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SenSura Click and SenSura Flex are not available in the Republic of Ireland.

and are registered trade marks of Coloplast A/S. ©05-08. All rights reserved Coloplast Ltd, Peterborough PE2 6FX, United Kingdom. FROM THE EDITOR

welcome to SUMMER

"Summer afternoon - Summer I would also like to take this afternoon...the two most beautiful opportunity to mention the £10,000 words in the English language." - CA Appeal - perhaps you can think Henry James up ways of helping us raise funds for some of the following:- At present we are lucky enough to have beautiful blue skies and warm • Publicity Materials summer sunshine, dare I say hot! • Volunteer Support Materials • Patient Literature It’s amazing how quickly the weeks • Professionals Literature and months go...as soon as one • Computers and software calendar event like the London Marathon or the Boat Race comes Please keep your letters and emails round we’re on to the next, Ascot, coming. They are so important and I and now Wimbledon! can assure you that each and every one is read; we try and respond to all. Here we are again with another packed issue of Tidings! In this Look out for our Freepost envelopes - summer issue we have a feature on the Association wants to make it support garments which, I’m sure, will even easier for you to get in touch. Sue Hatton pictured with Mr Brendon be of interest to you all. Open Door So, as a trial, we are randomly Moran - Colorectal Director, and visits the Hillingdon Hospital NHS and inserting 1000 Freepost envelopes Consultant Surgeon at the Basingstoke interviews Christine Hyde who was into this print run - so pens at the and North Hampshire Foundation Trust. just eighteen when she began her ready if you are lucky enough to career as a student nurse in the receive one! If this trial is successful, The Colostomy Association 1960’s. Christine tells Tidings about Freepost envelopes will be made goes to Coloproctology her experiences and is passionate freely available. Conference... about passing on her knowledge to the next generation of stoma As always I would like to encourage The Association attended this year’s care nurses. you to get involved with Tidings - Coloproctology Conference at YOU make it what it is - YOUR Harrogate - in order to raise Bob Buckley (volunteer) and Ernie magazine! awareness about the work of the Millington talk about exercise and tell charity to attending colorectal their stories, which make fascinating surgeons and stoma care nurses. reading. Professor Gordon Williams MS FRCS Medical Director of the A big thank you to Coloplast who Addis Ababa Fistula Hospital gives us sponsored the CA exhibition graphics, furniture and literature and to Dansac an insight into the history and work of Email: who sponsored the accommodation the hospital - and appeals for spare [email protected] for Sue Hatton and Jane Wood and stoma care supplies for the hospital. the prize for the draw, a case of You can also catch up on what’s Champagne! happening on World Ostomy Day, Readers’ Panel - Any reader which is coming up fast - who succeeds in having an Reader The event was a great success article, top tip or particular PANEL 3rd October 2009! Perhaps you are contributor enabling the Association to “reach already organising an event. Please topic featured in Tidings will out” to colorectal surgeons and stoma write and let us know how it goes! see this acknowledgement. care nurses from all over the UK and the World! A big thank you to all of you who Prize Draw Winner... sent in donations and feedback in The case of Champagne response to the outer wrap on the goes to:- last issue of Tidings - Fantastic!

Ms Elizabeth Paling Deputy Sister Nottingham University Hospital NHS Trust

TIDINGS| SUMMER2009| 3 inside contents

EDITORIAL TEAM FROM THE EDITOR OSTOMY COMMUNITY Editor welcome to great comebacks Jane Wood SUMMER 3 winners Executive Trustee OSTOMY Colostomate & Helpline CA NEWS 8 Volunteer enthusiasm... COMMUNITY Sue Hatton dedication and taking a look at world Trustee generosity Colostomate & Helpline ostomy day Volunteer 16 Jackie Dudley FEATURE Office Administrator open door SPECIAL FEATURE Gill Herbert Christine Hyde pathways to RGN/CNS a colostomy Office Administrator Jo McKenzie 10 Addis Ababa 6 Fistula Hospital Colostomate & Helpline 18 Volunteer Gloria Hadfield FUNDRAISING CA APPEAL Colostomate & Helpline help us to raise Volunteer Beryl Goddard funds so that we can raise our dedicated to Stoma Care Nurse game... stoma care Advisor Ann Leppinton-Clark SHOWCASE 14 ASPECTS OF MEDICAL update TREATMENT on new stoma talking 20 care products about & services prolapse £10,000 CA Appeal PRODUCT FOCUS OSTOMY CARE 7 what are hospital to 22 those sticky home labels for? 15 stoma care supplies...

Tidings is YOUR Magazine...

Kind thanks to all who have Tidings Magazine: Editorial Submissions: contributed to this issue The views expressed by the contributors are not necessarily We welcome your contributions of Tidings. those of the Colostomy Association. Great care has been taken to Tidings - if you have a story, to ensure accuracy, but the Colostomy Association cannot article or letter that you would accept responsibility for errors or omissions. like featured in the magazine we would like to hear from Disclaimer: YOU! The display, description or demonstration of products and services or the inclusion of advertisements, inserts and samples If you have an idea for an within Tidings Magazine does not constitute an endorsement or article and would like to recommendation of these products and services by the discuss this with the Editor Colostomy Association. or would like help writing your

4 | TIDINGS| SUMMER2009 COMPANY 24 YOUNG OSTOMATES IN CONVERSATION STORY a breakaway support groups Stoma success Maria Culleton About... care service celebrating 35 SCN talks about the Colostomy Association provider charity status her view of The Association represents the celebrates 25 and fun events support 48 interests of colostomates and other ostomates. We provide years for youngsters groups support, reassurance and practical information to anyone who has or is about to have a Colostomy. OSTOMY NEWS SUPPORT GROUPS Department in your region The Colostomy Association is 26 a charitable company limited of Health support groups by guarantee update strengthen (Registered Charity No: 1113471). and empower How to get to in touch... HEALTH people support By post: CHATBACK Colostomy Association garments Readers’ writes 2 London Court, East Street, Reading RG1 4QL support for you your letters and your stoma 37 By telephone: 49 General Enquires: 0118 939 1537 HEALTH YOUR QUESTIONS Stoma care queries only: Helpline: 0800 328 4257 ANSWERED 27 Dear Nurse By E-mail: [email protected] your letters 41 and queries NOTEBOOK How to become a member 53 of the Colostomy Association... HEALTH updates RESEARCH STUDY Simply visit our website swimming accessories or and events and register at: and you open days www.colostomyassociation.org.uk necessities or contact 31 what’s best General Enquires: 0118 939 1537 for more HEALTH for patients DONATIONS readers’ stories 45 make a 55 information exercise and difference getting back to we need Tidings Magazine ‘normal’ your help Autumn Edition 32 advert booking space by 28 August copy by 7 September publication October

story please get in touch. really help to bring YOUR (equal to 21cm x 15cm). How to contact the Editor Tidings is also interested in magazine to life! You can send • File sizes not less than commissioning articles please these as prints or digital 10Mbytes uncompressed Write to: contact the Editor. images. Colostomy Association • Images compressed in 2 London Court We will always do our best to Supply of digital images: JPEG format. East Street Reading include your contributions in When supplying digital images Berkshire RG1 4QL the next issue of Tidings or will for inclusion in Tidings • For scanned images please hold them back for a future please try to observe some or set at 300 ppi in RGB mode issue. When submitting your all of the following criteria; and scan original @100%. or e-mail: information don’t forget to [email protected] supply your name, address, • Images should be in Feedback...We are always phone number and e-mail RGB mode trying to improve your or e-mail the editor direct: address if you have one. Magazine and welcome your [email protected] • Images should not be less feedback. Enjoy this edition of Please include any relevant than 2480 pixels x 1772 Tidings we look forward to Advertising Enquiries photos or illustrations as these pixels at 300 pixels per inch bringing you the next edition... For advertising enquiries and media pack Tel: 0118 983 6226

TIDINGS| SUMMER2009| 5 CA NEWS Enthusiasm...dedication and generosity drives the CA forward

gratified by the enthusiasm of our Conference in Harrogate. We would new volunteers, impressed by the also like to thank CliniMed for hosting dedication of colorectal surgeons and one of our training pilot days and stoma care nurses and with the Dansac for their assistance with a ongoing generosity and good will of number of promotional projects. I am the stoma care companies. currently discussing and negotiating funding for research into Rectal Pain and Irrigation, as well as trying to take the Colostomy Association into Southern Ireland.

CA Open Day - The Liberty Stadium, Swansea - 10th September We are really looking forward to hosting a great Open Day! We want Our greatest achievement this year this to be the first of many regional has been to devise and pilot several Open Days that the CA take around Summer at last! - I never thought I training programmes. Volunteers - the country and with the help and would be so pleased to have a huge Bob Buckley, Jean Scott (an ex- support of the stoma care companies thunderstorm and my lovely garden teacher who has run our Helpline for we will! (and me) breathe a huge sigh of relief many years) and Vice-Chairman of and for me to feel no guilt at being in Trustees Ernie Hulme must be The Swansea Open Day in September front of the computer instead of congratulated for all their hard work will begin at 12:30pm and includes propping up wilting flower beds! and for making each training day a workshops on different stoma care success! We want those of you who related topics, plus manufacturers I am mastering the art of finding are willing to help us, help other displays and a presentation from inexpensive ways of getting around colostomates, to get involved. We will Lynn’s Bowel Campaign finishing the country. I have been surfing the be reporting on these programmes around 7:30pm. web for good deals and propelling fully in the next issue when we have myself from one end of a terminal to analysed all the feedback! Thank you Please come and meet all of us, and another. The ultimate goal being to all for being so positive and for those let us know what we can do to help raise awareness and support for the volunteers that feel you are being you! work of the charity from those underused at this time, please bear working in stoma care - healthcare with us! professionals and industry - the rewards have been immeasurable! Our thanks go to Coloplast who have offered to support all our training Sue Hatton On my travels I have met so many events and have sponsored a recent Executive Trustee wonderful people. I have been awareness drive at the Coloproctology Colostomy Association Introducing Richard...New General Manager at CA In 1974 I joined the Grundon Group I live in Streatley-on-Thames with my of Companies. This was to be the start wife Jan. We have two daughters, of a long career in the Waste Industry Charlotte and Georgie and a five- and remained with Grundons as the month-old grandson called Alfie. Operations’ Director for twenty years. I was diagnosed with Crohn’s disease I then moved to Hampshire Waste at the age of 25 and persevered with Services, based near Winchester. various drugs and treatments until just Our Company won the largest waste after my 35th birthday when I was Richard Bray (far right) pictured with his family recycling and processing contract ever finally forced to have it all removed. awarded (processing 1 million tonnes Over the next five years I had about of waste per annum!) in the UK. seven operations at the John Radcliffe I would like to take this opportunity to Following this I spent three years Hospital near Oxford. My only regret is introduce myself; I have recently working for a Dutch company based not having had surgery earlier as it has joined the permanent staff of the in Basildon, Essex, processing and really improved my quality of life. Colostomy Association as the new recycling white and electrical goods. General Manager. I look forward to meeting you For the past twelve months I have all in the near future. I started my working life in the motor been working as a Consultant on the Regards, racing industry as an engineer, processing of waste to produce green travelling the world and meeting energy. Richard Bray some very interesting people. General Manager

6 | TIDINGS| SUMMER2009 FUNDRAISING WE NEED YOUR HELP

Fundraising is an immensely important source of income for the Colostomy Association...as we rely solely on donations to continue our work of giving support to colostomates... £10,000 Your FUNDraisers... A BIG thank you to Oliver Carne and his Cornish garden.. Bank CA Appeal Coffee Morning Holiday Monday June 4th was a I held a coffee morning last week and perfect day in the village of have halved the proceeds – one half Constantine. Oliver Carne a beloved to you and the other to Acorns. Please member of the community opened accept our donation £140.00. his six acre garden. The event raised £10,000 Yours faithfully over £2000 for Macmillan Cancer RG (Mrs) Support, £800 of which Oliver kindly Birmingham donated to the Colostomy Association. Oliver and Sue Hatton are great £9,000 Notelets - designed! friends, and he was delighted to help Bill designed and sold his own raise funds and awareness for the CA. notelets featuring his church Sanctuary Oliver, now 80 has raised thousands Flowers on the cover. of pounds for charities Bill Watson sent in a donation of £80. over the years. £8,000

To the Editor In 2008, I made a decision to raise Tell us more about your fundraising funds for the CA. So with the help of events...for CA £7,000 my friend Jasmine Glencross, we made jam, pies and crumbles. So please accept my donation of £200. Thanks to all those connected with putting the magazine together Lisa Tubbs £6,000 - long may it continue. Yours sincerely jumps for CA... M M Thank you Hull for your kind Lisa Tubbs featured in Tidings £5,000 donations Autumn Issue 11 - decided to do Dear Colostomy something out of the ordinary, a Association tandem skydive! “It was something I At our Annual Christmas Dinner in would have never contemplated December 2008, our Mothers’ Union before and the only way to make £4,000 raised money through running a raffle sure I would go through with it was and it was decided in the last meeting to do it for charity, I raised over £350 to donate the proceeds to the for the CA”. It was one of the most ‘Colostomy Association’. Therefore amazing experiences of my life and £3,000 please accept our donation of £40.00 one I can’t wait to enjoy again! towards a very worthy cause. Lisa has also become a CA volunteer Yours faithfully we will be following up her story in Mrs WVAB the next issue of Tidings. Pencader £2,000

Lucky winners 500 Club £10,000 CA Appeal Anonymous £20.35 Dear Colostomy Association £1,000 Anonymous £40.70 The committee of MORS (Men of Rose Anonymous £40.70 St) met recently to decide on the Mrs Ball of Southport £40.70 disbursement of funds to local Mrs Denton of West Bridgford £20.35 charities. At the request of Mr Bill Mrs Hensman of King’s Lynn £81.40 Watson we have agreed to support the Mr Herpe of Oxted £81.40 Colostomy Association Appeal, please Help us to raise funds Mr Pratley of Hampton £203.50 accept our donation of £100 for this for the following:- Mrs Vickers of Redcar £407.00 purpose. Mrs Wright of Salisbury £20.35 • Publicity Materials There are still a few more place left Yours sincerely • Volunteer Support Materials in the 500 Club - why not join in Dr. DNS • Patient and Healthcare Literature Reading you could be on list next time! • Professionals Literature • Computers and software Donations - In memory Donations - Legacies Please mark your donation CA Appeal - thank you Diane Sybil Burchett £210.00 Mrs Brenda Meggison £1035.40 Ethel Sheppard £6699.25 Mrs Gerda Czajko £1000.00

TIDINGS| SUMMER2009| 7 OSTOMY COMMUNITY Taking a look at.... World Ostomy Day 2009

World Ostomy Day 2009 About WOD 2009 • newspaper and magazine announcements, advertisements and (WOD 2009) Promoting World Ostomy Day is articles, will take place on an ideal forum to let the general • publication of informative handout community know what needs and materials and brochures, 3rd October 2009. aspirations Ostomates have. • audio and video announcements and films, “Reaching Out” - the theme for WOD • lobbying activities, official The theme for WOD 2009 2009 suggests ostomates from all Government proclamations and joint walks of life reach out to help others activities with allied agencies and is “reaching out” and in doing so help to educate their professional health organisations. the idea behind the day local communities to understand the needs and aspirations of ostomates As part of WOD 2009 there will also is to raise awareness of and their families. be an International Photographic Competition sponsored by Hollister the part Ostomates, What are the aims of World called “The World Ostomy Day Ostomy Associations, Ostomy Day 2009 Photo Contest”. The theme of this competition is to indicate that having Support groups and Health The aim of World Ostomy Day is a stoma does not stop ostomates to improve the rehabilitation of leading a full and active life. professional organisations ostomates worldwide by bringing to play in the rehabilitation the attention of the general public Entries for the competition will be and the global community: accepted from ostomates or non of Ostomates in the ostomates but must show ostomates general community. • The life situation of ostomates being involved in some activity or • The contributions of Ostomy other. Associations and Ostomy Professionals Entry forms and criteria including • The value of the multidisciplinary closing dates and where to lodge approach in ostomy care - entries for both competitions are teamwork available on the IOA Website: www.ostomyinternational.org Coloplast will be promoting World Ostomy Day 2009 by re-introducing the ”Coloplast Merit Award” - the Joint initiative for aim of the award is to encourage the World Ostomy Day 2009 spread of enterprising initiatives of National Ostomy Associations to other The CA is working as part of a joint member Associations throughout the initiative with the other patient world. organisations IA and UA on a National Awareness Campaign There will be three regional contests: here in the UK. The advert Kind thanks go to Peter McQueen for • Europe opposite is part of this campaign. supplying the background information • The Americas for this article about WOD2009 • Asia & South Pacific There will also be promotional events taking place during Peter McQueen Entries will be accepted from Member September in shopping malls in - WOD 2009 Co-ordinator Countries of IOA and prizes will be Belfast, Manchester, Glasgow and World Ostomy Day given, there will also be three culminating in Birmingham encouragement awards. on Saturday 3rd October. E-mail: Pin badges will be available soon. [email protected] Some of the suggested activities to promote awareness follow:- • educational programmes, For further information, please seminars, support meetings and contact the office on: demonstrations/displays, 0118 939 1537 • electronic information networks,

8 | TIDINGS| SUMMER2009 Saturday 3rd October 2009 W orld Ostomy Day

you can make a difference World Ostomy Day takes place every three years, this year it is being celebrated on the 3rd October 2009. The worldwide campaign in the lead up to this day is designed to raise awareness by highlighting to the general public and global community the challenges faced by Ostomates, their courage, needs and aspirations. This year’s theme is "Reaching Out". For more information visit: www.ostomyinternational.org/WOD2009.htm

Pin badges are available from the Colostomy Association for a small donation. For more details contact: 0118 939 1537 FEATURE OPEN DOOR dedicated to stoma care Christine Hyde RGN colorectal nurse specialist and team player in the hospital and the community

Tidings hit the road again… and what a day it was, blue skies, warm summer sunshine and light traffic on the M4 - incredible! As part of our Open Door series Tidings was invited to meet Christine Hyde RGN and Colorectal Nurse Specialist at The Hillingdon Hospital, Middlesex. Christine has written many articles and also co- authored a book with her friend and colleague Pat Black entitled Diverticular Disease.

