FROM THE EDITOR

welcome to SUMMER Did you know... Our regular feature Open Door covers the launch of a new initiative – High The Colostomy Association Impact Actions for Stoma Care have redesigned their popular Nursing. We are delighted to welcome childrens colouring book which the author of the feature Dame will be available soon - kind thanks Catherine Elcoat DBE. Dame Catherine go to Pelican Healthcare for explains the concept behind the sponsoring the production of... initiative and demonstrates how Clinical Nursing Specialists have a key role to play in constantly improving the quality of patients’ experience.

Mr John Lengyel - Consultant Surgeon University Hospitals of North I simply can’t believe that it’s the Staffordshire NHS Trust Stoke-on-Trent time for strawberries and cream, writes about Laparoscopic Bowel summer sunshine hopefully and yes! Surgery. Wimbledon again. This summer we also have the added attraction of NEW to Tidings magazine – is a series the Football World Cup, which I’m of articles examining problematic sure many of you will enjoy. I must stomas written by Melanie Jerome and say that I’m not a great follower of Amanda Gunning stoma care nurse the beautiful game but when it specialists Chelsea and Westminster comes to supporting England I’m Hospital NHS Foundation Trust. In this right there! Let’s hope they do a issue they examine dips, and creases. I little better this time! know from my own experience caring for my mum in her eighties and her Sam has a stoma a colouring book Again the editorial team have had stoma (which became my stoma due aimed at younger children who have some fantastic contributions from to her reluctance to accept her body’s a stoma or who may need help to YOU for this issue and I have taken change and function which I fully understand that a family member the liberty of picking out a few great understood) what difficulties some now has a stoma. reads, which I am certain you will ostomates face living with their stoma enjoy. Moira Hammond ostomate and – simple changes can make all the The Colostomy Association has CA volunteer writes about travelling difference to a person’s well being over 70 contact volunteers up and downunder, Susan Fifer shares her and quality of life. Information and down the country. All have experience thoughts on becoming a colostomate awareness can and often does lead to of living with a stoma and many can and Claire Loaiza writes about a new a problem being identified and a offer more specific advice due to their support group in the North East of positive outcome being sought and own personal experiences e.g. England. delivered. irrigation, keeping fit, travelling abroad. If you would like to chat to someone If you are new to reading Tidings I The Colostomy Association provides a then please call or email head office would like to welcome you aboard FREE telephone helpline 0800 328 and we will put you in contact with and hope that you find the magazine 4257. The line is manned 24 hours someone. informative, helpful and supportive. a day by office staff and trained volunteers who are themselves The Colostomy Association can YOUR stories, letters and contributions ostomates just like you. If you have be found on Facebook - the online are so valuable and supportive to all a problem do get in touch we are social utility connecting people with who read Tidings and I know from here to help! friends and others who work, study conversations with stoma care nurses and live around them. The site is that they give Tidings regularly to their On behalf of the team I hope you growing and now has a membership patients. enjoy this issue and welcome your of 337. Discussion topics are many and feedback - without it Tidings cannot varied. Joining Facebook is simple visit: Here is an offer of help - to those of truly reflect YOUR interests, ideas and www.facebook.com you who are contemplating writing or concerns. have a story to tell and feel you need a little guidance or would like to be interviewed, please pick up the phone, write or send an email to CA, my Macmillan Cancer Support offers a contact details can be obtained from benefits advice service. If you are Head office. It’s good to talk and I affected by cancer and have money have to some of you but I would like Email: worries call 0808 808 00 for a chat to encourage more of you to share [email protected] or visit: www.macmillan.org.uk/ your thoughts, ideas, and experiences financialsupport for advice. with other readers. Tidings magazine PS. Why not send a hint or tip, letter is a platform for YOU to have your say or article to the editorial team for so let’s hear from you! consideration in the next issue of Tidings!

TIDINGS| SUMMER 2010| 3 inside contents

READERS STORY IN CONVERSATION FROM THE EDITOR 12 welcome to Ten Weeks A COLOSTOMATE 3 Later... COMMENTS SUMMER by Susan Fifer Issues associated with living with CA NEWS a colostomy From the 6 20 EDITORIAL TEAM office IRRIGATION Editor feedback on Jane Wood Sue Hatton events attended replies to your Associate Editor and CA Open Day Rosemary Brierley Heritage Motor Museum Executive Trustee UPDATE Colostomate & Helpline stoma care Volunteer products 14 Sue Hatton 22

Trustee FUNDRAISING Colostomate & Helpline 16 responses to Volunteer make a Jackie Dudley difference our spring article how you help! Office Administrator PATHWAYS TO Gill Herbert FEATURE OSTOMY COMMUNITY A COLOSTOMY Office Administrator open door Gardening Jo McKenzie Launch High as an 18 Impact Actions Colostomate & Helpline Ostomate Volunteer for Stoma Care by Jackie Dudley Georgina Williams 10 24 Colostomate & Volunteer Bob Buckley Diverticular Disease written in Stoma Care Nurse Advisor partnership with Amanda Gunning RGN, CNS Christine Hyde RGN CNS with two reader’s experiences

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 within If you have an idea for an Front cover picture courtesy of Tidings Magazine does not constitute an endorsement or article and would like to Moira Hammond pictured on recommendation of these products and services by the Colostomy discuss this with the Editor holiday with her son Michael. Association. or would like help writing your

4 | TIDINGS| SUMMER 2010 READERS STORY HEALTH An Ostomates NEW SERIES 53 Travelogue Stoma Care downunder Management About... the Colostomy Association

The Association represents the interests of colostomates and other ostomates. We provide 38 support, reassurance and practical SUPPORT GROUPS information to anyone who has or is about to have a Colostomy. 32 Problematic in your region Stomas... support groups The Colostomy Association is strengthen a charitable company limited by Moira Dips and by guarantee Hammond Creases and empower (Registered Charity No: 1113471). CA Volunteer people CHATBACK How to get to in touch... YOUNG OSTOMATES By post: Readers’ 39 Colostomy Association Breakaway writes 2 London Court, Weekend your letters Don’t delay... East Street, Reading RG1 4QL 34 By telephone: 2010 Donate Online General Enquires: 0118 939 1537 HEALTH today! 42 Stoma care queries only: ASPECTS OF There are NOW two Helpline: 0800 328 4257 MEDICAL CARE ways to donate By E-mail: Laparoscopic online... [email protected]

Bowel Surgery Find us on Facebook:

A buzz of activity and excitment... How to become a member of the Colostomy Association...

OSTOMY COMMUNITY 1 Simply visit our website Ostomyland and register at: Visit the CA website Website HEALTH www.colostomyassociation.org.uk 36 and simply click or contact Celebrates Dear Nurse General Enquires: on the donate panel Anniversary 0118 939 1537 for more on the home page. information

45 2 Tidings Magazine Visit the Just Autumn Edition advert booking by Giving home page 23rd July you will see a search advert copy by panel ‘Find a 14th August your letters and publication queries Charity’ type in October 2010 Colostomy Association. 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| SUMMER 2010| 5 CA NEWS

Letter from the CA office... CA Open Day... Dear All, at the Heritage We have had a tremendous response to our request for voluntary donations from the Spring edition of Tidings. We have received over £10,000 in donations Motor Centre in and on behalf of the Charity I would like to thank all who donated for your Warwickshire... continued support and to all who help us continue to make a difference!

It’s hard to believe that I have been with the CA for over a year. It has been a very interesting period and I have met some great people.

The office continues to be very busy, I have introduced changes within the office to ensure its smooth running and instigated a review of our accounting system and procedures with the help of Cheryl Manning. This has taken some time to achieve but I am sure will pay dividends for the future.

The new volunteers training manual is in its final stages and is being piloted by a few volunteers to gauge feedback before rolling it out to all. Staff in the office have worked very hard answering your queries, collating A Date for and sending out information, and dealing your diary... with Open days. The team has handled several mail outs for Open days resulting in Date: 16th October 2010 approximately 30,000 individual pieces of Time: 10:00am - 3:00pm mail being sent. I hope you have taken the Venue: Heritage Motor Centre opportunity to attend an Open Day they Gaydon, Warwickshire are very worthwhile. The Heritage Motor Centre is You may remember from the last issue of home to the world's largest collection of historic British cars. Tidings we were in the process of changing our Tidings print and mailing supplier. This Those attending this Open Day process is now complete and Superior Richard pictured with staff at Superior passing Tidings on press will have FREE access to the based in Melksham have won the contract. Museum and its catering area. The CA Database has also been reviewed and cleansed which will mean cost- The Association’s Open Day will be housed in the Conference saving efficiencies with regard to the mailing of Tidings. I would also like to Centre, which is within the thank the volunteers who come into the office on a regular basis for their Museum and has excellent ongoing support Colin Allum, Heather Nicolls, Jackie Dudley, Margaret Simister facilities. and Monty Taylor. Those attending this Open Day This brings me on to mention our own Open Day which will take place on will gain increased knowledge about their stoma via Saturday16th October at the Heritage Motor Centre near Gaydon in workshops and talks on the day. Warwickshire, we will use this event to celebrate our 5th Anniversary. You can We will be inviting stoma care read more about the event opposite. professionals from the local and regional hospitals to get You will I am sure be pleased to learn that we have new Ostomates joining us involved and join us on the day. Also, patient associations will be on a regular basis which is great news! invited to come along and local support groups will be most welcome. Regards, Stoma care industry representatives will be in attendance to answer product queries and exhibit the latest stoma care products and accessories.

