Spring 2017 IN THIS ISSUE...

What’s on in 2017... 2

Coffee Morning 2017 3

Organising Team Changes 4

The Emotional Impact 8 of IBD

Patient Panels 10

Word search 11

Contact Details and 12 Diary Date Crohns and Colitis UK North Midlands Group Newsletter Page 2

WORLD IBD DAY 2017—FRIDAY 19TH MAY This year, the North Midlands Network will be holding an awareness stand from 10am—4pm at Royal Stoke University Hospital, Stoke-On-Trent to help raise awareness and provide information on IBD. BETLEY SHOW SATURDAY 5TH AUGUST 2017 Betley Court Farm, Main Rd, Betley, Nr Crewe, Cheshire CW3 9BH We will be holding an awareness stand and tombola with fantastic prizes at Betley Show this year. Come down and pay us a visit! MEDICAL LECTURE— TO BE CONFIRMED We are currently planning to hold a medical lecture in November 2017. We will provide more information in due course. Watch this space!

If you would like us to attend an event, whether it be a Charity Fun Day, Christmas Fayre or Spring Fete, please con- tact us so we can support you. The North Midlands Network held a Coffee Morning at Stafford Trinity Church on Saturday 25th March and enjoyed a huge success, raising £208.91 in funds! Thank you to everybody who joined us.

Cake Stall!

Tegan & Amelia raising awareness! Juliet & Amelia selling cakes! Crohns and Colitis UK North Midlands Group Newsletter Page 4

As many of you will be aware Leanne Downie, our North Midlands Organising Team Chairperson, stepped down at the last AGM. We wish her all the best with her new life in London! Our longstanding Organising Team members Keith and Linda Boughton also stepped down in November last year to enjoy their retirement. We are very grateful to all 3 for their efforts over the many years and will miss their contribution immensely! Thank you! Following our recent recruitment drive, we have been fortunate enough to welcome 6 new Organising Team members...

TEGAN HYETT

Hi I’m Tegan Hyett, I’m 17 years old and I live in Newcastle under Lyme. I have had Ulcerative Colitis since spring 2016. I started having serious symptoms around the middle of April, and at first we didn't really understand what was happening. I had to have a few blood test which all came back saying there was nothing wrong with me when that wasn’t the case. In the end we found out what was wrong after my older sister was diagnosed with Celiac Disease. I went to see the same specialist that she did and I was given my diagnosis. Once I finally found out what was wrong I was glad as I could start to get better. Crohns and Colitis UK North Midlands Group Newsletter Page 5

“It was a very JENNA HANDS challenging time for me as it was during my I was diagnosed with Crohn’s GCSES…” in 2015, and started coming to the lectures put on by I felt like it would stop me the Crohn’s and Colitis North from doing well in the exams or even being able Midlands group soon after. to go to the exams in the first place. My family had been very supportive “The help that the group throughout my flare up have given me over the past and I probably wouldn’t few years has been have done as well as I invaluable…” have without their help. I passed all my GCSEs in the summer which I didn’t Now I want to follow suit and think would happen with help others to deal with the how my Colitis was emotional & physical impacts affecting me, but my of IBD, as well as raising family was there all the awareness of the disease. I way helping me with am currently studying for my anything I needed. professional accountancy exams however in my spare time I like baking, watching football and spending time with my family! Crohns and Colitis UK North Midlands Group Newsletter Page 6 DOUG HYETT

I’m the father of Tegan Hyett who was diagnosed with UC earlier in 2016. I am married to Juliet and have 3 daughters, Angharad who is at Plymouth Uni studying Geology, Carys who is at Bangor Uni studying Psychology and Tegan who is at Newcastle 6th form, so still one at home for now! I am currently Sales Director for Lex Autolease, the car leasing firm which is part of Lloyds Bank, although due to leave there for pastures new at end of April.

