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 - Sam

So Bad Ass came into being as a website and blog about Inflammatory Bowel Disease and specifically my journey with Ulcerative Colitis and living with a stoma.  Over the past year it has become so much more than that and I have been inspired to talk more about self esteem, body image and loving yourself.

In 2003 I was diagnosed with Ulcerative Colitis.  I had never heard of this before and so went off to google and what I found seemed to be a horror story, all the talk of ulcers and bleeding, surgery and bags! I was 22, engaged to be married and had two children.  I felt like my life was over.

What followed were years of flare ups and remissions, never knowing when a flare up is coming or when it will end.  

In May 2013 I started with a flare up, after trying to control it with drugs for months I was eventually admitted to hospital for a course of IV high dose steroids.  I was passing a lot of blood and was very poorly.  After 6 days of intensive IV steroid therapy along with a whole host of other drugs, the decision was made that surgery was the best option for me.  

On 3rd September 2013 I had a sub total colectomy and end ileostomy.  I now have no large bowel and live with a stoma in my stomach, I wear a bag to collect all my waste and my life has changed forever!  

During my treatment I blogged my heart out, it has helped me to deal with the changes in my life and feels good to talk honestly about my illness, treatment and life.  I blog in the hope of making poo no longer a taboo…

I hope that reading my blog helps people to deal with their own situation.  I want to let other IBDers know that just because you have a bad ass, it doesn’t stop you from being badass…

The blog now gets thousands of views every week, I receive so many emails and messages of support and encouragement as well as a lot asking for help and support themselves.  I am so proud to have used my illness and surgery to spread the word and raise awareness of Crohns and Ulcerative Colitis.  I use my ileostomy and stoma to show images to the world to rid the fear of the bag!  I show my audience that having a chronic illness is just one small part of who I am, and that if they just open their minds and look a little deeper, this ileostomy bag does not define me.

I spoke at International Women’s Day this year about Ulcerative Colitis, living with a stoma, body image, self esteem and positivity.  I am also developing a workshop for children and young adults to learn about loving their own bodies no matter what they face in life and have more public speaking lined up for this year.

The coming year is one of more surgery (Im going to cease to be an ostomate and become a pouchie!!!) building the blog, raising awareness and generally shouting as much as I can about Ulcerative Colitis, Crohns, stomas and pouches and I run a photography company called The Picture Foundry. 

I am also renewing my wedding vows at the end of this year after ten years of marriage with a big ceremony which Im terrified about!! I am using the wedding as a way to raise money for Crohns and Colitis UK though, we are asking our guests to make a donation in lieu of gifts so this year is a busy one.

I didn’t ask for this illness or this life, but I will make the most of every second of it.  If I can raise awareness of the disease, it makes it worth while.  My surgery, illness and stoma can make a difference and so every day I remind myself that I am so bad ass.

You can take a look at my blog at http://sobadass.me

Follow me on twitter at @so_bad_ass

Or like my page on facebook at https://www.facebook.com/SoBadAss1

We've Hit the 5,000 Mark

We would like to say a massive thank you to everyone who has supported the charity through engaging with our Twitter feeds.

The Crohn's and Colitis UK Twitter page has now passed the milestone of 5,000 followers.

Please continue to support the charity via our social media channels and help raise awareness of Crohn's Disease and Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease (IBD).

Don't forget that we also have a dedicated Me and IBD Twitter feed too....

Follow us on...

• »Our Twitter feed

• »Our Facebook page

• »Our YouTube channel

• »Our LinkedIn network

Ambassador Ali Jawad Breaks World Record, Wins Gold

Ali, a British Paralympic powerlifter and Crohn's and Colitis UK champion, won a gold medal at the Asian Open Championships in Kuala Lumpur - setting a new world record in the process.

Everybody at the charity would like to congratulate Ali on his amazing feat, which involved lifting 185.5kg (more than three times his bodyweight!) in the -59kg class in Malaysia - and beating the previous best mark by 10.5kg.



Moments after winning gold, Ali was quoted as saying:

“I'm thrilled by my performance. It's a great stepping stone to the World Championships next year... to break a world record is something many athletes can only dream of."

Watch Ali's video and read more about his inspiring story here.

Inflammatory Bowel Disease in Art

Artist Laura Foote got in touch with us to share her artwork and new website.

"I have recently made a website with art on it that I think might be of support to those with the disease. I have had Crohn's Disease since I was 13 and it is quite aggressive in my case - I have had most of my intestines removed and replaced with an ileostomy. 

I haven't let it stop me and I have striven hard to continue with my degree in Modern Languages, study abroad and create art for everyone's enjoyment and also as a way of purging my anger and frustration at having this incurable condition. 

I have tried to subvert the anger into humorous images that can uplift and entertain; other images are purely about anger and pain, but in any case it might give others ideas on how they might be able to overcome it."

Check her website out: http://cargocollective.com/laurafootes

A massive thank you to Laura for getting in touch and sharing her amazing art - what an inspiration!

