IBD, Young People and Employment - New Report Released

Are you daydreaming about what you want to be when you grow up? Maybe you're off to university soon, or just finishing and just settingoff into the big wide world of work? Is it proving tough?

Well, it's a difficult time work-wise for everyone at the moment, but young people are really bearing the brunt of hard economic times - nearly 1 MILLION unemployed in the UK at the moment.

Today sees the release of Crohn's and Colitis UK's sub-report "Inflammatory Bowel Disease in Young People - The Impact on Education and Employment" which focuses on young people aged 16-25. It looks at the concerns of those still in education, support within the workplace for those who are already employed and offers recommendations as to what needs to be done in the future. You can view it here.

The original "Crohn’s, Colitis and Employment - from Career Aspirations to Reality" report, commissioned by Crohn’s and Colitis UK, was published in May 2011.This report aimed to assess the impact of IBD on career aspirations, opportunities and choices. It was based on the results of a survey conducted among almost 2,000 people in the UK with IBD. You may have seen coverage in the news:

An article in the New Statesman this month gave the following worrying statistics for young people leaving school this year:

• Last year 1 in 4 employers didn't employ a single person under the age of 25.
• On average, young people in the UK will spend 2.5 years out of work.
• Those with low or no qualifications are 3 times more likely to be unemployed.

These numbers don't make for pleasant reading, but don't be disheartened - in the report we found that young people in employment had a more positive outlook on aspects of employment than those still in education. In other words, if you've just been diagnosed and you're still at school please don't give up! While IBD is a chronic condition, with appropriate treatment it is often possible to remain well for long periods and many people with IBD are able to work full-time.

Here is a taster of the information from the report, the statements that pre-employed young people agreed with the most:

The full report, and a handy infographic illustrating the results, can be found on the Me and IBD website. Click here

The 2011 Crohn's and Colitis UK survey ("IBD and Employment") found that 81% of employees had told their employer or HR department about their IBD, and 77% had told their coworkers. Most employees said that they felt comfortable about discussing their condition.

Tomorrow we will bring you more information about IBD and Employment and the support that is available for young people.

Guest Writer - Caleigh

I was 13 years old when I was diagnosed with Crohn’s Disease. Although I was still young enough to be treated at the children’s hospital, the Gastroenterologists at the main hospital has

the best knowledge about Crohn’s, so I was admitted to a ward where I was at least 40 years younger than everyone else. As my family wondered aloud how it was possible that I could have an ‘old person’s disease’, the nurse put me in a private room so that I could have my friends come to visit without upsetting the older patients. It felt like everyone had an auntie, or a second-cousin’s hairdresser’s friend, who also had Crohn’s Disease, but never anyone my age. Of course, it’s actually quite common to be diagnosed with IBD during adolescence and I’ve since met plenty of people my own age with the same condition through social media, it just never occurred to my family and friends to consider that other teenagers might also be in the same boat as me.

At the risk of sounding ancient, when I was 13 the internet was pretty limited (it was dial-up and mostly AOL and chatrooms) so it was tough to find online support for Crohn’s. I was a member of Colitis and Crohn’s UK and all the information they offered was massively useful and it formed the basis of my knowledge about IBD. My parents bought me a book, but reading it terrified me - it was full of worst-case scenarios and horror stories -and I chose the ‘ignorance is bliss’ approach to living with Crohn's for a long time.  In fact, until I had my first major flare-up, during my second year at university, I was completely unaware of the symptoms that eventually led to three hospital stays in as many months.

I’ll admit to being a bit (a lot) jealous of young people with IBD today. Not only do you have access to Facebook and Twitter, where you can meet thousands of fellow Crohnnies and UC-ers your age, but you also have Me and IBD! Even with all the brilliant support that Colitis and Crohn’s UK provide, most people are still oblivious to the fact that young people are affected by IBD, to them it’s still an ‘old person’s disease’.

As well as that wonderful support that Me and IBD offers, they are working to highlight the issues that young people with IBD live with. We (humour me, I’m counting myself as a young person now) need to spread the word that not only do young people have IBD, but there are issues that affect us at school, university and the workplace. We have to decide who to tell about our Crohn’s Disease or Ulcerative Colitis, remembering how judgmental our peers can be at times, and how hilarious some of them find anything toilet-related. When we are dating, we have to find boyfriends and girlfriends who are not only understanding, but supportive in times of ill-health, with doctors, hospital visits and those urgent searches for a loo during romantic evenings out! This, and more, is why it’s so important to put the spotlight on all the issues faced by young people with IBD in the press. 


The biggest battle we face is the one against ignorance and the more people who know about Colitis and Crohn’s, the better. Me and IBD can show the rest of the world how we face our conditions head-on, with bravery and a little bit of good humour, and that can only be a good thing.

Caleigh has her own blog Gluten Free[k]

Guest Writer - Steph

Steph from Imagine Being Different talks about Staying Strong...

Have you ever had someone tell you that you couldn’t do something? I’m sure everyone has, at some point in their lives and for me, that’s what living with IBD was like, “someone” always telling me that I couldn’t do the things that I wanted.

