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. 

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