For more information contact: Richard Bray Richard Bray General Manager General Manager Tel: 0118 9391537

6 | TIDINGS| SUMMER 2010

Sue Hatton supports new ostomy Helpful Ostomy Support group in Torbay ‘name to be decided’ - This was an initiative by Groups & Organisations... Donna Ashbrook, supported by her stoma nurse Neita Matthews from • IA The Ileostomy and Internal Torbay Hospital and sponsored by Kim Pouch Support Group Hill of Hollister. It was a very happy initial meeting. Most members had Freephone: 0800 0184 724 Diary... their Tidings and loved the magazine. www.iasupport.org Medicine and Me Any one interested in joining this monthly meeting and getting details of by Vanessa Denvir - CA Volunteer • UA Urostomy Association the next venue can call Donna Tel: 01889 563191 Ashbrook on 01626 854 862. In the comfortable surroundings of www.urostomyassociation.org.uk this 200 year old institute approximately thirty people gathered • IOA International Ostomy Association together. They were a mix of Feedback... www.ostomyinternational.org ostomates and medical professionals. Open Day at Buckfast Abbey... Some had taken the effort to travel by Rosemary Brierley - Trustee and • Gay Ostomates Email: [email protected] from as far as Switzerland! CA Volunteer www.gayostomates.org The fact that it was an intimate group More than 130 ostomates along with made it much easier for the audience relatives and friends attended the • Stomadata & Stomafr to discuss issues with the speakers. Salts Healthcare Open Day in the www.stomadata.com Irrigation was discussed by the tranquil grounds of Buckfast Abbey in www.stoma.fr audience and the medical Devon. professional’s response was that • Macmillan Cancer Support The day’s proceedings began with the Freephone: perhaps it was up to them to raise history of Salts Healthcare. This family- awareness about Irrigation, especially CancerLine: 0808 808 2020 run business has been around for 300 YouthLine: 0808 808 0800 considering it was widely encouraged years and spans ten generations. Next www.macmillan.org.uk in America. came presentations about the latest range of stoma appliances produced Also mentioned was the change in by Salts. • Cancerbackup NHS regulations regarding stoma Freephone: 0808 800 1234 care products (as has already A local colorectal nurse specialist gave www.cancerbackup.org.uk happened in Scotland) as was an insight into how stoma care has Macmillan Cancer Support and changed since the introduction of the getting replacement supplies in an Cancerbackup have merged all Enhanced Recovery Pathway – from telephone numbers and websites emergency, especially taking into more information and improved account the recent travel delays remain the same at the present preparation before surgery to getting time. caused by volcanic ash. patients up and about much sooner after the operation and involving them Another topic was confidence, in the care of their stoma at a much • National Association for whether it was with swimming, earlier stage. A dietitian was also on Colitis and Crohn’s disease altering ones clothing style or hand to answer ostomate’s food- Tel: 0845 130 2233 rebuilding self-confidence after related questions. www.nacc.org.uk surgery. The ostomy associations were each • The Gut Trust allocated a seminar room where they (Irritable bowel syndrome) Having had surgery five years ago held interactive sessions. These small and being an active campaigner for Tel: 0114 272 3253 informal groups gave ostomates the www.theguttrust.org greater awareness for those living opportunity to participate and ask • Bladder and Bowel Foundation with a colostomy. I felt grateful for questions. the opportunity to speak out about (B&BF) my own personal experience. The Colostomy Association’s topic was Formerly Incontact and Continence Everyday since my surgery has been irrigation - a stoma care nurse gave a Foundation life changing in so many ways. very clear explanation of what it is and General enquiries: 01536 533255 However, I have remained positive demonstrated the equipment Web: required. The Ileostomy Association and my experience had led me to www.bladderandbowelfoundation.org had invited a surgeon to talk about realise forgotten ambitions. “the view from the other side of the • Bowel Cancer UK table” - an amusing and informative Tel: 020 7381 9711 I hope the event gave others look back at the first attempts to Email: [email protected] inspiration and motivation to live life create a stoma in the eighteenth positively after surgery and that in century and forward to future trends Web: www.bowelcanceruk.org.uk future, other ostomates will take in colorectal surgery. Ostomy Lifestyle the opportunity to attend such an concentrated on the different types of • Beating Bowel Cancer UK interesting and informative stoma and why they are formed. For Tel: 08450 719300 (Lo Call rate) symposium. the twenty urostomists present, the Web: www.beatingbowelcancer.org Urostomy Association held a successful question and answer session.

A very interesting and enjoyable day.

8 | TIDINGS| SUMMER 2010

FEATURE OPEN DOOR

Launch of High Impact Actions for Stoma Care Nursing at the Royal College of Nursing... written by Professor Dame Catherine Elcoat DBE

The High Impact Actions are an exciting development for stoma care nursing which will help to further enhance patients’ experience

In May 2010 Richard Bray - General The event was attended by Stoma At a national symposium, sponsored Manager of the Colostomy Association Care Nurses, representatives from by Coloplast Ltd., in December 2009, and Jane Wood, Editor of Tidings Patient Organisations, Nurse the High Impact Actions were Magazine were delighted to be invited Managers, journalists and discussed and there was to the launch of High Impact Actions representatives of Coloplast Ltd. overwhelming support from a large for Stoma Care Nursing. The launch In September 2009, the Chief Nursing number of delegates to identify the was held at the Royal College of Officer for England, Dame Christine ways in which Stoma Care Nurses Nursing in London, and hosted by Beasley DBE, launched eight High could work together, to support the Coloplast Ltd. The High Impact Actions Impact Actions for Nursing and implementation of these High Impact are an exciting development for stoma Midwifery. When Stoma Care Nurses Actions and develop a small number care nursing, which will help to further became aware of these High Impact of additional actions specific to the enhance patients’ experience whilst Actions, they immediately recognised specialty of Stoma Care Nursing. A saving costs for the NHS, at this time the contribution they could make to steering group of experienced, Stoma of economic difficulty. this important work. Care Nurses was established, led by

10| TIDINGS| SUMMER 2010 Back row from left to right - Sue Frost, Julie Morrisroe, Tracey Virgin-Elliston, Dr Terri Porrett. Front row from left to right - Jill Dean, Yvette Perston, Elaine Swan, Allison Sharpe, Maddie White, Amanda Smith, Carol Katté and Professor Dame Catherine Elcoat DBE

Professor, Dame Catherine Elcoat DBE, An initial, high level, economic Stoma Care Nurses support their Trust herself a former Stoma Care Nurse. analysis was undertaken to provide an to meet waiting time standards, This initiative was supported by insight into the possible cost savings appropriate NICE Guidance, together Coloplast Ltd. as part of their ongoing resulting from these actions. More with the promises made in the NHS commitment to support Stoma Care detailed work is now planned to Constitution. Nurses in the valuable role they determine more robustly the potential undertake. impact Stoma Care Nurses across the With the support of Coloplast Ltd, it is NHS can make. planned to consolidate this important The steering group determined how work, the next phase will look to the initiative would be taken forward The launch on May 27th was an demonstrate cost savings which result to build on the national work that is important step in the continued from the high quality specialist already in place. The steering Group development of Stoma Care Nursing. services provided by Stoma Care decided that there were two streams Stoma Care Nurses have seized the Nurses. In November 2010 this further to this work opportunity to lead the way, again, in work will be presented at a National demonstrating how Clinical Nurse Symposium hosted by Coloplast Ltd., • to determine how Clinical Nurse Specialists, as nursing practitioners to demonstrate the work of this Specialists in stoma care can support and leaders, are cost effective and important document. and contribute to the implementation have a key role in improving the of eight nationally identified High quality of patients’ experience. Impact Actions The High Impact Actions for Stoma • to determine what if any High Care Nursing document has been Impact Actions could be identified endorsed by The Chief Nursing Officer relating specifically to the specialty of for England, The Chief Executive and stoma care nursing General Secretary of the Royal College of Nursing, The World Council of The process followed was the same as Enterostomal Therapists, Association that used to identify eight High Impact of Coloproctology Great Britain and Actions for Nursing and Midwifery. All Ireland and the Patient Associations. Stoma Care Nurses across the United Kingdom were invited to contribute The document sets out the Stoma ideas and suggestions relating to the Care Nursing contribution to the eight work, with a particular emphasis on High Impact Actions for Nursing and improving the quality of patients’ Midwifery, together with a small experience and reducing costs. number of additional actions relevant to the specialty of stoma care nursing. The proportion of Stoma Care Nurses The document also includes some that responded exceeded the national illustrative examples of best practice response in the previous identification which highlight the important exercise. contribution made by Stoma Care Editors Comment Nurses and provides supporting If you would like to learn more about The ideas and suggestions which were evidence. At the back of the document High Impact Actions generated were considered by the there is an example of a typical for Stoma Care Steering Group and a priority list was colorectal patient’s clinical pathway, copies of the identified. A review of relevant clinical which demonstrate the vital document are available for download from research was then undertaken to contribution which Stoma Care Nurses the Coloplast website identify evidence to support the make to patient care and experience, visit:www.coloplast.co.uk interventions. identifies the key areas in which

