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 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

• 

• Simple tests could help diagnose serious bowel conditions

• 

• Faecal calprotectin diagnostic tests for inflammatory diseases of the bowel: guidance (PDF)

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)

View details of last year's raffle and prize winners

---

Full Terms and Conditions

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.

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!"

• Watch Carrie Grant's video for Crohn's and Colitis UK on YouTube

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.

A Massive Thank You to the Great North Runners

The weather forecast was pretty dim with occasional outbursts of heavy rain but reports back

from some of the runners were that there was a tail wind helping them on some points of the course.

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.

View photos on our Fundraising for Crohn's and Colitis UK Facebook page

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!