We've Hit the 5,000 Mark

We would like to say a massive thank you to everyone who has supported the charity through engaging with our Twitter feeds.

The Crohn's and Colitis UK Twitter page has now passed the milestone of 5,000 followers.

Please continue to support the charity via our social media channels and help raise awareness of Crohn's Disease and Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease (IBD).

Don't forget that we also have a dedicated Me and IBD Twitter feed too....

Follow us on...

• »Our Twitter feed

• »Our Facebook page

• »Our YouTube channel

• »Our LinkedIn network

All the Info In One Place

The Crohn's and Colitis UK website is a treasure trove of information. The charity has been going since

1979 which is probably before a lot of you were born, so it's no surprise that Crohn's and Colitis UK is where health professionals send newly diagnosed IBDers. 

There are also other issues relating to the impact and management of IBD which can particularly affect young people such as self-image, emerging sexuality, first relationships, leaving home, transferring from paediatric to adult health care, disclosing IBD to healthy peers, trying to fit your IBD needs in with your lifestyle, and even over-protective parents. These issues too can have an impact on confidence, self-esteem, well-being, and ability to cope with IBD.

On the main website there's a page called "Supporting Young People" which has information tailored especially for you. 

If you want to find out more about the charity, its people and its history, check out the About Us page on the main website too.

New Public Toilet Website Launched

Ever been caught short whilst out and about? It's happened to the best of us. The first thing most of us probably check out when we go somewhere is where the nearest loos are. Have you ever tried to look up where the nearest toilets are before you go somewhere? Well now, under a newly launched scheme you can... in limited areas as it's so new.

The areas covered by the Great British Public Toilet Map include parts of London, Manchester, Brighton, Hove, Lichfield, Lincoln and Salford.

It was developed, oddly enough by the Royal College of Art Helen Hamlyn Centre for Design - which is probably why it looks so pretty! But who cares who did it - let's hope they extend it to the rest of the world!

You can find it here.

What Are The Benefits of Membership?

You might be aware that Me and IBD is brought to you from the UK's leading IBD charity Crohn's and Colitis UK. You can become a member of the charity and receive all sorts of benefits. 

Becoming a member is open to anyone who is 16 years and over. You can join in your own right, or perhaps you are a parent, family member, or a friend. You can also join if you are a health professional, or hospital representative, in fact anyone who wishes to support the work of the Charity.

As a member you will receive:

• National Newsletter
• Membership/Can’t Wait Card
• Information Sheets and Booklets relating to your condition/illness
• A vote at our National Conference and AGM

For more details on how to become a member, click here

Sometimes the best way to learn more about the benefits of something is to hear what other people had to say about it. Here is a selection of feedback we received from members:

An email from someone who had been recently diagnosed:

"I was only diagnosed with UC recently but the one thing my specialist said I must do when he gave me his diagnosis was to join Crohn's and Colitis UK and it was certainly the best money I spent. The amount of information contained within your 'starter pack' made understanding the whole subject of UC so much easier and the meetings put on by the local group have been fantastic for finding out more about the condition and meeting fellow sufferers."

A parent who joined on behalf of their son:

"I joined your charity soon after our son was diagnosed and was so pleased to receive such useful information given in a non-alarmist way. My husband and I attended a number of your annual meetings when they took place in London. We were impressed with your organisation, the content and the wide variety of speakers. We would therefore like to take this opportunity of thanking you for all the invaluable support and information you have given all of us over the years."

Someone not renewing their membership following surgery:

"During the time of being a member of NACC it's been invaluable"

A parent who took out membership following her son's diagnosis:

"I need the Newsletters even if I felt really sad, because it helped me understand his illness."

A lady who was on benefits and unable to pay for her membership:

"I am thrilled you were able to help me and am very grateful for your prompt response and great kindness at this time where not much seems to be good."

Guest Writer Rachel - Part 3

SO HERE IS RACHEL'S CHALLENGE... AND VIDEO...

The challenge officially started on Wednesday, May 29, exactly four weeks after my surgery. So far I have completed *Drink a whole cup of tea – a horrendous experience and I don’t know how people drink it on a daily basis YUCK;  *Take a life drawing class – a slightly humiliating but eye-opening experience and *Join a Book Club – more fun than I ever imagined and I don’t know why I never did it before.