TIDINGS| SUMMER 2010| 11 READERS STORY A NEW COLOSTOMATES PERSPECTIVE Ten Weeks Later… “I’ve got a friend who’s had one for thirty years. She goes dancing, swimming, hang-gliding’ pot-holing…” Does this sound familiar to everyone else who reads this magazine? Why do I keep feeling irritated by something that is obviously only said to reassure me?

emotional and ‘equipment-related’ are for a delicate balancing act over the down to my inexperience, my next few months!) Constipation with a ineptitude, my attitude or are just part small inverted stoma is no joke. It of the learning process. After all, I was probably isn’t funny either with a a teacher and keep telling students normal stoma. My stoma nurse said that these things take time. It’s that a couple of glasses of Tropicana somehow different, isn’t it, when it’s orange juice (the one with the bits) so “up close and personal”? works well for a lot of people. I’m all for the natural approach and certainly So I thought I would draw up a list of don’t want laxatives if I can possibly things I have discovered which are help it. helping me come to terms with my changed body. It might just help Four - Pancaking and ballooning others who are perhaps six or ten or sound like things from a children’s fifteen weeks in to this process party. This readership will know that these are the bane of the ostomist’s Susan’s List: life. The most helpful tip for me was One - There are lots of bags available; that a small piece of tissue in the bag Ten weeks ago, I woke up in intensive work with your stoma nurse to find can help prevent the vacuum effect care after an emergency operation to what suits you. I have an inverted which is often the cause of pancaking. correct a laparoscopic colectomy for stoma and so use a convex flange. I Finding out about the filter covers is colon cancer. The join had not held don’t know how common it is for the helpful too – though I haven’t yet got but had leaked into the abdominal stoma to be inverted but decided that the balance right at night and often cavity. Apart from the immediate I couldn’t be alone in this since they wake up with what feels like a mini effects on the system of two major wouldn’t have just developed a gas canister stuck to my left side. operations in seven days, the other product with a market of one. Removing the filter cover helps at this unexpected result was a colostomy, point. something for which I ought to have Two - I have decided that a drainable been prepared, but for which I wasn’t. bag is a better solution for me, even Five - Do reconnaissance at places though my stoma output is probably you are likely to visit frequently and The possibility of a leakage for the first more suited to a closed bag. Apart check out the facilities. I now have a operation is apparently as low as 5%. from the problems of having to Radar key to use with disabled toilets. Since I’m always complaining about change the bag frequently (I have skin I am going up to central London soon media stories which misunderstand or which is prone to irritation), I wanted and will check out the facilities in misrepresent risk, I should have to be able to go deal with the major stores, museums and art thought more about it but, as it wasn’t situation of less than perfect galleries. the original intended outcome, I circumstances for a full bag change didn’t. when I was out of the house. My So, that’s what I’ve learned so far. It partner, a retired mechanical engineer, helps to talk about it, particularly to I’ve had to do a lot of thinking about suggested that I could use the people who have been in a similar it since then. I’ve had help and drainable bag more easily by having situation. As you all know, the most support from the stoma nurses at my an empty washing up bottle filled difficult thing is the steep learning local hospital and throughout with water which I could add to the curve, at a time when you are just everything I’ve felt loved and bag through the drainage end just recovering from surgery and facing cherished by friends and family. But before emptying, thus making it easier further treatment. This is not it’s still a very personal experience. to send the contents into the toilet something that you can put off like Despite always being generally very bowl. This works well at home and I learning Spanish or taking up hang- upbeat about most things in my life, have found a small lotion bottle in gliding. Anyway, I never wanted to go what I really want to know is how the Superdrug that I can put in my “going pot-holing, with or without a dancer/swimmer/hang-glider/pot- out supplies bag” which I can fill up colostomy! holer felt after six weeks, ten weeks or with water whenever I get to my four months – not thirty years. destination. Susan Fifer

I know how it feels to me; magazines Three - The anti-sickness drugs you We will be including another article like Tidings and associated websites are given in chemo-therapy can give from Susan in a future issue of help but it’s hard to know whether you constipation (though chemo itself Tidings, when she will tell us how the problems I have – physical, can give you diarrhoea – so we are in she feels…“Ten Months Later”.

12| TIDINGS| SUMMER 2010

SHOWCASE NEW STOMA CARE PRODUCTS AND SERVICES Update on new stoma care products and services Tidings is always interested to learn about new stoma care products and services...from manufacturers and suppliers. Colostomates...if you have found a stoma care product or service beneficial to ‘Living with a colostomy’ please let Tidings know...your findings could make all the difference to other colostomates.

Bullen Healthcare & Pharmore Plus Bullen Healthcare has teamed up with Pharmore Plus to provide Ostomates with a full prescription home delivery service.

