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

Guest Writer - Ben

Ben is 28 and was diagnosed with Crohn's in 2006. He has a blog called MeandMyCrohns. He's pictured here in a dinosaur onesie (everyone should have one of these!) at the recent Rutland Walk, raising money for Crohn's and Colitis UK. This photo was taken shortly before he completed a 25 mile bike ride on a tandem with his wife (also in a onesie).

Real friends understand that you may have to drop plans/leave pub/activities

A big part of being young is socialising, yet this can be one of the more scary sides to living with an Inflammatory Bowel Disease (IBD: Crohn's Disease and Ulcerative Colitis). You can work yourself up into a state and cause yourself excessive amounts of stress. You find yourself over thinking situations that your friends wouldn’t even begin to consider.

Pub toilets (I can only speak for the men’s) can be terrible places if you are unprepared. Certain drinks can cause a tummy upset. Meeting friends in the middle of a field for some kind of sporting get together can be a daunting proposition.

You worry that the toilets may be too far away, or what happens if you have an “accident”? What will your friends think if you cannot join in with the drinking games because unbeknown to them you have started a new medication that you shouldn’t be mixing with alcohol? Or will they be mad if you are late due to a last minute dash to the loo that turned into an hour long epic bowel battle?

All of these thoughts can cause your head to whirl and you may end up cancelling the event or your participation in the activity.

This is an upsetting position to find yourself in; I know because I, like every other sufferer, has at one time or another been there. You become hard on yourself, you feel like a letdown.

I am massively stubborn and refuse to let my Crohn’s Disease rule my life. It has and always will influence my choices but ultimately I will not allow it to dictate what I can and can’t do. This approach to a life with IBD can sometimes catch you out as Mr Crohn’s will try and assert some authority.

You may find yourself in a pub attempting to hover over the most disgusting toilet you have ever seen whilst simultaneously trying to keep your jeans from touching the gross, urine sodden floor or maybe when you believe you are in a safe position to be able to pass wind only to find it wasn’t wind and you are now in a field with a group of mates and something terrible lurking in your underpants.

It is these situations that either make you or break you and I can honestly say you need to be strong. These incidents are only temporary but they teach you to be prepared. You take wipes with you on a night out to ensure the toilet can be cleaned or you carry a spare pair of pants in your bag just in case. Baby wipes are good as they can help clean you up and make you smell nice as can miniature deodorant cans – the pocket sized ones.

You can do all this in silence but it will eventually get you down and take its toll on your mental well being. The best way to cope with Crohn’s or Colitis is to be strong and confide in your closet friends and family. They may not fully understand what you are going through but they will be even more in the dark if you do not share. 

Friends will understand that certain activities are just not suitable for you or that you may need extra time or help. Friends will be there for you in your time of need. They may offer to help you get to a toilet or call you a cab. Friends and family just want to help. They may not know the correct thing to say or do but they are well intended. So help them out. Point them in the correct direction for helping you. Like the Crohn's and Colitis UK information sheet - Understanding Crohn's and Colitis

If you do not confide in your friends, they will never be able to help you. This doesn’t mean they will be perfect. Even the bestest of friends will forget your needs. This is not because they don’t care; it is simply because they see you day to day looking fine. Crohn’s Disease and Colitis present few symptoms on the outside. It’s not like you are missing an arm, or you have lost all of your hair, so there are minimal tell tale signs of being poorly. This can be frustrating when people assume you are well just because you are not moaning about. They forget that the Disease is a battle each and every day it is just that some days are easier than others, so not every day warrants a moan. We save our moaning for the really bad days.

I guess what I’m saying is; we are suffering a disease that is hidden from public view. Nobody feels comfortable talking about bottoms, bums, farts and poops so we need to step up to the table. We are the ones who need to educate those around us. Do not suffer in silence; our friends and family care about us. Plus, with a fantastic network of support around us, we are very lucky.

Crohn’s and Colitis UK offer so much support and information to those affected by IBD. Smilies helps take child sufferers and their parents away from their troubles for a few hours, Me and IBD offers support to teenagers and young adults and Crohn’s and Colitis UK as a whole covers all ages.

We are not alone in this struggle. It may feel like it at times, but be open, take the information available and pass it on.

Ben

www.meandmycrohns.co.uk