November 2020 Issue 60 Northern Ireland Network

November 2020Issue 60Northern Ireland NetworkIN THIS ISSUEThe ORGANISING TEAM wishes allour members and readers a healthyand happy New Year.Top row: Valerie, Kim and PatriciaBottom row: Una, Ruth and JohnEDITOR’S NOTESThe year 2020 will certainly notbe forgotten. The coronaviruspandemic has made life incredibly difficult for us all, and oursincerest thoughts are with youall at the moment. Charitieshave been impacted greatly bythis pandemic, and on page 3you will read a message fromCrohn’s and Colitis UK explainingthe difficult decisions they havehad to make in the past fewmonths. In April, a significantcontribution from the NorthernIreland Network was made tonational funds to assist in thesetrying times.But, we have been adapting tothe circumstances.The NI Network, along withseveral other networksacross the UK, have beentaking part in a pilot project of ‘Virtual SocialEvents.’ As we can’t meetfor coffee at our gettogethers, this alternativeon the Zoom platform hasbeen a great way for members to connect with eachother and share theirCrohn’s and Colitis stories.But we know that somemembers are not online,and we want to acknowledgethat we are thinking about youand we are looking forward to atime when we can meet face toface once more. You will see tothe right that we are holding ourfirst ever Virtual EducationEvent on Zoom in November,which we hope to see many ofyou at. With Audrey steppingdown in February, after 32 yearsof service to the network, I’dlike to introduce myself andJohn Collins MD FRCP as yournew Co-Lead Volunteers. Wewant to thank you for your continued kindness and support.2Fundraising3Coronavirus Pandemic &Network Update4&5 Your Lockdown Stories6Contact DetailsDATE FOR YOUR DIARYVIRTUAL EDUCATION EVENTDate: Monday, 23rd NovemberVenue: Online on ZoomTime: 7.00-8.30pmSpeaker: Dr Graham TurnerThe speaker will focus on thelatest treatments for Crohn’sand Colitis, and will take yourquestions.Register for this free event viaEventbrite at the following address: t Panel 2021On behalf of the NI Network Iwish you all good health andThe Belfast Trust are aiming toplease know that we are here forset up a Patient Panel. If youyou during these strange times.are interested in being a partof this please email IBDKim, Lead Volunteer.Nurse@belfasttrust.hscni.netwith your interest. The aim isto commence in January 2021with a virtual Q&A session.

Crohn’s & Colitis UK Northern Ireland NetworkFUNDRAISING & DONATIONSIt has been an exceptionally difficult year for many. Social distancing restrictions has made itmore difficult to fundraise. Yetthe people of Northern Irelandhave still shown their supportand enthusiasm, with incrediblykind donations. Your support isappreciated now more than ever, and we thank you for everydonation. Every bit helps thecharity’s goal of finding a curefor Crohn’s and Colitis.Page 2JUSTYN’S DAY OF GOLFIn August, Justyn Galloway hosted his annual Golf tournament atClandeboye Golf Course. The suncame out and a great day washad by all. Congratulations tothe winner Harry O’Hara. An incredible 1,200 was raised. Welldone to everyone involved, andthank you!NI HEALTHCARE AWARDSIn February, at her last official engagementwith the Network, Audrey attended the Northern Ireland Healthcare Awards with IBD NurseJacqueline Kearns and Dr Joanne Brown. Thetrio, along with two other OT members, tookpart in an IBD workshop for Pharmacy studentsat Queen’s University Belfast in Nov 2019, andwas submitted for consideration at the awards.Audrey made a speech appealing for donations.and an exceptional 1,936.70 was raised.Left to Right:Jacqueline, Joanneand AudreyOTHER DONATIONS gratefully received 140.50 H Doyle 60 Lorraine Gillan 60 Emma Lewis. Despite a flare up, Emma completed the 2.6 challenge and ran 2.6 miles. Her parents also completed a long walk! 60 Barclay Kennedy 124 Margaret McGrandles. Collection box at Eurospar, Crumlin. 500 Harriet Hanna and all those at First BallymenaPresbyterian Church. 60 Gail McAleenon. Gail sold homemade Halloweensweet conesThank you to all continuing to raisemoney during these difficult times