This unique service means that along with the discrete delivery of any make or manufacture of ostomy appliances we can now deliver all of your drug and medication requirements. This personalised service will work in the same way for the medication as for the appliances. Your named representative will Lift Plus call you monthly to run through what you need, we will then collect the No-Sting Adhesive Remover prescription from your GP on your behalf and deliver all the items directly Lift Plus Spray and wipes are recommended to your door in one box on a mutually agreed date. by Stoma Care Nurses and widely used to clean residue from peristomal skin and to To learn more...about this fantastic new service please complete and ensure pain free removal of pouches and return the Freepost insert included in Tidings or call one of our customer flanges. Following on from user feedback service operatives on Freephone 0800 888 501. Opus Healthcare have introduced improvements to the spray mechanism that There’s now a lot more to Bullen Healthcare’s home delivery result in a more consistent spray that is service…Pharmore! easier to direct. Lift Plus wipes and spray are available on prescription and can be obtained from your usual supplier. Free samples are available by visiting independence products - the new www.opus-healthcare.co.uk or calling name in innovative healthcare free of charge: 0800 458 7605. accessories, has launched a new range of five stoma care accessory products Pelican Healthcare is delighted to that are available on prescription. announce that we are now the sole distributor of the popular Eakin Cohesive® Adhesive Remover Wipes - The range in the UK (formerly distributed by wipes are made with a superior Salts Healthcare). For over 30 years Eakin quality soft non-woven material and Cohesive® has helped improve the quality provide fast and effective removal of of life for ostomists. sticky residue. They’re available in convenient and discreet individually wrapped sachets. Product code is Eakin Cohesive® Seals are specially ARW1 and there are 30 wipes per box. designed to hug the base of the stoma to help prevent output from your stoma from Adhesive Remover Spray - The spray has all the same residue removing coming into contact with the skin. Eakin properties as the wipes. It’s available in a handy 59ml aerosol that Cohesive® Seals are completely mouldable features a unique twist-open/closed top that removes the need for a to ensure a perfect fit every time and separate cap. The product code is RS1. prevent leakage by forming a waterproof barrier around the stoma. Clinical studies Barrier wipes - A new superior quality soft non-woven wipe with a special have confirmed that Eakin Cohesive® non-sting formula that creates a barrier film layer on the skin. It’s offers the most absorbent Seal available. supplied in individually wrapped sachets for convenience. The product code is BW1 and there are 30 wipes per box. Eakin Cohesive® Seals have a proven record of healing sore and irritated skin, Odour eliminator - Unlike other sprays that simply mask the odour with and are quick and simple to use. fragrance, this unique odour eliminator encapsulates bad smells and neutralises them on contact. It’s available in a handy 59ml pump spray. Eakin Cohesive® Paste can be used The product code is PR310. independently or in combination with Eakin Cohesive Seals® for the ultimate in Absorbent Strips - These wafer-like super-absorbent strips quickly convert skin protection. Eakin Cohesive® Paste fluid into a gel and reduce odour and staining. Add two to three strips to does not contain alcohol, and therefore will an ostomy bag to aid fast and clean waste solidification and disposal, as not sting when placed on sore skin. each strip absorbs approximately 30ml. The product code is P100AS. Eakin Cohesive® products are available All products are available on prescription from your usual supplier. on prescription now - to request your For further information or samples to try, please visit complimentary sample please see our www.independenceproducts.co.uk, email us at advert within this brochure, call the [email protected] or call us on 01773 536814. Freephone Sample Request Helpline on 0800 052 7471 or e-mail [email protected] 14| TIDINGS| SUMMER 2010 Hollister are pleased to advise that Salts Healthcare acquires our new Moderma Flex Closed UCI Healthcare... pouch with QuietWear material is Salts Healthcare has acquired Oxfordshire’s UCI Healthcare. A Dispensing now available on prescription. Appliance Contractor with three Customer Care Centres, in Charlbury (Oxfordshire), Chesterfield and Newcastle upon Tyne. Salts Medilink has twelve This first of a kind centres and the addition of these three licenses makes the company a truly combination of bonded nationwide operation with more customer care centres than any other provider. film and fabric delivers Salts Medilink, combines the expertise of specialist nurses with that of a rapid, a single pouch reliable and discreet prescription delivery service of ostomy and incontinence material that will now, products. No other company can offer such a comprehensive and personal more than ever, address service delivered by dedicated and fully-trained staff from a network of the pouch noise concerns of customer care centres. Colostomates. And with its cloth-like Salts Medilink offers a: · Free disposable wipes and material providing a comfortable · 24-hour emergency Disposapacs feeling you will be able to go about freephone helpline (UK only) · Free vanity case with your first order your daily activities with renewed · All year round service (UK only) · Free holiday delivery emergency confidence and comfort. In addition, · Free cut-to-fit and personal service modification service · Free 48-hour home delivery as with all Moderma Flex Closed · 24-hour online ordering facility · A range of accessories pouches, you get all the benefits of · Free pre-paid envelopes for your · Prescription based service the AF300 filter to help address next order pancaking and ballooning concerns. · All makes of product stocked and supplied Contact Hollister Customer Services on 0800 521 377 for For more information call 0800 626 388. more details and to request a sample. ‘Salts launches new improved Salts Seal’ Varimate Resist ‘eye shaped’ Salts Healthcare has announced the launch of the ‘next generation’ of Washers from Peak Medical mouldable seals. The SecuPlast Mouldable Seal is superseding the Cohesive Peak Medical provide the ever range, marketed for many years by Salts Healthcare. Evaluation tests and popular Varimate range of products. patient studies have proven the new improved ‘Salts Seal’ to mould very easily Varimate Resist ‘eye shaped’ and stretch further for a closer fit to prevent leakages and sore skin. Washers are, as the name suggests, resistant to moisture and the SecuPlast Fast Facts... aggressive output from faecal stomas. With research validated by the British Skin Foundation, Research and They are also resistant to the effects of case studies have found the following key patient friendly key findings: acid urine. These stretchable, mouldable washers can be stretched · SecuPlast Mouldable Seals Are Easier To Mould to twice their original size and will - are 30% softer and require 25-30% less remain in the desired shape. For energy to deform than leading competitors partially retracted stomas, the washers can be folded and used as a filler to · SecuPlast Mouldable Seals Are More Secure help prevent unwanted leaks and due to a higher viscosity than the leading potential skin breakdown and will competitor so remain firmer when wet remain sticky even when rolled and · SecuPlastMouldable Seals Are More stretched repeatedly. Absorbant

The · SecuPlast Mouldable Seals Stretch Further - Varimate 10% further than other seals without Resist ‘eye breaking shaped’ Washers · SecuPlast Mouldable Seals Are Kinder To have an Skin - closer to the skin’s natural pH level 18mm (5.8 vs 6.9) starter hole which can be stretched to 35mm and are available in packs of The new and innovative Secuplast Mouldable Seal will supersede the current 10. Varimate Resist ‘eye shaped’ range of Cohesive seals and Cohesive slims in the UK with immediate effect - Washers are available on FP10 Cohesive Seals, Cohesive Slims, Cohesive Paste, Eakin Wound Pouches, Eakin prescription. (closed and drainable bags/Cotton bag covers), and Eakin Stoma Support Belt. The supply of the Cohesive range and other Eakin products will continue to be If you would like to receive a distributed through the Salts Medilink service in the usual DAC dispensing sample, please call the Peak method for the benefit of patients. Medical helpline on Freephone 0800 6520424. For more information on SecuPlast Mouldable Seals please call Freephone 0800 626388 or visit www.saltsstomacare.co.uk.

TIDINGS| SUMMER 2010| 15 FUNDRAISING WE NEED YOUR HELP

We need YOU!...Fundraising is an immensely Donations When sending your please markwith important source of income for the Colostomy donation/s Association...as we rely solely on donations to your letter/cheque.... Tidings Issue 18 continue our work of giving support to Thank you! colostomates... Thank you Special thanks goes to... everyone 500 Club - April Draw the Estate of for your kind Mrs Constance Alexandra David donations Mr P Smith £340.00 who sadly passed away in December 2008. Anon £170.00 The Colostomy Association has been gifted a very Mrs I Scott £ 85.00 generous legacy of £37, 443. 46 it is greatly appreciated. Anon £ 85.00 Mr A E Rowcliffe £ 85.00 Anon £ 42.50 Kind thanks to ALL Miss S Alder £ 42.50 who wrote in with donations... Mrs S Birrell £ 42.50 Mrs A Campbell £ 21.25 Anon £ 21.25 Anon £ 21.25

The High Wycombe Round Table donated £500 to the CA in April this year, as CA was one of several charities supported during 2009.

Dear Sir/Madam We are a group of Ostomates with around 30 members. We meet once a month as a social support group and invite speakers. Most of the membership has had some contact with the Colostomy Association to their benefit. Therefore please accept our donation of £30. Southampton Ostomates Support Group (SOS) Group

Dear CA, Gloria Hadfield, a volunteer with the CA, is seen here accepting a On behalf of my husband and myself cheque for £700 from Bro Harry Johnson, Secretary of the Gardeners please accept this donation £110.00. Lodge RAOB, at the Coronation Club, Clay Cross. The sum raised was instead of receiving presents for our Golden The lodge has eight members and they fundraise throughout the year by Wedding Anniversary. Since having my colostomy operation holding raffles, games nights and donations by members. The Colostomy last year I have received Tidings Association was their chosen charity for 2009. magazine and have found it very helpful. I hope this donation will help to continue the work of the The Colostomy Association would like to take this opportunity to say a BIG Association and help other THANK YOU to everyone who donates and fundraises on our behalf. We try Ostomates. to publish as many letters as possible - to those of you not mentioned here - you are not forgotten - we would not be here without you - So, PLEASE keep Kind Regards up the GOOD WORK! MM

Don’t forget...the recycling appeal! We need your old or unwanted mobile phones...telephone: 0118 939 1537 or email: [email protected] and we will send you a FREEPOST envelope. Simply place your phones in the envelope and return it to the recycling appeal. We will receive money for every phone sent on our behalf!

16| TIDINGS| SUMMER 2010 Congratulations to Owen and Madeline who recently walked the southern section of the Offa’s Dyke Path raising funds for the Colostomy Association on their way! His partner Madeline writes...

The Offa's Dyke Path runs160 miles from Charity Flowers... the Severn Estuary to the north coast of Wales at Prestatyn through the most The Colostomy Association have glorious countryside. Owen and I set out to teamed up with Charity Flowers walk the southern 80 miles of the path www.charityflowers.co.uk to receive from Sedbury to Knighton in the hottest 15% of any orders placed with spell of the year so far with temperatures them. topping 29˚C.

