Students with IBD: a guide for Universities & Colleges

It is very likely that several students in your university or college will suffer from Ulcerative Colitis or Crohn’s Disease, known collectively as Inflammatory Bowel Disease or IBD. Crohn's and Colitis affect at least one in 250 people in the UK population, and it is quite common for these illnesses to start in late teens and early adulthood.

Crohn's and Colitis can make student life more demanding, and some students with Crohn's or Colitis may need additional support and encouragement to help them achieve their full potential. This information sheet is intended to help those involved with supporting students to have a better understanding of some of the possible effects of Crohn's and Colitis. It also looks at the areas in which help may be most beneficial. 

Ulcerative Colitis is inflammation of the colon and rectum (large bowel), causing ulceration and bleeding in the lining of the colon.

Crohn's Disease is inflammation of the digestive tract, which can occur anywhere between the mouth and the anus, but most commonly affects the small bowel or the colon. Crohn’s can damage all the layers of the lining and wall of the bowel.

These are lifelong illnesses which may have periods of remission when there are few symptoms, but also periods of relapse when the disease is active and the symptoms are much harder to cope with. There is no cure at present.

• They are not the same as Irritable Bowel Syndrome (IBS). This is a different condition that requires different treatment.
• They are not infectious.

Although there has been much research, the cause of Crohn's and Colitis is still uncertain. However, over the past few years, there have been major advances, particularly in genetics.

Researchers now believe that Crohn's and Colitis is caused by a complex interaction of factors: the genes a person has inherited and an abnormal reaction of the immune system to certain bacteria in the intestines, triggered by something in the environment.

Viruses, bacteria, the use of antibiotics, diet and stress have all been suggested as environmental triggers, but there is no definite evidence that any one of these is the cause of Crohn's and Colitis.

The common symptoms are:
• urgent need to go to the toilet
• diarrhoea (sometimes bloody)
• severe abdominal pain
• extreme tiredness
• nausea
• lack of appetite and weight loss

Some people with Crohn's or Colitis also suffer from pains in their joints, eye problems, severe mouth ulcers, and skin rashes.

Delays in development
Inflammation in the gut can affect both appetite and the absorption of nutrients, causing impaired growth. A young person with Crohn's or Colitis may look and feel different from their peers - and may find themselves excluded from social activities and treated inappropriately for their age.

Effects of treatment
Crohn's and Colitis generally requires life-long treatment, which can have unpleasant side effects. Treatment often includes corticosteroids (steroids) to reduce inflammation, and/or drugs that suppress the immune system. (These steroids are not the anabolic steroids sometimes used by athletes.)

Unwanted side-effects of steroids, especially at high initial doses, can include:
• significant weight gain
• roundness of the face
• acne
• mood swings, from euphoria to depression

Other unwanted side effects from drugs used to treat Crohn's or Colitis may include:
• headaches
• nausea
• flu-like symptoms
• increased susceptibility to infection

While most Crohn's and Colitis drugs are taken in tablet form, some treatments involve weekly injections or visits to hospital or clinic for intravenous (IV) drug treatment.

Some young people may be on dietary treatment. This takes the form of a liquid diet consisting of all the nutrients needed. Usually, nothing other than the diet and water are allowed for weeks or months at a time. If they have difficulty drinking the feed, they may take it via a tube inserted through the nose down into the stomach. Once in place the tube can remain for many weeks. The high concentration of nutrients in the feed can sometimes cause nausea and headaches.

Hospitalisation
There may be times when a student experiencing a severe flare-up of Crohn's or Colitis needs treatment in hospital, sometimes lasting several weeks. In very severe cases, badly affected parts of the bowel may need to be removed by surgery. This sometimes involves an ileostomy (surgery to create an opening of the small bowel onto the surface of the abdomen) and wearing a stoma bag to collect waste (faeces). Stomas may be temporary but can be permanent.

Psychological effects
Young people with Crohn's or Colitis are often at increased risk of depression and anxiety because of the unpredictability of their condition, the feelings of loss of control their symptoms can cause, and the adverse effects of Crohn's or Colitis drugs. When chronic pain and exhaustion are ongoing, the student may be unable to concentrate, may feel depressed, and perhaps, in extreme cases, have suicidal thoughts. Although stress is not a cause of Crohn's or Colitis, a number of studies have shown that stress is often associated with relapses of the condition. Exams can be particularly stressful and have been linked with flare-ups of Crohn's or Colitis.