10| TIDINGS| SUMMER2009 Editors Comment

A big thank you to Christine for opening the door to Tidings, for giving up her own time and for sharing her story with us. Watch this space as Christine has agreed to work on more articles with Tidings in the future.

Tidings interviews Christine Hyde - an experienced and caring member of the Specialist Nursing Team - Hillingdon Hospital

Central Middlesex Hospital (headed ostomy) and coined the term by Sir Francis Avery Jones – a “enterostomal therapy.” The two physician with a special interest in established the first enterostomal gastroenterology). Stoma care nursing therapy-training programme, later was in its infancy at this time and named the R.B. Turnbull Jr., M.D., appliances were few and basic. Skin School of Enterostomal Therapy care and accessory products as we Nursing. This development led to a know them today were almost non- new way forward for the care of existent. patients with a stoma – a programme of helping ostomates adjust to living Christine said, “As a young student with their stoma. nurse I was often unsure of how to treat stoma patients and hoped they In the UK this new development was were discharged quickly.” reflected by an increasing awareness that patients with a stoma required The issue of stoma care support for specialist care whilst in hospital and ostomates was not really addressed that on-going support needed to be until the late 1950’s when it was continued long-after hospital pioneered by Rupert B. Turnbull, Jr., discharge. Christine talked about early M.D, a colorectal surgeon at the stoma care and the work of Sir Cleveland Clinic in the US. He learned Francis Avery Jones (see page 12) Arriving at Hillingdon Hospital NHS that one of his former ileostomy at the Central Middlesex Hospital and around mid morning the place was the contribution he made to buzzing with activity, just what you 1954...Norma Gill enters the gastroenterology within the hospital would expect from a busy NHS Cleveland Clinic Hospital, Ohio and throughout the UK. Hospital. The sliding doors of the severely ill, meets Dr. Rupert foyer opened to reveal a frenzy of Turnbull, Jr., to discuss the After time spent at the Central patients, visitors and staff all walking possibility of an ileostomy to save Middlesex Hospital and a stint in in different directions. Stepping up to her life. After nine weeks and Neurology and A&E as a Sister, reception Tidings was met by a very several surgeries, Norma begins a Christine went to work as an friendly hospital volunteer and was new life. Wanting to give back to Occupational Nurse for Heinz. At this booked in as a visitor by an equally society, she contacts several point Christine took a break from friendly and welcoming receptionist. surgeons offering to assist with nursing to raise her family but found Directed to the seventh floor, Jersey patient education. herself drifting back into nursing in ward - Tidings was taken by a 1980, this time working in the private member of staff to the Colorectal and Norma Gill - became the first sector at the Chiltern Hospital in Great Stoma Specialist Nursing Team offices, president of WCET (World Council Missenden. The hospital offered her was greeted with a warm welcome of Enterostomal Therapists) in 1977 hours that were compatible with and a coffee, then it was down to bringing up a young family. business… patients, Norma Gill, was assisting Tidings asked Christine how she got Christine Hyde was just eighteen stoma patients in her hometown of involved with stoma care and she when she began her career as a Akron, Ohio and so he decided to replied with a humorous tone, “One student nurse in the 1960’s. Once offer her a position as the world’s first day I was caring for a stoma patient qualified, she worked in the full-time enterostomal therapist (a when a very bossy stoma care nurse Gastroenterology Department at the nurse who cares for patients with an came and gave me a pasting but

TIDINGS| SUMMER2009| 11 FEATURE OPEN DOOR

“when I meet a new patient I tell them that they are mine for life, no patient is ever discharged – we are here for them, they can just pick up the phone, there’s no such thing as a silly question and they can come in if they want to”

afterwards realising my potential she have a 300 year history, you can read About...Sir Francis Avery Jones took me under her wing and all about it on their website – MD, FRCP; Kt, CBE (1910-1998), encouraged me to head in the www.salts.co.uk) Today, Salts Physician and gastroenterologist direction of stoma care”. continues to develop, manufacture St Bartholomew’s, Central and supply stoma care products. Middlesex and St Mark’s Christine commented, “The more I Christine worked for Salts for nine Hospitals. learnt the more I wanted to work years and went on to become Clinical with stoma patients. They are special Manager, looking after nurse patients. Stoma care pulls you in, sponsorship in the south of Opening a gastrointestinal unit at once you dip your toe in the water Birmingham until she was made the Central Middlesex Hospital, Sir you just end up getting in deeper and redundant in 1998. But for a lady Avery-Jones almost singlehandedly deeper”. Recognising the need for with her experience it wasn’t long built up the first British clinical and training Christine asked if she could before another post came her way research base in that specialty. be sent to do a specialist course at and in 1999 she took up her present From Britain and many other the Royal Marsden Hospital known as post at The Hillingdon Hospital, which countries came hundreds of young a ‘980’ (ENB course 980: Principles of was one of the sponsored posts, she doctors, each welcomed by Avery Stoma Care). had previously looked after. to the unit and his home—and many went on to head new similar After her course Christine started Talking about her work Christine units elsewhere. They were taught looking around for work within the discussed the new guidelines in place NHS. At that time there were not for referral of patients with suspected how to be calm, caring, and many jobs available so she went to lower G.I cancer and mentioned that competent clinicians, methodical work for Salts & Son Ltd as a stoma all patients should have access to and indefatigable, questioning the care company nurse. Christine individual support and guidance from new and evaluating the old. covered sick leave and holiday relief members of their specialist colorectal for most of the London Hospitals, cancer team from the outset of their He attended the inauguration of High Wycombe and Banbury. Soon treatment. the British Society of learning that all hospitals were the Gastroenterology in 1937 and same, she said laughing, “As a stoma Christine’s department is patient helped start Gut in 1960, care nurse all you need to know is friendly and this is her overview of becoming its first editor. where the cupboard is - it doesn’t a patient’s referral journey:- matter where you are!” • Patients are referred by a GP, a He had a special interest in Christine explained a little about Salts practice nurse or via social services nutrition and recognised early the & Son Ltd - in the early days of within 24hrs to see a consultant importance of dietary fibre; his ostomy care, Professor Lionel Hardy within a two-week period. unit at the Central Middlesex returned from the US with a rubber Hospital (there is now an Avery bag which was being used ‘over • Christine attends the patient Jones Postgraduate Medical Centre there’. Professor Bryan Brooke from appointment with the consultant or and an annual Avery Jones lecture) Birmingham General Hospital, full of a senior registrar. is now the Department of enthusiasm for the work the Gastroenterology and Nutrition. Americans were doing with colostomy • A history of symptoms is taken. patients took the bag along to Salts. He asked Salts if they could make a • Investigations take place within a collection of devices similar to those 2-3 week period. being produced in the US. An approach was made to the American • The patient is monitored quickly and manufacturer led by Ted Salt (father then once diagnosed they are either of the current generation) for a supply referred back to clinic or discharged. or licensing arrangement but this proved fruitless. So, Salts did some • On being given a diagnosis of basic development work and colorectal cancer patients must have produced a limited range of their operation within 31 days. ‘handmade’ bags. (Salts as a company

12| TIDINGS| SUMMER2009 Guidelines for urgent referral of patients with suspected cancer that there is no time limit to changing of the lower gastrointestinal tract their bag, suggesting it becomes part of their daily routine just like putting Lower gastrointestinal cancer affects the lower part of the digestive system. on their make-up or shaving. This includes the colon, the rectum and the anus. A patient with symptoms of colorectal or anal cancer should be referred by the GP to a team Talking about going home - Christine’s specialising in lower gastrointestinal cancer. If your symptoms are not clear, department provides going home and you are not overly anxious, it is reasonable for the GP to treat the packs containing helpful booklets and symptoms and see if they get better. advice leaflets. She tells patients that Urgent referral colitis or who have had this disease they should always listen to their Urgent referral should be made in in the past (this disease involves body, not what their brain tells them. patients: inflammation of the colon and Recovery is not always straightforward • aged 40 years and older, with rectum). Patients with this disease and there may be peaks and troughs. rectal bleeding with a change have a higher risk of colorectal It is normal to be tired and exhausted. in stool frequency or stool cancer. The GP should agree a consistency that has persisted for follow-up plan with a specialist and Eat what you like and give yourself a 6 weeks or more offer it to the patient. The aim of break as you’ve been through a tough follow-up is to spot cancer early. time. • aged 60 years and older, with rectal bleeding persisting for There is not enough evidence to Finally, as the interview was closing 6 weeks or more without a change suggest that the GP should use Christine added that she would prefer in bowel movements and family history of colorectal cancer as surgeons not to suggest to patients without anal symptoms (anal a factor when making a decision that they can have a reversal as this is symptoms include discomfort, about referral. not always the case and can give itching and lumps as well as pain) people false hopes. She said, “some Tests • aged 60 years and older, with a Any patients with unexplained patients are happy with their change in bowel movement with symptoms related to the lower colostomy and don’t want to undergo looser stools and/or more frequent gastrointestinal tract should be surgery again,” she felt patients stools persisting for 6 weeks offered a digital rectal examination. should have their say and be given or more without rectal bleeding This is usually carried out by the GP the choice to say ‘No’ if they wanted and involves the GP feeling inside to. • of any age with a lump in the the rectum with a finger to check for lower abdomen on the right side anything unusual. Tidings will be back to interview Christine further. As Christine points • of any age with a lump in the A blood test may be carried out by out herself, “I have over forty years rectum the GP. This will help to identify anaemia which may indicate lower experience that I would like to be • who are men of any age with gastrointestinal cancer. The results able to pass on to the up and coming unexplained anaemia of this test will also be useful for the generation of nurses.” Tidings will specialist if you are being referred. certainly help Christine to do just that! • who are non-menstruating women with unexplained Apart from an abdominal or digital anaemia. rectal examination and blood tests, GPs should not carry out any Risk factors other tests as they may delay The GP should follow up patients referral. with a disease called ulcerative

Christine said, “patients who require a When a patient comes in for their stoma - whether temporary or operation Christine greets them and permanent - are counselled before takes them through what will happen, surgery and after surgery. In fact when telling them that she will see them I meet a new patient I tell them that after their operation. they are mine for life and no patient Editors Comment is ever discharged – we are here for Soon after the operation self-care is them, they can just pick up the taught keeping it simple and basic, a If you would phone, there’s no such thing as a silly transparent one-piece pouch is used. like to be featured in our question and they can come in if they Tidings asked why a transparent one- Open Door Series please want to.” piece pouch is used and Christine contact us replied “it is easy for the doctors, e-mail: Christine talks with her patients about nurses and patient to see the stoma [email protected] their diagnosis for however long it and prevents the bag being or write to: takes and provides reassurance and repeatedly removed to check to see Colostomy Association supportive information showing them if it is working. This has the added 2 London Court East Street examples of appliances and because benefit of the skin being protected. Reading RG1 4 QL of her wealth of experience puts The nurses on the ward also feel patients at their ease reducing their confident with this type of appliance.” fear of the unknown. Christine felt patients should know

TIDINGS| SUMMER2009| 13 SHOWCASE NEW STOMA CARE PRODUCTS AND SERVICES Update on new stoma care products and services If you have seen or heard about a product and you are not sure where to find out about it and want to obtain a sample why not email your query to [email protected]

CliniMed stomas, the washers can be folded security by minimising the risk of CliniMed are pleased to announce and used as a filler to help prevent leaks, especially at night. their new look website. unwanted leaks and potential skin Visit: www.clinimed.co.uk breakdown and will remain sticky Only a single sachet is required, and even when rolled and stretched Pelican Perform will not affect the OstoMART repeatedly. colour of your output or cause any OstoMART are pleased to introduce staining. their NEW Cool Comfort Unisex Light Control Support Garment. The To request your complimentary Cool Comfort is available in three sample please see our advert within styles (Belt, brief and boxer) and in a this Tidings magazine. choice of Black or white. We believe Simply e-mail: these are the only garments of their [email protected] kind to be MRSA Resistant for 50 or alternatively call the Freephone washes at 40ºC. The fabric is Sample Request Helpline Hydrophilic moving sweat and on: 0800 052 7471. moisture from the skin making the garments quick dry and breathable. Salts Medilink The garments are non-restrictive Over the years, Salts Medilink has allowing maximum movement and earned a reputation for offering an comfort. exceptional level of care, but it’s never rested on its laurels. Salts has The Cool Comfort Range is available The Varimate Resist ‘eye shaped’ continued to grow and adapt in dual sizes of Small/Medium, Washers have an 18mm starter hole Medilink in line with customer needs, Large/XLarge and XXLarge/XXXLarge which can be stretched to 35mm and and now this much-loved service has in convenient packs of three. are available in packs of 10. Varimate been given a fresh new image to Very competitively priced and Resist ‘eye shaped’ Washers are mirror the ongoing improvements. represent good value for the NHS. available on FP10 prescription. Designed to represent “Your Link to They are available on prescription If you would like to receive a Better Care”, the new logo uses from the 1st June either direct from sample, please call the Peak linking arms to form the “M” in OstoMART or from your usual Medical helpline on Freephone Medilink. Customers will soon start supplier. 0800 6520424. to see this bold and distinctive new logo emblazoned on corporate Peak Medical Pelican Perform literature, product literature, Peak Medical has launched an Pelican Healthcare is pleased to advertising and packaging designs. addition to the popular Varimate announce the launch of Pelican range of products. Varimate Resist Perform, a Solidifying Agent which is Customers of Salts Medilink are now ‘eye shaped’ Washers are, as the available on prescription now. entitled to receive 4 bottles of hand name suggests, resistant to moisture sanitiser each year. There is also a and the aggressive output from faecal Pelican Perform works exceptionally team of Community Stoma Care stomas. They are also resistant to the well for anyone with a liquid/high Nurses who cover many areas of effects of acid urine. output stoma to increase security, England and Wales, offering free improve filter performance and offers advice. For further details on nurse These stretchable, mouldable washers odour reducing properties. coverage or any other aspect of the can be stretched to twice their service, please call Freephone 0800 original size and will remain in the Pelican Perform has been specifically 626388. desired shape. For partially retracted designed to improve confidence and

Why not write or email the editor about what stoma care products work for you and why or comment about your delivery [email protected]

14| TIDINGS| SUMMER2009 PRODUCT FOCUS FILTERS AND FILTER COVERS

What are those sticky labels for and why are they in my box of stoma bags - do I need them?