Guernsey Flowers Walking with a party of thirteen, mostly Limited are based on young school friends in their mid-60's and the Channel Island of their partners. This was our second walk Guernsey and have after walking the Isle of Wight Coastal Path been involved in the last year. Our friends had already knocked flowers by post off the Coast to Coast and the West business for many Highland Way in the previous two years to years. Guernsey Flowers manage the celebrate becoming 60! An idea came to us Charity Flowers website and call why not take the opportunity to raise funds centre. They also provide and pack for the Colostomy Association at the same the flowers from their own purpose time as walking the Offa's Dyke Path which built premises. is just what we did! We set up a page on the Just Giving website with a target to raise £500.00 and have been delighted with the response. To date we have The bouquets are really beautiful! You raised £800.00 taking us well over our original target! can choose by occasion, type of flower or type of gift. Thirteen was obviously a lucky number for Owen; he led the field to the finish at Knighton. Brilliant for someone pushing 74 and just four months after To order, either log onto their undergoing parastomal hernia surgery. However, it was an unlucky number for website: www.charityflowers.co.uk or me, after a 13-mile trek to Hay on Wye, I got overheated and my ankles and call the order hotline 0870 5300 600. feet swelled up like two balloons, so I had to follow the luggage van after that, Delivery is included in the price unable to walk the last 30 miles. covers the UK. At the checkout quote COL as the source code, this will Strenuous. Now what does that word conjure up for you? A grassy slope? A ensure the CA receives the narrow path into the valley? We thought our training in the Chilterns and the commission. If you do not have Lambourn Downs was just about pitched right. Wrong! Think 1-in-2 precipice, access to the Internet we do have a scree, tree roots, mud, potholes, loose boulders, ruts, and you'd come few brochures available at head somewhere close. To get to our overnight stop in Tintern, we had to negotiate office. the ‘path’ from the Devil's Pulpit (its name says everything) then had a nightmare on Caswell Wood! Owen got leg cramps and was in agony on the By choosing to purchase a bouquet descent where every step and foothold had to be carefully considered and from Charity Flowers you will not made - that was only Day One! only be giving beautiful flowers - you will be helping the Colostomy The walk was so beautiful, with riverbank, bluebell woods, moorland ponies, Association raise much needed buttercup meadows, steep country lanes, undulating sheep fields, dry stream funds. beds, cider apple orchards and high heathland, all picture perfect in May. Owen has a real sense of achievement, knowing that he managed to walk such tricky terrain and for such a good cause. 500 Club notice... Thanks to everyone who has returned Donating through JustGiving is simple, fast and totally secure. Your details are their new mandate. If you haven’t safe with JustGiving – they never sell them on or send unwanted emails. Once already done so and would like to you donate, they send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. It really is an remain in the 500 Club please return efficient and effective way to raise funds. as soon as possible. If you have any queries please contact the Head Thank you to all who supported us and gave such generous donations. office in Reading on 0118 939 1537.

In Memory... Mr Edwin C. Geary £ 194.50 If you are thinking of fundraising for the CA like Owen and Madeline why not visit their fundraising page - Mr William B Morgan £ 350.00 www.justgiving.com/Owen-Hawes. Mr David W. Cox £ 395.00 The Colostomy Association is registered with JustGiving visit: www.justgiving.com/colostomyassociation and as Madeline Thank you states JustGiving makes fundraising simple and secure.

TIDINGS| SUMMER 2010| 17 OSTOMY COMMUNITY GARDENING Gardening as an Ostomate written by Jackie Dudley

With all the weather we have been need help with making a raised bed, if shopping trolley with pockets) long having lately, my garden has needed a possible try to incorporate built in handled small garden forks and great deal of attention lately. seating for that ever important, cup of trowels, garden refuse sacks, multi- tea! Raising ornamental pots on bricks pick garden tools for picking up small While it is tempting to get out and or stands means you will not have to branches etc., work hard in the garden, we need to bend to plant, weed or water! Try take a little time to consider our body growing a mix of evergreens and • Garden Plant Supports – There are especially if we have not been used to perennials in ornamental pots as also a plethora of plant supports - doing regular exercise for a while. To these will look good throughout the hoops, arches, stakes and pyramids as prevent any strain to our back and winter and you will have flowers every well as good old trellis. We are all more especially the area around our year. You can now buy wheelie pot being encouraged to grow our own stoma we need to remember to take stands for ease of movement. vegetables. Why not grow your care. The advice given to me stated tomatoes, peas and beans up against quite clearly, ‘not more than one hour • Stretching – To prevent stretching a trellis making them easier to pick. at a time’. I have to admit that at first I why not simplify your garden. Increase Start off your seeds or buy raised tended to ignore this advice but soon or decease the depth of your borders seedlings and plant them out in grow changed my mind! I found that having so you weed or plant out without too bags placed on an old table or stand – a break for a ‘cuppa’ certainly helped, much effort. If you already have deep ask for help with any lifting. it allowed me to take time completing borders plant shrubs at the back of garden tasks that have since given me the border that are variegated or • Start an Exchange Club – for the a great deal of pleasure – and no evergreen source varieties that require over abundance of crops and with the pain! little maintenance. Only plant the economic climate affecting us all – border edges with bedding plants. why not try the barter system. If you So, what can we do to help prevent Introduce shingle or bark to cut down are unable to cut your hedge or mow strains to our body and at the same on weeding. Consider doing away the lawn why not offer your services time protect the vulnerable area with flower beds altogether and to your neighbour – baking cakes, surrounding our stoma and the stoma replace them with lawn, shingle or repairing items, ironing, in exchange itself? The answer to the first point is paving. Position container grown for their gardening skills? to do some gentle warm up exercises plants at regular intervals to attract the that will help blood flow to the eye and grow plants that are both bird Gardening is physical work but with a muscles, your GP or stoma care nurse and insects friendly. little forward thinking it can be easily will be pleased to advise you. managed and is highly rewarding and Secondly, invest in a good support • Pushing – If you are using a hand good for the soul. The best part of garment. These are specialist garments push mower take great care, as you gardening is sitting in a comfortable available on prescription and will give will be using your tummy muscles. It chair on a warm summers day extra support to your tummy muscles may be a good idea to replace it with admiring the fruits of your labour (or as well as additional protection to a rotary mower, or better still ask that of your neighbours!). your stoma. (Your stoma care nurse someone else to cut the grass for you. will be able to measure you and help If you use a wheelbarrow remember The weather forecast is good for this you find what suits you best also CA you are lifting as well as pushing. Try summer – and I am sure we shall all has an information sheet available not to fill the barrow too full although be out in the garden enjoying the listing current suppliers of support it may take longer to transfer the sunshine. I would love to see photos garments). contents it is better than the risk of a of your gardens in full bloom do write pulled muscle or strain. in and tell me your best gardening tips Wearing a support garment may take – if you share them I am sure we will a while to ge used to and produce • Lifting – This is something we often all benefit! ‘pancaking’ but that is a small price to do automatically without thinking only pay for the satisfaction of good to wake up the next day with an support for the weaker areas of the aching neck or shoulder. Remind body. If you do have a hernia it must yourself before picking up a pot or be protected and supported. If you are lifting a watering can to think about lucky enough not to have a hernia your position to avoid straining Editors Comment then it is even more important to yourself. If you are watering your safeguard against that possibility by garden with a watering can fill it mid- If you would like to share your taking those extra minutes to put on way or better still use a hosepipe gardening hints or tips your support garment or belt. This unless of course there is a ban in your write to: should help prevent a hernia forming. area. Better still ask someone else to do it for you! Jackie Dudley - Trustee Here are a few of my top tips… Colostomy Association • Helpful Tools – Walk around any 2 London Court East Street • Bending – When bending over garden centre these days and you will Reading RG1 4QL always bend at your knees not your find items that will ease the pain of waist. Instead of flowerbeds at ground gardening. High kneeling pads that are or contact the editor via level why not try introducing raised also a seat, a new type of wheel- e-mail: flowerbeds into your garden, this will barrow that can be pulled – not [email protected] ease the amount of bending. You may pushed, a garden tidy (rather like a

18| TIDINGS| SUMMER 2010 available from Pelican Healthcare. New Sole UK Distributor of the Eakin Range of products.

