SPRING 2017

FA

Leicestershire & Rutland GroupDIARY DATES Saturday 18th March

GENERAL MEETING - 2pm until 4pm

Glenhills Library, Dorothy Avenue, Glen Parva, LE2 9JD This meeting trials a new venue. Once the formalities of the AGM are over we will have a relaxed meeting where you can talk all about IBD. Everyone is welcome to come along. Free parking & refreshments available. More info inside.

Saturday 18th March

BLUES MUSIC GIG - 7pm until 11pm

The Raven Hotel, Corby T h i s i s a m u s i c g i g h o s t e d b y CornMarketBlues.co.uk. Tickets are £13 in advance or £15 on the door. This is NOT a Crohn’s and Colitis UK event but we will be there raising awareness and funds. More info inside.

Saturday 25th March

COFFEE MORNING - 9am until 12pm

Glenhills Library, Dorothy Avenue, Glen Parva, LE2 9JD Come and join us at our first informal coffee morning at The Park Cafe at Glen Parva Library.

This will be a great chance to have a relaxed chat with others affected by IBD and indulge in a lovely slice of cake and

a delicious hot drink!

Sunday 30th April

BLUEBELL WALK & RIDE AT RUTLAND WATER - 10am until 4pm

Whitwell Car Park, North Shore, Rutland Water The Bluebell Walk & Ride returns for 2017. Everyone is welcome to come and join us.

We have challenges suitable for all abilities from short walks to a lengthy cycle ride!

Keep an eye out on Facebook and our website for details on local coffee morning meet ups.

WELCOME TO THE LEICESTERSHIRE & RUTLAND GROUP Welcome to all our new members, I do hope to meet you soon at one of our meetings or events. This year we are changing where we hold our general meetings. Glenfield Hospital has been our longstanding venue for over 20

years but unfortunately an increase in the parking charge was a concern to us. Luckily we have managed to find a new venue that we hope you will love more. So please come and see us at Glen Parva War Memorial Hall. It's got plenty of free parking! Due to our Group covering such a large area it is very difficult to suit everyone's needs. This new venue is only half a mile from Fosse Park shopping

Centre so has good access from all major routes. Unfortunately the Medical meetings have not been well attended recently. I think people have better access to information these days than when I first joined over 15 years ago. The internet has changed the way most of us find support. Facebook, YouTube and the Crohn’s and Colitis UK website were not available back then. This year we aim to make our meetings more relaxed and a great place to meet others who are affected by Inflammatory Bowel Disease (IBD). We will also try and focus on raising awareness of these chronic and sometimes debilitating diseases. We also want to help raise even more funds for the charity, especially research into finding a cure for IBD. Waitrose has been supporting Crohn's and Colitis UK nationally recently so l was planning on contacting them all across our area to ask if we could have an awareness stall at various stores over the summer. If you would like to help us please email the group: lr@groups.crohnsandcolitis.org.uk I sometimes think to myself when l am not feeling well, “it 's best to remain positive”. I feel there must be a cure for these illnesses soon but in the mean time when I can and I’m able to, I will do my contribution however big or small to bring it about.. Lynne Audley Chairperson

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 2

�

NEW IBD NURSES Over the past year or so the IBD nurse team has been changing. With Crohn’s and Colitis UK raising awareness, campaigning and a superb fight by our IBD nurses, the team has managed to secure funding for 3 more nurses.

We will soon have a team of 5 nurses which according to the IBD Standards of Care set out by NICE is about right for the number of IBD sufferers in Leicestershire and Rutland. You may have already met Jodie. She joined the team a year ago and is settling in brilliantly. Kelly joined the IBD team back in November 2016 and is still finding her feet but is fitting in wonderfully. Finally we have Katy who starts in April.Of course we have to say a big thank you to Sharon and Tracy who continue to support and help us. They all do a fantastic job and hopefully with over double the amount of nurses than before, we will see an even greater level of care as their workload is spread out, meaning more time can be spent helping us on our IBD journey.