Well the answer is... enough to separate the walls of the others who produce very little gas at bag. This combined with the all. A persons’ level of gas production although they look like consistency of the waste can result in can vary from day to day. In extreme sticky labels they are in fact a different problem - the waste does situations ‘ballooning’ or ‘pancaking’ not enter and fall to the bottom of can still result. filter covers the bag as it should, instead it masses around the stoma itself. This is called Here are some practical solutions that Ostomy bags as we know are there, ‘pancaking’. A small amount of gas in can deal with these problems. For primarily to collect bodily waste. The the bag can reduce this problem. ballooning, wearers of two-piece waste is usually made up of a mixture appliances can discretely partially of solids, liquid and gas and varies Manufacturers have provided filters separate the bag from the flange to dramatically from one person to the on both closed and drainable bags to reduce pressure. Some one-piece next, and for some from one day to allow a means to vent the gas to the wearers have described ‘puncturing’ the next. The type of output is outside of the bag. The challenge to the bag slightly to reduce ballooning dependent on several variables diet, the manufacturer is two fold. but this should be done with extreme medication, metabolism, and fluid care, and again discretely. intake. The first being how to remove the odour from the gas stream. This has For ‘pancaking’ there is help at hand In addition, the waste that collects in been achieved by the introduction of as far as controlling the escape of gas the bag, being the breakdown a filter into the design of the bag. The from the bag is concerned. products of the food we eat, contains filter is made from activated carbon in Manufacturers normally supply a few chemical bi-products which can one form or another, and has usually sheets of self-adhesive labels (see generate a lot of odour, which is been treated to make it very effective illustration) usually sufficient for each released into the air inside the bag. at removing or reducing smells. bag in the box. The backing film will These bi-products contain either a lot Typically the gas will need to flow not allow gas through, and so if the of sulphur, giving a characteristic bad through the carbon filter to escape. label is applied over the exit aperture egg smell, or organic molecules called Even a short passage through the of the filter, gas can no longer escape. indoles and skatoles, which result in a filter should be sufficient to take away When the level of gas production is cabbage type smell. the odour. The carbon surface is very very low, the gas can be retained porous and traps odour in just the inside the bag with one of the labels Most bags are made from film-like same way as a filter would in a in place. As the gas slowly builds up materials specifically designed to keep ‘cooker hood’ except more efficiently. the walls of the bag separate allowing the smell inside the bag. The problem waste to fall to the bottom of the bag, is that bags have a fixed capacity, and The second is more of a technical hopefully minimising ‘pancaking’. so when, in addition to the solid and challenge for manufacturers, and that liquid waste, the body also produces is how to control the rate of gas flow Article contributed by gas, the capacity of the bag can be through the filter. The rate must be Dr Rory Smith, Director of Research overwhelmed. (Our digestive systems slow enough to allow the carbon to and Development at Welland Medical work like a fermentation plant and do its job of removing odour, but fast some gas or ‘flatus’ is an inevitable enough to deal with potentially high consequence). volumes of gas. The flow rate can be controlled by how densely the carbon Some people produce a lot of gas in the filter is packed, the length of quite suddenly, while others produce the passage from the inside to the Editors Comment very low levels indeed. Both are outside of the bag and the size of the perfectly normal. inlet and outlet apertures on the filter. In future issues product focus Each of these can be accurately will be looking in depth at If a lot of gas is produced rapidly and defined in design and production. other stoma care products if you enters the bag, without any means of have any questions or suggestions on escape, the bag will inflate very However the over-riding challenge is how a product could be quickly. It may become very that once the filter design is fixed, the improved why not uncomfortable and in some cases flow rate will also be fixed. get in touch via could even become detached from Manufacturers try to set the flow rate e-mail: the body (the pressure in the bag to deal with the ‘average’ flow rate. editor@colostomy association.org.uk causing the flange to lift) resulting in The problem is that although the flow or write to: leakage and possible spillage. This is rate should work well for most people Colostomy Association called ‘ballooning’. with ‘average’ levels of gas production, there will always be some 2 London Court East Street On the other hand, some people people who produce high levels of Reading RG1 4QL produce very low levels of gas, barely gas, sometimes very quickly and

TIDINGS| SUMMER2009| 15 OSTOMY COMMUNITY GREAT COMEBACKS INSPIRATIONAL AWARD WINNERS

The GREATCOMEBACKS ® Programme Announces 2008 National Award Winners National Awards Recognise Achievements of Linda Lewis-Garwood from Devon

she knew it would significantly alleviate her suffering. ‘I was totally shocked and my confidence plummeted. In June 2006, I also underwent radio and chemotherapy which failed and for me was an absolute nightmare. I was read my last rites twice. I lost five stone in weight but in time regained my strength and appetite. Today I feel comfortable with my health and now am able to do even more than before, including swimming, going to the theatre, travelling and socialising with friends. One day I even hope to complete Route 66 on a Harley Davidson! Whilst I am living life to the full, it is important to recognise that there are others still encountering daily challenges. I am actively involved with local charities and am From left to right - Monty Taylor - CA Chairman, Linda Lewis-Garwood and Andrew Thelwell currently trying set up a support Linda Lewis-Garwood, 57 These awards are sponsored by group. “I feel honoured to have ConvaTec, and supported by the won a Great Comebacks® Award from Devon won Colostomy Association, the IA and I hope that other stoma patients (Ileostomy Association), UA see what I have achieved and feel the Colostomy Great (Urostomy Association), the Prince's inspired to reach their own goals.”

® Foundation for Integrated Health and Comebacks Award. the World Council of Enterostomal The awards were Therapists (WCET). The other 2008 Great Comebacks® regional announced during Great Comebacks® is a patient support programme that recognises recipients include: the inspirational achievements of a ceremony at ® adults and young people who prevail • Great Comebacks 2008 One Whitehall Place over debilitating intestinal diseases Overall Winner and Young and ostomy surgery. The Great Persons Winner: in London. Comebacks® Awards encourages Jade Whitehouse, 14 stoma patients, family members, from Birmingham carers, specialist nurses and friends to nominate an individual who has • Ileostomy Winner: made a recovery from stoma surgery Krystyna Kraus, 53 that enables them to achieve their from Selby goals and whose stories can help inspire others and provide • Urostomy Winner: information to those faced with life- Ian Bagwell, 61 changing surgery. from Preston

Linda Lewis-Garwood, mother and former nurse was diagnosed with colorectal cancer early 2006 and in February underwent stoma surgery as

16| TIDINGS| SUMMER2009 Softima® Closed and Softima® Convex

Experience Quality. The new Softima® Closed and Convex range from B. Braun. Experience Choice. Either the gentle convexity flange for retracted stomas or the security of flat flange for extra comfort. Experience Freedom. The Softima® range is so soft and discrete that you will forget you are wearing a pouch. Why not experience Softima® today? Either call 0800 163 007 or fill in the coupon below and return using Freepost.

B. Braun Medical Ltd • OPM Division • Thorncliffe Park • Sheffield • S35 2PW • Tel (0114) 225 9000 • Fax (0114) 225 9111 • www.bbraun.co.uk XX-STA-08-08 To sample the better degree of comfort offered by Softima® Closed or Convex Closed simply fill in the form below and return using the FREEPOST address. Name: ______Please send me a sample of: Address: ______Convex Flat ______Postcode: ______Beige Transparent Telephone: ______Stoma size ______Email: ______XX-STA-08-08 B. Braun Medical Ltd • FREEPOST SF10771 • Sheffield • S35 2FZ SPECIAL FEATURE - Addis Ababa Fistula Hospital Pathways to a colostomy Enabling Ethiopian women to live independent lives

The history... Addis Ababa Fistula Hospital

The Doctors Reginald and Catherine quickly began Hamlin to learn everything they could about obstetric fistula, a condition that had In the late 1950s, all but disappeared in the United Professor Gordon Williams two young States in 1895, when the first fistula MS FRCS doctors, Reginald hospital closed its doors in New York. Medical Director and Catherine The Hamlins perfected a surgical Addis Ababa Fistula Hospital Hamlin, were technique to mend the injuries, while dedicated continuing to treat a broad range of Professor Gordon Williams has obstetricians obstetric cases. In their first year in been a friend of the Addis Ababa living and Ethiopia, the Hamlins treated 30 working in Catherine's native fistula patients. Fistula Hospital for more than 20 Australia. Early in their careers, the years assisting with Urological couple practiced gynecology in The founding of a hospital surgery on a voluntary basis Sydney, but they were eager to seek Through first hand experience, the sometimes once or twice a year. out and aid the women who needed Hamlins quickly became aware of the Professor Williams retired from them most. suffering endured by women with Hammersmith Hospital in 2007 fistulas. Fistula victims are usually and went to Ethiopia to take up They got their chance in 1959, when shunned so severely due to their odor that even other patients refuse to be the post of Dean at a newly they were called upon to come to Ethiopia and set up practice in a near them. Reginald and Catherine formed Medical College but has hospital in the capital city of Addis knew the fistula women deserved a since become Medical Director at Ababa. When they arrived, Reginald hospital of their own. The Hamlins the Addis Ababa Fistula Hospital. and Catherine discovered a very poor worked for more than a decade to country with almost no resources for establish a fistula hospital, even The Addis Ababa Hospital was expectant mothers. The Hamlins through a military coup when most founded by Catherine Hamlin planned to open a midwifery school foreigners fled Ethiopia. Finally, in 1974, the Hamlins opened the doors and her husband in 1974 and at the Princess Tshai Memorial Hospital and to stay for three years. of Addis Ababa Fistula Hospital. It has provided free reconstructive remains the only medical centre in surgery to thousands of African Pioneering fistula treatment the world dedicated exclusively to women with fistulae caused by On the evening of their arrival, the fistula repair. difficult births. Hamlins were doing their best to settle into their new home, when a "Saint Catherine" Gordon Williams has done, and fellow gynecologist came to visit. That Reginald Hamlin worked diligently at continues to do, valiant work for doctor described obstetric fistula to Fistula Hospital until his death in the Hamlins, neither of whom had 1993. Catherine Hamlin, now 84 this very special hospital. It was ever seen an obstetric fistula before. years old, has been nominated for a he who in 1992 persuaded the "To us they were an academic rarity," Nobel Peace Prize, and the list of her BBC that it should make a Catherine recalls in her book, The humanitarian awards is impressive. documentary about the hospital Hospital by the River. She continues to oversee the work of and the work of Reg and the hospital and can frequently be Catherine Hamlin who have Before the Hamlins came to Addis found in the operating room cared for the young victims of Ababa, there was no treatment performing the delicate fistula repair surgery she pioneered more than 40 unattended childbirth since their available for fistula victims anywhere in the world. Most such injured years ago. . arrival in Ethiopia in 1959 women – and there were thousands – had suffered in silence for years.

18| TIDINGS| SUMMER2009 Professor Gordon writes...

Since its opening in 1974, the Addis of the problems which occur. 15% Patients with a urostomy or Ababa Fistula Hospital and its four develop paralysis of their feet due to colostomy are usually unable to outreach hospitals across Ethiopia damage to the nerves in the pelvis return to their village, even though have treated over thirty-five thousand and as a result can not carry out the with our four - soon to be five - women with a vesico-vaginal or recto- duties of a woman such as fetching outreach centres, necessary vaginal fistula. 50% of the women water and firewood and working in appliances could be made available. treated are teenagers. A fistula is a the fields. In 50% of the cases, the To deal with this problem and to hole between the bladder and the husband divorces them because of enable these women to live an vagina or the rectum and the vagina the smell from the total incontinence, independent life, we have built a or sometimes both. It is invariably due their other physical disabilities and in village just outside Addis Ababa to prolonged obstructed labour when many the inability to have further where they are taught a trade - this the baby’s head gets stuck in the children. can be dairy farming (so they can sell bony pelvis and causes an area of the the milk or make butter or cheese), bladder or rectum to die. When these Injuries which occur in Ethiopia are cafeteria work (they can learn to dead tissues separate, the patient more severe than those which occur cook, wait at table, and prepare becomes totally incontinent of urine in other developing countries due to a meals), in a spice mill (where they and/or faeces. combination of early marriage, poor can sell ground spices), needlework, tailoring or any aspect of horticulture. They are also taught the skills necessary to be able to buy and sell.

Recently, because of the changes in the way appliances are ordered and provided, we ran out of colostomy appliances, but after an appeal to the members of the Colostomy Association we were very rapidly provided with a temporary solution to our problem and could confidently await our main order from the manufacturers to come through. With changes in health care provision in the UK, I have no doubt that many appliances may be superseded by new devices. We can use anything that you no longer require. We can also arrange to have unwanted appliances to be flown out.

50% of the women treated at the hospital are teenagers - patients with a urostomy or colostomy are often unable to return to their village, even though with our four - Editors Comment soon to be five - outreach centres, necessary appliances If you would like to learn more about could be made available. the Addis Ababa Hospital visit: www.hamlinfistulauk.org or wish to help Professor Gordon Williams MS FRCS Prolonged obstructed labour occurs in nutrition and almost total absence of please contact the developed societies in about 5% of health care in rural areas. In patients Colostomy Association women and is easily resolved by with a rectal injury, it is not and we will put you Caesarean section. In the rural areas uncommon for a very tight narrowing in touch with him. of the developing world such a facility (a stricture) to occur just above the is not available and these young hole between the rectum and vagina. e-mail: women spend an average of four In those cases, and, where there is a cass@colostomy association.org.uk days in labour and sometimes up to very large rectal defect a colostomy is or write to: nine days. The majority of births take necessary to allow resolution of Colostomy Association place in their village where there is no infection and relief of the obstruction 2 London Court East Street medical supervision. caused by the stricture. The degree of Reading RG1 4QL scarring caused by the injury is or telephone head office: The holes in the bladder/rectum sometimes so great that the 0118 939 1537 draining into the vagina are just part colostomy has to be permanent.

TIDINGS| SUMMER2009| 19 ASPECTS OF MEDICAL TREATMENT TALKING ABOUT PROLAPSE

Stoma Prolapse Pat Black M.Sc, RGN, RCNT, FETC, FPA Cert. Specialist Nursing Team (Colorectal and Stoma Care) The Hillingdon Hospital NHS Trust Middlesex

A prolapse of the A prolapse is not an uncommon When a prolapse is managed complication and can be found alone conservatively the patient will need stoma can be very or in association with a parastomal frequent supervision by the stoma hernia. When a temporary or loop care nurse and the prolapse and alarming for the patient stoma, either colostomy or ileostomy, appliance regularly evaluated. Help and can occur without is not fixed by sutures there is always after the prolapse has been reduced the risk of either or both of the loops can be obtained in the form of a any apparent reason. prolapsing. support belt across the stoma and a specialised plastic stoma cap that is Prolapse can be Often in a loop stoma, the part of the held in place by the belt. Many seen more frequently stoma nearest the back passage ostomy product manufacturers now (distal segment) is most likely to make specialist pouches to help in in patients who prolapse. the management of both herniated have temporary and prolapsed stomas. Common reasons are: loop stomas, either • An excessively large opening in the Surgical Intervention abdominal wall, which may be the This is only needed if the blood colostomy or ileostomy. result of surgical technique or an supply to the prolapsed piece of A stoma prolapse oedematous bowel at the time of bowel is compromised or if there is a construction. bowel obstruction associated with is when the bowel • Inadequate fixation of the bowel to the prolapse. Surgical correction the abdominal wall. consists of cutting away the excess telescopes out of • Poorly developed abdominal bowel and removing it and re- the skin opening muscular support (as in infants). suturing the stoma to the abdominal • Increased abdominal pressure from wall. Alternatively, the stoma may be making it longer disease, coughing, sneezing and re-sited and if previously a loop in length. crying (such as in infants). stoma, an end stoma constructed. Conservative Management Ongoing care It can be a distressing and frightening Because the prolapsed stoma will situation for the patient to experience extend into the pouch and will a stoma prolapse, which may cause increase in diameter the mucosa them to rush to the Accident and (outside) of the stoma may rub and Emergency department. Reassurance bleed. This may also cause that the condition is not serious is mechanical trauma and interference needed and information on how the with the pouch seal. Two-piece patient may help him or herself is appliances should be used cautiously required. to prevent the prolapsed stoma becoming pinched between the Conservative management is often flange and the appliance when the way forward for the patient to securing. manage a prolapsed stoma. Often the prolapse can be reduced by the patient lying down on the bed for Editors Comment about 20 minutes to relax the If you are experiencing any problems abdominal muscle and reduce the with your stoma such as prolapse intra abdominal pressure. Gentle always consult your stoma care nurse. pressure applied continuously against the prolapsed distal loop will aid the If you have had a prolapse and bowel to return to the intraperitoneal would like to share your experiences space. If the prolapsed bowel is please contact Tidings; swollen a cold compress (ice cubes e-mail: in a plastic bag wrapped in a towel [email protected] and applied to the stoma) will reduce or write to: the swelling. Colostomy Association 2 London Court East Street Reading RG1 4 QL 20| TIDINGS| SUMMER2009

OSTOMY CARE CONTINUITY OF STOMA SUPPLIES

Hospital to home continuity of stoma care supplies...