Being parents of a child with IBD and also another child with Coeliac Disease, has probably put as much stress into our lives in 2016 as we could have imagined. We have spent many hours waiting in Royal Stoke and Nuffield Hospitals for Endoscopies of varying sorts, blood tests, infusions and general examinations but hopefully we are getting things under control now! I hope Tegan is now feeling a little better than last year and that we can throw our full support behind the charity and help where ever we can to raise awareness, put on events and of course help with the fund raising to ease peoples experiences of the disease.

CHRIS HODKINSON Although not a Crohn’s or Colitis sufferer, I have learned a lot about the impact of Crohn’s Disease through Sarah, who I’ve known for a year and a half after we met at University. I was un- aware of the conditions beforehand and feel they don’t receive the awareness these life-altering illnesses really need, therefore I have joined the North Midlands Network to be there for local people and help spread the message. I look forward to helping to make a difference!

Continued……... AMELIA LAWSON Hi I'm Amelia I was diagnosed with IBD Ulcerated Colitis in September 2015 after being ill for 10 months. I had been ANDREA LAWSON well up until then I did not know what was happening Hi I'm Andrea I do not personal- and felt Like why me! I was ly suffer with IBD but my taken into hospital and began daughter does. In December my treatment. At first I did 2014 my beautiful healthy not want to know anything I teenage daughter started to felt angry but after sometime become ill. We had 10 months I was ready to find out about of trying to identify what was what I had. My mum intro- wrong then in September 2015 duced me to the information she was diagnosed with IBD Ul- and took me to a local Crohns cerated Colitis. Our world fell and Colitis meeting. I met apart she was taken into hospi- people like me I could be tal and treatment began. I had 100% me around these people never felt so alone or helpless I then wanted to be more that's when the hospital told us than just a visitor so I decid- about the charity. It helped in ed to join the group as a vol- many ways from information to unteer to help raise aware- the local meetings where we ness and raise money for bet- met people who were living ter treatment and a cure one with the condition and doing day. normal things. 18 months on I am in a position to want to give back and be there for other people, raise awareness and fundraise in the hope for a cure. Crohns and Colitis UK North Midlands Group Newsletter Page 8

There are multiple emotional impacts of being diagnosed with Inflammatory Bowel Disease (IBD) - not least of all learning to live with such unpredictable long-term conditions and all the chal- lenges those bring. Not only do the individual sufferers or people experience this, but also everyone around us: our friends and families, and especially our husbands, wives and partners go through all this alongside us, and therefore the need for and importance of emotional support is crucial. My own experience of IBD I can see from several perspectives, including those of my husband Kev and my Mum.

The most profound emotional impact of my Crohn’s, has been how it has shaped and deepened my relationship with Kev. We had only been seeing each other for 4 weeks when I was diagnosed, so he has been with me through eve- rything health-wise and learned how to cope with IBD alongside me. I’ll never forget having to text him, “Please don’t worry, but I’m in hospital…” whilst he was away for the weekend and he visited me on the ward the next evening, meaning he met my parents a lot sooner. The daily challenges of IBD have meant our relationship deepened and grew quickly, particularly since we moved in together in 2011, when we learned so much about each other. Kev is very understanding, knowing that I get fatigued easily and so cannot do a lot around the

Crohns and Colitis UK North Midlands Group Newsletter Page 9 house, nor do I often feel like much more than snuggling up on our sofa with him. He claims, “I’m only trying my best,” about taking care of me when I’m feeling under the weather, but he is marvellous at it. However, I appreciate how frustrating it is for him too, like when we have to cancel or rearrange plans.

Another impact of my Crohn’s has been my Mum’s reaction to and ways of coping with it. For years she fought for my voice to be heard and my symptoms to be taken seriously by doc- tors, and when I was eventually diagnosed, there was relief from my family and I that my illness had a name and my symptoms could be managed.

“After 4 years of married life, Kev and I are expecting our first baby in July, and as I approach becoming a mum myself, I understand and Knowing how vital emotional appreciate how she must support is for those of us with Crohn’s Disease or Ulcerative feel.” Colitis, we at the Crohn’s & Co- litis UK North Midlands Group are here for you, our members too. We are happy to talk with you at our events and lend an empathetic ear.