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 Nick Talks Honesty

Hi, my name is Nick, I am 25, and was diagnosed with Crohn’s disease when I was 13 years old.

My condition has been better in the past few months, so I’ve wanted to be able to help others while I am in a position to do so. I started a twitter account called ‘Awkward IBD’ (@awkwardIBD) detailing the ‘lighter’ side of IBD.

In my last post I talked about researching your condition and how sometimes it's better not to read up too much! 

So what would I next tell Little Nicky? (My 13 year old, younger self, not the son of Satan as portrayed by Adam Sandler… ) It would be to be honest with those around you.

This is probably the biggest thing I have struggled with, with regards to my Crohn’s. I guess in this respect, I am your archetypal male. Whether it is bravado, or whatever you will call it, there is a reluctance because of how others will perceive it. I will state very clearly right here, I do not advocate telling everyone you meet, the ins and outs of your condition, especially if you are in school… Rightly or wrongly, there could be people who don’t know you very well, or are too immature to fully consider the hurt it will cause you, who will judge, or make fun of your condition. This is obviously not right, but we don’t live in a perfect world, and my advice here is for you to get by the best you can.

Be honest, not only with the symptoms of your condition with those close to you, but also how it is making you feel. For me, my reaction is to try and make it look like I am taking it on the chin, that I can cope with everything that comes my way. That is who I am and who I want to be. However, if I am having a bad day and snap at someone, or act strangely trying to cover it up, the other person, has no idea anything ‘extra’ is wrong. It can very easily damage your relationships if you let it. You have to be able to swallow your pride, and let the people around you in. You can still be the person they rely on, who people look to when they need help, without constantly having to keep up a front. It will actually help you to be there for others, when they themselves feel they can help you in return.

A slight aside, but one that I feel needs to be mentioned; I have seen people writing online, that they have ended relationships or friendships, because they think they are too much of a

burden, and that they are saving the other person from having to deal with them. This is nonsense! If you have someone who you have been totally honest with about your condition, and how it makes you feel and they STILL want to be a part of your life, making a martyr of yourself will just serve to hurt EVERYONE involved. It may also cause you more stress and harm your condition (if we are looking at this from a purely selfish and medical point of view). Finding someone who truly wants to be with you, and will take you for all your flaws, whether medical, physical, emotional, or in my case, an unhealthy dose of all 3, is the greatest thing in life, so don’t push it away because of, ultimately, how you perceive yourself.

Being honest with your school or employer is also a necessary step. They don’t need the full ins and outs, but what I’d term a ‘working knowledge’ of your condition is essential not only for them, but for you. Let them know how it will affect you, and whether you need any additional assistance.  Schools, in my experience, will be very understanding, and give you as much support as they can. Work, has also been very good, though I understand some people’s reluctance in this respect. Personally I found if your condition does make any demands of your employer, show to them that you are doing all you can to negate any difficulties, and they will be very appreciative and understanding.

Finally, and for your health, this is probably the most important. IBD can, and unfortunately probably will, involve pain. Pain is a ‘great’ motivator for human beings, and unfortunately in most cases, a negative one. As a natural instinct, our actions will alter, whether consciously or not, to avoid pain. When it comes down to choices of medical treatments for instance, this is not necessarily a good thing. No man is an island, and this is a good example, where, having someone you can be honest with AND who can be honest with you, will benefit you greatly. I put off having treatments which involved needles and injections for years, I am probably in a worse state now because of it. However, I met my girlfriend, and she was the first person outside of my family, that I have been honest with about my condition. Making that first step and opening up to someone, and their reaction not being the sum of all those horrible thoughts you’ve had, is a very (and I hate this word, but it fits) empowering feeling. Having that extra motivator was the final push I needed to seek out the treatments I had feared for years, and they have made me healthier. Not healthy, but healthier… and I’d hate to think what state I may be in now if I hadn’t. For as long as I could remember, IBD was me vs my body. Now it was 2-on-1, and with every person you tell, it gets easier and easier.

Your own judgement can be clouded with regards to your own condition, so having people who know you, and can take a step back and see the bigger picture, will help you make the right decisions.

I’ll sign off with my favourite quote, I can’t remember who said it, but it stuck with me, and demonstrates perfectly why facing IBD on your own, in your own head, will never be your best course of action:

“You cannot be your own confidant… Surround yourself with people you trust to tell you things that you won’t tell yourself…

                                                        … then listen.”

Guest Writer - Lindsay "Me and My Gremlin"

Since August 2005, I’ve had a little friend that goes everywhere with me.

Even writing that statement makes me feel a bit mental. And you probably think I am too. But, please, stick with me on this one.

So this friend. I call him my Crohn’s Gremlin.  I haven’t gone as far as giving him a real name, because that would absolutely be taking this too far, but I have him. And every time I go to do something, whether it’s book a three-month-long trip to the USA or grab a particularly spicy curry from the supermarket refrigeration aisle, he’s in my ear hissing, ‘Are you sure you should do that?’