KIND DONATIONS We would like to extend our thanks to all those who, either through a donation or fundraising, contributed to our charity during last year.

You have helped to support those affected by IBD in your local area as well as nationwide. In 2016 you raised a total of £3,696.05, so thank you to:-Mr and Mrs Bagley: £962.38, Belton Football Club: £15.31, K.Berry: £16.50, Heather Burton: £576.00, British Gas Workforce: £970.45, Mr Every-Clayton: £25.00, Foxy Lots of Melton: £62.00, Mrs Kotarba: £20.00 , Mr s La f fo rd -Smi th : £194.50, Mrs Lavine: £37.23, David Matthews: £91.00, Mrs Pywell: £8.33, Ram – Belton Stores: £52.10, Corn Market Blues and The Raven Hall of Corby: £301.12, Royal Standard of Leicester: £41.70, Mrs J.Rudin: £20.00, Mrs J.Storer: £140.00, Mrs A.Wright: £162.43. If you would like to donate money or would like help fundraising please let us know. Email, Facebook or call us. We would love to hear your ideas and can help support you if needed.

WHAT MAKES YOU HAPPY? We would love to hear what makes you happy when you are having a rough time. We don’t mean taking medication (although a strong painkiller can be a relief sometimes) we are talking more about the easy, small wins.

We want you to Facebook us your ideas so we can share them with the group. For me, when I have had a bad day, I will hug my fluffy, hot water bottle and put some jogging bottoms on.Do you cuddle our pets? Pop a face mask on? Drink a herbal tea?Why don't you send us your photos for us to share on Facebook?

LEICESTER IBD HELPLINE The IBD nurse helpline is a great service run by the Specialist IBD nurses of the Leicester Hospitals. They can answer your IBD related queries and help deal with many issues without you having to take a visit to your GP or trying to get into the very busy hospital clinics.

As you may be aware they currently only run this service in the mornings with calls outside of this time being directed to the answer phone and being dealt with the following day. Over time the helpline is looking to become more available, including having afternoon sessions. This is due to more nurses being added to the team which is lightening their large workload, giving them more time to be manning the phones. The IBD nurse team is also looking into more ways of communicating with you. The idea is that you, as a patient, can spend more time away from the hospital clinics whilst still getting the care and support that you need.Emails and FaceTime sessions are being considered. This is a huge leap forward in patient care as the support will be better suited to you. Access to the wealth of experience and reducing the number of visits to hospital clinics will be easier and more efficient. This will ensure only those who need to be visiting hospital are actually attending clinics. This means you should be seen quicker in clinic as there will be less of a strain on the services.Viability studies are underway to see what can be done now and what can be planned for in the coming years. If you are an outpatient of the Leicester Hospitals Gastroenterology service then you will have been given the contact details for the IBD nurse team. If you’re not an outpatient but would like access to the service, please

speak with your GP or Gastroenterology team for more information.

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 3

�

AWARENESS WEEK 2016 During Crohn’s & Colitis Awareness Week, in the first week of December, we released a 'behind the scenes' video of a body confidence photoshoot.

Six of our female members met with the lovely Dorte (a great, local photographer) to take part in a boudoir themed photoshoot to raise awareness of Crohn’s and Colitis UK and to show that we're all beautiful inside and out (even when we're not feeling so hot on the inside). Here's a link to the Video on YouTube or search “Self Image - Crohn & Colitis 6 amazing women” on YouTube. To the left is one of the stunning photos taken on the day.Well done ladies - you're gorgeous! If you're interested in having your own experience, please visit the photographer's website: www.dorte.co.uk.

