Guest Writer - Louise

My First Time Talking about Crohn's and University

I have never been that keen on writing a blog, purely because I thought the idea was a bit self indulgent and that no one would want to read about my rather usual life (not that I'm meaning to be self-deprecating because I'm not, I love my life but it's not that out of the ordinary). 

However, after being diagnosed in February with Crohn's Disease I realized that I do have something of worth to write... I have successfully managed to graduate university and start a masters degree while dealing with ill health, and maybe I have some advice to people who are maybe struggling with IBD (Inflammatory Bowel Disease) and education.

A little bit about me, my name is Louise, I am 21 years old and I graduated from Liverpool John Moore's University in July 2013 with a degree in Environmental Science (Bsc Hons) and started an MBA in Environmental Management at Bangor University in September 2013.

This year has been a roller coaster of emotions really, it started off with me feeling extremely frustrated, embarrassed and upset that I didn't know what was wrong with me and why I was feeling so ill and then feeling so relieved when I finally got a diagnosis. Relief is an emotion I think a lot of people have when they get diagnosed with IBD, which seems strange because you wouldn't expect it to be a relief to be diagnosed with a life long illness, but it takes such a weight off knowing that there is a reason that you feel so ill and that it isn't in your head or your fault. Crohn's and Colitis are invisible illnesses, so that means when you feel really ill to the point where you can't get out of bed or your on the toilet multiple times a day, people can't physically see that your ill. Without a diagnosis (and also with), the often given reaction of "but you look fine" can be crushing, especially at University when your meant to be able to deal with assignments, revision, living in shared accommodation and trying to find the energy to socialise and go out and have fun.

Due to the fact that for 2 and a 3/4 years of my undergraduate degree (practically the whole thing) I didn't have a diagnosis, it was difficult for me to get extensions for deadlines, it was also difficult to miss lectures because of ill health as I didn't have a doctors note with a diagnosis. However, I did not want to let my ill health dictate my life and I worked unbelievably hard and basically lived in the library, I made excuses not to go out and drink because I knew I would suffer from a flare up and for me, it wasn't worth it. The fact that drinking makes me ill affected my university life more than anything, and before you start thinking I have a drink problem (I don't), hear me out. University life, for me, in first year revolved around pre-drinking for a night out, going out and recovering the next day, all the friends I made, I made through this cycle, and when you suddenly stop going out, it becomes hard to carry on all of these friendships that you have made. I got called boring, a lot. I also got "you're old before your age" and "I remember when you used to be fun" etc. I am not upset about the fact people said this to me, I completely understand the social pressures, as a 21 year old you are expected to go out and drink and have fun and that to not, isn't deemed "normal", in fact, I miss going out and dancing and drinking but I had to come to terms with the fact that doing this makes me very ill. I still go out for birthdays and if I have nothing on that week that means I have to be in good health then I will go out, but in third year and during my masters I can't risk getting ill, because getting ill means missing lectures and falling behind. Remember, if your friends can't respect the fact that your too ill to go out, they aren't worth having, nothing is more important than maintaining remission and staying in the best health you can.

Of course, stress also plays a part in the frequency of flare ups, I suffer terribly from stress when I have assignments so I try and start them all weeks before the deadline and take them one at a time, obviously this isn't realistic all the time as assignments clash, however I've found that if you mention deadline clashes with university lecturers they often try and give an extension, not always but it is definitely worth asking. Going to the gym also helped alleviate my stress, but when this was too physically exhausting I did yoga.

What I want to emphasise in this blog is that although life with IBD can be extremely trying and difficult, it shouldn't put you off doing what you want to do with your life. If anything, I think Crohn's changed my life for the better, I never really tried to achieve anything when I was younger, and I was quite complacent in wasting away my time doing nothing. Now when I do nothing I feel so much worse and lethargic, when I am having an off day I like to get up and do something productive even if its just a small accomplishment like going for a walk (believe me sometimes this can be a huge accomplishment), it not only takes my mind off feeling awful, but it also makes you feel more optimistic that you are capable of doing things. 

Obviously some days are complete write offs, in the fact that you feel so poorly that you can't get up or you can't leave the house because you need to go to the loo so much, but during these times I like to plan what I'm going to do when I feel better.