The transition On discharge from hospital the to pay for their prescriptions or stoma care nurse should ensure that stoma equipment, however those from hospital to home the following information is given with a temporary stoma do have to can be a stressful time to the patient, family or caregiver:- pay unless they are eligible not to, for example because they are over 60 or for the stoma patient • Pass to the patient contact details on benefits because of low income. and their family. of the stoma care nurse/s and the If you do have a permanent stoma hospital stoma care department – in and are under the age of 60 you Discharge procedures case there is a need to get in touch should fill in form FP92A to apply for should ensure that when at home a medical exemption certificate, • Inform the patient’s GP, district ticking the section stating you have ‘a continuity of care nurse and other community services permanent fistula’ which requires an is transferred from of the return of the patient to the appliance. Most stoma care nurses community carry the form which will require your the hospital to the • Give the contact details of the signature and that of your GP or community smoothly district nurse to the patient hospital doctor. It is preferable for • Explain to the patient that they will this to be done in hospital, rather and that all parties receive a home visit within a 48hr than putting you in a position where involved in this period to assess how well they are you have to visit your GP for adapting to ‘living with their stoma’ verification that your stoma is transition period • Explain how to correctly store permanent and complete a form are in communication appliances and accessories to the FP92A on your return home. Prior to patient and give them a list of discharge your stoma care nurse will with one another equipment they are using - this contact your GP to advise of your and the patient. should include - manufacturer and ongoing prescription requirement. suppliers details, product order code or number/description of appliance When it comes to leaving hospital and sizes/number of items in a box most nurses will send you home with or pack enough pouches to last a few days • Explain to the patient how to obtain and will have informed you how to stoma care supplies once they are obtain further supplies. If you are to home be discharged over a weekend, it is important you have enough supplies The last thing any patient should be to cover any emergency. (we often worrying about when they get home drop the first few pouches as we is how to obtain future stoma care attempt to cope on our own). If you supplies and accessories. So, let’s find yourself in difficulty or need take a look at how to obtain your further supplies, contact the ward stoma care supplies. you were discharged from – they should be able to help. Whilst in hospital your stoma care nurse will have taken good care of On your return home, you may, as you, providing all the necessary items has already been discussed, have had needed after surgery. While your your stoma supplies organised. If not stoma settles down, you will be you now have a few choices of how taught self-care and be advised of to obtain your stoma supplies. Your potential problems that may occur GP should have already been on your return home and how to informed of your discharge so your cope with them. prescription will be available – it is always advisable to check if this is Your stoma care nurse will discuss the case. your appliance supplies with you and explain the methods of obtaining Choices... your supplies. In the UK people who • You can either, visit your GP surgery have a permanent stoma do not have in person to collect your prescription,

22| TIDINGS| SUMMER2009 which you can then take to a If you start to run low on supplies Ostomy Supplies dispensing chemist of your choice. you should re-order, allowing plenty Some people like to visit their local of time for delivery so you do not run Home Delivery Companies pharmacy, where they are well out. Over the coming months your For a full list of Home Delivery known. (Chemists are working hard stoma care nurse will be monitoring Companies contact: CA Head Office: to provide facilities so patients can the shape and size of your stoma as Telephone 0118 939 1537 or visit: discuss matters in private). it can change as you recover from www.colostomyassociation.org.uk your operation. It is very important and register then go to Find • Or, you can (whilst in hospital or that the pouches continue to fit Information to download our afterwards) opt to have your correctly. Try to assess on a daily Factsheet - Stoma Product Supplies. prescription forwarded to a specialist basis how many you use so you do stoma care supply company, that not not over-order or you may find Convatec - Amcare only dispenses your prescription, but yourself with pouches and flanges Freephone: 0800 885 050 also makes home deliveries. Many that you can’t use. Always check with Email: [email protected] GP’s are happy for you to ask a your stoma care nurse before you Web: www.convatec.co.uk/amcare delivery company or chemist to change any part of your daily regime. collect the prescription on your Bullen Healthcare behalf. Contact: 0800 269 327 Changes Coming in 2010 Email: [email protected] If you are using a local pharmacy – for Ostomists in England Web: www.bullens.com it’s a good idea to check to see if and Wales Charter Healthcare they offer a delivery service, as in Association with Coloplast carrying large boxes of supplies is not Freephone: 0800 132 787 always easy, especially if you do not The NHS has been consulting over the past few years on a better way to Email: [email protected] have access to transport. It should be Web: www.charterhealthcare.co.uk pointed out that Pharmacies do not supply stoma goods to ostomists. usually supply complimentary dry This has recently been finalised and Countrywide Supplies wipes or disposal bags, they are also will start to come into effect in 2010. Freephone: 0800 783 1659 unlikely to offer a free cutting service These changes mostly affect the way Email: for your pouches or flanges. Many the supply is administered and in [email protected] specialist stoma care supply general will not affect you directly. Web: www.countrywidesupplies.co.uk companies provide these additional services. They will cut your pouch to You will still be able to use a home Fittleworth Freephone: 0800 378 846 a template that you or your nurse has delivery company or a chemist. You can also expect that all suppliers Email: [email protected] provided, thus ensuring a good fit so www.fittleworth.com helping to reduce leakage and should continue to give you subsequently sore skin. complimentary disposal bags and dry wipes, and cut your pouches for you Ostomart Responder Contact: 0800 220 300 if you wish. They should also have Many ostomists prefer using a Email: [email protected] specialist stoma care supply home qualified staff available to provide Web: www.ostomart.co.uk delivery company, finding this to be advice on caring for your stoma. the easiest and most convenient way Pelican Healthcare of obtaining their supplies. There are One area where there will be less Contact: 029 2074 7000 several home delivery companies that flexibility is that both chemists and Email: [email protected] hold large stocks of every type of delivery companies must have a Freephone: 0800 052 7471 pouch and accessory, so enabling prescription before they send you your pouches, the only exception is if Respond Plus Ltd quick home delivery once the Sister company to OstoMart -Northern Ireland prescription has been received. your GP or stoma care nurse tells them that you have an emergency Freephone: 0800 028 6848 Email: [email protected] Some delivery companies will send situation and that the prescription out your requested supplies will be sent later. This will mean that Salts Medilink immediately, some wait until they you will need to watch your supplies Freephone: 0800 626 388 receive the prescription from your GP. carefully, getting a prescription from Email: [email protected] Either way, the stoma care supply your GP in time for it to be posted or Web: company will deliver direct to your to give the delivery company or www.saltsstomacare.co.uk/medilink.aspx door within a day or two. Most chemist enough time to request and companies have a fleet of vans and collect the prescription on your SecuriCare (Medical) Ltd Freephone: 0800 585 125 discreet drivers, some use a courier behalf. Email: [email protected] service. There is no change to the supply of Web: www.securicaremedical.co.uk goods to ostomists in Scotland. Both methods of obtaining supplies UCI Healthcare are equally as good, it is entirely up Contact: 0800 731 4376 to you to choose the method which Email: [email protected] best suits your needs. Web: www.ucihealthcare.co.uk

TIDINGS| SUMMER2009| 23 STOMA CARE SERVICE PROVIDER CELEBRATES SILVER JUBILEE 1984-2009 Fittleworth’s celebrate 25 years... of discreet reliable and convenient home delivery

2009 is the Silver Jubilee The early stoma appliances required The company continued to grow and bespoke fitting and a new category of finally larger premises were found of Fittleworth Medical Ltd. chemist was created to service this back in Ford. The entire company Today the service requirement, the Dispensing moved in a single day and still Appliance Contractor. These DACs as managed to dispatch orders. The provided by companies they became known, ensured that industrial estate was part of the old like Fittleworth is taken belts, seals and rubber pouches fitted WWII airfield and shortly after moving very much for granted. and leaks were kept to a minimum. into the new premises the police suddenly arrived and evacuated We now expect to Fittleworth started in 1984 and from everyone because an unexploded be able to place an order the beginning was an innovator in the bomb had been found during home delivery of stoma pouches. The building works! for goods, medical modern pouch was more or otherwise over sophisticated than the earlier A number of other dispensing incarnations, but the flanges still licences were acquired and soon the phone or the needed to be cut to fit properly. Fittleworth had 5 Care Centres across internet and Rather than leaving this to the the country. In 2003 the company customer, many of whom find using merged with Thames Valley Medical expect them to small, sharp scissors difficult, gaining several more Care Centres be delivered next day. Jaqueline and Alan Seymour who including those in Reading and founded Fittleworth, decided it would Glasgow and in the following year However this be a valuable and unique service to began offering continence appliances has not always pre-cut each pouch before delivery. in addition to the stoma service. This been the case. This innovation helped get the was followed in 2005 when the company off to a flying start when the business of Homecare, a DAC in doors of the Seymour’s garage in the Keighley, West Yorkshire was picturesque West Sussex village of combined into the Fittleworth Fittleworth opened and the first business. orders were dispatched in the autumn of 1984. Today Fittleworth is still based in West Sussex with a Care Centre in Ford and Alan and Jaqueline had decided from 13 other locations from Glasgow to the outset that Fittleworth would be a Bournemouth, a national distribution company that really did put the needs that allows local delivery using of the customer first. So in addition to company drivers rather than couriers being one of the first to cut pouches, for most customers. they also ensured that deliveries were prompt, discreet and reliable and that Even though the company is now they always had a large stock that much larger than when it started in a was supplied without bias to any garage, it still operates on the ethos particular manufacturer. This founding with which it was founded and prides principle remains true 25 years later. itself on offering a first class service. A By 1994 the company had started to service where deliveries are prompt, grow significantly and was now based discreet and reliable and where in Ford, West Sussex. Although the customer service always comes first company was larger, the small team through practical innovations such our of staff were still as dedicated and samples service, website and the needed to be multi skilled – taking unique World Assist Alliance and Life orders, picking, cutting and packing in Assist initiatives – always finding ways To find out more about the turn. One unit soon had to be to help ostomists live an easier Fittleworth delivery service, please knocked through into next door and lifestyle. contact us on freephone then as room became constrained 0800 378 846, email once again the customer service team If you would like to ask one of our [email protected] or visit our had to be moved to a small unit by nurses for some non urgent medical website www.fittleworth.com Ford railway station. advice then e-mail us at [email protected]

24| TIDINGS| SUMMER2009 Celebrating 25 years of delivering an easier lifestyle with Life Assist

2009 is Fittleworth’s 25th year specialising in the delivery of continence and stoma products. To celebrate we will be launching Life Assist - an opportunity to share all that we have learned over the last 25 years about living an easier lifestyle. We have produced a Life Assist pack with useful hints and tips on a range of ostomy lifestyle issues. These are available free to ostomists. To request a copy please fill in the form below and return to us at our freepost address.

Freephone 0800 378 846 www.fittleworth.com

I would like to register for a free Life Assist Pack.

Return to: Name: Address: Fittleworth FREEPOST Hawthorn Road Littlehampton Phone no: West Sussex BN17 7LT E mail:

SJA/0509/1 OSTOMY NEWS OVERVIEW OF DEPARTMENT OF HEALTH CONSULTATION Department of Health Consultation: Arrangements under Part IX of the Drug Tariff for the provision of stoma and incontinence appliances and related services to Primary Care.

An overview of the new arrangements service, appropriate advice, a home The Department of Health lists the under Part IX of the Drug Tariff for the delivery service and a supply of wipes key aims as: provision of stoma and urology and disposal bags. - Maintain – and where applicable – appliances – and related services – in • Advanced services include stoma improve patient care; primary care has been published on appliance customisation and the Department of Health website at: - Ensure equitable payment to DACs appliance use reviews (AURs). and PCs for the provision of http://www.dh.gov.uk/en/Consultations/ • AURs must be conducted by a equivalent services; Responsestoconsultations/DH_097226 specialist nurse working on behalf of - Achieve transparency between what the DAC or PC or by a pharmacist, is paid for services and what is Some of the key points are: either in the home of the user or at reimbursed for items. • The new arrangements will be the DAC or PC premises, where there implemented from 1 April 2010 must be a specially designated area • The detail is in the remuneration subject to amendment Regulations for confidential consultation. Where and reimbursement arrangements being laid and amendment Directions possible, these specialists must that apply to the contractors (DAC being made. maintain close contact with the NHS and PC). healthcare professional looking after April 2009 • Dispensing Appliance Contractors the user. (DACs) and Pharmacy Contractors • The new arrangements have been (PCs) who dispense prescriptions can Article reproduced put in place to ensure that DACs choose to offer either Essential courtesy of Services or Essential plus either both operate within a similar clinical governance framework to PCs and or one of the Advanced Services. Anne Demick that PCs offer a similar level of service IA National Secretary • Essential services that must be as the DACs. provided include a repeat dispensing

Prescription Delivery Service

You can depend on UCI Healthcare when it comes to providing an efficient, discreet and personalised prescription delivery service.

Personal Service

We pride ourselves on a personal service, delivering to your home, work or holiday destination within 48 hours of placing an order.

Professional Care UCI Healthcare offer professional, impartial support and advice to both you and your family in all aspects of stoma and continence management. Complimentary Support

We are committed to making your life easier, so with your first order you will receive a complimentary wash bag of your choice along with a RADAR key, giving you access to over 7000 clean Personal Service and secure toilet facilities across the UK.

We are also pleased to customise pouches and flanges for our customers Professional Care with stomas. To receive an information pack on our prescription delivery service, simply call FREEPHONE 0800 731 4376.

FREEPHONE 0800 731 4376 HEALTH SUPPORT GARMENTS

stoma your and you Support for

After stoma surgery it is important to cleaner, gardener), even if you do not get back to full health as soon as have a hernia or bulge, it could be a possible. Recovery from an operation sensible idea to wear a support of this nature takes time and is garment or belt during your activities dependant on how physically able and gentle or intermediate support you were before your operation and garments at other times. the complexity of the procedure. You will have been advised by your stoma How soon you return to work care nurse and consultant to listen to depends on the type of work you do. your body and take plenty of rest. It is If it is physically demanding then you important that no heavy lifting or may need to wait longer to avoid straining takes place during this time. putting strain on your body. Driving a Support garments car puts a strain on your abdominal Following your surgery you need to muscles and your insurance is invalid provide ostomates allow your injured muscles to heal. if you cannot do an emergency stop. with extra abdominal After about 6 - 8 weeks you can start It is advised, like other abdominal support and help some gentle exercises such as surgery that you do not drive for at walking and swimming, gradually least six weeks, always consult your with the management building up your exercise tolerance. GP for more information. of hernias. They If you wish to try other exercises it is can prevent the advisable to consult your doctor or You may resume sexual activity as stomal opening stoma care nurse. soon as you feel able, remember there are more ways of making love from enlarging. Prevention is better than cure! than full intercourse. Cuddles and Ostomates can lower the risk of hugs are probably enough in the A wide range of having a hernia by losing weight if beginning. The important thing is not garments are available need be and by eating healthily and to be afraid of what comes naturally. stopping smoking. Try to avoid putting (The CA has literature on sex after to the ostomate - from any strain on your abdominal muscles surgery and body image). gentle support for and support the stoma and wound everyday use to when coughing or sneezing. To avoid After you have recovered from your constipation drink plenty of fluids and surgery and resumed your normal firmer support eat a high fibre diet or take bulking activities you may choose to wear for work and agents. light or intermediate support sporting activities. garments all day as a preventive Mechanical strain like lifting, pushing measure and even if you do not have or pulling heavy objects early on can a hernia or bulge it may be sensible For more information induce secondary changes in cells to wear a support belt when playing about how support that repair muscles and may lead to vigorous sports such as golf or tennis. garments may diminished muscle tone. Always use be able to help you, proper lifting techniques and do not If you have any reason to believe you attempt to lift weights that are too may have a hernia, always seek always talk to your heavy or require you to close off your advice from your stoma care nurse. stoma care nurse throat in order to tense your who will be able abdominal muscles as this can cause What is a Hernia? pressure and therefore increase the There are two types of hernia that an to advise on what risk of a hernia. Never be afraid to ask ostomate may develop. The first is is best for you. for help! called a parastomal hernia and the second is an incisional hernia. If you regularly engage in hard physical work as part of your job or Under the skin of the abdomen there hobbies (eg carpenter, builder, is a flat sheet of muscle which holds our intestines in. When a surgeon