ACCESSIBLE TOILETS Have you spotted the accessible toilet signs? Crohn’s and Colitis UK have been campaigning to change the “Disabled Toilets” into “Accessible Toilets”. We need to raise awareness that whilst a person might look ‘okay’ on the outside, they may be in a daily battle with a serious medical condition and urgently need to u se tha t ‘d i sab led ’ o r ‘accessible’ toilet. So far over 19,500 campaign emails have been sent! We're asking supermarket giants Sainsbury's and Waitrose to follow the example set by Asda, Morrisons and Tesco of installing accessible toilet signs throughout their stores - helping to end stigma and raise awareness that not every disability is visible. For information on how to help the campaign visit: crohnsandcolitis.org.uk/accessible-toilet-signs

GLENFIELD IBD CLINIC CLOSING If your IBD clinic is currently held at the Glenfield Hospital then you may already know it is being moved.

The University of Leicester Hospitals (UHL) have decided the Glenfield Hospital is no longer suitable for the IBD clinics. The patients who currently see their IBD team at the Glenfield Hospital will see their clinic moved to the city centre Leicester Royal Infirmary.This is a big loss to the area as the Glenfield Hospital is easily accessible to those who live on that side of the city or travel in from neighbouring towns and villages. On a positive note, the Leicester Royal Infirmary has recently had a multi-storey car park built alleviating some of the parking issues it previously had and it is part of the Hospital Hopper bus route. The IBD team are bringing some of the clinics to some local areas. If this change causes you a problem then please talk to your IBD nurse or gastro. team as they may be able to offer a more suitable solution. You could even write to the UHL trust explaining why this is not suitable for you.

AWARENESS MEETINGS 2017 will be seeing the group change and move with the times. We will be hosting fewer medical meetings and formal meetings and in their place we will have more relaxed meets. To do this we will require some help from you.

We hope to spread our meetings throughout our area. It is a HUGE area and we only have a few members on the Organising Team. This is where you can help. Do you know of a suitable location in your area? These meetings could be Coffee Mornings, Pub Lunches, Bowling evening, jogging sessions… anything that can help bring IBD’ers together, raise awareness and maybe even raise some cash all whilst doing something enjoyable. We need local helpers to find suitable places and activities. Together we can support each village, town and city in our area! We can do the majority of the

g r u n t w o r k , s u c h a s contacting the venue or club and we can supply one or two team members to come along on the day. All ideas are welcome and we look forward to hearing from you.

HELPLINE The Crohn’s and Colitis UK helpline number has changed.

The helpline number is now: 0300 222 5700

This can be used for parent to parent, disability benefit information and much more. Visit Crohn’s and Colitis UK contact page: www.crohnsandcolitis.org.uk/contact

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 4

�

DATES FOR YOUR DIARY

AGM & GENERAL MEETING Date/time: Saturday 18th March, 2pm until 4pm Venue: Glenhills Library, Dorothy Avenue, Glen Parva, LE2 9JD The AGM is our only formal meeting of the year but please do not let this put you off. It is still a fantastic opportunity to meet others who are affected by Inflammatory Bowel Disease (IBD). After the initial formalities we will relax and take the opportunity to talk to each other. It is also your chance to make a difference to your local Crohn’s and Colitis UK group. If you would like to be more involved in the charity, help those affected by IBD or get more involved in the fundraising and awareness side then please let us know. We are always open to new members who can bring a renewed enthusiasm, fresh ideas and an extra pair of hands to the table. This is the first time in a very long time that the AGM will be held in a new location. We are going to give Glenhills Library, Glen Parva a try. This is down to a few reasons, mostly the Leicester Hospitals Trust want our members to pay for parking. We also feel that some members may not want to have meetings in a hospital that they may already frequent too often! We would love to hear your feedback. Over the next year we are looking to experiment with meeting styles and locations with fewer meetings taking place at the Glenfield Hospital. If you would like to volunteer with the group we do not expect the world and will obviously help you integrate into the team. We are a friendly bunch who meet every couple of months and help organise local events and keep local members updated via Facebook and this newsletter. This is a great opportunity to give back to society. and help those who need support. Please take a look at “A day in the life of a volunteer” within this newsletter to see what they get up to. You do not need to bring any particular skills or have extravagant ideas. We just need an enthusiasm to help and a willingness to learn. We can cater to all ages and abilities. Maybe you want to run an Instagram page or help out with the newsletter. Maybe you would like to help kick start a regular coffee morning. Maybe you enjoy listening and can use a pen and paper to take notes during our meetings. So come and join us at Glenhills Library. Bring your friends and family along too.