In spite of Crohn's I went from mediocre A levels, to graduating with a First class degree, something I would never have imagined possible, I refuse to let Crohn's dictate my life anymore than it does already.

I would love to hear other peoples experiences of having crohn's disease at university so please feel free to comment.Check out my BLOG.

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 - Conclusions

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

Harvey Hancock

Part Four

Fast forward 2 years. My trip to university has been delayed, for reasons obvious to you. I now have to stay behind in 6^th form and do an extra year while all my friends leave to go on their own university adventures. I’ll still get there, eventually. But right now I am being bullied by kids two years younger than me because I just won’t leave school. School is the last place I want to be, and my attendance drops to 50%. I’m not ill, I just refuse to go in. The work is too easy and there is nobody waiting there for me – at least nobody who wants to put a smile on my face. I so want to escape the grapples of school so it’s time to don my armour and pick up my shield. I’ll shut myself off. I’ll deflect their words and jibes. I’ll do what must be done to get on with my life. I’m going to make a success of myself and nothing will stop me. Crohn’s can do one. And those snot-nosed wotsits, surrounded by jeering friends, they’re not worthy of my time or emotion. I’ll write this year off. That’s what I’ll do. I’ll just do my work and keep my head down. And look forward. The promise of university is all I have to keep me going.

Fast forward three years. I’m in the second year of university and I have an exam in an hour. I’m not going to pass it. I go to see my tutor before it and she says “you look like crap, man.” I agree, but say that, while I’m on campus, I may as well give it a go. In the exam room my friend says that perhaps I should just go to the hospital instead. I soldier on. I finish with over an hour to spare, having written under two pages of words for two whole essays. I go home, cry, and sleep. What a waste of time.

Fast forward three weeks. By all rights, I should have failed this exam. But somehow I managed to pass. Many people will be celebrating their good grades but my 49% ranks as one of the best marks I’ve ever received. Screw you, Crohn’s disease. I. Will. Not. Fail.

Fast forward a year. University is over. My friends have left, and I’m on my own. To pass

my time I write a story about what it is like to have Crohn’s disease, and it is nearing its end. Though this piece is a timeline of my illnesses I actually conclude it by realising that this section of my life, though defining, does not define me. I have been called “tubey”, “sick boy”, “skiver” and all manner of names and missed a fair chunk of my education. I struggle with energy levels on a day-to-day basis and I can’t play sport as much as I’d like. But I am funny. I am kind. I am intelligent. I’m a good singer. I’m generous. I’m loved. I’m not too hard on the eyes (at least that’s what people say). I am not dramatic. I don’t get scared easily. I am honest and thoughtful. All of these things, self-aggrandized or not, define me far more than a scarred liver or a malfunctioning bowel ever will.

I live with this every day. And it really isn’t a big deal. It’s just Crohn’s disease, you know? And that makes me fantastically lucky - to only have Crohn’s Disease is a blessing,

all things considered. By recounting some of the negative aspects of my illness all I have done is emphasised the fact that my life has been full of laughter, friendship and success. Take a look at all those gaps I fast-forwarded through: my first kiss, my first girlfriend, passing my driving test, getting into university, late-night adventures and long summer holidays. Memories of all kinds were put to one side to give an honest account of what it’s like to be “ill”. But that never was and never will be all I am. I am greater than the sum of my parts, even if some of those parts sometimes go on strike. So don’t feel sorry for me, and don’t you dare feel sorry for yourself. There’s still plenty to look forward to: a career, love, a family and many unexpected adventures, so let’s all have a bloody good laugh. It’s only IBD, after all.

For information for Students at Uni with IBD click here.
For information for Universities click here.

Guest Writer - Lindsay

When I first started university, I had three classes on my timetable – film studies, French and beginners Spanish. I reckon I missed at least a third of my lectures and tutorials.

This wasn’t standard freshers’ flu/hungover/skipped class to watch Jeremy Kyle/couldn’t be bothered getting out of bed before midday behaviour. The summer before I started my studies, I was diagnosed with Crohn’s disease. I spent a little over a week in hospital, being poked and prodded in ways I didn’t want to think about, having gallons of drugs pumped into my system and protein shakes passed my way in an attempt to get my weight back up before the C-word came into the conversation – you, Lindsay, have got Crohn’s disease.

