Thursday 31 October 2013
See Pictures from the House of Lords Event
If you'd like to see some pictures from the event at the House of Lords yesterday, launching the revised IBD Standards document, click here to visit the main Crohn's and Colitis UK website where there is more information about the event, who was there, what was said and why it's important for you!
IBD Standards 2013 Update Launch
Revised Standards setting out the requirements of good care for people with IBD, have been launched by Crohn’s and Colitis UK and a range of other professional organisations.
The Standards for the Healthcare of People who have Inflammatory Bowel Disease (IBD Standards) were developed by the charity, the British Society of Gastroenterology, Primary Care Society of Gastroenterology, the Royal College of Nursing Gastrointestinal Nursing Forum and other leading organisations.
The IBD Standards aim to inform NHS Managers and commissioning organisations of the six essential components of a quality IBD service – high quality care, locally delivered care, a patient-centred service, patient education and support, IT and Audit and evidence- based practice and research.
In 2009, Crohn’s and Colitis UK and other organisations launched the original version of the UK IBD Standards. Since then, the UK IBD Audit has demonstrated a significant improvement in the quality of care for people with IBD. This includes improved access to IBD nurse specialists, more patient involvement in the development of IBD services and a rise in the number of services with a database of their patients.
The launch of the revised document was marked by a reception in the House of Lords, bringing together Parliamentarians, clinicians and people with the conditions, to reflect on the success of the original 2009 IBD Standards, the need for further improvement and to look ahead to a new Quality Standard from NICE in 2014.
More information
Monday 21 October 2013
Guest Writer - Rosina
You Were More Likely To Win The Lottery
.JPG)
The title should give you relief in that what happened to me, it is very unlikely to happen this way. ...And if it does, you will survive!
March 2012: 1 KFC later (this was before I knew anything was wrong, don't tell me off!) I had incredible pains in my stomach/gut and had no idea what on earth had happened. I had had bloating, IBS and general nausea regularly for the last 2 years but I just thought that was just going to be my life and all was fine.
Over the next few months the pain would come and go, sometimes I couldn't drink anything, even water let alone eat much without it feeling awful. The worst was the middle of the night, I would wake up and be in incredible pain, screaming out for my parents to keep me company and make it go away, obviously they couldn't, but I was scared and I needed the company. I was batted back and forth between home, the doctor and the dietician and no diagnosis was made. So I decided to go for a private consultation.
July 2012: The private consultation was not what I was expecting, I thought nothing much was wrong with me, but this was when the dreaded C word reared it head for the first time, 'Worst case scenario, you could have Crohn's. "Worst case," I thought, "So I won't have that will I?!"
August 2012: A few weeks later and I was admitted to hospital with more pain and severe dehydration, left in acute assessment for a week, I eventually found myself in woman's health (not the magazine unfortunately). The nurses knew nothing of digestive issues and the doctors were an endangered species, but I had privately booked an MRI so there was hope! Segregated to my own room, as I was an infection risk, I felt a bit better and thought maybe I was OK.
Then the MRI came around and the dreaded 2 jugs of dye. There were tears, there were tantrums, the time it should have taken to drink said dye doubled then tripled, after lots of blackcurrant cordial and 1 jug of dye, they decided to give it a punt and somehow I managed not to throw up all over the shiny MRI machine.
The results came back the following day; 5 doctors in my tiny side room and me sat intimidated on my own. 'You have Crohn's Disease'. I kept it together until they left, at which point I burst into tears at the fact I was going to be ill forever. One thought that kept coming back to me at various points since I was diagnosed was that I was never going to sit down the pub with my friends for a quiet drink and a laugh ever again (this wasn't true though!).
The nurses shut my door and left me to it, I rang my boyfriend and he tried to console me but it wasn't going to work. A few days later I was feeling brighter, they were putting me on medication that should stop the pain and heal the inflammation. The fact these tablets were steroids didn't actually seem to bother me strangely enough, I was happy that there was some sort of solution.