Free parking and refreshments available.

BLUES MUSIC GIG Date/time: Saturday 18th March, 7pm until 11pm Venue: The Raven Hotel, Corby T h i s B l u e s m u s i c g i g i s h o s t e d b y CornMarketBlues.co.uk. We have been invited along to another of the Corn Market Blues gigs at The Raven in Corby. We will be there with our purple T-Shirts on, trying to raise awareness for Crohn’s and Colitis UK. This gig is NOT hosted by Crohn’s and Colitis UK, we are there as guests only but if you would like to attend, please see their Facebook page for more

information. T h e m a i n performance will be “The Stevie Nimmo Trio”. They are a blues band who, in 2016, had their lead s i n g e r, S t e v i e , nominated at the British Blues Awards f o r ‘ B e s t M a l e Voca l i s t ’ , ‘Bes t Guitarist’ and ‘Best Songwriter’ with T h e N i m m o Brothers nominated i n ‘ B e s t B l u e s Band’. It will be a fantastic night and live music i s a l w a y s entertaining. The

Corn Market Blues are a not for profit outfit who do this for the love of blues music. So please go to their website to purchase tickets (Again please note, this is not a Crohn’s and Colitis UK event)

COFFEE MORNING Date/time: Saturday 25th March, 9am until 12pm Venue: The Park Cafe, Glenhills Library, Dorothy Avenue, Glen Parva, LE2 9JD Come and join us at our first informal coffee morning at The Park Cafe at Glen Parva Library. This will be a great chance to have a relaxed chat to others affected by IBD and indulge in a lovely slice of cake and a delicious hot drink! You are all welcome to this volunteer run cafe. You do not need to be a member of Crohn’s and Colitis UK nor a sufferer. Depending on the number of attendees we may sit in a group or separate off into smaller groups. The cafe is very welcoming with great toilets. It offers a wide selection of hot and cold drinks as well as home made cakes. It is a volunteer run service. cont…

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 5

�

BLUEBELL WALK & RIDE - RUTLAND WATER Date/time: Sunday 30th April, 10am until 4pm. Venue: Whitwell Car Park, North

Shore, Rutland Water Don’t panic, the Bluebell Walk and Ride is back. You may have noticed this event has not been included in the “Walk It” diary in the national “Connect” magazine. This is because it is now a local event rather than a national event so is no longer a “Walk It” event. The Bluebell Walk and Ride is one of the biggest events on our calendar. It is a great day out for the entire family, including the dog! Rutland Water offers incredible scenery and at this time of year the woodland is bathed in a sea of blue bells. Rutland Water is a huge reservoir with many views and paths for you to

enjoy. We offer a relaxed atmosphere with challenges to suit all abilities. If you fancy a short stroll with your Gran and toddler then you can take on the 2 mile walk. This is a gentle walk through the Bluebell woods and is great if you cannot walk too far. If you would like a bit more of a challenge, you can add an extra 3 miles onto this journey by venturing around to Sykes Lane. This will deliver lake side views and will test your legs. There are plenty of areas to sit and have a picnic and watch the day drift by. Take your time. If you would like to experience everything Rutland Water has to offer then we suggest tackling the cycle ride. There are 2 choices of cycle route. The perimeter of the reservoir covers 17 miles or you can add the hilly and more challenging peninsula which increases the distance to 25 miles. Both cycle rides take you around the entire reservoir including a couple of pubs that offer great services such as toilets, seating and of course…..drinks. There is no need to commit to the distance of your challenge until the day, so you can see how you feel or maybe what the weather is like on the day. Our event is supposed to be a relaxing family fun day. If you are unwell on the day, you can take yourself along to Rutland Water when you are feeling better and complete the course on your own. This year’s theme is “Mad Hatter” and you can interpret this in whatever way you see fit. Go crazy and dress up in a full Alice in Wonderland Mad Hatter outfit or maybe just wear on a brightly coloured baseball cap. It is up to you. As usual we will have plenty of toilet access, refreshments and some entertainment. Being open to the public on the day, Rutland Water has cafes at most car parks as well as other facilities available. Please get your family and friends involved. Sign up online and get fundraising. We need your help to make this event bigger and better than ever before. www.CrohnsandColitis.org.uk Please note that Bicycles do get booked up quickly so if you intend on hiring a bike (including tandems)