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One of those “unreal” moments… John Ellis - “I have had a colostomy experience of other colostomates. I am on a ship sailing through the for just twenty years and cruised My modest scientific knowledge and Coral Sea, North West of Australia… annually almost ever since. In the observation tells me that the liner at the Chief Engineer’s cocktail party. early days it was exclusively standard does not breakdown usefully in the Other guests sip cocktails and nibble pouches which I emptied - often short time in the water in the bowl on canapés but I am talking to the messy and time consuming. and before passing into the pipework Chief Engineer, himself…about toilets! to make much difference to the When the flushable pouch appeared it package being sucked through the So how has this come about? Well, made the daily changing easy, quick vacuum system. The less flexible while on holiday I decide to continue and effective. It did worry me flange must be an added load on the my investigations into whether the sometimes when a used pouch did system and I prefer to remove it. My flushable liner of toilet-disposable not flush at the first attempt, scissors do sometimes become pouches can be flushed down the loo especially when very full, but that was slightly soiled in the cutting process on a cruise ship. I wrote to the Chief rare. It was usually easy to overcome but a wipe with loo paper followed Engineer, sent him samples of the with a quick snip of the pouch by short soak in some diluted Dettol two flushable products on the market, material, where air would be trapped, should be enough to keep the bugs and in return he invited me to his before a second flush. at bay. For added hygiene you could cocktail party. As the party goes on all use disposable gloves. around us, we speak of appliances, My first experience of the flushable narrow bore pipes, maceration units, pouch on a cruise worked, but only Don’t be put off converting to sludge and black water, but neither of just. The adhesive flange was a rather flushable products. They are us mention the words “colostomy” or substantial component to be sucked improving all the time and soon there “toilet”. into the modest exit aperture of the will be many more users passing toilet bowl and on one occasion it them through the sewage systems He doesn’t directly answer my blocked, out of sight in the small bore without blocking up the works.” questions. However, I get the distinct plumbing. Yes, it was embarrassing to impression that it is not the liner, but find a ship’s engineer working on the only the flange that might possibly pipework behind a door just down Monty Taylor (CA Chairman of cause a problem – not just in the the passage from my cabin a while Trustees) - has also recently been pipework, but also by clogging up the later, with an ominous odour in the cruising. When he spoke to an macerator unit which results in quite air, and to be reminded that only loo engineer on the Azamara, he was also an unpleasant task for “the lads down paper should be put in the bowl. I told that that no flange should be put below”. believe about a dozen cabins were down the loo but if the flange is put out of action on that occasion. detached and put into a disposal bag Two readers have also contacted us there would not be a problem as the to tell us about their experiences My loathing of putting used pouches rest is bio-degradable. using flushable pouches aboard in the bin in the miniscule en-suite cruise ships. shower room and a determination to make the clever flushable pouch work Written by David Dungate - “Since the operation demanded an alternative solution. I Rosemary Brierley I have been around the world three decided that I would snip the flange Associate Editor times, travelling to all parts of the at ‘fifteen minute’ intervals round the globe… More recently, these travels rim towards the centre to make it less have involved cruising, first on the of an obstruction. It worked – Celebrity Cruise vessel "Summit" reluctantly! To make sure it had gone through the Panama Canal, and then I added some extra water to the bowl on the P & O ship, "Arcadia", from the and flushed again and all was well. Editors comment UK to Australia. However, my However, I felt it would be better to If you would like to have your say or preferred bag is a Welland Freestyle separate the flange completely from contribute to the above debate or Flushable, and, contrary to some of the pouch and add a little extra water would like Rosemary to focus on the advice you have received, I to the bowl in future. I have never a particular topic experienced no problems on either had a problem since. The separated or issue that affects you ship, disposing of the bags in the flange can be wrapped in a disposal please e-mail: toilet with no ill effects to the system. bag to make a very compact disposal associate-editor Indeed on the British ship I spoke to in the small bin supplied. an engineer, who was aware of @colostomyassociation.org.uk disposable colostomy bags, and he I have not tried the only other or write to: advised that they presented no flushable product available today, the Associate Editor, problem as long as they were not two piece item, for cruising nor tested Tidings Magazine, accompanied by any non-degradable my preferred brand without removing Colostomy Association, items like the outer bag, or wipes, the adhesive flange because I was 2 London Court, etc.” content with flushing just the East Street, Reading, biodegradable pouch and its contents. Berkshire. RG1 4QL I would be interested in the

20| TIDINGS| SUMMER 2010

IRRIGATION COLOSTOMATES EXPERIENCES Irrigation and you... Sue Hatton Executive Trustee writes...There has been another wonderful mixed bag of responses on Irrigation from the last edition of Tidings. Maybe that is not quite the right expression! Thank you all for your valuable contributions please keep them coming. We would especially like to hear from stoma care nurses who promote irrigation to their patients.

I had a calamity, when I went to urging her to reuse the sleeves than Reading for a recent editorial ensuring that the water was at the Triumphant! - Irrigation works... meeting. Arriving after the meeting in right temperature etc., This call Swindon for my granddaughter’s accentuates the need for an irrigator Christening the next day, I realised I buddy system. My suggestion - had left my base plate behind at my a stoma care nurse asks an accommodation! I found to my experienced irrigator to help dismay that I could not irrigate. someone new to the procedure. Adding to my misery and realising it I would be pleased to have your was a Friday I was unable to get feedback on my suggestion! anything posted in time. I was very pleased that the CA stoma care nurse asked for my advice, she Now, how would you cope in this admitted that she felt a little out of situation? I had to go for three days her depth giving confidence to a new without irrigating, something I do irrigator involved in the irrigation In October 2007, Richard (pictured every morning! I was extremely process. centre with son Tim and wife uncomfortable and even more fed up Rosamond) was diagnosed with when everything started to explode A couple of points came forward rectal cancer. in the middle of the night - ARGH! from these calls... Richards takes up the story... I also had an inquisitive two year old ‘Pam’ didn’t like the smell in her It was a major shock to the system asking me, ‘What you doing Granny?’ ensuite. I suggested that she light a as can be imagined but I had Has anyone else got a good retort to scented candle or use an air magnificent support from my family satisfy little people! freshener. and friends. Having had to undergo radiotherapy, chemotherapy and Note: Irrigation equipment is very Pam admitted that she didn’t think surgery I was left with a permanent light - so if you go away regularly the water was warm enough as she colostomy. Six months of further why not take a spare set of could feel her bowel contracting chemotherapy left me pretty low. equipment with you. I wish I had! when she tried to insert the cone I felt the only way forward was a and the water. She also resented the major challenge so I applied for, Well, enough of me here’s what time sitting by the loo; I suggested a and got a place in the 2010 Virgin you had to tell me... good book, radio, magazines or London Marathon. My son, Tim, facemask and manicure! joined in running for the RNLI and I had a my wife Rosamond became Team fascinating call She also disliked rinsing out the Manager! (If you decide to take up from Richard sleeve and reusing it. The stoma care any form of exercise always check Farrow who nurse had only given her three with your GP before hand.) sent me a sleeves to last ten days. I suggested The GREAT day arrived - 25th April sample of his a large jug of water next to the loo, 2010. Was I fit enough – No! Was I prototype so that the sleeve is unravelled and going to get round – YES! With sleeve (see rinsed out into the loo while still help! Sure enough we did it! But left) and attached to the belt, this means that what about my colostomy bag. Did described his there should be no faeces going into the irrigation hold up? I had not method of the sink. checked the bag for some time so reusing the what would I find? NOTHING! sleeve and A few queries - Reusing sleeves... Irrigation works! No residue left doing without a base plate. Maybe, Perhaps some of you have the behind, no problems, and no if this had been in my overnight kit I answers? worries during the run. would not have been so • How many of you reuse your uncomfortable! sleeves? We received our medals – what a • Is there a recommended reuse for great moment! I had completed Another call was from a very stoical this product? 26.2 miles. I was exhilarated if lady who has had her colostomy for • Should we be asked to pay if we somewhat overwhelmed. do not want to wash out the 20 years, but has had to have a My thanks go to my stoma care urostomy as well because of failing sleeve? • How long should we retain the nurses Jan Beard and Anna Wallace kidneys. Her stoma care nurse from Beckenham Beacon Hospital suggested that she try irrigation! She water bag before renewing? • How many people steralise the for their initial instruction and for was on her third day of ‘giving it a equipment after use, what is their help in getting me started go’ and wanted to chat about it. recommended? with irrigation. She was given half an hour of Note: The CA does not endorse reusing instruction by her stoma care nurse, sleeves due to the possible risk of infection Richard Allardyce who seemed to be more intent upon via contaminated equipment.

