of course I urge these people to speak to their GP. If you can live with something it's all too easy to just accept it or even ignore it. Especially if the problem is an embarrassing one. But you will always find than being honest is never as daunting as you may think. They say that a problem shared is a problem halved; and they are right. When I got ill I thought that a problem shared is a problem spread; and of course I was wrong.

When I first wrote my book it was with the intention of spreading awareness through those 

closest to me. But the reason I continued writing (apart from the cathartic aspect) was because I had found out first-hand how important it is to spread awareness on a wider scale. I don't know if there are any more misunderstood or underestimated diseases out there, but there can't be many! Unless you live with it you will never fully understand, but reading about someone's personal experience is the next best thing.

The more honest you can be with those around you, the more comfortable your life will become; and that's a big factor in being healthy. And people will appreciate your honesty. 

There's no second guessing or wondering: they know.

If you want to find out what my experience was like then please visit this website: www.shituation.net where you can find out about me and my book and even order a copy for yourself or for a friend!

If you want to know more or have anything to ask at all then tweet me @Sh_thappensJC or find my own blog at jonclarke14.wordpress.com. And remember: talking helps. It may not stop you shitting; but it helps. 

Guest Writer Laura

Hey, I’m Laura, I’m 23 and I have ulcerative colitis. I’m going to talk about how I’ve balanced my IBD and my career so far, but first, a bit of back story...

I developed (and was diagnosed with) IBD when I was 19 years old. I was at university studying geography, at the beginning of my second year. IBD definitely affected my time at university but it was more my social life that temporarily suffered rather than my grades! When I had a flare up I stopped going on weekends away with the mountaineering society and would only occasionally go on a night out with friends due to tiredness, long queues in the toilets and embarrassment over my steroidal moon face! The positive side of this was that I had loads of time to stay in and work on my university assignments. I remember doing most of the revision for one particular exam sitting on the loo – good times! Luckily I had really supportive lecturers and friends who were happy to share their notes with me from the lectures I missed.

My super flexible university timetable was great from an IBD point of view but at some point in my final year I realised that this wouldn’t always be the case and soon I would have to get a job and live in the real world! I ended up applying for a job at a charity based in Oxford. I got the job and am still working for the same organisation two years later. When I turned up on my first day, I remember having a number of worries about how my IBD would affect my work. I’m pleased to say that these days I rarely worry about this so I thought I’d share my seven steps to achieving work-IBD zen...

1

      1. Consider your commute to work

I’m currently looking for a new place to live and my number one priority is finding somewhere which is easily commutable from my workplace. It isn’t always possible to live next door to work but a short commute can really help reduce anxiety when your stomach isn’t feeling great. Actually I lied, this is my number two priority, my number one is to find a house that has two toilets.

 2. Consider your place of work

I work in an office which is really perfect for anyone with IBD. I imagine that driving a lorry or working in a customer-facing role might be much more difficult to deal with when you’re having a flare up. When I was particularly ill last year I did have to cancel a lot of meetings but I still got loads of work done because I could chill out in the office or even do my emails from home.

3. Try not to get frustrated with people

If you’re like me, you might occasionally get annoyed with people who don’t understand exactly how you feel. For instance, you might start thinking things like “this meeting is so long, everyone is so insensitive for not realising I feel really tired and my stomach hurts and I might need to run to the toilet any minute!” No-one is psychic, so just ask for a break instead, or see step four...

 4. Let everyone know

The best thing I ever did was tell everyone I work with about my IBD, this has made my life so much easier. It can be difficult to talk about IBD because no one likes to discuss their bowels(!) but it’s so worth it. If you just say you’re ill that’s okay but colleagues will expect you to be feeling better the week after. It can take much longer to get out of a flare up so it’s really important that people know this. You just have to find the right way to do it. For my direct line manager and our HR representative this was a long email explaining all the gory details that can be hard to talk about out loud. For other people in the office, I have perfected a way of casually mentioning my IBD without using the word “bowel” once. I.e. “I have this colitis thing, my colon is inflamed so my stomach hurts and can be a bit dodgy etc etc”. I also enjoy mentioning famous people who have IBD such as Sir Steve Redgrave or footballer Darren Fletcher!

5. Have a laugh with your colleagues

Once you’ve accomplished step four, this is the next thing to do. When I had a flare up last year, two courses of steroids resulted in a pretty epic moon face. This usually gets me down but I was weirdly cheered up by my colleague singing “moooon face dot com” whenever I walked into the office! So much nicer than everyone skirting around the issue.

 6. Take control of your calendar

Once I’d been working in a proper job for a few months, I realised that I could make my calendar work to suit me. This really reduced my IBD-related anxiety. Obviously you need to do this in consultation with your boss. I don’t know how it goes for other people with IBD but when I’m flaring up my symptoms are particularly bad during the morning. So I arranged with my boss that I would work from home each morning and come into work in the afternoons for meetings if I felt like it. Flexi-time means I can have a lie-in if I’ve been unwell during the night too.

 7. Check out Good Desk, Bad Desk

Finally, Crohn’s & Colitis UK have a great website called Good Desk, Bad Desk which has some useful resources and interesting statistics on employment and IBD. I sent a link to this website to some colleagues when I first started and I think it really helped them understand things.

I hope these tips are helpful for people with IBD who are just about to begin their career after school, college or university. I realise that I’m pretty lucky to have great employers who allow so much flexi-time but I think this is becoming more and more common, especially now so much work is done online. It must have been much trickier to keep up with work for people with IBD before the internet existed! If you have any tips of your own I’d love to hear them so please post in the comments section below.

This is so cool...

In the words of Hannibal from the A Team "I love it when a plan comes together"...

Me and IBD is all about young people, as you should know by now! And the blog was set up because we spend lots of time online and it's a great way to share experiences with other people (whether they have IBD or not). So you can imagine how pleased we were to find out that Steph and Gabi have become friends and are writing posts for each others' blogs. 

You may remember from their previous posts for us. Gabi wrote about her experiences trying to break into the fashion world while living with Margaret (her stoma). Steph wrote about Staying Strong with IBD and a list of the silly things that people often say about IBD.

Well, the two girls discovered each other through their posts on Me and IBD and have struck up a friendship. As Steph says, "I instantly felt a connection with her. And not in a, oh we have the same kind of story, kind of connection, but one where I felt we could be good friends."

Gabi said that, "Steph’s blog was one of the first I stumbled upon the day I found out I would be having an ileostomy. Seeing Steph pictured on a beach with faded scars, looking comfortable and confident enjoying a year abroad in Australia made me feel so much better about the impending surgery."

This is such a great thing that these two writers are doing. Spreading the word is so important; realising that you're not alone and sharing tips and inspiration. 



If you would like to write for us or become a media volunteer in order to spread the word through national/regional press, get in touch with us at crohnsandcolitisukpress@yahoo.co.uk