please do get in touch with Rutland Cycling as soon as you can. www.RutlandCycling.com. For more information keep an eye on Facebook and our Website. We have included a poster on the back of this Newsletter. When you have finished with the Newsletter we would really appreciate you putting the poster up in your work, local news agents, library etc. Happy Fundraising!

COFFEE MORNING - DROP IN Cont… There are no set times, no seating plans, no set topics, just an open door and a friendly face. Please pop by even if just for half an hour. If it goes well we may do this more regularly. If Glen Parva is not convenient for you, then why not offer to organise a coffee morning near you? It takes very little effort and we can help you. Just contact us for more information. We hope to encourage you to take more of an active role in the group.

FEEL GOOD DAY Date/time: Saturday 12th August, 10:30am until 3pm Venue: The Park Cafe, Glenhills Library, Dorothy Avenue, Glen Parva, LE2 9JD Let us pamper you. Our Feel Good Days are indulgent and completely free to

our members with IBD. We will provide a range of therapies and refreshments to help take the weight off your shoulders. You’ll receive 2 therapies but we ask you to choose a 3rd just in case a therapy is not available on the day. The treatments are: Reflexology, Indian Head Massage, Reiki and Aromatherapy. Please email us with your preferred 2 therapies as well as a 3rd for backup. Places are limited so secure your appointment quickly. It is a first come, first served basis. Email: lr@groups.crohnsandcolitis.org.uk

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 6

�

Winning Team

A DAY IN THE LIFE OF A VOLUNTEER With the AGM just around the corner we have been thinking about what it means to be a volunteer on the Organising Team of our local group. So here is a small insight into what our team members do. “Hello. My name is Ben and I have been part of the team for a good few years now. I originally joined as I wanted to help out with the newsletter. I thought the newsletter could be updated and include much more information. I had no experience with newsletters or publications but I knew how to work a PC and make an attractive document. I now put together a couple of these newsletters per year. It takes a good few hours of my time to piece together the information but I do enjoy it which definitely helps. As I knew how to use a PC I also set up the Facebook page which I now admin alongside another OT member. I also help out when I can with our meetings. This usually entails sticking up directions and helping to tidy up at the end”

“I'm Kate and I really enjoy helping out at the events we host because I get to meet new people and hopefully welcome new members. My volunteering tasks have included setting up tables before events, making people drinks, giving directions to the event room, tidying up and chatting. I occasionally post on our Facebook page and help think of ideas for newsletter articles. The Organising Team meets most months for an hour to plan upcoming events. The other team members have been very welcoming and I now think of them as friends 🙂 There's no pressure on the amount of time you have to commit to volunteering, or the amount of events you have to attend - every little helps!” “Hello my name is Maria. I have been a team member for 7 months. I joined as I wanted to help raise awareness and also to help gain my confidence back. Since being

diagnosed with Crohn’s Disease I find it hard to go out and meet new people. I love being a team member as you can help out as much or as little as you can. I help out at our meetings and usually help put the signs up and make the hot drinks. It's the small things that make a difference to helping the group.” Some members do much much more and others can only only offer a small amount of time due to family and work commitments. Each and every member plays a vital part in the team. We need help coming up with ideas, fundraising, online media and generally helping the group do what needs to be done. Some members can offer an hour every couple of months others live and breathe Crohn’s and Colitis UK. We never expect anything from you apart from an enthusiasm to help. A desire to do good. Come join the team. Make new friends, find new skills and maybe even enjoy yourself. We look forward to seeing you soon. If you feel you would l ike to help or need more information please get in touch: LR@Groups.CrohnsandColitis.org.uk or come along to our next meeting.