A month or so went by and I was put in to have a colonoscopy, I wasn't happy about it, but I was being brave (for me) and looking forward to eating after the dreaded prep and 24 hour starvation. Unfortunately, it didn't go as planned and we were unable to go through the whole procedure because of the pain. I left and thought nothing of it, proceeded to eat my weight in food the following day and not worry when I didn't go to the toilet for a few days because I'd just emptied my whole system right? Wrong! So so wrong.
September 2012: 3 days later I woke up with usual Crohn's pain, I thought nothing of it, swiftly went to the toilet expecting the norm, however, I ended up in absolute agony. I am a bit of a worrier, so thankfully I had taken my phone to the toilet with me and as I began to feel faint and collapse on the floor in agony, I rang my parents to come and save me. We weren't sure what to do, whether I should just go back to bed? I mean it had been pretty damn painful before right? Maybe this was just a bad day?
I didn't feel right, I'm not really sure why, but I knew something was wrong so we rang the consultant and she told us to call an ambulance. The first response woman had arrived and was lovely, gave me some gas and air but it wasn't really touching the pain. I was screaming, it was loud, I was in PAIN. Once the ambulance arrived, they were less than impressed with me, I was too loud and I should have taken my painkillers (I was prescribed codeine, if anyone has experienced the effects of codeine, then they know they aren't the best idea).
Apparently I needed to take less gas and air and I should have known that (never been in an ambulance before or had gas and air) then once we had arrived, I was apparently being disrespectful by being noisy because there were people who were actually ill and I apparently was not one of those people? Anyway, after several hours of screaming and pain and dehydration in A&E they got a cannula in my hand after several attempts and took me up to the correct department (Yay!) I was also finally given some morphine as my blood pressure had come up a bit, one of the nurses was shocked I was still awake and in pain after I'd had enough morphine to knock out even the most tolerant of patients.
Then I met my amazing surgeon who told me I had a perforation and needed surgery. I was having none of it: "Why do I need surgery? I don't need surgery! It's me, why would I need surgery?!" Well I eventually realised, in my drugged up stupor, I definitely did need surgery and after several attempts at concentration I managed to read and sign the consent form. I was going to theatre and I was going to have to deal with it.
My operation lasted 6 hours and I woke up in intensive care or some such department where you get your own TV and your own personal nurse 24 hours a day (pretty nice if i wasn't actually too ill to appreciate it) I had my morphine and my TV and my nurse, I was emotional but happy to be OK-ish.
I had, however, woken up with a stoma, something I was warned of, but again it was the worst case scenario so I didn't think that would happen again? It totally did. At first with all my drugs and my aliveness I wasn't too bothered, then I got moved up to the ward and realised I wouldn't have my special nurses helping me all the time and I would have to do everything myself and I would have to go home and live my life with my stoma (FYI it was an ileostomy).
At first I was devastated, full blown depression and crying everyday, wanting to go home but knowing my life would definitely not be the same. Then came the shower! If you have ever been in hospital and incapacitated for any length of time, you will know how amazing the first shower is, it is like a turning point, the beginning of normality. The shower made me so much happier and I went on an online shopping spree buying clothes that would hide my stoma etc.
The rest of the hospital trip definitely had its ups and downs with people coming and going and me staying and staying some more. Even people with conditions worse than mine seemed to come and go too! I did finally get home, it was a long process to get back to normal.
You get frustrated and upset that you have no energy and you get angry that this happened to you but you do get over it. The antibiotics were horrible, the constant worry about things going wrong was horrible, but at the end of the day, it saved my life. My friends didn't have a clue that I had a stoma unless I told them, neither did work colleagues or anyone else for that matter. I worried about it, but I really didn't need to. I had mishaps etc but still nobody knew. When it neared my reversal I didn't want it reversed!
February 2013: I was scared about my operation, I'd been through social events, christmas, I had a happy relationship and I was managing to go to work. I could quite happily have kept it if I had needed to, but I did want it reversed, in my heart of hearts I knew I needed to be brave. And I was and it all went fine. I had to go to the toilet a million times a day and it was annoying but I was still not going to let it get me down and it gets better, almost normal within a month, the only way has been up since then!