It’s all about having fun and helping others to understand this illness. If you are feeling down today because of your ostomy or Crohns/UC just stop and think a second of all the things you have gone through, all the pain, all the injections, all the hospital visits, you are a brave and strong person, and better times are ahead. If I can do this SO CAN YOU :-) so wish me luck and why not start your own list and join me on my crazy adventure?

http://adventuresofthebaglady.wordpress.com

Twitter: @thestomabaglady

THE BIG STOMA BUCKET LIST

101 adventures of a bag lady 

SKILLS/ JOB

1.       Learn to speak (and write) French fluently – currently trying and failing

2.       Run a small business

3.       Write a poem and read it at an open mic night

4.       Take a night class in something random

5.       Learn to play the guitar

6.       Get nominated for an award and go to the ceremony in a show stopping dress

7.       Work for the BBC

8.       Get 1,000 Twitter followers – please follow me!!! @thestomabaglady

9.       Learn to say hello in 10 very different languages – trying and failing

10.     Write a column

11.      Learn to parallel park and do it on a main road (thanks Andy!)

12.      Live and work abroad

13.      Host a radio show

14.      Learn to draw a tree properly

15.      Write and illustrate a children’s book

16.      Learn about the economy and stock market

17.      Write a blog with worldwide followers – well I have achieved that but not ticking it off yet

18.      Work for a national newspaper

19.      Have a novel/ short story published

TRAVEL 

1.   (20) Eat snails in Paris

2.   (21) Go to Disney Land and wave a wand in Hogwarts

3.   (22) Visit Prague and see a concert

4.   (23) Walk on the Great Wall of China

5.   (24) Pose for a picture in Times Square

6.   (25) Drink a whole pint (yes a whole one) of Guinness in Dublin

7.   (26) Go to Wales hiking and rent a cottage with hot tub and roaring fire

8.   (27) Get on a random plane to a random place at the airport

9.   (28) Climb the Millennium Dome

10. (29) Take a trip on a gondola in Venice and sing Just One Cornetto

11. (30) Have a night out in Birmingham/Liverpool/Edinburgh/ Manchester

12. (31) Go to an outdoor cinema

13. (32) Camp at a festival

14. (33) Complete 30 Visit England 101 things to do before you die (can’t be in this list) – doing bit by bit

15. (34) Go on a really scary roller coaster

CRAFTS

1.   (35) Design your own clothes/ accessories and make them

2.   (36) make a funky and a sexy stoma bag cover

3.   (37) take a life drawing class – see blog for hilarious story & pics

4.   (38) sell a piece of art

5.   (39) make a Christmas present – which is a quality gift

6.   (40) take a professional photograph

7.   (41) learn to cook – take a cookery class

FOOD

1.   (42) make a perfect cake (three tiers)

2.   (43) eat at a Michelin starred restaurant

3.   (44) throw a themed dinner party

4.   (45) make the perfect soufflé

5.   (46) host a fondue and cocktail party

6.   (47) go strawberry picking and make jam

SPORT and GAMES

1.   (48) Sit on Murray Mound eating strawberries and drinking Pimms

2.   (49) Go to a basketball match and eat a pretzel

3.   (50) Ride a horse

4.   (51) Play a round of golf

5.   (52) Complete an army assault course

6.   (53) Run the Santa Dash

7.   (54) Learn the perfect serve

8.   (55) Cimb the three Peaks

9.   (56) Learn how to play chess

10. (57) Play a full set of tennis

11. (58) Learn how to skip

12. (59) Shoot a gun

13. (60) Drive a classic car

14. (61) Learn how to play poker

15. (62) Walk the Sandstone Trail

16. (63) Compete in the Chester to Liverpool Bike Ride

17. (64) Go Fishing

18. (65) Learn the off side rule

19. (66) Go cheese rolling

CHALLENGES

1.   (67) Volunteer for charity

2.   (68) Raise £1,000 for NACC

3.   (69) Sell something on Ebay (I know lame that I have never done this) – doing now

4.   (70) Read a book every week for six months – read reviews on my blog

5.   (71) Do something just for the hell of it (more outrageous the better)