What do you do when someone says “You can’t do that?” You rebel. You stick up two fingers and you eat all the things that you shouldn’t, go out drinking, stay up late, all in the attempt to feel like a “normal” person. You do it, even though you know that bar of chocolate/curry/pint of beer that you consumed will keep you up all night and you’ll most probably end up sleeping on the bathroom floor because it’s just too much effort to keep on going back to bed.

Unfortunately I found out the hard way how hard it is to fight against IBD, that all the food that I shouldn’t have been eating, the late nights, made all my symptoms worse and put me in hospital.

I was diagnosed with Ulcerative Colitis when I was 19, I am now 24, and it was a really hard time in my life because I was at university. I was so embarrassed to have been labelled with a bowel disease at the age of 21. I didn’t tell many people about my symptoms at first, they just knew I was sick. How was I meant to explain that I went to the toilet more than 15 times a day, that I bled, that at very horrific times I couldn’t control my bowels and that I was exhausted constantly?

Slowly, I came to realise that there is absolutely nothing to be ashamed of. The only reason that people are embarrassed by this disease was because it centred around poop, and let’s face it, no one wants to hear or talk about this subject. In the beginning, I never spoke about the intricate details of my disease but I did start to open up more. Why? Because no one had ever heard of IBD and I wanted there to be more awareness.

Now, I talk very openly about my journey. I don’t tend to sugar coat things, even if it is disgusting because unfortunately, having IBD is a part of me and if you are grossed out by it, then I know that you’re not the kind of person that I want in my life. Also, the only way people will understand the shortcomings of having a debilitating disease is if I tell you the good, the bad and the ugly and more importantly how I’ve managed to overcome each and every single obstacle in my way.

First it was just being diagnosed with IBD, and then it was multiple trips and stays in the hospital. In 2010, when I was 21, I had an operation to remove my large intestine because I had a virus in my bowel which wasn’t letting the Colitis settle.

At first, it was a hard adjustment having a stoma bag at such a young age. I would feel self-conscious, that people would see it and judge me, and I was really embarrassed. Who poops on the side of their body?! Gradually, I came to terms with it and instead of hiding away I told everyone about it, and felt no shame in lifting up my top and showing people exactly what I had. It stared to become my party trick when I was little drunk “I hash a stoma bag, wanna see?”

 I started a blog as a coping mechanism, a space to be able to vent, to show people how I lived with a stoma bag in everyday life.

God, there were times that it infuriated me, like when I was in Rome and my bag split and leaked all over me.

I remember crying in the taxi and then laughing. Only that would happen to me, but more importantly, I didn’t let having a stoma bag stop me from getting on a plane and travelling to Rome in the first place.

The biggest achievement so far is that just before I graduated university, before I had my operations I decided that I wanted to travel Australia. I was saving up to go when I had my first operation and I had a decision to make. Do I go to Australia with a bag or do I wait until all my operations were over?

I decided to go for the reversal, and travel once I had my J-pouch.

Unfortunately, my J-pouch is very temperamental and I developed chronic pouchitis. Which is very similar to having colitis as the J-pouch becomes inflamed and bleeds. It seemed that Australia was not meant to be.

But I said from the very beginning of being diagnosed with Ulcerative Colitis that I would not let it hold me back. I’ve learnt to live with the disease instead of fight it, to listen to what my body is telling me. I’ve learnt that sometimes, I do need to take the time out to rest and it’s not me being weak, or missing out, it’s just me having a disease that sometimes can stop me doing everything all at once.

As I write this, I smile because I am in Australia, on a working holiday visa. It may not be when I planned to do it, but nevertheless I am here and I am the healthiest I have been in long time.

From personal experience, things do get better. You learn what is good for your body, for your mind and things do get easier in time.

My disease does not define me. Sure, having IBD has helped me work on myself on a personal level. I’m more outgoing, and I have learnt that I am one seriously tough cookie. It’s helped me to be more courageous, it’s helped me to reach out and help people and it’s shown me how unbelievably lucky I am to have so many people in my life that support me.

But underneath it all I’m still me. I just happen to have Inflammatory Bowel Disease.  At times the life I lead is compromised by it, but it doesn’t stop me from leading the life I want to. It just means I have to be flexible to the idea that things may change, and they may not happen exactly how I want them to but eventually they will happen, because I can achieve anything I set my mind to. 

Steph writes her own blog "Imagine Being Different" - be warned, there are lots of pics of her life in Australia, which are highly likely to make you jealous!!

What's all this about then?

The Me and IBD microsite is brought to you by leading charity Crohn's and Colitis UK and has been set up with young people with IBD in mind. We've tried to get as much as information in one place as possible - without bombarding you with too much at once! 

You might have just been diagnosed, or have been living with IBD for a while and just want a bit more information. Maybe things are changing in your life and you want to understand how IBD might affect your next steps? Can you cope with Crohn's disease at University? Can you go travelling with ulcerative colitis? If you're taking your first career move and not sure if you have to tell your boss about your IBD? We've got information on how to deal with these things and more. Go to the Your Questions pages for more...

The microsite forms a part of the main Crohn's and Colitis UK website, but really focuses on what it's like to be a young person with Crohn's or colitis. It really hones in on the things that are important to you.

So check it out, have an explore and if there's anything you think is missing - let us know! It's all about you... what you need and expect out of life.