TIDINGS| SUMMER2009| 27 HEALTH SUPPORT GARMENTS

Support for you and your stoma

creates a stoma, a hole is cut in this There are so many to choose from, muscle to bring the end of the large where do you start? The first thing to intestine (colon) out to the surface of do is to contact your stoma care the abdomen. This therefore makes a nurse, she will have a look at your weak area around the stoma, which hernia and be able to advise on the sometimes allows a section of small most suitable item for you, one which intestine to be pushed up around the will offer you the best support. Once stoma, causing a swelling. Similarly, decided upon your stoma care nurse with an incisional hernia the scar may will arrange a fitting session where tear causing the intestine underneath you can try on the support garment to push through and a hernia may and be correctly measured. If you are develop here. to have an aperture for your pouch to fit through then it is important to be A hernia may develop further and correctly marked up for the aperture. enlarge, (it may start at the size of a The National Stoma Advisory Panel small tangerine but become as large has recommended that a maximum as a melon) for no apparent reason. of three garments a year should be The simple action of coughing or prescribed and supplied each year. sneezing can increase the pressure (Wash, wear, spare!!) inside the abdomen causing the muscle to push forward and the skin Remember if you are likely to be to bulge around the stoma. To help wearing a belt or support garment all support the abdominal muscle you day it is important that it fits can hold your abdomen whilst comfortably and is not so restrictive coughing or sneezing. The skin can that it is difficult to get on and off. If it stretch around the stoma, causing the is too restrictive you may find yourself stomal opening to enlarge in not wanting to wear it thereby diameter. This can impact on your defeating the objective – support. appliance, requiring progressively bigger holes to be cut. You may also Belts come in differing widths, with or need to change to a different style without holes for your pouch, that has a larger or more flexible fastened by clips or Velcro®, in sizes adhesive area, or add tape or a skin small, medium or large and with or friendly accessory to help anchor the without adjustment panels, so it is edges onto the contours of the bulge. important to get advice about the Wearing a support garment can help many products on offer. The belts and prevent these changes in size as you support garments can offer mild or change position, especially if you lie firm support. For heavy work, lifting, down and position the support gardening etc: you will need a very garment while the hernia is reduced. strong support belt or garment. For everyday wear a lighter support may What support garments are available? be appropriate. The garments are Fortunately, there are a number of worn during the daytime only; you support belts and garments that have should take them off when having a been specifically designed to bath or shower and when going to Photos courtesy of OstoMart effectively support the hernia as well bed. If you think you need to wear as reduce “the lump”. the support garment in bed, then you must discuss this further with your These take the form of firm belts or stoma care nurse. pants offering excellent support in the stoma region yet do not inhibit If you have a colostomy you may movement or “roll” upward. They choose to have a garment with no really are effective - and are available hole for the stoma pouch as your for men and women who have either stoma only works occasionally. If you incisional or parastomal hernias as have two stomas, (usually a they hold the pouch close to the skin colostomy and a urostomy) the which has the added benefit of garments will need to be tailor made helping the flange adhere to the skin to ensure that both the fit and properly. support is correct. It is so important to discuss your needs with your stoma care nurse; garments need to be

28| TIDINGS| SUMMER2009 HEALTH SUPPORT GARMENTS

made to measure to ensure the holes Men have the choice of Y-front briefs are in the right place. or boxer shorts also with an inner Helpful Advice pocket. Higher waistline underwear One of the “side effects” of wearing a for extra comfort is also available with Always consult your stoma care good support garment can be that it special inner pouch pockets that keep nurse before using a support sometimes causes “pancaking”. This is the bag away from the skin and garment in any of the following where the output from your stoma under control. The trunks have situations: refuses to go into the pouch, because extended button fly for easier access. it is restricted by the tight garment. So • if you wish to wear the garment the faeces gather around the top of These support garments really can whilst sleeping. the pouch, sometimes forcing the give a boost to all ostomates who pouch off the skin. This is an worry about their femininity or • if you use a convex appliance. unwelcome side effect of wearing a masculinity. The underwear garments firm support garment but it can be offer comfort, freedom of movement • if you are in discomfort or pain. resolved by using a gel or a little oil and assured confidence which in turn inside the pouch, so enabling your enhances “body image”. They can give • if a drain is situated in the area output to slide into the pouch more an added sense of security and extra which will be compressed. easily. Most manufacturers of pouches confidence when out walking or produce gels, so discuss it with their socialising. Also consult your stoma care nurse helpline (or your stoma care nurse) if whilst using your garment: when you next place an order for There are many ostomates who do pouches. However, with the firm not need any support garments and • your bowel function changes. support of the belt the problem of are happy to wear something from “leakage” can be eliminated by the the high street, designed to give only • if you have gained weight and belt keeping the adhesive section of light control. We have Trinny and the garment feels small. the pouch firmly pressed against the Susannah to thank for that! But if you body. do need the hidden pouch support and a hole cut in the garment to Fortunately, there are many allow your pouch through, then a companies who design and make custom made garment may be the ranges of effective support garments solution. Editors Comment especially for those who wear a We anticipate a lot of feedback from pouch. Support garments, are for both A good way of learning about support this article, so don’t be shy! men and women. The garments are garments and accessories is to attend Let us know about your experiences, made of specialist comfort friendly manufacturers open days. It is a great recommendations or horror stories fabrics and are available in various way to see these items for yourself. designs. Some come with a hidden You can then discuss different options e-mail: inner pocket that will hold and with your stoma care nurse before [email protected] support the pouch and stop the making that all important decision to or write to: pouch dropping below the leg line go ahead and order a belt or support Colostomy Association thus giving extra support and garment. On page 53, Notebook - you 2 London Court East Street confidence. Ladies can choose from will find a selection of open days Reading RG1 4 QL luxury satin to pure cotton to supple alternatively why not visit - microfibre. There are also high-legged www.colostomyassociation.org.uk briefs, thongs and French knickers – to find an open day in your area. all have support systems to hold the pouch in place.

Support garment suppliers:

Bullen Healthcare Corsinel by Coloplast Ostomart Salts Healthcare Contact: 0800 269327 Contact: 0800 220622 Contact: 0800 220300 Contact: 0800 626388 Email: [email protected] Web: www.coloplast.co.uk Email: Email: [email protected] Web: www.bullens.com [email protected] Web: www.salts.co.uk Moorland Surgical Web: www.ostomart.co.uk CUI Wear Supplies UCI Healthcare Contact: 0800 2792050 Contact: 0161 320 9400 Sash Contact: 0800 7314376 Email: [email protected] Contact: 0800 3893111 Web: Web: www.cuiwear.com Email: www.ucihealthcare.co.uk [email protected] Web: www.sashstomabelts.com

TIDINGS| SUMMER2009| 29 NEW

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For a free sample of FreeStyle® Vie Flushable, please complete the coupon and return it to: CliniMed Ltd., FREEPOST HY241, High Wycombe, Bucks. HP10 8BR (NO STAMP REQUIRED), call our free confi dential Careline 0800 036 0100 or visit www.freestyleviefl ushable.com Mr/Mrs/Ms: Initials: Surname: Address: Postcode: Tel. No.: E-mail: I understand that this request will be handled by CliniMed Limited or SecuriCare (Medical) Limited. I would like my details to be kept on fi le, so that I can be kept up to date with information about relevant new products and services. Manufactured by Welland® a CliniMed® Group company. Welland products are distributed in the UK by CliniMed Ltd. Tel: 01628 850100 Fax: 01628 523579 Email: [email protected] or visit www.clinimed.co.uk. Fannins N.Ireland: 028 907 35581. Fannins Eire: 0035 312 907047. CliniMed Ltd, a company registered in England number 01646927. Registered offi ce: Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. CliniMed®, FreeStyle® and Dual-Carb® are trademarks of CliniMed Holdings Ltd. ©2009 CliniMed Ltd. 1048/0209

1916 FVie Flush A4 Ad.indd 1 13/3/09 14:50:27 HEALTH SWIMMING

Can I Swim - Your stoma care Snorkel or Dive? nurse will be able to advise on the The answer is “Yes – you certainly can.” many different varieties of appliances available. If Swimming as we all know is an you are worried about damaging your excellent form of exercise. As soon stoma whilst swimming, although as you are healed and fully this is unlikely to happen, you could recovered, swimming can be of real try wearing a stoma shield. benefit to the ostomate. The water gives support and gently soothes Remember that the great majority of the body leaving you feeling ‘normal’ people have lumps, bumps refreshed and invigorated. So why and imperfections on their bodies - not give it a go! very few of us are model - perfect in the first place - and nobody is going Choosing swimwear... to be staring at you. there are one or two things to remember about design which may (NB: It is recommended to avoid help! Patterned fabrics hide secrets swimming in artificial pools, spas and that plain ones expose. A good the sea for at least six to eight weeks swimsuit lining or double layered or until your wounds are completely fabric will support your abdomen and healed because of possible infection.) help to hide the pouch. If you are worried about your pouch becoming Swimwear Specialist Suppliers: detached whilst swimming buy a specially made swimsuit or pair of Bybonnesen.com shorts with a special Frederiksberg Alle 92, 6.tv. security pouch included. DK-1820 Frederiksberg C Board shorts are also a Email: [email protected] popular choice for men Web: www.bybonnesen.com who may opt to also wear Comfizz biking shorts underneath Ladies and Gents swimwear for extra security. designed by an ostomate. Contact: 0113 289 6876 Web: www.comfizz.com You could try wearing a smaller stoma bag under Cui Wear your swimming costume or Call for full colour brochure. Contact: 0800 2792050 trunks as these can be Web: www.cuiwear.com more discreet. Filters on your appliance can work Ostomart poorly or not at all once Ladies and Gents swimwear. You can order by phone or on line. they’re wet or damp. Some Contact: 0800 220300 ostomates tape the flange Web: www.ostomart.co.uk edges, some don’t. If you Vanilla Blush have a filter on your Contact: 0141 556 1035 appliance this should be Web: www.vblush.com taped so water doesn’t White Rose Collection Ltd damage the filter. If you’ve ‘White rose collection’ and changed your flange before ‘Just Men' catalogues available. swimming it’s a good idea Contact: 01202 854 634 to wait an hour before Web: www.whiterosecollection.com going swimming to make Woman Zone sure it has adhered Contact: 01925 768992 properly. Web: www.woman-zone.co.uk

Readers’ Experience: I am so looking forward to the Summer Holidays, when I shall be spending 10 weeks in Brittany, just 20 mins from my favourite beach. When the weather is kind, I like to spend a couple of hours or so on the beach in the morning, reading, wandering and swimming, before most people arrive. Failing that, I go for a quick dip late afternoon, as the French are all leaving to go home for supper. I wear a 2-piece Tankini Swimsuit (I’m on my 3rd. from White Rose) and a tiny waterproof Braun Mini-Pouch, I take a towel (to sit on in the car, when I’m wet) and a skirt (to slip on for the journey) and never have to change on the beach. If I do have to change, it’s easy enough in a 2-piece, under a towel! I can’t wait – why don’t you try the sea this year? Judith (aged 66)

Kind thanks go to the Swimwear companies for their contributions to this article. TIDINGS| SUMMER2009| 31 HEALTH READERS’ EXPERIENCES EXERCISE AND GETTING BACK TO ‘NORMAL’

Talking about Exercise...Thousands of colostomates enjoy a Reader huge range of activities such as sailing, cycling and swimming as PANEL well as more down to earth pursuits like gardening and rambling. contributor Bob Buckley (CA volunteer) tells his story extolling the benefits of exercise before and after surgery, whilst fellow ostomate, Ernie Millington tells us how he enjoyed exercise before he had his stoma and explains his remarkable journey back to health.

The benefits of Mark Twain boy was I in for a shock. The once said “I operation went well and the good exercise after surgery am pushing news was my cancer was diagnosed and beyond... sixty. That as Dukes A, which apparently is the is enough lowest grade you can get, phew!! All exercise for down hill from there, my bowel went A few days me.” into sleep mode so they had to feed after surgery me intravenously, my stitches burst exercise can be I have to say open so I needed another bout of I don’t agree surgery and to cap it all I contracted resumed. Light aerobic with the an infection. At this stage Mrs B was activity such as walking great author very worried and stressed and it’s stimulates the - I have always been keen on worth mentioning that it is often return of bowel function exercise, e.g. running, going to the much worse for our loved ones. gym, even football, until I broke my After about three weeks I was and will get you patella in my forties! I have always discharged weighing about 2 stone back on the believed in sit mens sana in corpore less than my fighting weight, which is road to recovery, sano (a healthy mind in a healthy only 11 stone to start with. I felt very body). I was always good at cross weak and was certainly in the most helping you regain country running at school; however vulnerable position of my life. the muscle tone lost like most young men other pursuits Nevertheless I have always been very whilst in hospital. took over! positive so I decided to plan how I Exercise also increases could get back to fitness. However, in line with the boom in blood flow and jogging, I picked up the running bug To start with I listened to all the thus aids healing, again in my 30’s and joined Durham medical advice, e.g. don’t strain or lift likewise deep Harriers, taking part in nine great anything too heavy because of the breathing exercises. north runs (best time of 1 hour 23 danger of herniation. After a couple mins). Into my late 50’s I was still of days I decided to start walking, Always remember to competing and very fit when to my bearing in mind pre-op I had no keep hydrated - drink huge surprise and chagrin I was problem running 10 miles or more. plenty of fluids. diagnosed with bowel cancer and However to start with I just walked received the double whammy of around the corner and back. This felt being told I would need a permanent enough and to anyone recovering Make exercise fun, colostomy. I kept up my fitness from surgery I would always say, find something regime right up to my operation; in don’t overdo it, listen to your body. I that you enjoy. fact I went for a five mile run the day continued to build up my distance before my surgery. I think my over a few weeks until I could walk exercises helped in three ways; about 8 miles at a good pace. Always check • I firmly believe the fitter you are the with your doctor better you recover from surgery At this stage I restarted my running or stoma care nurse • Exercise helped keep me positive, regime, easy at first, gradually all those endorphins released and building up. I also went back to the before taking • The exercise helped me sleep at a gym to do some light weights for my up any form very worrying time. upper body and some abdominal of exercise. exercises. Previously, my stoma nurse So off I went for the dreaded Sue had given me a booklet which appointment still convinced I was showed some gentle abdominal going to recover in world record time, exercises so I built on those. If you

32| TIDINGS| SUMMER2009 want to do abdominal exercises take everyone around me must be too. I “Every cloud has a silver lining!” advice because most people do them developed a habit of holding my bag If anyone is reading this has a new incorrectly with the danger of injuring as I walked about, feeling like it stoma or is about to have one, please their back. needed supporting as it filled and believe there is always light at the started dragging. end of the tunnel and I’m sure many I am now 62 and still exercise as great things lie ahead for you too. much as possible. However, I do get Before my stoma I used to sleep more tired than I did in my 40’s. without PJs but now felt my bag I’m now over 70 years old and feel as Nothing to do with having a stoma, needed holding in place during the if I have a new life. I walk my dog just Father Time creeping up on me. night and so resorted to underwear. several miles every day, something I So I listen to my body and take the However the position of my stoma couldn’t do when I was suffering with required rest days. meant that I couldn’t find colitis. Although I’m not up to playing comfortable underwear to fit squash or running these days I am an I never intended to let my stoma get properly. Swimming was too active member of my local bowling in the way of what I want to do with embarrassing to even consider at club, playing in a league competing my life and it’s fair to say it hasn’t. In that stage and so life had become every week. I have four wonderful fact I hardly ever discuss it. To sum quite limited. All the time though I grandchildren, one is into motorsport, up I would say whatever your sport still believed I could have a reversal two are national divers (Olympic there are some basic principles and go back to ‘normal’ and couldn’t hopefuls!) and the fourth is too involved following surgery; wait for that day to come. That day young to be into sports yet, plenty of • Listen to the medical people, e.g. never arrived because the surgeons reasons for me to feel inspired and to SCN, doctors, consultants when you were unable to reconnect the continue to live a full and active life. are discharged from hospital. remaining bowel. It had ‘rotted’ away They all call my stoma “Grandad’s hot • Discuss your fitness plan with your and so I had to accept that I was water bottle” and it doesn’t seem to SCN and/or doctor before you begin, lucky to be alive and come to terms bother them at all. They’re just glad especially if you have to take any with my stoma. to have me around to taxi them to special precautions, e.g. for a heart training, school or college and to condition It’s funny though how unexpectedly cheer them on in competitions etc! • Take your time. Getting fit and well things can turn around! I got talking should be treated as a marathon not about my stoma to my daughter and a sprint son-in-law who ran a small business • Listen to your body and rest if you designing and producing high feel tired performance sports wear (Comfizz), • Seek advice in terms of the type of I suggested we work together on a exercise you can and can’t do. The new range of stoma support suppliers of stoma care product have garments. Initially this was just for my some great exercise booklets, ask the own benefit but I was so delighted Colostomy Association for details. with the results that I showed them to my stoma nurse at St James Hospital in Leeds. She was so “How so impressed that she asked us to much good attend a local open day, which was came from to become the first of many. having my You could say I was the perfect stoma” candidate to test out our new Editors Comment products. I soon found the garments I had been supported my bag and almost forgot If you have a similar story to fit and at times that I even had a stoma. tell or would like to reply athletic for The design of the garment sitting to either Bob or Ernie most of my comfortably over my stoma, and the please contact the life. I had served in the British Army gentle pressure and support seemed Colostomy Association (para regiment) in my youth and to help expel gas and prevent the always enjoyed keeping fit. I played bag from bloating. The waistband e-mail: squash, did weight training and some was great for night time, holding the editor@colostomy association.org.uk running before chronic ulcerative bag in place without the need to or write to: colitis affected my health eventually wear underwear. I also tested them Colostomy Association forcing an Ileostomy on me in 2004. I out under my swimwear when I 2 London Court East Street felt like I’d become an invalid, no on holiday! Reading RG1 4QL longer ‘normal’ and I became or depressed. I was told there was a By now I was feeling much better telephone head office: possibility of reversal and so clung on and so positive about having helped 0118 939 1537 to this hope, which didn’t help me create something that could benefit accept my stoma at all. others like myself with a stoma. I wondered whether I ever would have I became self conscious of my stoma, achieved anything like this had I not aware of it filling and felt sure that suffered a stoma? As the saying goes