6.   (72) Go skinny dipping

7.   (73) Get a tattoo

8.   (74) Take part in a protest

9.   (75) Blag your way into a VIP section

10. (76) Be an extra in a tv show or film

11. (77) Sunbathe topless on a beach

12. (78) Wear false eyelashes (I know pathetic but my lashes are false virgins)

13. (79) Bounce down a road on a space hopper

14. (80) Sleep under the stars

15. (81) Live off £10 for a whole week (no cheating)

EXPERIENCES

1.   (82) Be part of a TV audience

2.   (83) Sit in the Commons for a debate

3.   (84) See Michael Buble (I know needs accent) live

4.   (85) Buy a designer handbag or shoes

5.   (86) Wear a stunningly expensive piece of jewellery

6.   (87) Stand for election

7.   (88) Rent a must-have designer handbag

8.   (89) Join a book club – done: read about my cultural evening on my blog

9.   (90) Drink a whole cup of tea (how I go through 25 years without doing this?)  YUCKY BUT DONE

10. (91) Milk a cow

11.  (92) Read Pride and prejudice (I never have!!)

12.  (92) Have a 24hr movie marathon

13.  (93) Wear a onsie in front of others!

14.  (94) See a Broadway show (I know should be in travel)

15.  (95) Jump out of a plane (arrghhh obviously with a parachute)

16.  (96) Ride the London Eye (probably should be in travel)

17.  (97) Get a pen pal – write for a year and then meet up somewhere really cool

18.  (98) Read 50 autobiographies in a year – done about 7

19.  (99) Campaign for something that matters – and win

20. (100) Do something that scares the shit (sorry mum) out of you!

21.  (101) And FINALLY this one has been left open to you guys – think of something cool – not too dangerous please

Anyway…here we go - WISH ME (& Winnie) LUCK!!!

Another Award Win for the Charity

We are over the moon to announce that Crohn's and Colitis UK (the leading UK IBD charity behind Me and IBD in case you didn't know!) has won their 13th award for their PR campaigns with agency Healthcare Solutions PR.

The award was for Excellence in the Communication of Survey or Market Research Data and was for work done on IBD and Employment and IBD:Sport and Fitness campaigns in 2011 and 2012.

During 2011, Crohn’s and Colitis UK focused its attention  on IBD and employment; the charity commissioned surveys of employees and employers, campaigning for better working conditions. Based on the identified problem area, namely that 68% of charity members felt they had little/no control over working conditions, the survey report launch at the House of Commons achieved excellent quality media coverage and lobbying resulted in a Westminster Hall Debate.

With sport and fitness in the spotlight during 2012, Crohn’s and Colitis UK carried out its first survey on this subject - finding that 80 per cent of members had had to give up sports temporarily/permanently as a result of their condition. With the help of six new sports Ambassadors and Champions including Sir Steven Redgrave and rugby star Lewis Moody, the results were distributed amongst a far wider range of media outlets and audiences than the charity had achieved in previous years, including interviews broadcast across 154 radio stations nationwide, to a total audience of 51 million. Coverage of members’ sporting fundraising challenges and income from the 2012 Challenges increased dramatically over the previous year.

Here's what the judges had to say about the entry:



We were also delighted that former Crohn's and Colitis UK CEO Richard Driscoll won Communique Healthcare Communication Advocate of the Year 2013.

This is why:

During the 21 years that Richard Driscoll headed-up Crohn’s and Colitis UK (previously the National Association for Colitis and Crohn’s disease - NACC) he successfully developed the organisation into the most significant medical charity within the inflammatory bowel disease (IBD) community.

 

As Chief Executive, Richard combined his skills in business and people management, fundraising, media relations and public affairs to lead the development of the charity from a small, volunteer-based organisation to a significant national patient organisation with 30,000 members, 36 staff and a turnover of £3m. The charity now supports thousands of patients and their families every year, provides a network of 70 local volunteer groups and funds £500,000 of research annually. 

Richard has been at the forefront of the patient and clinical community drive to improve healthcare services for IBD. He chaired the multidisciplinary IBD Standards Group which developed the first national healthcare standards for IBD, and with his strategic vision, understanding of professional issues and commitment to patient engagement has played leading roles in the UK IBD Audit, the IBD Quality Improvement Project and more recently the IBD Registry. 