Page 3Crohn’s & Colitis UK Northern Ireland NetworkIMPACT OF CORONAVIRUS PANDEMICA message from Sarah Sleet, CEO at Crohn’s and Colitis UK:“Here at Crohn’s & Colitis UK we are facing unprecedented challenges as a result of the coronaviruspandemic. Our community need us more than ever to help them navigate their way through the mazeof information about what coronavirus might mean for them, especially if they are taking immunosuppressant drugs.Our website has received over 2 million visitors looking for information and Helpline enquiries havequadrupled since the crisis began. Helping people with the right information and supporting themthrough a very scary time is our focus over the next few months. We know our information and supporthelps individuals and we know this takes some of the pressure off hard-pressed NHS staff.But, in common with many other charities, our income has dropped very significantly, and we expectthat trend to continue for the rest of the year as many of our fundraising activities will not be able totake place. And while we urgently look for other sources of funding such as the government fund forcharities, for many different reasons we appear unlikely to access much money through these routes.As a result of the sudden and dramatic drop in income we have had to take action to protect the financial security of the charity including cutting many of our costs. Even with these actions, we reluctantlyhad to ask our Local Networks to release their locally raised funds to support our vital services, such asour Helplines and trustworthy information on our website, providing information and support for everyone in the UK.We are very grateful to our supporters in Northern Ireland, and the Northern Ireland Local Network,who have made a significant contribution to charity funds. We know how hard you have all worked toraise this money and we will use these funds to ensure the charity can continue to operate. We havereceived an increased demand in enquiries from people affected by Crohn’s and Colitis living in Northern Ireland, and across the rest of the UK, and we know that you need our services more than ever atthis difficult time.” - April 2020.Farewell to Rosemary and ZoeIt is with sadness that we say goodbye to two ofour Organising Team members. Rosemary Patterson is stepping down after over 20 years of serviceto the NI Network. Rosemary has always been akind presence at countless get-togethers and educational meetings over the years. Zoe McAteer isstepping down from the Organising Team afterover 8 years of dedication. Zoe has been a friendly face at countless events and kept all our members and the public up-to-date on Twitter.Both ladies have volunteered their time and efforts for us and all those with Crohn’s and Colitisin NI for many years. We at the OT will miss themboth greatly, but we wish them the very best intheir future endeavours. Above all else we wishthem good health, and you’ll be sure to see themat future events.Concerned about Coronavirus? The Crohn’s & ColitisUK website is an excellentresource during this time. Itis updated regularly withrelevant information regarding shielding and yourlevel of risk. Findat: https://crohnsandcolitis.org.uk/IBD Clinical Psychological SupportMeetingIn September, on behalf of the NI Network, John attended a virtual meetingregarding the discussion of clinical psychological support offered to IBD patientsin Northern Ireland. Cases were made formore support in this area for patients,and the need for funding and service development was identified.

Page 4Crohn’s & Colitis UK Northern Ireland NetworkYOUR LOCKDOWN STORIES SHAREDFor many months this year itseemed as though the world hadpressed the pause button. Here wedocument stories by membersabout their experiences of‘Lockdown.’CHARLENE MCKINNONI believe my lockdown happenedlong before Covid-19 had hit. Itook ill last year calling it the‘1000-day cough.’ They couldn'tfigure out what was wrong – X rayswere clear. I worked through somany antibiotics and steroids tillmy body couldn't take anymore.Being signed off by the doctor wasthe worse feeling in the world.Not knowing what was wrong, mymental health took a serious dip –I felt so exhausted, irritated, taking it out on those close to me. Iwas able to go back to work onlyto be taken off again after developing an infection and signs ofCovid-19. I then worked up until Igot the letter of shielding. Icouldn't believe it! There I was offagain but this time for 12 weekswith no face-to-face contact. Iwasn’t allowed to go to college,work or even visit family. This wasthe soul destroyer for me. Myroutine was completely lost. Thefirst couple of days I had plenty tokeep me busy: finishing collegework and sorting out my UCASforms. But when this was finished, I had to come up withstrategies in which I knew wouldkeep me busy. I started upcyclingold furniture that I had in thehouse, completed little homemade craft projects for Christmas.I started to redecorate and deepclean the house, moving roomsaround to be able to get a studyarea for when I started University.My mum was cracking up as I hadthe house upside down! I wasnow running out of rooms, so Ineeded something else. I wasallowed to start a bubble withanother family member whoalso had been shielding. Istarted to go out cycling as Icouldn't cope any longer inisolation, which my professionals agreed to. I was ableto keep myself safe andhealthy, in both my physicaland mental health. I truly believe it's not the illness itselfthat brings us down, but allthe secondaries: fatigue, lossof sleep, anxiety, selfcriticising and other symptoms, My family were amazing, having FaceTimes with myloved ones that I couldn't seehelped. I also had my lovelymother to look after only being through heart surgery before lockdown. My handswhere truly full when she alsodecided to break her ankle!CharlenePIARÁS TOOLANHi, I’m Piarás Toolan, I am 22years old, exactly one year agoI was diagnosed with Crohn’sdisease. At the start I was confused and scared, but after lotsof research I came to terms andunderstood what Crohn’s disease involves. Little did we allknow what the world was aboutto go up against, a vicious virusand put lots of people at risk.At the start of the lockdown inMarch I was told to shield bypublic health authorities but Iwas also in the middle of finishing a 4 year sports degree atUlster University. At this pointof the course I had many assignments and presentations to submit, but the work really helpedme keep my head sane beinglocked up. Lockdown also gaveme the time needed to finishmy degree, which I recentlygraduated with.I feel that keeping my mind active during these crazy timesreally helped me stay positive,be it by learning, being activeor just having fun, it all contributed to me having a good mindset.If I could offer any advice itwould be to surround yourselfwith people that make you happy and keep your mind active asit will create a positive environment for you to be in duringthese mentally challengingtimes.Stay safe! Piarás