It can be hard for young adults with Crohn's or Colitis to have to cope with the embarrassment of their disease. They may dread having to rush for the toilet, having an ‘accident’, smells and ridicule. They may feel distressed about being much smaller, thinner or less developed than their friends. Or, if they are taking high dose steroids for their treatment, they may become depressed about putting on weight and becoming fatter and round-faced. Changes in their perception of body image can lead to low self-esteem.

Students with Crohn's or Colitis may also feel isolated and out of step with their peers due to missing lectures or being unable to join in activities. It can be particularly difficult to cope with the unpredictability of Crohn's or Colitis, which might mean feeling perfectly well one day, and utterly drained and exhausted the next. Crohn's and Colitis are also an unseen conditions, which can again be hard to manage. Someone with Colitis or Crohn’s may not look that unwell to others, especially if they are taking steroids, when they are, in fact, feeling awful.

By being aware of the difficulties and needs of students with Crohn's or Colitis, and offering support where needed, staff at universities and colleges can make a real difference to the lives of students with these conditions.

Some of the main areas where support might be required are listed below.

Respect and understanding
Each individual is unique, and students with Crohn's or Colitis are likely to have differing views about how they wish to deal with their condition while at university or college. Some students may wish to keep their Crohn's or Colitis entirely private and avoid disclosing their illness, whereas others may want to be completely open. It is very important that whatever their view, the student feels supported and knows that his or her position will be respected.

Access to Disability Services
Students with Crohn's or Colitis may or may not consider that they have a disability.

However, if they have Colitis or Crohn’s, they may have needs which mean they might benefit from the support offered by Student Disability Services. For example, Disability Advisers can often:
• help with suitable accommodation
• advise students about applying for Disabled Students’ Allowance
• at some universities and colleges, draw up a general agreement outlining the student’s extra support needs
• agree with the student what information about their condition may be shared
with other university staff, and what will be kept completely confidential
• liaise with the student’s department on their behalf

If it seems the student may be unaware of this, it may be helpful to flag up the kind of help and assistance that Disability Services can offer.

Accommodation
Many students with Crohn's or Colitis consider en suite accommodation a necessity. If this is not available then it helps if the student can have a room very close to a toilet and bathroom/shower. However, this is less satisfactory as without en suite facilities there can still be the possibility of embarrassing accidents.

Other accommodation needs may include:
• living on or close to campus to help minimise travel needs
• convenient laundry facilities
• catering on site, or, alternatively,
• cooking facilities, which may make it easier for some students with IBD to meet their dietary requirements
• access to a fridge for medications

Departmental support
Many students with Crohn's or Colitis find it helpful to have someone within their academic department whom they can talk to about their IBD and some of the difficulties it might cause. This can apply even if the student has a Study Needs Agreement or something similar. If no personal tutor is available, please consider appointing another member of staff as a contact for the student.

Common Crohn's or Colitis related support needs

Students with Crohn's or Colitis often have particular needs or difficulties such as the following:

• Continence or urgency problems. Many people with Crohn's or Colitis worry that a delay in getting to the toilet might result in an ‘accident’, so often prefer to sit close to the exit or at the end of a row in a teaching room or lecture theatre. Students may also appreciate the use of a locker for spare clothes and washing kit, and/or permission to use staff toilets if these are available.
• Lateness. An urgent need for the toilet (particularly after food) may also lead to late arrival at seminars or lectures. Or, a student may arrive late because general fatigue or joint pains have made walking quickly difficult.
• Medication and extra snack breaks. Some students with Crohn's or Colitis may need to take prescribed drugs at certain times of day. This may, on occasion, mean taking medication during lectures or seminars. Some will also need to eat at regular intervals, so may need extra meal breaks.
• Feeling unwell. Frequent pain and exhaustion affect concentration, so a student with these symptoms may need to return to their accommodation during the day. At other times they may be able to take a brief period of rest or a prescribed painkiller, and carry on.
• Missing sessions. A student may miss teaching sessions because of medical and hospital appointments, hospital admissions or being ill at home. If they are resting at home there may be times when they are still able to cope with most academic work. At other times, for instance during a relapse or when in hospital, they may not be able to manage as much.
• Field trips. Given the unpredictability of Crohn's or Colitis it can be difficult for students with this condition to commit to going on a trip much in advance of the day itself. They may also be concerned about toilet facilities on the journey and at the field trip accommodation.

Being aware of these sorts of needs, if a student with Crohn's or Colitis decides to disclose their condition, will enable members of academic staff to respond in a positive manner, for example:

• allowing students to leave and rejoin class sessions without comment
• not commenting on or penalising late arrival at lectures or seminars
• giving permission for the student to take a short break to take medication or to eat in class when necessary
• ensuring that the student is able to access assignments and lecture notes electronically if they are, for example, well enough to work from home but not to attend on campus lectures or seminars
• appreciating that Crohn's or Colitis may mean that the student has to miss sessions and understanding that they may not always be able to get a doctor’s appointment as evidence of their absence
• being flexible with arrangements for them to catch up, for example, practical or lab classes
• ensuring that suitable arrangements have been made if a student is expected to go on a field trip.