TIDINGS| SUMMER2009| 33 NaturCare The natural choice

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Rachel Clarkson BreakAway Co-Founder and Trustee talks about BreakAway receiving Charitable status (Registered charity number 1129759) and the success of this years event at Broadhaven. Ailsa and her Mum tell us about their experiences and Hannah writes a special report! Having been back from Broadhaven associations come along and offer for several weeks now, I am still their support and show their overwhelmed by the huge success products. This is really helpful as BreakAway has become. The third families don't often realise what BreakAway weekend attracted 61 products are available and that there guests, double the number of people is support out there for them. we had back in 2007 at our first weekend. There were many new The last night is party night, my families who travelled from all over emotions usually get the better of me England and Wales to join us. but I am so passionate about this charity. This year we had an Hawaiian The event kicked off with us proudly themed disco and everybody entered announcing that BreakAway Visits is into the party spirit with their fancy now a registered charity in England dress. It has become something of a and Wales. Then it was on to BreakAway tradition to have a last traditional team games and song where all of us join hands and challenges, splitting up guests into The weekend activities aim to build dance in a big circle. Just when we small groups to get them talking and confidence - we look for things that thought we had finished for the night working together. The first night is will push the children that little bit Julie and I were asked to stand in the crucial for BreakAway. Both old and further without being too daunting. centre of the circle and the last song new families can relax and get to This year all the activities were based from our first weekend was played. know each other, without the added around the beach. We offered Julie and I brought all the children pressure of talking about the coasteering, surfing, sea kayaking and into the centre with us and then the problems they face - having a child raft building. The idea behind our tears flowed. with a bowel and/or bladder events are encouragement and diversion or dysfunction. personal skill building - just because It’s difficult to explain, but when I see you have a stoma it shouldn’t stop all those people, some of whom I At any BreakAway event we never you doing anything – even getting have never met, come together in one force anyone to talk unless they want wet! room and act like one big family, I to but the relaxed atmosphere and realise the difference BreakAway the underlying knowledge that Stoma nurses are on hand at all our makes. everyone is going through similar weekends to help out with any advice issues, helps families feel able to if its needed and we have a mini As an adult with Crohn's Disease and discuss their stories or share tips with exhibition on the last day where a colostomy I can empathise with people who completely understand. stoma care companies and patient the issues young people face on

TIDINGS| SUMMER2009| 35 YOUNG OSTOMATES A BREAKAWAY SUCCESS

Each child had a ‘something’ but no- My friends at school, when I first got one was moaning about it – we just Mr Pluggy (my stoma) thought that it get on with life. There were some was an electricity plug stuck into my children there with an ACE which I tummy!! But how were they to know, had never seen before. I know that in I tell all my friends at school and they the future I could have one but for think its fab! I like BreakAway now, I am happy with Plum. I have because I do not have to explain had her most of the time since I was anything to anyone as we are all just four. She is a part of me now and I the same? kind of missed her when I didn’t have her. Sometimes people come to BreakAway who have not had their So do I want to go back to BreakAway operation yet, and do not know what again? DEFINITELY! I had such a good it is like. If they want to know, I will time and I know my mum liked it cos tell them. I used to be scared of stuff she spent for ages chatting and stuff like that, but now I am not scared at a daily basis - BreakAway ensures that to other mums. She said it was a all. I used to have a colostomy and none of these young people or their good experience for her too. now I have an ACE (Mr Pluggy!) families ever have to feel like they are on their own. Plans are now afoot for Ailsa’s Mum At this year’s BreakAway we did sea the 2009 Christmas party and two (of indeterminate age)… kayaking, coasteering, raft building, BreakAway weekend events in 2010. The brilliant stoma nurse at Bristol and surfing. It was so much fun. On We will also be updating our website Children’s Hospital Claire Bohr, told the last night we had an Hawaiian and message board very soon. me about BreakAway and I was lucky fancy dress party. Everyone joined in, enough to get a place on their it was great. On the Sunday Julie and I want to make sure we summer weekend. When I told my afternoon, it was really hot so we all reach as many families as we can. daughter she was beside herself with went to play on the beach. My Daddy Our focus is spreading the word excitement. We live in Cornwall and soaked all the kids by chucking about BreakAway - getting funding she had never met anyone her own buckets of water over their heads! and sponsorship (so that no family is age with a similar condition. I am so excited about the Christmas excluded due to limited finances) and party weekend. I know what the building upon the success we have The weekend was everything I hoped surprises are but I can’t tell you what had so far. it would be. I knew there would be they are! families who already knew one Ailsa (aged 10)… another from previous BreakAway When I found out that we were going events, but there were also those to the BreakAway Weekend and that I who, like me, were new to the group would meet other children who had and this included a family with a girl the same kind of thing as me I was the same age as Ailsa. I really valued SO EXCITED! I could not stop talking the opportunity to talk to others away Christmas Party 27th & about it for days to my friends – I from the intensity of a medical 28th November 2009 think I drove them mad. I was just so environment. looking forward to all the activities, meeting new people who would The organisers and parents were For more details and booking forms hopefully become my new friends. welcoming and open about their or to enquire about our funding experiences – from the humorous to applications please call Julie 07939 So what was it like? The activities the harrowing. It was good to share 690311 or Rachel 07751560013 or were BRILLIANT – I especially liked both. I found the weekend really alternatively why not visit the the coasteering. I was the first one in good fun and it was clear that a lot of BreakAway website: the FREEZING COLD water and I thought and care had gone into the didn’t mind it at all. The rock climbing planning of the event. It caters for www.breakaway-visit.co.uk bit was hard but falling back into the parent/carers and for children of all and hit the contact us button! water again was fine. Raft building ages. As Ailsa has made clear we was really fun and everyone was just WILL be going again. In partnership with laughing all the time. My mum was hopeless at it. Special report... My special friends I think I can make friends quite easily. by Hannah Adams age 8 By the end of the evening on day one (Julie Bastin’s daughter) I had met a family who had a girl my age. We did fun games together and I love going to BreakAway! this helped us to get to know At BreakAway I have made lots of everyone. new friends who all have problems like me. Before my Mummy started I have to say it was a bit strange BreakAway I thought that I was the meeting others like me. I am so used only one that had problems with my to being the only one (I have a stoma bowel and my bladder. It is nice to that I call Plum – ‘Plum on my tum’). have lots of friends who are just like It made me realise I wasn’t alone. me!

36| TIDINGS| SUMMER2009 CHATBACK Readers’ writes Why not write or email the Editor of Tidings with your thoughts, experiences or hints and tips... Dear Editor Dear Tidings ‘Tidings’ helps people find A rather nasty surprise... and share information! I had a rather nasty surprise recently, and I wondered how I would like to say thank you to the contributor to “Readers many others have been affected. I have had a colostomy Writes” Mrs J.R. from Tyne and Wear for her letter in the since October 2007 as a result of a perforated bowel, from spring edition. Back in the summer 2008 edition you a diverticulitis abscess. Having decided in 2008 not to have printed my letter regarding rectal pain as the result of an a reversal I have got on with my life, managing quite well. abdominoperineal resection. However, about two months ago I had been having some In my original letter I pointed out that I was able to discomfort in my rectum so went to my GP. I was amazed conclusively verify most side effects of various pain-killing to hear, after internal examination, that I had faeces in the drugs, and arrived at a position of taking the medication rectum. (17 months after my operation). And it was hard, and still having pain. I made the decision to stop taking the about the size of a golf ball. It took weeks of administering, lot, however being constantly worn down by the now firstly enemas and then suppositories and enema identifiably different types of pain, I was soon back at the pain management clinic. combined to shift it. All in all, not a very pleasant experience. I feel that this should have been cleared while Pain blocking injections that had been mentioned on I was in hospital for three weeks, so I mentioned this to previous visits to the clinic had frankly scared me, however my GP. However, she says this happens to many people, they now took on a more appealing character. Knowing so don’t complain. I still think this is negligence, but I that at best the chances of the injections working in my didn’t write to the hospital. case was twenty five percent I still thought anything was better than the current state of play. The explanation of It seems to me that a lot of people could be saved a lot of these injections can be very off putting, but in reality I was later trouble if an examination was done before discharge pleasantly surprised and felt nothing. Sadly that is what the from hospital. Thoughts on this from other colostomates injection did! would be welcomed.

Next up hypnotherapy. After three sessions I concluded Sincerely, that yes I did need to relax more but I could not convince myself I did not have a pain you know where. E.S Back at the pain clinic one last possible injection was on Nuneaton offer, but to reach the nerves needles would need to be Warwickshire bent to go around things!

Luckily at this point I read in Tidings about Lidocaine patches, and subsequent discussions with my G.P. lead to me trying them out, and at this moment things are looking If you want to be involved in the next issue of very promising, not totally the answer, but a good general Tidings magazine - simply drop us a line via email: improvement, visible to and commented on by my friends. [email protected] or write to: Once more a big thank you to Mrs J.R. of Tyne and Wear Colostomy Association and of course Tidings, illustrating how important it is to 2 London Court, share what we experience and try to help each other by it. East Street, I have nothing but praise for all the people that have Reading RG1 4QL helped me throughout my problems, but I do wonder if we would have come across Lidocaine on our own, or how Look out for our Reader long it would have taken. Reader Button (opposite) PANEL Thanks again for a great association. to see where readers Yours sincerely. have contributed to Tidings. contributor

D.S Bedworth, Warwickshire

From Ed: D.S is the lucky winner of the star letter and will receive a £20.00 gift card from M&S TIDINGS| SUMMER2009| 37

CHATBACK Readers’ writes

Dear Editor Dear Editor Light at the end of the tunnel Sangenic Hygiene Plus Nappy Disposal I had an AP resection with a permanent colostomy at the Unit again! end of January 2009. I was given a ‘Tidings’ magazine to For the first time since my colostomy in 2004 I picked up read which I found most helpful, and knowing there is light my telephone and called your helpline. I was thinking at the end of the tunnel having read other peoples letters - about a holiday in Cornwall and was worried about ‘where thank you. to put my bags’. Would there be a Wheelie bin on site, Yours sincerely, should I notify the owners that I had a colostomy, I was really worried about it all. P.M. Cleethorpes The lady who answered the helpline was Iris. I talked to North East Lincs her and explained my worries and she was so encouraging. She told me about the Tommee Tippee Nappy wrapper. At Dear Tidings first I laughed because I could not Request for feature on mucus visualise it. I decided to go to my local Mothercare the next day it was and prolapsed rectum on offer at £9.99 instead of the Could you do another feature about mucus and prolapsed usual retail price of £19.99. I rectum. I am 80 years and coping OK with colostomy couldn’t wait to try it! Well, I got up which I had in 1985. Despite two operations 8 years ago in the morning full of doubts that for prolapsed rectum I am still uncomfortable walking the nappy wrapper was as good as some days. everyone said it was. I WAS WRONG. I saw a surgeon privately at Bristol but he says there is too much scar tissue to attempt any more surgery. The nappy wrapper is a brilliant Looking forward to the next Tidings. invention and absolutely no odour at all remains in the bathroom, once Yours faithfully, the bag has fallen to the bottom of M.L (Mrs) the unit. It has changed my life. I can travel anywhere in the U.K. now Toilets who needs with it in my car, it is compact and Radar keys...don’t leave light and solves my problem, when them... home without yours... travelling, of ‘where to put my bags’. we do - more and I would like to say a big thank you to better quality but tailored Iris for telling me about this unit and then later when my Winter Tidings to the needs of the user... Magazine arrived, there was an article about it in there. There are an increasing number of specialist user groups, such as I would recommend all Colostomates, ostomates, whose lives are affected by to hotfoot it down to their local the state of Britain’s public toilets. Mothercare to buy one. At the Tidings is shocked to hear increasing NATIONAL KEY SCHEME moment the special offer of £9.99 is stories and comments from ostomates How to obtain a key to gain still ongoing. No More constant trips about the state and quality of many of access to toilets for the disabled to the wheelie bin. Hooray ! our public toilets. Colostomates are entitled to a key which will open 7,000 I just wanted to share this with all We would like to hear your stories, locked toilets around the UK. your readers as constant trips to the Some local councils will provide and feedback - whether it is positive this key free, or for a small charge. wheelie bin was really getting me or negative. We want to know your down and now I can empty my nappy Keys can be obtained from the experiences! Colostomy Association at cost of £3.50. wrapper unit at my convenience. Contact head office: 0800 328 4257 We will then use this information as for an application form. With best wishes to all and thanks for basis for a future article. Please Keys can also be purchased for £3.50 a brilliant magazine. contact the editor details are from RADAR: Yours most sincerely, on Page 5. Tel: 020 7250 3222 www radar-shop.org.uk You might also be interested to know RADAR also publish a guide which lists C.M. that the British Toilet Association all the NKS toilets throughout the UK Aspley Guise, would also be interested to hear you (cost £10.25). Bedfordshire points of view. How to contact: British Toilet Association, PO Box 847, Horsham, West Sussex, UK RH12 5AL Phone: 01403 258779 E-mail: [email protected] Web: www.britloos.co.uk Let yourself go this summer... 1 Piece Closed Pouches

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Telephone: Email: TCA07/09 HEALTH YOUR QUESTIONS ANSWERED Dear Nurse

Julie Rust RGN. Dip, N. MSc. However it may be useful to get a full review from the GP who can then Clinical Nurse Specialist assess your Dad and refer him for Stoma Care social services support or District Nurse support for the other problems. University Hospital I hope this helps. of North Staffordshire Q: My husband had surgery in January for colorectal cancer and because he was vehement about not Q: I had my colostomy in March of having a permanent colostomy he 2008. I do not mind the colostomy opted for surgery followed by chemo but what does concern me a little is and radiation. He began the chemo that I have seepage or mucus all day two weeks ago and aside from some long. When I had my colostomy I was of the expected effects he has been told that I would only have discharge fine. once a month. Boy! were they wrong! I don't know how to handle this. I for However, yesterday, when we were one don't like the odour that it scheduled for the disconnect from the causes. Nothing that I do eliminates portable chemo bottle he became the smell. I am embarrassed to go aware that nothing was passing out or even be around people for the through the stoma into the bag, but fear that they too can smell it. Do I rather was going through his rectum. need a rectum removal to correct this this may need to be done on a It was not that he had the urge to go, problem? Any advice that you can regular basis and medical review prior it was just passing through. give me would be greatly to this would be needed. appreciated. Please let me know if I contacted the chemo centre who there is anyone out there with the suggested that he might be same experience as me. It would be Q: Can you help me? My Dad has constipated and recommended taking nice to know that I am not the only had a colostomy for a number of laxatives for 48 hours. He tried that one. years. He suffers from terrible but is still having the same problem. diarrhoea and can go to the toilet 5 Now we are concerned that there is or 6 times a day. He can’t go back to some kind of blockage by the stoma. A: Discharge from the rectum hospital for a operation because they I guess I just want to know and so I following this type of operation is not found a problem with his heart. He is can calm my fears that more surgery unusual but it is impossible to say 85 years old. What I need to know is might be needed. My husband is how frequently this discharge will whether there is something wrong opposing that. Any response from you occur. Some people get it daily whilst with his diet and if so are there any will be appreciated. others only have a problem every few tablets or medicine that might help weeks or months. If you are finding him? He also lives on his own. He there is an unpleasant smell with the can’t leave his home because he’s A: This is a difficult question to discharge it may be worth having a got leg ulcers. Can you please advise answer as I do not have access to medical review with either your GP me? your medical records. I would think or Consultant to see if there is an the best option is to have a review by infection there and whether a course your surgeon, this can be arranged of Antibiotics would help. Removal of A: It sounds like your Dad needs a through the chemotherapy unit. The the rectum would also be a solution medical review to see if he can get surgeon would be able to investigate but you would need to discuss the any help with what seems to be a why this problem is occurring and problems and benefits of this course group of problems. The output from could then discuss the treatment of action with your surgeon. Another the stoma may be a simple thing to options with you. I cannot guarantee alternative would be to have a sort with a change of diet or some that this would not involve further Glycerine Suppository inserted into medication such as Fybogel, taken surgery but you need to see the the rectum to help to remove any twice daily dissolved in a glass of surgeon to discuss this further. buildup of mucous you have there, water, to help to regulate the output.