22| TIDINGS| SUMMER 2010

SPECIAL FEATURE DIVERTICULAR DISEASE Pathways to a colostomy Diverticular Disease with readers’ experiences For about one in Diverticular Disease is very much a What are the Symptoms? Cinderella Disease in as much as The symptoms vary depending on the ten people with a there is some research but no level of the disease. If there is mild answers just theories. Diverticular disease where the symptoms are colostomy, their stoma Disease first became recognised at the vague for example lower abdominal was formed following beginning of the 20th century and pain may be felt usually on the left although the incidence of the disease side. Any further features of a severe attack of is unknown, it is considered to be an inflammation, such as a temperature older person’s disease. Very often could mean Diverticulitis. Pain is diverticulitis. people are unaware that they have generally associated with eating and is the disease and as yet there are no relieved by passing faeces. For some the stoma magic cure-alls that will prevent it or may be permanent, prevent further episodes of In Diverticulitis the symptoms are diverticulitis occurring. For those of us similar, abdominal pain, fever, a others may be searching for answers to medical change in bowel habit, feeling sick or conditions such as Diverticular being sick and in some cases passing offered a reversal Disease, the Internet has become an blood. invaluable information resource, however, offers of cures for medical • Bleeding - Diverticular disease can conditions should be treated with account for over 40% of lower some scepticism. It must be intestinal bleeding episodes. Severe remembered that there is no haemorrhage can arise in 3-5% of substitute for professional medical patients with Diverticular disease. The care and advice given by your site of bleeding may more often be Consultant, G.P or Colorectal nurse. located in the lower colon (large bowel). The bleeding is usually abrupt What is Diverticular Disease? painless bleeding. The patient may The term Diverticular Disease includes have mild lower abdominal cramps or diverticulosis (the presence of small the urge to have their bowels open, pockets or sacs or diverticula, in the followed by passage of a large intestine wall) and diverticulitis amount of red or maroon blood or Christine has written (inflammation of these small pockets clots. many articles and also or sacs). Diverticular Disease occurs in co-authored the book the bowel from problems relating to • Acute Diverticulitis - The Patient the presence of diverticula and/or pictured below will be admitted to hospital with diverticulitis. Diverticular bleeds, and acute abdominal pain, fever, possibly with her friend and long-term effects of recurring episodes bleeding. They will have had colleague Pat Black of diverticulitis, may result in symptoms for several days that have narrowing, thickening and poor not resolved either from own function of the bowel in a specific remedies or that of the General area. Practitioner. The first treatment will be antibiotics. Research into Diverticular Disease is yet to produce precise evidence as to • Severe Diverticulitis - Patients are the causes associated with the admitted to hospital with severe disease. However, it is thought that abdominal pain, a high temperature. several factors may contribute to They usually arrive in A&E in the changes in the wall of the colon. middle of the night. They are then These include:- rushed to theatre where the on call team operate and a Hartmann's • Diet related e.g. a low-fibre diet procedure is the operation of choice. • Ageing This involves a laparotomy (opening • Internal and/or external pressure on of the abdomen) the part of the the intestine bowel affected is removed and a • Internal physical differences colostomy is raised. The patient • World population differences e.g. usually then goes to the intensive care This article was written those from western countries have unit. by Christine Hyde RGN CNS left-sided disease whereas those in partnership with from Africa and Asia have right-sided There is a move to reduce the number Jane Wood disease of emergency operations by offering Editor Tidings patients a chance to have surgery following two episodes of

24| TIDINGS| SUMMER 2010 diverticulitis. This is happening more tomography (CT) scan, ultrasound, The advice given is to eat more fibre for the younger patients but is and other imaging techniques may but this in its self may cause more becoming more acceptable for other help locate diverticula and any problems. Patients should be advised patients. It may mean that they do not inflammation, fistulae, abscesses, or to eat foods that suit them and their need to have a colostomy and more other abnormalities. Today more symptoms rather than follow a list of importantly they are not as ill as they patients are aware that they have specific do’s and dont’s. A food diary would otherwise have become. Diverticular Disease because of can help the patient to determine investigations for a range of bowel what foods suit them and perhaps Patient Treatment problems. This means that although more importantly learn what foods to Patients will have their abdomen there appears to be an increase in the avoid. This in itself may well help to examined for tenderness, swelling, disease what it really means is more improve patient outcomes. Regular and guarding to detect any unusual people are aware of the disease. exercise may also have a part to play - mass around the intestines. Other always seek medical advice before tests may also be carried out on Nutrition may play an important part starting any exercise regime. blood, urine, and stool for signs of in prevention and treatment of both infection or blood. Computer Diverticulosis and Diverticulitis.

Diverticula Explanation of terms... push through weak parts of Diverticula, Diverticulosis and Diverticulitis muscle wall What are Diverticula? Diverticulosis. This 'symptom Diverticula resemble pockets or sacs free' form of the condition is and occur in the intestine, usually the sometimes known as Wall of colon large intestine or colon. The diverticula Asymptomatic Diverticulosis. or small pockets bulge outward Diverticulosis is a very through weak spots (like an inner tube common condition with 50% that pokes through weak places in a of people being affected by tyre) in the bowel wall. The pockets or the condition by the age of sacs trap faeces in which bacteria 50, and 70% by the age of multiply, resulting in inflammation. It is 70. Approximately 75% of not known whether one diverticulum people with diverticulosis will (pocket/sac) presents singly and then not experience any symptoms spreads or whether they occur all at associated with Diverticulitis. once. They can be found in any part of the bowel. However, they occur What is Diverticulitis? predominantly in the sigmoid colon. Diverticulitis is a condition in Diverticula trap faeces in which which diverticuli in the colon bacteria multiply What is Diverticulosis? rupture. The rupture results in and pocket If diverticula are present in the colon, infection in the tissues that becomes the condition is known as surround the colon. inflamed

Diverticular Disease - readers’ experiences Readers’ PANEL Two readers tell us of their experiences: Carol who has now had a reversal contributors and Wendy who still has a stoma and is back living life to the full.

to the diverticulitis and gave me anti- had to be cared for at home. But I Carol writes... biotics and pain killers but to go to had a wonderful surgeon, Miss A&E if it didn’t get better. Donellan, at The Conquest Hospital in Hastings and an excellent stoma In November 2007 I was To be honest I felt so ill that I couldn’t nurse, Sue Field, who helped me diagnosed with diverticulitis face getting out of bed to go to the tremendously and although I didn’t after just a couple of hospital and the painkillers helped. like having the stoma I realised it had unpleasant bouts of stomach The following Monday my GP phoned saved my life. pain accompanied by to see how I was and asked me to go constipation - nothing too to the surgery. She took one look and They said I could have a reversal six serious. At the beginning of sent me straight to the hospital. After months later and at first I couldn’t February 2008 I was very a scan and some tests I was rushed to wait but as the time drew nearer I well. I had had friends theatre as I had an abscess which had was very apprehensive. I’d coped for dinner the previous burst causing peritonitis. I had no time quite well with the stoma and had evening and was just about to go to to be prepared so I didn’t even think even been abroad. I’d also been the hairdressers when I was gripped of the consequences of waking up reading an article on people who’d with agonising pains and diarrhoea. with a stoma. had a reversal and wished they hadn’t. After an hour or so, I was able to At the end there was a piece written phone a friend who came over I was still very ill of course having had by a surgeon who said most were straight away. I remained in severe a Hartmann’s procedure. I truly successful, so I wasn’t sure what to pain and was vomiting too so she believed I was going to die and it was do. I decided to delay it, partly called a doctor. When he arrived he four weeks before I was discharged because I was about to become a said it was probably an infection due and even then I was very weak and grandmother and wanted to be able

TIDINGS| SUMMER 2010| 25 SPECIAL FEATURE DIVERTICULAR DISEASE Pathways to a colostomy Diverticular Disease - readers’ experiences to help, also I wanted to visit some doctor came, he examined my tummy without any anxieties as there are no friends in Florida and Christmas was and wondered if I might have a touch loos on the 5km. course. coming up. In the end I decided to go of food poisoning as these were pains I have learned that there are some ahead. I am a widow and have a new like I had not had before when the things my stoma doesn’t like such as partner and thought it would be nicer diverticulitis had flared up. He said to spicy food, garlic, onions, swede or if I didn’t have the stoma to worry call him the next day if I was no Shreddies; and that corn flakes tend about. I had the reversal last February. better. Well, I wasn’t! He came, took to make me constipated. Fortunately I It all went very smoothly although my temperature, then said the like Weetabix so enjoy that at there were a few hiccups when I first dreaded words, ‘ambulance’ and breakfast time. I cope perfectly well came home, but after a few weeks ‘hospital’. with fruit, cabbage and even a few there was no looking back and I am sprouts are no problem; I have also so pleased I had it done. Once in hospital (Southampton had the odd glass of wine. General) various questions were I am getting married in April and am asked and tests done including a CT At the moment my stoma sits quite very grateful for my new life. scan. On Friday morning it was off to happily on top of a parastomal hernia theatre, where due to an eruption of which is no bother. It is usually very the diverticula it was found that well behaved, but when pancaking peritonitis had set in. Nine inches of occurred my stoma nurse bowel was removed, a Hartmann’s recommended a small bridge be put Procedure performed and when I in the bag which has helped Wendy writes... woke up in HDU, there was my stoma considerably. I sometimes put a small all ready and waiting. amount of baby oil or gel into the bag which also helps. When I change my At the time of my operation, I A couple of days later I was moved on bag at home, I use soft baby wipes was an active, healthy sixty- to an ordinary ward, where I met a with aloe vera, and have had no skin five year old and still working lovely stoma nurse named Diana. She problems. If attention is needed when part-time as a dispensing talked to me about what had been we are out or I am at work, I use technician for a big done and then about the stoma, after ordinary ‘wet ones’ which I carry in my supermarket chain. About which she showed me how to look small handbag-size kit. This also two years or so before after it. A couple of days after this she contains a Radar key a couple of spare surgery, I had really bad watched whilst I changed the bag bags plus an adhesive remover, stomach pains and on myself, then after that I managed very tissues and disposal bags. visiting the doctor was successfully on my own; always diagnosed with knowing, however, that Diana would I live happily with my stoma and, diverticulitis, subsequently be there to answer any questions and having had two big operations in the confirmed following a barium enema. help if necessary. By now, I was eating space of three months, I am not The doctor prescribed strong once more and my stoma was looking to have a reversal. I have since antibiotics and also Mebeverine, and beginning to function. Whilst in been seen by my surgeon, and he told me that were the attacks to hospital I lost a stone in weight which, also feels that as there are no continue it could, in time, lead to by all that is wonderful, I have kept problems to leave well alone, and he surgery and the possibility of, horror of off. has discharged me. horrors - A BAG. He also said that Before going home I was given a should a further attack occur I should second CT scan as a tumour had been Life with a stoma, then, can be easy ‘take the tablets’. This I was perfectly discovered necessitating the removal and straight-forward and be lived fully happy to do and yes, the tablets of my spleen, part of my pancreas and and satisfactorily without anxiety, worked both the first time and then as also, of course, the tumour. I know it unnecessary awareness or further attacks subsequently occurred. is thanks to having had to be embarrassment - enjoy it. admitted originally for diverticulitis, As one of my activities, I enjoy walking that the tumour was discovered. I but was always a bit anxious therefore feel that my stoma is, in a wondering, “will I need to ‘go’ way, my life saver. urgently” and if so, would there be a handy convenience. Occasionally, After a week in hospital it was time to when there was no nearby loo or come home, and then just over a even convenient hedge, the worst week later John and I went to Devon happened with pretty dire for a holiday which was a really quick consequences. way of showing me how little trouble a stoma is to cope with. Since then I One morning, however, a Wednesday, have made three short-haul flights, I had got up to go to work, had my and am looking forward to my first breakfast, and then somehow long-haul. I am back at work- usually managed to crawl back upstairs to the cycling there, a distance of three miles bathroom with the most agonising each way; and also back walking pains I had ever had. I woke my without fear of accidents or husband, John, who eventually got me wondering where the nearest loo is. undressed and back into bed and This year I took part once more in the phoned for the doctor. When the Race for Life - this year, of course,