I have since gone back to my job full time, fully grasped my medical needs/appointments/injections, gone on an amazing holiday with my boyfriend, started a qualification, had a busy social life, gone jet skiing(!!), eaten a KFC again (my bad), gone out to night clubs (I have stopped drinking though, but I never thought i'd go on a night out again last year!) and gone on several weekends away with friends and lots and lots of other things that anyone in my previous situation would definitely not think was possible!
Basically my life is as good as, if not better than, it was before any of this ever happened and I am a much more confident and grown up individual than I was a year ago. This is a bit of a horror story, but as the title says 'you were more likely to win the lottery' which is a direct quote from my consultant when describing how quick and what happened to me last year. I have just started on Azathioprine, after nearly a year of no crohns related issues (since my first op) as a preventative treatment due to the aggressive nature of my disease. Hopefully the only way is up! *touch wood!* You will survive! Please think positive :)
.JPG)
The title should give you relief in that what happened to me, it is very unlikely to happen this way. ...And if it does, you will survive!
March 2012: 1 KFC later (this was before I knew anything was wrong, don't tell me off!) I had incredible pains in my stomach/gut and had no idea what on earth had happened. I had had bloating, IBS and general nausea regularly for the last 2 years but I just thought that was just going to be my life and all was fine.
Over the next few months the pain would come and go, sometimes I couldn't drink anything, even water let alone eat much without it feeling awful. The worst was the middle of the night, I would wake up and be in incredible pain, screaming out for my parents to keep me company and make it go away, obviously they couldn't, but I was scared and I needed the company. I was batted back and forth between home, the doctor and the dietician and no diagnosis was made. So I decided to go for a private consultation.
July 2012: The private consultation was not what I was expecting, I thought nothing much was wrong with me, but this was when the dreaded C word reared it head for the first time, 'Worst case scenario, you could have Crohn's. "Worst case," I thought, "So I won't have that will I?!"
August 2012: A few weeks later and I was admitted to hospital with more pain and severe dehydration, left in acute assessment for a week, I eventually found myself in woman's health (not the magazine unfortunately). The nurses knew nothing of digestive issues and the doctors were an endangered species, but I had privately booked an MRI so there was hope! Segregated to my own room, as I was an infection risk, I felt a bit better and thought maybe I was OK.
Then the MRI came around and the dreaded 2 jugs of dye. There were tears, there were tantrums, the time it should have taken to drink said dye doubled then tripled, after lots of blackcurrant cordial and 1 jug of dye, they decided to give it a punt and somehow I managed not to throw up all over the shiny MRI machine.
The results came back the following day; 5 doctors in my tiny side room and me sat intimidated on my own. 'You have Crohn's Disease'. I kept it together until they left, at which point I burst into tears at the fact I was going to be ill forever. One thought that kept coming back to me at various points since I was diagnosed was that I was never going to sit down the pub with my friends for a quiet drink and a laugh ever again (this wasn't true though!).
The nurses shut my door and left me to it, I rang my boyfriend and he tried to console me but it wasn't going to work. A few days later I was feeling brighter, they were putting me on medication that should stop the pain and heal the inflammation. The fact these tablets were steroids didn't actually seem to bother me strangely enough, I was happy that there was some sort of solution.
A month or so went by and I was put in to have a colonoscopy, I wasn't happy about it, but I was being brave (for me) and looking forward to eating after the dreaded prep and 24 hour starvation. Unfortunately, it didn't go as planned and we were unable to go through the whole procedure because of the pain. I left and thought nothing of it, proceeded to eat my weight in food the following day and not worry when I didn't go to the toilet for a few days because I'd just emptied my whole system right? Wrong! So so wrong.
September 2012: 3 days later I woke up with usual Crohn's pain, I thought nothing of it, swiftly went to the toilet expecting the norm, however, I ended up in absolute agony. I am a bit of a worrier, so thankfully I had taken my phone to the toilet with me and as I began to feel faint and collapse on the floor in agony, I rang my parents to come and save me. We weren't sure what to do, whether I should just go back to bed? I mean it had been pretty damn painful before right? Maybe this was just a bad day? I didn't feel right, I'm not really sure why, but I knew something was wrong so we rang the consultant and she told us to call an ambulance. The first response woman had arrived and was lovely, gave me some gas and air but it wasn't really touching the pain. I was screaming, it was loud, I was in PAIN. Once the ambulance arrived, they were less than impressed with me, I was too loud and I should have taken my painkillers (I was prescribed codeine, if anyone has experienced the effects of codeine, then they know they aren't the best idea).