I had lots of grizzly inflammation in the join between my large and small bowel. It was almost blocked. I was sent on my way with a load of medication, some leaflets and promise of getting signed up to the local IBD clinic. I was in the system.

I’d been accepted to a prestigious Scottish university earlier in the year, and when I lay in my hospital bed, I thought, ‘Am I going to be able to make it? Am I going to get to go to uni?’ But I was assured that yes, I could do it. And I wanted to. So I did.

Before I started class, I made sure I had a meeting with my advisor, told them all about my condition, that I might have to take time off, that I might have to leave the room to go to the loo at short notice – I probably went into more detail than she needed to know. I was told that this was all fine, it would go on my file.

Classes started and, well, it didn’t entirely go to plan. There were mornings that I would get out of bed, feel really unwell and have a panic attack at the thought of trying to face the real world. I’d miss classes. Miss film screenings. Spent a fortune buying the DVDs to try and catch up. Sent many emails of apology, explaining my situation. And every now and then, I made it into class, where I was falling further and further behind.

Lindsay at Uni

There was one class which was particularly difficult. I emailed the tutor after missing one class to explain that, sorry, I have Crohn’s, I wasn’t feeling great and asked what had happened that day, what I needed to do to catch up. She replied to say, “I noticed that you have been off a lot. You will have to ask your classmates as I cannot help every student that cannot make it to class.”

Really helpful when I’d missed lots of classes and hadn’t actually managed to speak to any of my classmates properly.

In a French tutorial, I had to get up and leave mid-grammar lesson. I could feel my stomach knotting, I wanted to curl up in a ball and cry. The tutor looked at me like I’d lost my mind as I mumbled, “I’m sorry, I have a... I feel...” and left. Nobody bothered to come after me.

Sitting on the train into town with my head in my hands, clutching my stomach, willing the painkillers to kick in. People looking at the student thinking, ‘Probably hungover!’

Because that’s what people think. They don’t get it. Crohn’s and Colitis UK’s recent survey of young people showed that 50% of survey respondents who were still at school believe that their teachers don’t know enough about IBD. And I can completely believe that. IBD isn’t straightforward. It’s different for everyone. But one thing is true – it can have a huge impact on your life. And there will be the people who won’t bother to find out more about this.

But it’s so, so important that they do – especially education professionals. They need to find out what IBD means for their student and what they can do to help make life easier for them in class. For some people, stress makes symptoms worse, so on the run up to exams or essay deadlines, it might be wise to offer extra time or a special room to sit the paper. Getting through school, college or uni is hard enough as it is. Throw in the complication of a bowel problem when you’re in your teens, and life just got even harder.

Which is why I think that the charity’s new appeal, encouraging education establishments to get clued up on IBD, is massively important. Schools make adaptations and adjustments for kids with a range of impairments, so why not bowel disease? Understanding and offering support alone takes a huge weight of anyone’s shoulders.

Head over to the Crohn’s and Colitis UK site and download the information packs for schools. Pop into your local primary, secondary, college or uni and hand it in – it’s so important that we spread the word, not just for those of us who are struggling to meet deadlines and panicking about exams mid-flare. But for the next generation of young people who’ll encounter this unpleasant condition in the middle of their studies. If their teachers already know about IBD? Life is instantly much easier.

So get downloading, printing and spreading the word – it might be a small gesture to you, but for someone else? It’s going to be huge.

Guide for Schools and Teachers

University Guide - for Students

Guide for Universities and Colleges

University and IBD Part 1 - Who to Tell About IBD

Planning to go to university or college can be an exciting but daunting time for anyone. If you have Inflammatory Bowel Disease (IBD) – Crohn’s Disease or Ulcerative Colitis (UC) – you are likely to face even greater challenges and have more concerns and questions. 

This series of articles sets out to answer some of those questions, and to give you some tips and suggestions based on professional advice and also on the experiences of other students with IBD.

Do I have to tell them that I have IBD?
You do not have to tell anyone about your IBD if you do not wish to. Many universities and colleges encourage students who feel they may need extra support because of a disability to declare or disclose this at an early stage, for example on their application form. But, there is no obligation to do this. You may feel you would prefer to wait until you have accepted your place at the university or college before you tell them about your IBD. This should not make any difference to the type or level of support you are then offered. 