By Emma Davies-Chapman, North Midlands Network Volunteer

Crohns and Colitis UK North Midlands Group Newsletter Page 10

IBD teams are currently looking for members for their IBD Patient Panels at the following Hospitals… Leighton Hospital (Crewe) The Royal Wolverhampton Hospital Trust (includes New Cross and Cannock Chase Hospital) Royal Stoke University Hospital (including County Hospital Stafford)

Leighton Hospital Patients Patient Panels can: please telephone Louise Smith on 01270273910  Help trusts to meet their legal obligations for patient engagement and involvement; Cannock Chase Hospital Patients  Act as a forum through which patients can advise from a please email patient’s perspective and help to ensure that services are [email protected] Panel well designed to improve the will meet at New Cross Hospital patient experience; Wolverhampton.

 Help to improve communication and engagement with patients, Royal Stoke University encouraging them to more Hospital and Stafford County responsibility for their health and to provide practical Hospital Patients support; please ring Nurse specialist Stephanie Bourne on 01782-  Contribute to commissioning 675360 or decisions and advising on proposals for redesigning of email secondary care services; [email protected] for further information. Panel will meet up at Royal Stoke Hospital

Crohns and Colitis UK North Midlands Group Newsletter Page 11 SPRING WORDSEARCH

Can you find these words? They may go forwards, backwards, diagonally and letters may be used more than once!

G T V B R A I N B O W X A B S T

L Q R L D U I Z X B C C H I C K

I W F A V W E B I E H I P K N J

D M S O K O I M L J N G Y D B G

O N R F I W G O J 0 Q E K H G R

F P E O R Q P N U T S M L X Y A

F H W G E D C K N S I S J L A S

A S O R A Q V U G P T W O N M S

D F H T Z Y A E G X D E B M O C

I B S J N U R K Q Y L F M P N S

W R V X O E K L Y G Z F A C S V

Q E X P T H S C D Y N N U B A F

R E P S F C O T G J H K I U M N

F Z A D W A R M I N G H B L V P

J E F Q T P G O U C J K A B I O

Z P K F D O S F A L A M B S N B

BLOSSOM FOAL NEST

BREEZE RAINBOW TADPOLE

EASTER EGGS BUNNY BULBS

LAMBS DAFFODIL SHOWERS

GRASS CHICK WARMING

Crohns and Colitis UK North Midlands Group Newsletter Page 12 Date for your CONTACT US Diary North Midlands Group Website: www.crohnsandcolitis.org.uk/nm Next Group Meeting Email: [email protected] Friday 19th May, 7pm Facebook The Harvester Pub, Crohn’s and Colitis UK Trentham Lakes, Stanley 45 Grosvenor Road, St Albans AL1 3AW Matthews Way, Stoke-on [email protected] -Trent, ST4 8AD. www.crohnsandcolitis.org.uk Feel free to come along Charity registered in England Number 1117148 to our Network’s Charity registered in Scotland Number SC038632 meeting if you are A company limited by guarantee in England: company number 5973370 interested in getting involved! INFORMATION SERVICE Trained Crohn’s and Colitis UK Information Officers answer questions on IBD 0300 222 5700 Mon-Wed & Fri 9am-5pm, Thu 9am-1pm (except English bank holidays) Answer phone service outside these hours

CROHN’S AND COLITIS SUPPORT Confidential support from trained Crohn’s and Colitis UK volunteers who have personal experience of living with Ulcerative Colitis or Crohn’s Disease 0121 737 9931 Monday-Friday 1pm-3.30pm & 6.30pm-9pm

DISABILITY BENEFITS Call the Information Service on 01727 734 470 to If you have received this arrange a telephone appointment with a trained newsletter by post and would volunteer for help with Disability Living Allowance be happy to receive future or Personal Independence Payment editions by email please provide your name, membership number and email PARENT TO PARENT address to [email protected] Call the Information Service on 01727 734 470 to arrange . This will save the group a telephone appointment to talk to another parent who valuable funds which can be has a child with IBD. used to benefit all those affected by Inflammatory Bowel Disease.