In 2009/10, Crohn’s and Colitis UK was one of the first charities to be awarded the Department of Health Information Standard accreditation. 

You can find out more about the campaigns by visiting the dedicated microsites for each of them...

www.ibdsportandfitness.com
www.gooddeskbaddesk.com

Guest Writer - Harriet

To say I was flattered to be asked to write for Me and IBD would be an understatement.

When I began my blog in January of this year, I wasn’t expecting hardly anyone to read it – let alone have over 15,000 views in a few months and now have a registered website! Thank you, one and all!

I had toyed with the idea of starting a blog for a few months, as I wanted an additional outlet for me and my Crohn’s. So the lead up to my biggest op to date seemed like a perfect opportunity to get online and get writing…

Bloated Medley

Which brings me nicely to my topic of choice for my guest post: my bloat.

But in more general terms, I suppose it’s looking at weight and Crohn’s – as no one wants to read about my plonker of a stomach the whole way through!

If you’ve happened to stumble across my blog already, you may have noticed that I have quite the problem post-op, with what I refer to as my flamonge: it is the overly rotund part of my stomach that doctors believe is due to an abdominal fistula.

I’m still under investigation with it all and I imagine it will only end up leading to another operation and maybe even an ileostomy. Ho hum. Such is life and all that.

But regardless of what’s happening on my insides, it’s my outsides that seem to be getting the most attention; mainly from strangers, most of them thinking I’m pregnant. I’m not. I’m just a female with a round stomach that’s completely disproportionate to the rest of my body. Easy mistake to make, I guess!

I seem to have always had a problem with bloating, but I guess I had so many other things happening with regards to my Crohn’s, it essentially took a back seat. Except this time it’s for a particular reason and it’s out of control…it’s so frustrating. But on the plus side at least they can pinpoint why it’s gone nuts…?

Skinny Malinky!

My body has fluctuated in weight a ridiculous amount since my official journey with Crohn’s began, (by official, I mean after diagnosis). At my lightest, I was around 7 stone and super thin. When I look back at pictures it makes me sad, as I know at that time I was so confused about what was happening to me and what it meant for my future.

Yet I still worried about wearing tight clothes because of my bloated stomach!?!

I’d take that mini molehill over my Mount Everest any day…

Similar to other guest writers on here, I was at university, in my second year when s**t literally hit the fan. I was bombarded with a cocktail of medicines and steroids after diagnosis, and naturally this started to change the shape of my body.

It didn’t take long before I hit a healthy weight – and then it kept going. Don’t get me wrong, I’ve never been ‘obese’ but my BMI for my 5’3” frame is currently classed as ‘overweight’; I should not have hit just under 11 stone in recent years.

The reason why I wanted to talk about weight in my guest post, is because losing weight is a

The 'Human Weeble'

common symptom of Crohn’s; I’ve had first-hand experience of this. But I’ve also had first-hand experience of ballooning due to meds, and then never being able to shift weight.

For one of my posts on my blog, I decided to look into it, as surely I’m not the only person having to deal with this weight conundrum?!

And it appears I’m not.

There is almost a subculture of Crohnies who really struggle to lose weight and don’t know why. I find it quite interesting as I was always warned off dieting by my consultants as you can lose weight so quickly.

WELL IT HASN’T HAPPENED TO ME IN A LONG TIME! *weeps into the keyboard*

It got to the point where I basically started morphing into a human weeble; bloat included. And I only have a small head – my bodily proportions are so off key!

There doesn’t seem to be much out there for how to intentionally lose weight with an IBD. However I did read on Livestrong.com that in 2010 the American College of Gastroenterology recognised that more people with these conditions (e.g. Crohn’s) are experiencing problems with being overweight and obesity than formerly realised. Research is ongoing to find the reason, but it seems it’s to do with the metabolism slowing right down, which makes it difficult to shift the weight.

Me, Now

So what do I do? I make a conscious effort to eat well, and although I would love to exercise more it is pretty tough when I’m still post-op and Ms Sleepy all the time.

My only hope is that whatever happens with my flamonge, it will kick start some weight loss and let me get back to my day-to-day life. I just want to feel more like myself again – it’s been too long! 

To keep up to date with me and my Crohn’s, you can visit Harrietsgotcrohns.com