Sometimes, I listen to him. The curry always gets put back. The three-month-long trip to the States, however, went ahead. Twice. 75% of the time, I’d say my gremlin doesn’t know what he’s talking about. The other 25%? He’s totally spot on.

Oh hey! Did you have plans today?

If you have an IBD, you probably recognise this feeling. The part fear, part ‘oh right, I should be sensible’ that comes with having a bowel condition. The rest of the population would say, ‘That is the craziest thing I’ve ever heard. How bad can a bit of tummy trouble be?’

And there’s the thing. It’s not just a bit of tummy trouble. It’s everything. It’s getting woken up in the middle of the night with a searing stomach pain and constant urge to go. It’s juggling your studies, your work, your social life with regular medication to get it all done. It’s lying in a ball on the bathroom floor when you’ve eaten something you shouldn’t have (a day when the gremlin just wasn’t loud enough). It’s hours on the toilet. It’s vomiting as soon as you eat mid-flare. It’s the worst pain you can imagine – worse than IBS like your pal’s Auntie Kath has, and 100 times worse than a dodgy kebab. It’s pain so violent you can hardly breathe – literally, your breath catches in your throat, morphs into a panic attack and you genuinely believe for a moment that you might die. It’s not having any clothes that fit because you keep on losing weight, and you really don’t want to. It’s cancelling plans and becoming the flaky friend but you just don’t have the energy. It’s being anxious about even going out in case ‘things go wrong’. And, God – it’s embarrassing. “Hi, I’m 18 years old and I have a bowel condition.”

Because that was me. 18 years old, standing on the edge of the rest of my life, with uni and hot uni boys and uni nights out and more hot uni boys (and an exciting media career once I’d got all of that out of my system) stretching out in front of me. Then it was all pulled away from under my feet when I was told that all of that? The pain and the cancelled plans and all that quality time on the loo? That’s Crohn’s disease. And you’ve got it forever.

Being in hospital, hooked up to drips of steroids and antibiotics and regular morphine injections while your mates are in the pub, is not really the dream, let’s face it. It’s probably as far away from the dream as it gets. For me, in that hospital room, surrounded by grapes and cards and soft toys (does anyone else have an abundance of soft toys from hospital stays?), I thought life was over. I hung up any hope of going to uni or having a social life, I gave up on the notion of being a journalist, of falling in love, of having babies, of being normal. And I accepted the fact that I was going to be the Girl with the Knackered Bowel forevermore.

It’s dark, having a bowel condition. And people will roll their eyes and tut at that, because, God, how melodramatic can you get? But it is. It’s lonely. Accepting that things are going to be different from now on is really, really tough, especially when you’re young. It’s accepting that you’re not going to be like your mates all the time. It’s accepting that you’ll spend a lot of time in your bathroom – to the point that you’re familiar with the pattern on each tile at eye level and you’re considering getting a magazine rack for beside the loo. 

It’s accepting that you’ll spend a lot of time at your doctor’s and in the local pharmacy. It’s accepting that you might have to research the menu before you go out for dinner, or scout out where the loos are whenever you go somewhere new. It’s accepting that, when dating, there will come a point when you have to explain that you have a really attractive bowel problem. It’s accepting a new you.

After a few months of more drugs than I even knew existed, actually starting uni, battling with people not understanding IBD at uni, missing lectures because of flare ups, dropping out of uni, dealing with crippling anxiety, very dark days, a bowel resection and having a Good Long Look at myself, I decided – d’you know what? I don’t want to be the Girl With the Knackered Bowel. I just want to be me.

"A scar does not form on the dying.
A scar means, I survived"
Chris Cleave

And my health started to improve. The resection worked, the drugs started to kick in and, very quietly, I was ready to give it all another go. So I went back to uni, I got a degree, bagged a problem page in a Scottish national newspaper, spent two summers working at a summer camp in New York, did loads of work experience, worked weekends in retail, went on drunken holidays with my friends and, just after finishing up a journalism postgrad at university, I got offered a job with a small magazine publishers based in Glasgow. I now work full-time as the assistant editor for a range of free magazines, including disability title Enable and student magazine Source. I am busy all the time and absolutely thrilled to say I am a proper journalist – I’ve got to do some incredible things over the last couple of years.

Sure, there are bad days when I’m knocking back painkillers at my desk, going for investigative colonoscopies, woken in the middle of the night by the pain, strolling around the house with a hot water bottle clutched to my stomach and having constant battles with my gremlin, but overall? I’m good. My Crohn’s is – she says, touching every bit of wood in sight – under control. My life is under control. And there was a time when I, the Girl With the Knackered Bowel, thought I’d never get to be here.

I don’t let Crohn’s define me. I am completely open about having it – something that freaks a lot of people out because, heaven forbid, we’re British and absolutely do not talk about poo – but I don’t let it hold me back. OK, sometimes I will listen to my gremlin. Usually when it comes to ordering carbonara in restaurants or knocking back another glass of wine. But everything else? Sorry Crohn’s Gremlin, I’m absolutely going to give it a go and I’m going to try and do it well. 

And I think you should too.