Apparently I needed to take less gas and air and I should have known that (never been in an ambulance before or had gas and air) then once we had arrived, I was apparently being disrespectful by being noisy because there were people who were actually ill and I apparently was not one of those people? Anyway, after several hours of screaming and pain and dehydration in A&E they got a cannula in my hand after several attempts and took me up to the correct department (Yay!) I was also finally given some morphine as my blood pressure had come up a bit, one of the nurses was shocked I was still awake and in pain after I'd had enough morphine to knock out even the most tolerant of patients.
Then I met my amazing surgeon who told me I had a perforation and needed surgery. I was having none of it: "Why do I need surgery? I don't need surgery! It's me, why would I need surgery?!" Well I eventually realised, in my drugged up stupor, I definitely did need surgery and after several attempts at concentration I managed to read and sign the consent form. I was going to theatre and I was going to have to deal with it. My operation lasted 6 hours and I woke up in intensive care or some such department where you get your own TV and your own personal nurse 24 hours a day (pretty nice if i wasn't actually too ill to appreciate it) I had my morphine and my TV and my nurse, I was emotional but happy to be OK-ish.
I had, however, woken up with a stoma, something I was warned of, but again it was the worst case scenario so I didn't think that would happen again? It totally did. At first with all my drugs and my aliveness I wasn't too bothered, then I got moved up to the ward and realised I wouldn't have my special nurses helping me all the time and I would have to do everything myself and I would have to go home and live my life with my stoma (FYI it was an ileostomy).
At first I was devastated, full blown depression and crying everyday, wanting to go home but knowing my life would definitely not be the same. Then came the shower! If you have ever been in hospital and incapacitated for any length of time, you will know how amazing the first shower is, it is like a turning point, the beginning of normality. The shower made me so much happier and I went on an online shopping spree buying clothes that would hide my stoma etc.
The rest of the hospital trip definitely had its ups and downs with people coming and going and me staying and staying some more. Even people with conditions worse than mine seemed to come and go too! I did finally get home, it was a long process to get back to normal.
You get frustrated and upset that you have no energy and you get angry that this happened to you but you do get over it. The antibiotics were horrible, the constant worry about things going wrong was horrible, but at the end of the day, it saved my life. My friends didn't have a clue that I had a stoma unless I told them, neither did work colleagues or anyone else for that matter. I worried about it, but I really didn't need to. I had mishaps etc but still nobody knew. When it neared my reversal I didn't want it reversed!
February 2013: I was scared about my operation, I'd been through social events, christmas, I had a happy relationship and I was managing to go to work. I could quite happily have kept it if I had needed to, but I did want it reversed, in my heart of hearts I knew I needed to be brave. And I was and it all went fine. I had to go to the toilet a million times a day and it was annoying but I was still not going to let it get me down and it gets better, almost normal within a month, the only way has been up since then!
I have since gone back to my job full time, fully grasped my medical needs/appointments/injections, gone on an amazing holiday with my boyfriend, started a qualification, had a busy social life, gone jet skiing(!!), eaten a KFC again (my bad), gone out to night clubs (I have stopped drinking though, but I never thought i'd go on a night out again last year!) and gone on several weekends away with friends and lots and lots of other things that anyone in my previous situation would definitely not think was possible!
Basically my life is as good as, if not better than, it was before any of this ever happened and I am a much more confident and grown up individual than I was a year ago. This is a bit of a horror story, but as the title says 'you were more likely to win the lottery' which is a direct quote from my consultant when describing how quick and what happened to me last year. I have just started on Azathioprine, after nearly a year of no crohns related issues (since my first op) as a preventative treatment due to the aggressive nature of my disease. Hopefully the only way is up! *touch wood!* You will survive! Please think positive :)
Friday 18 October 2013
Political Internships Available - Scotland
Crohn’s and Colitis UK is working with one of our corporate supporters to provide a series of political
internship schemes for young people with IBD across the UK. Although the details are still being confirmed, we hope to be able to offer Crohn’s and Colitis UK members an opportunity to work in the office of a politician the Scottish Parliament.
