Showing posts with label University and IBD support. Show all posts
Showing posts with label University and IBD support. Show all posts

Thursday, 3 October 2013

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 assignmentsrevision, 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.




Tuesday, 17 September 2013

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 3rd 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. 




Sunday, 21 April 2013

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





Tuesday, 16 April 2013

University and IBD Part 2 - Financial and Medical Support


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.



What general help and support can universities offer?

One way to find out what help and support is available is to get in touch with the university or college Student Disability Services. Under the Equality Act (2010), which replaced the Disability Discrimination Act, universities and colleges must not discriminate against applicants or students because of a disability, and have a duty to make ‘reasonable adjustments’ so that students with a disability are not disadvantaged.

You may not see yourself as having a disability, but having IBD may mean you have needs other students do not, and that you might benefit from some of the support offered in this way. All Higher Education (HE) institutions should have a Student Disability Services department or team, (although the exact name may be slightly different). Details of how to contact this will be on the university or college website. The site may also give quite detailed information about the types of provision the university or college can offer.

For a student with a chronic medical condition, such as IBD, reasonable adjustments might include, for example, arrangements for extra time in exams or to meet coursework deadlines when fatigue is a problem, or perhaps arrangements to allow you to eat or take medication during class sessions Disability Services can also help you to apply for DSA (Disabled Students’ Allowance) funding (see below) if you wish to apply for this, and can liaise with your department on your behalf.


Is there extra financial help?

You may be able to apply for the DSA (Disabled Students’ Allowance) to help you meet extra costs or expenses that arise because of your condition, such as extra costs for en-suite accommodation. You might also get, for example, help with buying good quality computing equipment so you can work at home as much as possible, a digital recorder to record lectures in case you feel unwell, or help with travel costs, as shown in the quotes below.

You can apply for a DSA even before you have accepted your place at college or university. For more information see the direct.gov website: www.direct.gov.uk. The university or college Disability Adviser will also be able to advise you about DSAs. SKILL (the National Bureau for Disabled Students) at www.skill.org.uk can be another helpful source of information about disability related support.

You could ask your university or college about help through their Access to Learning fund. Again, see www.direct.gov for more details. These grants are generally means tested, but those with a disability are given priority.

At Crohn's and Colitis UK we offer small Educational and Vocational Grants for young people with IBD between the agesof 15 and 25. Details of these are on the Personal Grants page of our website. We can also help with information about state benefits, including Disability Living Allowance (DLA).


My uni really helped push my
assessment through, and gave me loads
of support. The assessment was fine, it
took about an hour, and I just had a chat
with the assessor. I received payment for
my laptop, keyboard, mouse, printer and
scanner, … a £100 printing and copying
allowance, and a £158 internet
allowance.

My DSA supplied me with a laptop etc,
but they also gave me a travel allowance
of £100 to get a taxi if I feel unwell and
need to get home quickly.
(Students with IBD who got DSA)



What about getting medical help?

If you’re studying away from home you will probably have to register with the University Health Service or a local GP, which will mean a change of doctor. You can search for a new GP on the NHS website at www.nhs.uk or by phoning NHS Direct on 0845 4647. The University Health service may also have a list of local GPs. You should still be able to see your old GP while back home on vacation. 

It may be helpful to discuss your move with your home hospital IBD team before you leave for university – and to check with them who might be a good contact should you need access to specialist services once away from home. It could also be useful to sort out with them, or with your home GP, a plan of action to follow if you do have a flare up. Also, ensure you have a good supply of your medication, especially when you first leave home. Once you get to university or college it can be a good idea to register as soon as possible, so that you can get a new prescription before you start to run out.

Your new doctor will be sent your existing medical records so they should be aware of your condition. However, you may still feel it is worth making an appointment, even while you are well, to make sure they know what having IBD means for you. Building a good relationship with your new doctor can make it easier to get you the support you need if you do have a flare up.