You may even decide not to mention your IBD at all. However, if you do not tell your university or college about your condition you may miss out on some of the support that could be available. Anything you tell the Disability Services team will be kept in confidence, and no information will be passed on without your agreement. If you are undecided whether to disclose your IBD you could have an informal talk with a Disability Adviser first, and discuss your options without committing yourself.


If you do decide to ask for support because of your IBD you will probably be asked to go for an assessment interview and will be expected to provide a supporting letter from your GP or consultant. Your Disability Adviser may then work with you to draw up an agreement (which may be called something like a Study Needs Agreement or a Personal Learning Plan) which outlines the support you have requested. This will also cover what information you have agreed may be passed to other staff or departments.

Some former students have found it helpful to talk to or visit Student Disability Services even before they submit their application. This allows them to take into account the sort of support they might be offered when deciding where to apply.


Should I tell my department?

If you have a Study Needs Agreement or something similar, this will cover who may be given information about your needs, including academic staff. However, you may still find it helpful to talk to your personal tutor if you have one, or to your head of department, about your IBD and the impact this might have. Many students with IBD recommend doing this as soon as possible. You may feel embarrassed about this, but once you have established an understanding with the appropriate people, you will probably feel less stressed about the idea of needing support. Also, the more honest you can be, the more help you stand to gain. 

It might help to give your department a copy of our leaflet Students with IBD: a guide for universities and colleges, which includes basic information on IBD and some suggested ideas for support.

Students with IBD have found the following points useful to raise:

• Toilet needs during lectures and seminars. You might like to sit close to the exit in order to leave the room quickly. If locker facilities exist, you could request the use of a locker for spare clothes and washing kit in case of accidents, and/or permission to use staff toilets if these are available.
• Lateness. You may arrive late because of urgent toilet needs or because tiredness and/or painful joints have made it difficult walk quickly.
• Taking medication. You may need to take medication during lectures, seminars or classes.
• Eating between breaks You may need to eat during lectures/seminars if you have to eat small amounts regularly.
• Feeling unwell. There may be times when you are feeling exhausted and in pain and need to take a brief rest, or even return to your accommodation.
• Missing sessions. At times, you may need to miss classes because of medical and hospital appointments, hospital admissions or being ill at home.
• Field trips. Given the unpredictability of IBD it may be difficult for you to commit to going on a trip much in advance of the day itself. You may also be concerned about toilet facilities on the journey and at the field trip accommodation. You could ask for the facilities to be checked with your needs in mind, and also whether and for how long you might be able to delay your decision before committing yourself financially.
• Privacy – you may want your condition kept private or you may prefer others to know about your illness.

What about telling other students?

Meeting new people usually means wondering if and when to tell them about your IBD - and everyone has their own way of dealing with this. Some students with IBD find it easier not to mention it at first until they get to know people better.

Others feel they want to be open from the beginning and if people can’t deal with the truth, then they aren’t likely to become good friends anyway. If you do feel unwell during the first few weeks you could just say you have a ‘tummy bug’, or if you want to avoid concerns about infection, just limit your explanation to the fact that you have a gut condition which means you have to rush to the loo frequently. You can then give more details if and when you are ready.


Whichever approach you take, as you make friends you will get to know who is most likely to be understanding and who you can trust to talk to about your IBD. Many students have found that it does help to tell a few friends at least, as having a supportive network of people who understand your condition and can offer support when it is really needed can make all the difference.

Having IBD, you may be more mindful about what you eat and drink. This may make you feel different, particularly if you avoid alcohol during ‘freshers’ week when there tend to be a lot of activities around the bar. But remember that many people don’t drink alcohol, for a variety of reasons, and this is usually respected. You could think ahead about how you would respond to any comments on your staying off alcohol.

If you are sharing accommodation you may choose to cook your own food. Having good nutrition is particularly important with IBD to help the body strengthen its resistance to illness. (For further information on diet see our booklet, Food and IBD).

It can be tempting to throw yourself into college life, but it may help not to go beyond your limits just to fit in. Pushing your body too far may make you feel ill for longer, so that you end up missing out more in the long run than if you paced yourself in the beginning. Feeling ill is also likely to affect your ability to do coursework.


When you do have good days, try to do as much as you reasonably can in terms of being sociable and doing your work, as you don’t know when a bad day will come along, which could restrict what you are able to do. Just try to take each day as it comes and see how you feel.

In Part 2 - Support available to you