We will work with politicians to define the scope of the intern’s work in advance, but we expect that a successful candidate would have an opportunity to support the politician’s work at both constituency and national level, gain new skills, improve their confidence and contacts, and perhaps raise aspirations for a career in politics.
Interns will receive payment equal to the national minimum wage for the duration of their internship, which is expected to last between four and 12 weeks. Reasonable expenses will also be covered.
This opportunity will be open to a young person with IBD in Scotland aged between 16-25, with an interest in politics that is available for up to 12 weeks later this year or early 2014 – depending on your and the MSP’s availability.
If you are interested in the scheme, please e-mail philip.reynolds@crohnsandcolit
We will work with politicians to define the scope of the intern’s work in advance, but we expect that a successful candidate would have an opportunity to support the politician’s work at both constituency and national level, gain new skills, improve their confidence and contacts, and perhaps raise aspirations for a career in politics.
Interns will receive payment equal to the national minimum wage for the duration of their internship, which is expected to last between four and 12 weeks. Reasonable expenses will also be covered.
This opportunity will be open to a young person with IBD in Scotland aged between 16-25, with an interest in politics that is available for up to 12 weeks later this year or early 2014 – depending on your and the MSP’s availability.
If you are interested in the scheme, please e-mail philip.reynolds@crohnsandcolit
Tuesday 15 October 2013
Red Hot Research Raffle 2013
Our Red Hot for Research Raffle will raise funds for much-needed research. Sell tickets to family, friends and colleagues or buy them yourself.
Prizes:
1st Prize: £1,000
Order tickets or find out more:
Social Responsibility Policy
Prizes:
1st Prize: £1,000
2nd Prize: £500
3rd Prize: £250
5 x £50 each
Tickets cost £1 each.
Closing date: Wednesday 6 December 2013
Draw date: Thursday 12 December 2013Order tickets or find out more:
- Call: 01727 734485
Social Responsibility Policy
Tickets cannot be bought or sold by anyone under the age of 16 or sold on the street.
Problem Gambling? Call GamCare on 0808 8020 133 or visit www.gamcare.org.uk
Thursday 10 October 2013
A weekend of running for Crohn’s and Colitis UK
This weekend our runners took part in the Royal Parks Half Marathon and the Bournemouth Marathon Festival.
17 runners took to the streets and parks of London on Sunday 6 October to participate in the Royal Parks Half Marathon, including our very own Ryan Coffey who completed his first half marathon in an impressive 1 hour 41 minutes!
17 runners took to the streets and parks of London on Sunday 6 October to participate in the Royal Parks Half Marathon, including our very own Ryan Coffey who completed his first half marathon in an impressive 1 hour 41 minutes!
Over in Dorset 11 runners ran alongside Bournemouth’s beautiful sandy beaches for the first ever Bournemouth Marathon Festival, which included a marathon, half marathon, 10k and 5k races.
Everyone at Crohn’s and Colitis UK would like to offer a massive thank you to all our runners for their dedication in training, fundraising and raising awareness.
Pictured above: Ruth Latchford successfully completing the Royal Parks Half Marathon and Ryan Coffey celebrating at the finish line with his Nan.
Wednesday 9 October 2013
Crohn's and Colitis UK Comments on NICE Recommendation
Crohn’s and Colitis UK welcomes the recommendation from NICE (National Institute for Health Care Excellence) that faecal calprotectin be used to support a diagnosis of Crohn’s Disease or Ulcerative Colitis (known collectively as Inflammatory Bowel Disease), in conjunction with other appropriate processes.
The use of faecal calprotectin, which identifies inflammation in the bowel, could accelerate diagnoses in future.
We know that people with IBD can experience long delays in receiving a diagnosis, as symptoms are often confused with Irritable Bowel Syndrome.
Related Links
The use of faecal calprotectin, which identifies inflammation in the bowel, could accelerate diagnoses in future.
