Support for Young People

If you follow our blog and have visited our website Me and IBD, you'll know that the number of

young people getting diagnosed with Inflammatory Bowel Disease each year is a whopping 10,000 (that's out of 18,000 who will be diagnosed in total). Despite preconceptions, IBD is a young people's disease.

So we're reclaiming it! We're talking about it and sharing experiences. If you want to read real life stories, just do a search in the box (top left) for "Guest Blogger" and you'll be able to read all sorts of stories from all sorts of young people. They're raw and honest, funny and bittersweet. But they're all true and they're available for you to read.

If you have a problem that is niggling you, or a burning question and you should be able to find the information you're looking for on the Me and IBD website or the main website (which has lots of Information Sheets). 

                    If not, why not give us a ring?


We have a number of helpline services available to everyone (not just members).

The services are designed to provide information and support, regardless of your situation or background. These include:

• People who have recently been diagnosed with IBD and those living with the condition for a number of years

• Friends, relatives, partners and carers

• Young people and the parents of children who have IBD

• People who are looking for information about the condition and the impact that it has on day-to-day life

• Those who need emotional support

• Anyone who needs help with practical matters, such as finding out about, and applying for, disability benefits

You're never alone in this, we're here to help and support you wherever we can.

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 Harvey - Young Diagnosis

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

Harvey Hancock

Part ONE

Rewind to summer 2001. I’m on holiday in Portugal. I should be enjoying the sun but I am peering into the toilet. I am so impressed by the sight my 10yr-old eyes see that I call my mum in so she can view this biological magnificence. “Look Mum!” I say, “I’ve got snot in my poo!”

Fast forward one week. I’m in the car on my way home from the airport. It’s not very late but I’m sleeping again – I’ve been doing that a lot lately. Mum keeps poking me awake, which I don’t enjoy, to show me the really interesting places we’re driving through. I’m 10. I have no interest in being woken up by a prod in my chest to be told that Biddy, or Elaine, or Auntie Melanie lived in this town. She would reveal to me 11 years later that she agreed this was a poor excuse to wake a sleeping boy, but, at the time, she didn’t want to tell me that she was waking me to make sure I wasn’t dead.

Fast forward one day. I have been rushed into hospital and am being admitted into the children’s ward. Apparently such sudden weight loss and “interesting bowel movements” aren’t common in healthy young boys. I get a room to myself, but the TV has no remote; this shouldn’t really bother me given the circumstances, but watching Scooby Doo is higher on my agenda than having strangers shove thermometers in my mouth, and certainly higher than the struggle to make it to the toilet in time every 45 minutes or so. I am massively dehydrated and feverish, sleeping with a fan in each corner of the room. Everyone else wears blankets around them when they sit with me but I am still swelteringly hot in my hospital gown, giving me a more ghostly shape than I’d perhaps appreciate.

Fast forward a week. Scooby Doo is doing my bloody head in; I get it, it was the janitor. I am accustomed to having strangers shove thermometers in my mouth and my violent diarrhoea. My “interesting bowel movements” are now an hour apart – progress. Unfortunately, I am still not walking. Mum suggests I walk up to the end of the corridor and back. I take my drip stand in my hand – not only is it delaying death by dehydration, but it acts as a rather stylish walking stick. It has wheels and everything. I take mum up on her offer. I know dad is coming by with Sian and KFC (I prefer the KFC to my kid sister) and the thought of tucking into the culinary delights of Colonel Sanders over the hospital’s three-course-melange of mystery meat gets me on my feet. 

As I drag my feeble frame from one end of the corridor back to my room I consider the implications of denouncing hospital food by comparing it with KFC (which, in spite of its name, doesn’t really taste like chicken) but am distracted by a young boy bashing many toys in the play-room. Concluding that the boy and I are not kindred spirits, I decide never to walk up to that end of the corridor again. I return to my room for a quick poo and some well-deserved rest.

Fast forward 3 days. A charming doctor named Julian comes to my room. He tries to pass off his conversation as a secret between the two of us but he is basically talking to my mum. Crohn’s Disease, he explains to me, is basically my tummy deciding to speed up the digestion process to such an extent that it forgets to absorb any nutrients from my food. Moreover, he tells me that this Crohn’s Disease is causing my “interesting bowel movements”, which explains why I am able to see entire meals in my toilet bowl. KFC is quite familiar with the toilet, now – I am eating it every day because dad says that I deserve a treat. Before Julian retires for the day, he also says that I am particularly special; my liver is ballsed up, too! This doesn’t affect me at the moment but Mum says that I won’t be able to drink alcohol in the future. I believe her when she tells me I can “have a glass of champagne on my wedding day, but that’s it.”