TIDINGS| SUMMER2009| 41 Q: I have a relative who has had a assessment regarding the product you colostomy for just over two years and are currently using to see if there is is still overweight. She wants to lose an alternative for you to try. With Editors Comment weight and exercise but wants to regard to your diet you can get more information from the Ileostomy contact you to find out what If you have a medical abdominal exercises can be done Association website on without risking herniation. She is very www.iasupport.org or telephone 0800 question or a query about busy and will probably not make time 0184724. Certainly some patients find stoma care management to contact you so I wanted to find out they need to alter their diet slightly for her. Are there any prohibited but it sounds like you have really had exercises? Also, can irrigation be to restrict your diet. Certain foods may Why not write to us at:- taught even though she is still cause a looser motion such as citrus suffering from diarrhoea? She says it fruits, green vegetables, salad, prunes, Colostomy Association is problematic, but can it still be fruit juices whilst other foods can help 2 London Court to thicken the output such as pasta, taught? Thank you for your help in East Street advance. rice, potatoes, jelly sweets and cubes of jelly. If necessary you can also use Reading A: Your relative should be alright medication such as immodium or RG1 4QL doing any sort of exercise as long as it codeine to thicken the stool but you is performed correctly. It may be would need to see your GP for this. or e-mail worth her joining a gym or sports [email protected] centre where she can discuss her surgical history with a personal trainer Q: I hope you can advise. My who can then suggest an exercise daughter had a colostomy 5 months programme to suit her. Alternatively ago and she is having problems with We will forward general exercise such as walking or wind which is causing the bag to them to Julie Rust swimming may help. Obviously a blow up like a balloon. She is and publish her suitable diet would also be necessary becoming very distressed as she feels uncomfortable and embarrassed that answers in the next for any weight loss and she should issue of Tidings. undertake this correctly so that she the bag is very noticeable. There are looses weight slowly. With regard to air holes in the bag but this is not irrigation she would need to see her helping. She is also having problems stoma care nurse to discuss her getting underwear as the top of the suitability for this and also for training bag is above the waistline. if she feels she wishes to try it. Hope you can help. A: The excess wind that your daughter reports is possibly due to Q: I had an operation for Crohn’s her diet. She needs to eat regularly, disease and ended up with an avoid too much fizzy liquid and try to ileostomy, which I have managed for chew her food well and eat without nineteen years, now into my twentieth talking. Also it may be helpful to keep with the bag. I am suffering from very a dietary diary so that she can see if red and sore skin around the stoma, I there are certain foods which cause try to watch what I eat and find my an increase in the wind, certain foods diet is very limited, my stoma care in some people can increase the nurse hasn’t been very helpful, amount of wind they produce and however, it is a struggle trying to once she is aware of what foods cope. I would appreciate any help effect her then she can either avoid you could give me, I am now into my them or at least eat them in smaller quantities or at a time that will cause seventy eighth year. Thank you HOLIDAYS.... less problem. Some people report a Beesands Devon A: Obviously it is difficult to say why reduction in the amount of wind they you are having this problem without produce if they use probiotic yoghurts or drinks such as Actimel or Danone, Holiday Apartment more information. The soreness could Self Catering Accommodation be due to several things including a whilst others have found peppermint, fennel or charcoal useful, but again (Within fellow change in size of the stoma, a change Colostomates home) in your weight or even an allergy to this is a personal approach and does not work for everyone. the adhesive on the pouch. If the skin • Wonderful Seaviews is very red and wet it may be useful • Sleep 2 to try a powder such as Orahesive by • Beesands Devon Convatec and an adhesive ring such • From £150 a week as those made by Salts (Cohesive Seal). This would help with the For more information: adherence of the pouch and would 01548 581163 help to improve the condition of the Mobile 07968370498 skin. It may be worth you revisiting your stoma care nurse for a further

42| TIDINGS| SUMMER2009

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1192 Appeel A4 Ad AW.indd 1 23/5/08 11:30:03 RESEARCH STUDY THE USE OF ACCESSORY PRODUCTS IN STOMA CARE Accessories or Necessities... • When is an accessory product considered to be a necessity for the patient?

• Is the use of an accessory product based on physical, psychological or financial assessment?

• Should patients obtain the advice of their stoma nurse prior to obtaining these products?

We expect that the results of the study will provide some insight into the current use of accessory products L to R: Lesley Law, Heather Dennis and Caroline Rudoni and how well the decision to use them or not is based on clinical Clinical Nurse Specialists (CNS) Lesley However, surprisingly a few stoma appropriateness, cost effectiveness Law, Heather Dennis and Caroline nurses have mentioned that whilst and positive outcome for the patient. Rudoni in Stoma Care at St George’s they agree with the results of the Healthcare NHS Trust, London, are evaluation and identify the value to The results will help to provide currently undertaking a research study patients of using a silicone-based evidence upon which best practice on the use of accessory products in adhesive remover, they would still not can be based. stoma care, with the aim of offer it to their patients unless they identifying whether there is any were in considerable pain when The results will be presented at the consensus of opinion regarding their removing their pouch. WCET UK conference, 30 September use. to 2 October 2009. Publication of the As a department we were concerned results will follow in the nursing press Their interest in the use of accessory to hear comments like this, in October 2009 and also the patient products follows a service evaluation particularly as – like many stoma association magazines. undertaken in 2008 on the use of nurses – we strive to provide the best silicone-based adhesive remover. service we possibly can for our We would like to thank the patient patients. associations, CA, IA and UA, for their Caroline takes up the story - “as a help and support in distributing department our usage of silicone- While there are Best Practice questionnaires to patients for this based adhesive remover, at that time, Guidelines published for many study, and to all patients and nurses was intermittent, and the use was practical aspects of stoma care who took the time to complete and based on each CNS’s own opinion of (CREST, 2006), there is still a lack return the questionnaires to us. how much discomfort they felt the of evidence available upon which patient appeared to experience when we can base our clinical decisions This study has removing a stoma pouch”. An regarding more subjective issues, like been funded by evaluation was completed to identify the use of some accessory products the annual Opus whether the patients themselves such as silicone-based adhesive Healthcare Bursary found it beneficial to use a silicone- remover. research grant, based adhesive remover when which was awarded to the Stoma removing their stoma pouch. The This is what prompted our decision to Care Department at St George’s results of the study overwhelmingly choose the use of accessory products Healthcare NHS Trust in October suggested that patients do experience in stoma care for our study. 2008. great benefit from the use of a silicone-based adhesive remover, with Questionnaires have been distributed 91% of patients confirming this, and to 420 Stoma Nurses and 150 References: Berry J, Black P, Smith R, Stuchfield B 93% of patients stating that they felt patients within the UK. The patient (2007) Assessing the value of silicone and it should be offered to all stoma group consists of 50 patients with a hydrocolloid products in stoma care. Br J patients. Colostomy, 50 with an Ileostomy and Nurs 16(13):778-88. 50 with a Urostomy. Following presentation and Clinimed Resource for Education and Specialist Training (2006) Caring for publication of these results, many The study will hopefully highlight the Stoma Patients, Best Practice Guidelines. stoma nurses have informed us that following:- High Wycombe, Bucks. they have altered their own practice based on evidence from this study, • What products do Stoma Nurses Rudoni C (2008) A service evaluation of the use of silicone-based adhesive and now also offer silicone-based consider to be accessories? And is this remover. Br J Nurs 17(2):S4-9. adhesive remover to their patients. view shared by patients?

TIDINGS| SUMMER2009| 45 CONNECTIONS Marketplace advertise...your events • messages • services here... If you have anything to sell, Ostomy Bag Covers an event to advertise or a by Linda message to communicate, you can place a small-ad for Covers made to fit any stoma bag. Most colours available. Cotton, lace or silky fabrics. as little as £20. Also lightweight denim and other prints available. Most individual requirements can Please contact the Editor - be met. details and information can Telephone: 01205 723327 be found on pages 4 and 5. Linda Butler (a fellow Ostomate) Advertisements received before 28 August 2009 will Do you feel like a The cottages are situated on be considered for inclusion the beautiful estuary of the Holiday away Helford River - explore the in the next issue of Tidings. from it all... stunning cornish countryside and coastline. Two properties are available So, why not get in touch in Cornwall Melyn Goth To book simply contact: and let Tidings promote (sleeps 7+cot) and Gwel an Neil or Sue Hatton Dowr (sleeps 2) at Tel: 01326 3400 58 or email: Polwheveral Mill. your business or service. [email protected]

• The Sash belts are available on prescription and suitable for both male SASH stoma support and and female. • The Stoma Support and Hernia Belt is parastomal hernia belts are • All belts are custom made from information given on our Order Form made of a 50mm (2”) non elasticized and a hole is cut into the belt flange to fit your preferred pouch. webbing attached to a restraining suitable for Colostomy, • No fittings are required. Belts are processed and mailed within two flange that fits between the bag and Ileostomy, Urostomy, working days. the adhesive section of the pouch. • For further information and to obtain an Order Form Freephone : Umbilical and waistline 0800 389 3111 Incisional hernias. The SASH stoma hernia belt has been

• The Security and Leakage Belt is made of a designed and developed by soft 32mm (1.25”) elastic belt attached to a an ostomist to give support retaining flange that fits between the bag and • The SASH Stoma Support and Hernia belt is designed and manufactured the adhesive section of the pouch. by an Ostomist and gives support to the muscles surrounding the stoma. to a hernia that surrounds • Eliminates most leakage problems and gives added security and confidence. the stoma without Ostomists report relief from dull aches and pain in the stoma region while wearing the belt. restricting normal body • Used by ostomists with a pasastomal hernia (a bulging around the stoma) the movement or limiting “the ring of confidence” belt will also help prevent muscle damage and enlargement of the hernia. • This lightweight unobtrusive belt is designed to muscle use. • Ideal for work, sports, gardening, housework, DIY or at any time stomach help eliminate leakage problems by holding the muscles require a firm support. adhesive section of the pouch against the body during all activities. • With support from the Sash belt and periodic consultations with a consultant • The belt also gives added security against the some Ostomists are delaying, maybe permanently, the need for hernia surgery. pouch becoming detached and will help to support Ref. no. S1 the weight of a full pouch Ref. no. SR103 Sash Medical Limited Freephone 0800 389 3111 “Woodhouse”, Woodside Road, Hockley, Essex, SS5 4RU. Website:- www.sashstomabelts.com

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Promotes healthier skin Assists pouch emptying ¡ Contains an odour reducing agent Only a single sachet required To obtain your FREE samples please complete and return this coupon to: Pelican Healthcare Limited FREEPOST Licence No. CF1933 Cardiff CF14 5GX or call our Freephone Sample Order Line on: 0800 052 7471 Name (Mr/Mrs/Miss/Ms): ...... Address: ...... Postcode: ...... Skin Protector (please tick one): I Convex I Flat Stoma Size ...... mm Pouch Size (please tick one): I Maxi I Standard I Mini Pouch Type (please tick one): I Closed I Drainable

Stoma Cap (please tick one): I Minuet 10-40mm I Minuet Plus 10-55mm R HEALTHCARE Pelican Perform: I * All Convex pouches should only be used after prior assessment by a stoma care specialist. an eakin company BCA05/09 IN CONVERSATION SUPPORT GROUPS

“Members discuss their stoma care problems with others who empathise and offer practical advice and verbal support”...

Maria Culleton SCN talks about her view of support groups and introduces a new support group for South East Kent

In conversation being part of a group is so useful. We still have to decide on some Members can offer solutions and ground rules. A committee needs to with Tidings... advice. It really helps to combat some be put in place to help with patients feelings of isolation and fundraising. We hope to do this by a Maria Culleton tells us about helps them back into society gently minimal charge for teas and coffees which they may have found daunting with a raffle being held at each her involvement with stoma at first. meeting. care and gives her view on why support groups Maria talks about the We have found that the majority of are so valuable. patients who attend like to use the new support group for group as a way of meeting South East Kent likeminded people. Members discuss I have been a stoma care nurse since their stoma care problems with others 1998 working within my local Trust We have recently started a support who empathise and offer practical hospitals. group for Ostomates in South East advice and verbal support. Support Kent covering Canterbury, Faversham, groups are invaluable and prevent I left last year due to family illness to Whitstable, Herne Bay and the people feeling alone and isolated. enable me to spend more time with surrounding areas but as yet we are my husband and two young children. undecided on a name! There are no We have met at several different I have been very lucky to secure a restrictions on who can attend and locations so far but are in the process job which enables me to work from from how far they’d like to come! of deciding whether or not to use the home as a stoma care nurse. This also same venue each month. It has been allows me to be much more flexible The group is open to all ages and suggested that we rotate meetings to in my approach to work as I am both sexes; we have patients with make it easier for members to attend. available to patients most of the time each type of stoma, from all walks of to deal with urgent queries or life, with a wealth of experiences and We would also like to invite guest emergencies. from different professions. speakers and have topical discussions either stoma related or on more I am passionate about stoma care We are still very much in our infancy general subjects. and have two family members with and have only held a few meetings stomas. I became interested in stoma but each have been well attended We also hold a monthly meeting in care whilst working as a surgical sister and enjoyed by all. The focus of the the physiotherapy department at dealing with patients undergoing group is on support and having a fun Buckland Hospital in Dover. It is a procedures such as colonoscopies time and many partners attend as small but very friendly group. We and chemotherapy. well. meet for support and friendship and anyone in the local area is welcome I think from a nursing point of view, The initial idea was a long term to attend. support groups are not only very dream of Roz Charter who lives supportive to patients, but can also locally in Canterbury. She has wanted For further details of meeting dates, be rewarding and informative. Most to bring stoma patients together for times and venues please contact nurses do not have stomas and many years not only to offer support Maria Culleton on: 01227 769679 though we may empathise it is not and friendship, but also to arrange an the same as having to deal with a active and fun social calendar. We stoma on a daily basis. I feel that hope this will include trips to events getting people together with similar and shows as well as visits to places experiences is so important and can of interest. really aid the healing process. Just

48| TIDINGS| SUMMER2009 SUPPORT GROUPS IN YOUR REGION

Support Groups are places where people can share personal stories, express emotions, and be heard in an atmosphere of acceptance, understanding, and encouragement. Participants share information and resources. By helping others, people in a support group strengthen and empower themselves. Stoma support groups in your region...

The following support groups have been revised thanks to your responses from the spring edition of Tidings.

No support group in your area? If there is no support group available in your area - why not set up your own group...

Weigh up the pros and cons and, if you decide to go ahead, find a small group of people to start the group with you, rather than going it alone. England

Helpful advice...