Coursework extensions
At times when a student’s Crohn's or Colitis is causing particular trouble, they may be too tired to complete coursework on time. In such circumstances an extended deadline can be very useful. Not all universities and colleges allow this and the policy may be to suggest that students submit as much as they can. If they then feel their Crohn's or Colitis has affected their ability to meet a deadline, they may be able to request mitigating or extenuating circumstances. This might mean that if their request is successful, the penalty for late submission is waived or they are given the opportunity to do the coursework again. It can be helpful if staff are aware of the policies in place and encourage students to feel they can discuss possible difficulties with deadlines at an early stage.

Exams
The stress of exams has been linked to flare-ups of Crohn's or Colitis. Studying for exams may also be very difficult and the student may need extra guidance and emotional support.

The fact that exams have to take place at fixed times puts additional pressure on students with a fluctuating and unpredictable illness like IBD. They may also have particular problems with morning exams if their bowels are most active then, as is often the case.

You can be mindful of the student’s needs by, for example, planning seating arrangements so they can sit close to the door nearest the toilets and by organising in advance who will escort them to the toilets if they need to go urgently. Students with Crohn's or Colitis may also need extra time to complete papers if they have had to take several breaks or if they suffer from severe fatigue. Providing a separate exam room for such students can be a good way of meeting these needs without disrupting other students, provided the student with Crohn's or Colitis is happy with this.

Occasionally a student with Crohn's or Colitis may be completely unable to sit an exam. It is helpful if the university or college can then offer the opportunity to defer the exam, if possible with no cap on grades.

Extra-curricular activities
Some students with Crohn's or Colitis may feel they are less able than other students to join in clubs and activities, however interested they may be, because they are unsure about committing themselves. Any special encouragement, consideration or adjustment that can be given will help their full involvement in college/university life.

Support for HE students may be available through Disabled Students’ Allowance (DSA) funding. For more information contact the university or college Student Disability Services.

If students are worried about getting into work and whether to speak to an employer about their condition, it is worth referring the student to the university or college Careers Service. A Careers Adviser will be able to talk through the different options with the student. We produce two information sheets on employment and Crohn's or Colitis – one for employees, and one for employers. See our website below for further details.

Disability Rights UK is another useful source of information about disability related support.

Young people with Crohn's or Colitis may find it useful to share their experience and get support from others by joining a web forum, such as the Crohn’s & Colitis UK Forum.

We offer more than 50 publications on many aspects of Crohn’s Disease, Ulcerative Colitis and other forms of Inflammatory Bowel Disease. You may be interested in our comprehensive booklets on each disease, as well as the following publications:

Living With Crohn's or Colitis
Fatigue
Taking Medicines
Managing Bowel Incontinence
Living With a Stoma

Health professionals can order some publications in bulk by using our online ordering system. If you would like a printed copy of a booklet or information sheet, please contact our helpline.

Our helpline is a confidential service providing information and support to anyone affected by Crohn's or Colitis. Our team can:
• help you understand more about Crohn's or Colitis, diagnosis and treatment options
• provide information to help you to live well with your condition
• help you understand and access disability benefits
• be there to listen if you need someone to talk to
• put you in touch with a trained support volunteer who has a personal experience of Crohn's or Colitis

Call us on 0300 222 5700 
Email helpline@crohnsandcolitis.org.uk
Use our LiveChat 

Crohn’s & Colitis UK Forum
This closed-group community on Facebook is for everyone affected by Crohn's or Colitis. You can share your experiences and receive support from others.

Crohn’s & Colitis UK Patient Panels
IBD Patient Panels, which are supported by Crohn’s & Colitis UK, are groups of people with Crohn's or Colitis who use their perspective as a patient to work with their IBD healthcare team to help improve their hospital services. For more information on patient panels, please read our information leaflet or contact our Patient Engagement Team.

Crohn’s & Colitis UK Local Networks
Our Local Networks of volunteers across the UK organise events and provide opportunities to get to know other people in an informal setting, as well as to get involved with educational, awareness-raising and fundraising activities. You may find just being with other people and realising that you are not alone can be reassuring. Families and relatives may also find it useful to meet other people with Crohn's or Colitis. All events are open to members of Crohn’s & Colitis UK

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Last reviewed: November 2016