We are now looking forward to NICE’s work on developing the Quality Standards for IBD, which will begin in December. These Standards will be essential for mandating good quality care for anyone receiving a diagnosis of IBD.
We know that people with IBD can experience long delays in receiving a diagnosis, as symptoms are often confused with Irritable Bowel Syndrome.
Related Links
Tuesday 8 October 2013
Red Hot Research Raffle 2013
Our Red Hot for Research Raffle will raise funds for much-needed research. Sell tickets to family, friends, colleagues, yourself, total strangers (except people on the street), ... anyone and everyone!
Prizes
1st Prize: £1,000
2nd Prize: £500
3rd Prize: £250
5 x £50 each
Tickets only cost £1 each.
Closing date: Wednesday 6 December 2013Draw date: Thursday 12 December 2013
Tickets cannot be bought or sold by anyone under the age of 16 or sold on the street.
Order tickets or find out more
- Call: 01727 734485
- Email: fundraising@crohnsandcolitis.org.uk
- Download our order form (PDF)
Friday 4 October 2013
Christmas Cards Now Available
Christmas may seem like a long way off, but you'll be surprised how quickly it creeps up. To get ahead of
the game, our Crohn's and Colitis UK Christmas cards are now on sale and can be found at www.crohnsandcolitis.org.uk/cards.
All cards come in packs of 10 with prices starting from just £2 per pack (20p per card!). There's a great selection to head on over to the main website to view the options and to place your order.
the game, our Crohn's and Colitis UK Christmas cards are now on sale and can be found at www.crohnsandcolitis.org.uk/cards.
All cards come in packs of 10 with prices starting from just £2 per pack (20p per card!). There's a great selection to head on over to the main website to view the options and to place your order.
Famous People with Crohn's or Colitis - Carrie Grant
Most people know Carrie Grant as bubbly and bouncy, a world famous vocal coach who appeared on BBC's Fame Academy working with stars like Will Young and Melanie C.
But life isn't always bright for her. She says, "I have my moments of struggle. Moments when my IBD gets me down."
"When I can't eat with my kids because I'm on the elemental diet, moments when slapping on the facepaint is a struggle because I'm so exhausted or in constant pain, moments when my husband takes me out for a romantic dinner and eats alone whilst I'm stuck on the restaurant loo."
"Times like that, I'm glad I'm able to talk to someone at Crohn's and Colitis UK - it helps to know that together, we can work to make a difference and help others to find their inner strength to face the future - it isn't always easy."
Carrie continues, "If you have IBD or have someone who has - tell them to contact Crohn's and Colitis UK; there's friendly help and support available for all ages, with understanding people at the other end of the telephone line... just call!"
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 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.
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.
Tuesday 1 October 2013
A Massive Thank You to the Great North Runners
The weather forecast was pretty dim with occasional outbursts of heavy rain but reports back
It was fantastic to see so many of our runners come back to say hello to our staff and volunteer team at the Crohn’s and Colitis UK marquee in the charity village.
We were able to offer them a hot drink, biscuits, a sandwich, and a rub down from our brilliant volunteer masseurs.
Congratulations to all of our 200+ runners and a huge thank you for the months of training, fundraising and awareness raising.
A special mention needs to be given to our volunteers who helped on the day, offering a smiley face and refreshment all day as our runners popped in.
Calling All Crohn's and Colitis UK Members...
... We need your feedback. We want to know how we can improve the service we provide to our members.
There is a survey currently being conducted that is intended to help us determine those membership benefits of most importance and value and give you, as a member, the opportunity to tell us of any others you would like us to provide, as part of our membership scheme.
If you would like to take part, it should only take a few minutes to complete the survey at www.surveymonkey.com/s/C5JGG9P.
We appreciate your time. A big thank you!
There is a survey currently being conducted that is intended to help us determine those membership benefits of most importance and value and give you, as a member, the opportunity to tell us of any others you would like us to provide, as part of our membership scheme.
If you would like to take part, it should only take a few minutes to complete the survey at www.surveymonkey.com/s/C5JGG9P.
We appreciate your time. A big thank you!
Subscribe to:
Posts (Atom)