• Contact the CA Head Office Scotland and they will put you in touch with a volunteer who can help. Midlothian: • Healthcare professionals may GOSH also be able to give some advice. Contact: Alex Topping 01501 772154 Maggie’s Edinburgh Timetable Cheshire: Hand in Hand • Your local library may suggest Contact: 0131 5373131 Contact: Julie Davis Secretary books for you to read. Glasgow: Cestrian Support Group Contact: David Burgham 01244 • Your local council or voluntary Fittleworth Support Group Contact: Maureen (SCN) 0800 310461 services should also be able to 7837148 Warrington Ostomy Support Group provide help. Contact: Jane Shaw 01925 662103 Ayrshire: Countess of Chester Hospital • Search the Internet for help North Ayrshire Stoma Support Contact: Julie Clements 01244 and advice. Contact: Jim 01292 220945 365490 (S.C.A.R) Drop in Clinic Contact: Maggie 0781 7736147 or Contact: Angela Perks/Deborah John 01290 550551 Singleton 01625 661598

Fife: Cleveland Fife Ostomy Support Group Oops Group Contact: Ishbel Barr 01592 772200 Contact: Julie Morrisroe SCN 01287284113

TIDINGS| SUMMER2009| 49 We go the extra mile

SecuriCare’s Home Delivery Service can deliver Our staff have over 20 years of knowledge all makes of stoma products. Try our award and experience in stoma care, so whatever winning service and you’ll find out what sets your need, we’ll do all we can to get it to you us apart – a friendly, individual service from your easily and discreetly, at a time to suit you. own personal contact, ensuring you speak to the same person every time. In addition, we provide personalised customisation even for diffi cult To arrange a delivery or just find out more stoma shapes with our ultrasonic cutting machine and a choice of wipe and disposal bag styles. call 0800 585 125

SecuriCare (Medical) Ltd, Compass House, Knaves Beech Way, Loudwater, High Wycombe, Bucks HP10 9QY. Tel: 01628 850100 Fax: 01628 523579 Email: [email protected] Web: www.securicaremedical.co.uk

1845 New HDS Ad A4_AW.indd 1 20/2/09 15:28:13 County Durham: Rotherham Ostomates Caring Support Suffolk: South West Durham Ostomy Group Contact: Karen Kilford 078880 575758 James Pagett Ostomy Support Group Contact: Betty 01388-814535 Brian CROPS (Colo-rectal ostomy & internal Contact: Sandra Hutchings 01502 01388 763684 pouch support) 585955 Contact: Gloria 0114 2879503 East Suffolk Ostomy Group Derbyshire: Contact: Marion Fisher 01473 311204 Stoma Support Group Isle of Man: West Suffolk Support group Contact: Anne Wilcox Stoma Support Group Contact: CA for details 01283 214389 Contact: Carole 01624 650212 Optimistics Lancashire: Contact: Stoma Nurse Lynne Webb Trafford Bowel Care SCN 01983 534009 Contact: Jackie Carey Secretary 0161 7489659 Doreen 0161 9627818 John 0161 7484655 Oldham Stoma Support Contact: June Wilde 0161 6787086 Bedfordhire: Salvation Army - Sr Georges Saturday Social Club Contact: Stella Prince Contact: CA for details 01204 413718 Berkshire: Leicestershire: West Berkshire Ostomy Club (WBOC) Moving on (Leicester Royal Infirmary (Reading) Colorectal Support group) Contact: Jackie Dudley 01344 426652 Contact: Wilf Patterson (secretary) Monday Pop In Group (Bracknell) 01455 220344 Contact: Jackie Dudley 01344 426652 Nottinghamshire: Merseyside: Buckinghamshire Nottingham Colostomy, Ileostomy & Olivia Thomas Suite University Milton Keynes Stoma Association Urostomy support group Hospital Contact: Bruce Pollard 01908 582563 Contact: (Evening) Barbara Percy 0151 Contact: Rosemary Brierley 0115 9826691 5292842 Essex: Mansfield Stoma I.C.U.P.S M.E.S.S (Mid Essex Stoma Support) Contact: Gerry Marshall 07794 159267 Contact: Carol Anderson 0151 Contact: Clive Blanchard 01245 3277589 468750 Jeanette Johnson 01376 Staffordshire: Liverpool Support Group 511862 Outlook Contact: Barbara Percy 0151 5292842 North Essex Stoma Support Contact: Ernie Hulme 01782 324441 (Afternoon) Contact: Mr W Hatch 01255 503688 Joan 01782 710828 Brian Waller Secretary 01206 540449 Northumberland: Redbridge Ostomists Club West Midlands: Northumberland Cancer Support Contact: Stoma Nurses: Chris/Lisa Colostomy Group Contact: Pat Fogg 0191 4102679 0208 9708321 Contact: Pat Keane 0121 4242730 South Essex Young Ostomy Group Teeside: Contact: Paul Gray 01708 501268 Bowel Cancer support (Semi Colon) Optimistic Ostomates Contact: Mr G Dickson 01642 563747 Contact: Janet 01702 385510 Angela 01702 385509 Tyneside: STEPS Gateshead Health NHS trust Contact: TBA (Stoma drop in clinic) Contact: 0191 4878989 ext 2221 Hampshire: Royal Victoria Infirmary Support Group Southampton Support Group Contact: Gordon Weatherburn 0191 Contact: Carol Summer 02380 446779 2341109 NHS Molineaux Centre Hertfordshire: Contact: Lesley Brown 0191 2195656 Colonise Lincolnshire: Contact: CA for details Yorkshire: Friends Support Group Stoma Fellowship Airedale Stoma Support Contact: Betty 01205 724120/Sheila Contact: Karen/Mandy 01438 781133 Contact: Jenny Shaw 01535 652516 01205 364493 Bobbie/Amanda or Sue Hall 01535 210483 01476 464822 Kent: Dewsbury & District Ostomy Dover & District Stoma Support Contact: Janet/Eileen 0844 8118110 Norfolk: Contact: Marie Culleton SCN Scarborough Stoma Support Group Stars 01233 616646 Contact: Sister Jean Campbell 01723 Contact: Anne Brown 01603 661751 Ashford Stoma Support 342388 Contact: Chairwoman - Ursula Naish 01233 640863

TIDINGS| SUMMER2009| 51 SUPPORT GROUPS IN YOUR REGION

London: Devon: Whipps Cross University Hospital Devon IA Contact: Christina 0208 5395522 Contact: Margaret Bond 01392 447374 Ealing Ostomy Support Group Contact: CA for details Dorset: South Woodford Ostomy Support Cupid (Colostomy Urostomy pouch Group Ileostomy of Dorset) Contact: CA for details Contact: CA for details

Middlesex: Wiltshire: Inside Out Wessex Stoma Support Group Northern Ireland Contact: Bob (chairman) 0208 Contact: Michael Slater 01722 741233 Daisy Hill Hospital Belfast 4284242 Sarah Varma 020 82354110 Swindon IA Contact: Bernie Trainor Semi-Colon Club www.swindon-ia.org.uk 028 3883500 Ext 2222 Contact: 01895 179391 Mater Hospital Belfast Contact: Karen Boyd Oxfordshire: 028 90741211 Ext 2329 Oxfordshire Ostomy Fellowship Causeway Patient Support Group Ernest Draper 01865 391257 Contact: Mary Kane 028 70346264 Southern Trust Surrey: Contact: May Jo/Bernie 028 38612721 Epsom and District Stoma Support Contact: Jan/Sheena 01372 735232

Sussex: Brighton & District Stoma care support Eire (SAS) Contact: Sylvia Bottomley 01273 554407 West Sussex Princess Royal Stoma Support Contact: Tina Walker 01444 441881 ext 8313 The Ostomy Friends Group Contact: Jane Quigley 01323 417400 Wales Ext 4552 Blaenau Gwent Self Help Contact: Marina Heal 01495 310686 (after 6pm) Swansea Ostomy Self Help Group Contact: Glynis Jenkins 01792 418245 Bowel Cancer Support Group Wrexham Ostomy Friendship Group (Irish Cancer Society) Contact: CA for details Contact: Olwyn Ryan +353 12310500 Mayo Stoma Support (Castle Bar Hospital) Contact: Marion Martyn 094 902 1733

Avon: Bristol Ostomy Self Support (BOSS) Editors Comment Contact: Christina 0117 9558236 Support groups are very often invaluable to those who are ‘Living with a Colostomy’. Joyce 0117 9075326 Rob 0117 We support existing groups and help new support groups set up. 9668021 If you know of a support group not mentioned in our listings please let us know. Cornwall: Optimists Here’s how you can get in touch via e-mail: Contact: Sue Hatton 01326 340058 editor@colostomy association.org.uk

or write to: Colostomy Association 2 London Court East Street Reading RG1 4QL or e-mail: cass@colostomy association.org.uk

52| TIDINGS| SUMMER2009 NOTEBOOK UPDATES AND EVENTS

Stoma Care Nursing About Stoma Care Venue: Skelmersdale Cricket Club, Professionals and the Open Days... Firshwood Park, Lathom Colostomy Association Date: 11/09/09 Open days give ostomates the Time: 11am - 3pm Bullen Healthcare open day Whether you are a stoma care opportunity to meet and share experiences with other ostomates. nursing professional working with a Venue: National Glass Centre, new patient about to have a Many people attend with friends and Sunderland colostomy or you are working in a family and it can be a very sociable Date: 15/09/09 follow up clinic with patients who event. have had a colostomy - the Time: 10am - 3pm Colostomy Association is here to Open Days are organised by stoma Sunderland Royal Hospital Stoma Care help... care nurses working within the NHS, Dept open day stoma care manufacturers and/or The following is a list of services we suppliers. These events offer you the How to contact the provide:- opportunity to chat to stoma care nurses about any problems you may Colostomy Association • A 24/7 - Helpline 0800 328 4257 - be having, speak to company calls are taken by fully trained representatives who may order free By Post: 2 London Court experienced colostomates. East Street Reading samples for you, or meet up with Berkshire RG1 4QL CA volunteers who have everyday • Advisory literature - written by experience of living with a stoma. By Telephone: colostomates and health care General Enquiries: 0118 939 1537 professionals. The IA or UA may also be represented. Helpline: 0800 328 4257 • A quarterly 56 page glossy By E-mail: magazine called ‘Tidings’ - featuring As an added bonus you may receive [email protected] real life stories, the latest reviews on free entry into a museum or garden, new stoma care products and much depending on where the open day Helpful Groups & Organisations is being held. more. Other Ostomy Support Associations... List of forthcoming Open Days: • Seventy plus contact volunteers • IA The Ileostomy and Internal (who are colostomates) - happy to Venue: Keepmoat Stadium, Doncaster Pouch Support Group talk about their experiences and/or Date: 29/07/09 Freephone: 0800 0184 724 share them with stoma care students Time: 11am - 2pm www.iasupport.org and nurse groups. Salts Healthcare open day • UA Urostomy Association • Volunteer attendance at ‘Open Tel: 01889 563191 Venue: Taunton RFC, Hyde Park, www.urostomyassociation.org.uk Days’ – volunteers will attend with Taunton literature and chat about 'everyday Date: 4/09/09 • IOA International Ostomy Association living with a colostomy’. Time: 11am - 3pm www.ostomyinternational.org Musgrove Park Hospital Stoma Care • Volunteers available for patient visits • Gay Ostomates Dept open day Tel: 0845 6436858. please request further information e-mail [email protected] from the Colostomy Association. Venue: Twycross Zoo (The Napier www.gayostomates.org • Nurse/Hospital ‘Open Day’ Centre), Burton Road, Atherstone Support organisations for invitation handling - The Association Date: 28/07/09 medical conditions... will send out invitations to ‘Open Time: 10.30 -12noon or 2pm - 3.30pm Days’ on behalf of stoma care nurses, CliniMed open day • Macmillan Cancer Support Freephone: free of charge. Please supply invites CancerLine: 0808 808 2020 and stamped envelopes and we will Venue: St. Wulstan’s Community Hall, YouthLine: 0808 808 0800 post out to those registered with us Church Lane, Wolstanton, Staffs, ST5 0EF www.macmillan.org.uk in your area. Date: 19/09/09 Time: 1pm - 3.30pm • Cancerbackup Outlook (North Staffs Ostomy Support Freephone: 0808 800 1234 www.cancerbackup.org.uk Group) Annual patient day and exhibition. Macmillan Cancer Support and Cancerbackup have merged all telephone numbers and websites remain the same at the present time. Index: A-Z of Advertisers • National Association for Arelle Convatec Linda Butler Pelican Colitis and Crohn’s disease 0800 3893597 0800 834822 01205 723327 0800 0527471 Tel: 0845 130 2233 www.nacc.org.uk B Braun CUIWear OakMed Salts 0800 163007 0800 2792050 0800 592786 0800 626388 • The Gut Trust (Irritable bowel syndrome) Bullens Dansac Opus Sash 0800 269327 0800 581117 0800 4587605 0800 3893111 Tel: 0114 272 3253 www.theguttrust.org CliniMed Hollister Ostomart UCI Healthcare 0800 0360100 0800 521377 0800 220300 0800 731 4376 • Bladder and Bowel Foundation (B&BF) Formerly Incontact and Continence Coloplast iMedicare Peak Medical White Rose Collection Foundation 0800 220622 0208 207 5627 0800 6520424 01202 854634 General enquiries: 01536 533255 Web: www.bladderandbowelfoundation.org

TIDINGS| SUMMER2009| 53

DONATIONS HELP US MAKE A DIFFERENCE

Donation & Standing Order Form Thank you for your support

Please use this form to make either a Single donation or a Regular donation by Banker’s Standing Order. Simply complete this form and return by post to the Colostomy Association 2 London Court, East Street, Reading, Berks RG1 4QL. Telephone: 0118 939 1537 if you have any queries.

Note: My Details: Please ensure that we have Title: Name: Surname: your full name, Address: address and postal code thank you Postcode:

Telephone number: Email:

1 Single donation: (a donation of £12 or more covers production of four issues of Tidings per year)

(Please tick.) Yes I would like to make a single donation

I would like to make a donation of £

I enclose a cheque/postal order form made payable to the C.A. Ltd - Thank you!

Please tick here if you require a receipt acknowledging your kind donation

2 Regular donation: I would like to make a regular contribution to the Colostomy Association in support of the charity and I have completed the Banker’s Standing Order form below.

(Please tick.) Yes I would like to make a Regular donation

Instruction to your Bank/Building Society to pay by Banker’s Standing Order

To the Manager: (Bank or Building Society) Bank Address: Postcode: Name(s) of Account holder(s): Account number: Sort code: Please pay: NatWest Bank Market Place Reading Branch 13 Market Place RG1 2EP Account name: C.A. Ltd Account No: 88781909 Sort code: 60-17-21 the sum of £ amount in words: Date of first payment: and thereafter on the same day every month/quarter/year)*

(*Delete as appropriate) until further notice. (Please cancel any previous standing order in favour of this beneficiary ) Name: (IN CAPITALS) Signature: Date: / / 20

Thanks to the gift aid scheme - we can reclaim money on your donation from the government. For every pound you give us, we can claim an extra 28p. For example, a donation of £15 becomes £19.23 with gift aid, at no extra cost to you.

I would like the tax to be reclaimed on any eligible donations that I have ever made or will make to the Colostomy Association until further notice. I confirm that I pay an amount of income tax and/or capital gains tax at least equal to the tax that the Colostomy Association reclaims on my donation in the appropriate year (currently 28p for every £1 donated).

Signature: Date: / / 20 Thank you for your gift Ê

Registered Office: 2 London Court, East Street, Reading RG1 4QL Registered Charity No: 1113471

TIDINGS| SUMMER2009| 55 DONATIONS HELP US MAKE A DIFFERENCE

The Colostomy Association is an independent charity financed solely by donations. Your help and support is now more important than ever in this changing world...

Our findings show there are approximately 60,000 colostomates living in the UK and with over 6,400 permanent colostomy operations being performed each year - we need to be here for them!

The Association continues, with your help, to give support and reassurance to both experienced colostomates and those who are new to ‘living with a colostomy’.

Here’s how your donation helps us make a difference... Here’s how YOU can continue to support us... to fellow colostomates simply by making a donation you will ensure our survival The Association provides: • advisory literature, written by colostomates and health • Single Donation care professionals. Single donation from individuals and fundraising • a quarterly magazine 'Tidings’ especially written for events are always welcome and greatly appreciated. colostomates, their families and their carers. So please keep them coming, no matter how small. Just £12.00 (or more) ensures we are able to • a telephone helpline 0800 328 4257 manned 24 hours a day every day. continue to produce four issues of Tidings per year. • over seventy contact volunteers covering the UK, fully • Regular Donation trained and experienced, (who are themselves Regular donations can be made via standing order ostomates) these dedicated individuals bring a human touch. (see Donation Form) Regular donations help us to plan ahead and like all donations are vital to our • a volunteer at the request of a stoma care nurse can survival. visit a patient/s before their colostomy surgery, and afterwards in hospital. Home visits can also be arranged. • Donate via Payroll Giving Enables you to give direct to us straight from your • attendance at organised stoma care nurses 'open days', gross salary (before tax is deducted), and to receive that you can visit and where you can learn more about immediate tax relief of up to £4 for every £10 your stoma, in a friendly atmosphere and discuss any donated. problems. • attendance at manufacturers' and suppliers', ‘open • Legacies - A gift in your will days’ and exhibitions. This allows us to update you on If you are about to make a will, or are considering stoma care products, accessories and services via making a change to your current will, please consider ‘Tidings’. leaving a legacy to the Colostomy Association to help • a voice for your opinions at on going consultations us to continue to offer support to all those with a with the National Health Service and keeps you colostomy. informed of issues that may affect you. Together we can make a difference to the everyday lives of fellow colostomates... by giving today you ensure the Colostomy Association will be here tomorrow!

Your donation to the Colostomy Association today...will mean we can reach out to other colostomates their families and their carers with support, reassurance and encouragement. With your help we really can and do make a difference - thank you

Office Address: 2 London Court, East Street, Reading RG1 4QL Tel: 0118 939 1537 Helpline: 0800 328 4257 E-mail: [email protected] Web: www.colostomyassociation.org.uk Registered Office: 2 London Court, East Street, Reading RG1 4QL Registered Charity No: 1113471