CROHN’S AND COLITIS COMPANION There is a new 'Companion' website that streamlines information and provides links to reliable and trustworthy sources such as our charity publications, NHS choices and other support organisations.

This is a very useful resource whether you’re newly diagnosed or have been living with Crohn’s Disease, Ulcerative Colitis or another form of Inflammatory Bowel Disease for a while. It will help you find reliable and relevant information, access support and take control. You can also use this tool if you're concerned about, or are looking after someone living with IBD. To s e e t h e C o m p a n i o n f o r y o u r s e l f v i s i t : companion.crohnsandcolitis.org.uk

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 7

�

CONTACT US LEICESTERSHIRE & RUTLAND GROUP Chairperson: Lynne Audley Group telephone: 0300 222 5700 Website: www.crohnsandcolitis.org.uk/lr Email: lr@groups.crohnsandcolitis.org.uk

Crohn’s and Colitis UK 45 Grosvenor Road, St Albans AL1 3AW

enquiries@crohnsandcolitis.org.uk www.crohnsandcolitis.org.uk

Charity registered in England Number 1117148 Charity registered in Scotland Number SC038632 A company limited by guarantee in England: company number 5973370

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 arrange a telephone appointment with a trained volunteer for help with Disability Living Allowance or Personal Independence Payment (PIP)

PARENT TO PARENT Call the Information Service on 01727 734 470 to arrange a telephone appointment to talk to another parent who has a child with IBD.

Calls to all our 0845 numbers cost 7p per minute plus your phone company’s access charge.

If you have received this newsletter by post and would be happy to receive future editions by email p l e a s e p r o v i d e y o u r n a m e , m e m b e r s h i p n u m b e r a n d e m a i l a d d r e s s t o groups@crohnsandcolitis.org.uk.

This will save the group valuable funds which can be used to benefit all those affected by Inflammatory Bowel Disease.

The Leicestershire & Rutland Group has made every reasonable effort to ensure the content of this newsletter is accurate, but accepts no responsibility for any errors or omission. The views of the contributors do not necessarily reflect the views or policies of Crohn’s and Colitis UK and no reference in this newsletter to any product or service is intended as a recommendation.

MYTH BUSTER - ILEOSTOMY This feature is about busting the myths people have with regards to different aspects of Inflammatory Bowel Disease. In this edition we bust 5 ileostomy myths! Myth 1 - you will need to buy new clothes.. Having an ileostomy doesn't have to change your wardrobe - so have a try on session before you go on a spending spree! Although you may want to choose clothes that don't restrict your stoma, don't be afraid to wear the clothes you love - even figure hugging outfits! Top tip - cut a circle out of your tights to fit around your appliance! Myth 2 - you can't eat that.. There's a common misconception that having a stoma will restrict your diet and there are certain foods that are a definite 'no'. However, each person is different and you may find you're fine to eat your favourite foods - as long as you chew chew chew! Myth 3 - what's that smell?.. Some people are afraid that other people will be able to smell your appliance/stoma. As long as a drainable pouch is kept clean around the opening, nobody will be able to smell that you have a stoma. When emptying the pouch, you may notice that the output actually smells of the food you've been eating. You can sometimes even smell sweet foods such as ice cream!

Myth 4 - nobody will find me attractive 😞 Some people worry that having an appliance will not be something they or their partner can see past. However, many people find having a stoma gives them more body confidence as they can regain control over their digestive system. Confidence is sexy! Myth 5 - I don't like the look of the bag and I'll forget to order new ones.. There are many different types of bags in different sizes, materials and even colours. Don't be put off by the huge see-through one they give you after surgery. Your stoma nurse will set you up with a supplier of stoma kit, such as SecuriCare. They will ring you each month to ask what you need more of, and deliver them straight to your door - all free of charge, on prescription. So easy!

Crohn’s & Colitis UK Leicestershire & Rutland Group

Page 8