Fast forward to the next day. I am actually feeling better. I have finished eating my KFC and it takes almost an hour and a half before my toilet acquaints itself with my dinner – I am an unwilling middle-man in this despicable love triangle. Medication has done its job and I am able to shower without sitting down. My “interesting bowel movements” are no longer interesting and they stimulate me about as much as Scooby F*!"ing Doo – so my dad brings in my Playstation and goes on the hunt for a television remote. It appears the room next door has a television remote, but the mother refuses to share it because her daughter is more ill than I am. I complain more than I should, disregarding the fact that we are kindred spirits. We’re stuck in bed like flowers that refuse to grow, away from home and missing out on the summer weather. Television is our only weapon, our only reminder that the world is having a party – and we’re not invited. Then the runs hit me at breakneck speed and I have to stop playing the philosopher. I let the girl keep the remote.

Coming up in Part 2 - going home, school and telling the other kids...

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 - Sadie

Hi, my name is Sadie and I have Crohn’s Disease.

I was delighted that ‘Me and IBD’ asked me to write a guest post on their blog as, after starting my own blog around my story and struggles, I am hooked!

IBD isn’t a very glamorous disease and I think some sufferers are reluctant to share their experience as it can be embarrassing. This, accompanied with the confusion between IBD and IBS, means that not a lot of people are aware of the severity of the disease, or fully understand how it can affect us!

I hope that by sharing my story and experience with the condition I can not only help others through hard times, but educate and raise awareness of the disease.

First of all, I will start off with life before my diagnosis. For me, and for lots of other people with IBD, it takes a long time to get diagnosed. I experienced extreme fatigue, bloating and urgent diarrhoea before I was diagnosed with Pernicious Anaemia and IBS by my GP. It was really tough going through school and college with these horrible symptoms and no medication that seemed to work for me. I was embarrassed to use the toilet anywhere other than my house, but sometimes I had to. My constant fatigue meant my exams were a struggle. But after I while I got used to it and thought that this was something I just had to put up with.

I managed to pass my GCSE’s and A Level and get a place doing Drama and English at Hull University. In my second year there, is when I really started to experience problems. My symptoms just seemed to get worse and worse until one day I rushed to hospital with severe stomach cramps and vomiting. It turned out I had an abscess and severe inflammation in the ileum of my bowel. This was when I was first diagnosed with Crohn’s disease.

Since then I have been battling this disease head on. It was kind of a relief getting a diagnosis; I could now get treatment instead of being told I had to just get on with things. But it was a bit of a shock. I didn't realise how serious it was at first and just shrugged it off thinking I’d be fine and back to normal by September, when I started my third and final year at uni. But it didn’t…

I know I am lucky in some respects because my disease is in no way as bad as what others have experienced. It is classified as moderate- severe but thankfully I have not had to have surgery (yet) or be hospitalized for longer than a week! (I think this is mostly due to my moaning when I am in there, I am so stubborn even though the doctors and nurses are helping me, and I cannot stand to be told what to do. So being told I can't leave really grinds me gears :P)

I have tried several different medications and therapies since I was diagnosed. You can head over to my blog to hear my experience with each medication but remember everyone is different, so what works for me might not work for you or vice-versa :) 

Although I have only been diagnosed for 9 months, my journey so far has been a whirlwind. I think I have finally come to terms with it now. Having a chronic illness is tough and it has affected my life a lot, even without me or other people realising. It has affected university, my job, my social life; my relationships, my self-esteem, and even my fitness and hobbies.

BUT I always try and stay positive no matter what because I know there are people who are going through 100% worse. Now and then I even joke about it :) I don’t want to complain and I don’t want attention, I just want to try and live as normal a life as I can.

I’ve had so much help from my IBD team and am so thankful for the NHS. My friends and family; especially my mum and my boyfriend Sean have been there for me whenever I need help or support. The online community and social networking sites have enabled me to talk to other people in the same situation as me and help me realise I am not suffering alone.

IBD may not be life threatening but it definitely is life altering. I know I am a better person since I was diagnosed. I have learnt to appreciate the little things like being able to go out with friends and even eat! Happiness is a healer and although I have missed a lot of opportunities because of being ill; I know I will succeed not despite of it, but because of the person it has and will make me! 

I also hope I can help and offer advice to people who are going through similar things to me :) So feel free to message or comment on my blog for any advice or support! 

Confessions of a Crohnie