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.

Great Blog Post with Info From Me & IBD

We were delighted to read Jessica's blog post about the information we gleaned from the Me and IBD

Young People survey earlier this year.

You can read what Jessica had to say about when she told her school and later in life, her university about her IBD. So if you want to read about someone else went about this important step in life, click here.

This link will take you to another blog, so be sure to come back to us again soon. :-)

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 3 - Help with Deadlines and Stress

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.


Can I get help to cope with exams?

The intense pressure of exams affects most people, and having IBD you may find the stress triggers a flare-up. Try to pace yourself and find ways that help you to relax, such as taking regular exercise, deep breathing exercises, or yoga. If you have a Study Needs Agreement or you have talked to your tutor about your condition, and are able to provide a medical certificate from your doctor, you may be able to make advance arrangements for exams. These might include, for example, sitting close to the exit nearest the toilets, having someone ready to accompany you if necessary, and being able to request extra time if needed.

In some circumstances, if you are completely unable to sit an exam, you may be able to defer sitting it until you are better, without a cap on your grade.




What about course work deadlines?

One of your main concerns is likely to be about getting work in on time, especially when you are having a flare-up or if you have to go into hospital. Being able to request a coursework extension should you have a flare up is likely to be in your Study Needs Agreement if you have one.

You may also be given an automatic extension if you are in hospital. If you do find yourself having to negotiate a coursework extension, try to be realistic about how much time you need to recover and how much work you can do when you’re still not feeling completely well.


What other support is there?

Sometimes the pressure of exams, coursework, being away from home, feeling isolated when ill – any or all of these – may become too much to deal with on your own, even if you have the support of friends and family. If you do find you are feeling anxious, stressed, or depressed, you can turn to the counselling service at your university or college in complete confidence. You may find that as well as face to face counselling services, there are also phone-based helplines, accessible from the privacy of your room.



Counselling can help with all kinds of issues, health related or more general, such as dealing with dilemmas or making difficult decisions, relationship difficulties, sexual problems, or identity issues.

At Crohn's and Colitis UK we have a web–based discussion board for people aged 16-29 living with IBD. This can be found at www.ibdandme.nacc.org.uk. There are also Crohn’s and Colitis UK groups around the UK, some with subgroups for young people, and you might find it helpful to contact the group nearest your university or college. Check our website or contact our office for locations.

We also operate a supportive listening service, Crohn’s and Colitis Support, and a general Information Line. (0845 130 2233).


And finally…

Take time to plan, talk to the relevant people and develop a supportive network – don’t wait until you are feeling unwell and having a flare-up before you seek help. There may be setbacks along the way, such as having to take time out. If this means taking an extra year, it might seem like a lot of time, but try to keep in mind that, in the long run, it will probably not make a lot of difference.

“One thing I would say is don’t let

having IBD stop you from achieving

anything. I refuse to let my disease

get the better of me.”

(Student with IBD)

For all the information contained in these articles, and more useful contact details, see our full information sheets Students with IBD: A Guide for Students