26| TIDINGS| SUMMER 2010 better together better

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In partnership, we can deliver both your appliances and medication to your door. It’s a new service with one call, one delivery and no hassle, freeing your time. To find out more, and to win the chance for you and your family to spend the day with Keith Harris and Orville the Duck, please complete and return the reply paid registration form included in this journal or call Freephone 0800 888 501 This fully personalised service is designed by you, for you. There’s more to life than collecting your prescription… Pharmore! READERS’ STORY TRAVELLING An ostomate’s travelogue downunder... Written by Moira Hammond

Moira, Michael and Chris Hammond on Christmas Day at Bucklands Beach, Auckland Reader PANEL Since my permanent colostomy was formed five years ago due to rectal contributor cancer when I was 62, I‘ve taken several holidays overseas. I have gained courage and advice from others who have managed. I thought I would share some of my recent adventures in Australia and New Zealand with you all...

My husband Chris and I visited New home is of course, no daily unpacking So the great day comes, an 11.00am Zealand on two occasions prior to my of suitcases; the advantage of a car is departure from Heathrow meant a surgery to visit our son Michael, who that it is much cheaper! We did our 6:30am flight from Manchester. Oh, lives in Auckland. However, we had sums and decided to go for the how I hate early mornings! A couple always promised ourselves a trip to comfort of a motor home. We would of Loperamide tablets to slow things Australia to visit friends and relatives economise by cooking in the van and up on the bowel activity front are there, so we eventually booked a two- picnicking. useful. month trip. The first hurdle was sorting out the insurance, which was So much planning to do...Trying to No problems with airline security and now a little more complicated as Chris pack lightly! Sorting summer clothes I wasn’t subjected to the body had had a minor heart attack last year. (with a few warm ones just in case), scanner, but on one occasion However, we got a good annual policy shutting the house down, writing early (Melbourne to Auckland flight) I was from Columbus, which gave us 60 Christmas cards and letters, ordering called to one side for a ‘random’ body days cover (many only give 30). medication, plus all the other check. They gave me a written necessities, not to mention how many explanation and I explained I had a We spent many hours pondering our pouches to take! My distributor was colostomy. The check-over with an holiday route round Australia - we good enough to agree to post a ‘electronic wand’ and ‘frisking’ was all wanted to visit an old college friend month’s supply out to Michael in done in a reassuring, friendly and of Chris’s who lived in Sydney and Auckland; even so the first month’s efficient manner. They then checked some distant cousins in Canberra and supply (plus extras in case there were my hand luggage and wished me a Leeton, and then journey to any delays leaving Australia) meant a happy journey and goodbye - I wasn’t Melbourne and Adelaide if possible, fair number. Would the heat mean at all bothered by any of the travelling to Auckland in time for that the hydrocolloid adhesives might procedures. It could be a co-incidence Christmas with Michael and a tour of come off? I took OakMed microskin but on this occasion I had shortly the South Island afterwards. From ones as extras as well as Coloplast before made use of the disabled toilet experience we have found a break in plugs for swimming, plus of course to change my pouch. Perhaps airport the journey such as a two-night some drainables in case of a tummy cameras thought it strange that an stopover in Singapore and a three-day upset. All this doubling up meant a able bodied person should spend so one in Bangkok really helps conquer considerable number of pouches! The long in that toilet! Otherwise, it was jet lag. main supply was to be carried in our just the usual metal detector arch. hand luggage of course (liquids in the The next decision was whether to hire obligatory plastic bag) and extras The flight to Singapore was uneventful a car or a motor home for our divided between both suitcases in the with my bowels behaving well. Flights adventure. The advantage of a motor hold. on this trip were trouble-free: the

32| TIDINGS| SUMMER 2010 feared, but illogical, wind in the bag Snowy Mountain area we continued We stopped at many beaches; Awaroa, situation doesn’t occur I didn’t have to towards Melbourne stopping off at was one of the most beautiful I have change my pouch while in flight, Phillip Island to see the evening ever seen. We enjoyed a picnic and a though I have done so before now. Penguin Parade - about 1000 cute swim in sparkling clear water before little Penguins come ashore each night reluctantly rejoining the boat on its We arrived at our Orchard Road Hotel to feed their chicks. Another stop was return trip viewing seals on the rocks at 8.00am, and after checking-in, had Ballarat, an old gold mining town with as we went. a four hour sleep. Orchard Road was notorious extremes in weather. The brilliantly lit with Christmas first night it was really cold but the A few days later we were walking up decorations, Rudolf and Jingle Bells day soon warmed up as we looked the glacial Hooker Valley towards the playing, so strange in all that heat. round the town. The next day it foot of Mount Cook for a four-hour Back at the hotel the combination of reached nearly 38ºC as we went walk. We spent a couple of days in tiredness, heat and I suspect, a very round Sovereign Hill, which replicates Christchurch, the most English of cities cold dessert that evening, hit me. I the life in Ballarat 150 years ago. An before travelling to Kaikoura where we started being sick, ‘Oh dear’, I thought, entertaining and fascinating place. had booked a boat trip to watch ‘A tummy upset already. What a start’. whales. Sightings are almost However, after an hour or so it all On the practical side of travelling with guaranteed, as this is where young settled down and I awoke the next a stoma, it was easy in Australia when male sperm whales come to mature. morning feeling fine! What ever it was camping, as the amenity blocks were We were lucky to see three whales at didn’t get to my bowels. so good. The shower cubicles were quite close range before they flipped nearly always in two parts with a dry their tails and ‘sounded’. We left Singapore on an evening flight area with a bench and coat hooks, so to Sydney where our friends met us. I was able to hang my changing bag On our return we stopped on the We did the obligatory visit to the up and spread all the bits and pieces volcanic plateau - one of the film Opera House and a day trip to the out on the bench, whilst using a little locations for Mordor in the film ‘Lord Blue Mountains with a walk at a of the shower water to wipe my of the Rings.’ We wanted to see the nature reserve. It all made for a very stoma. I had been keen to have toilet volcanoes clearly so the following pleasant stay with good friends. facilities in the van for changing my morning we got up at 5.30am to be pouch, but in fact there wasn’t enough rewarded with perfect views, but as Our 17 day motor home journey then room to change. the sun rose, clouds began to gather commenced... All mod cons included: and we returned to our motel before sink, cooker hob, microwave, fridge, Disposals were not a problem, I travelling back to Auckland. shower and toilet. First to Canberra sometimes use a drainable bag which where it was lovely to meet relatives cuts down on the number needed but I guess I’m a lucky ostomate to be and see the city. As we travelled on am in the habit of emptying the pouch able to tackle this journey without any towards Leeton the countryside in the toilet first, then fold it to stick to problems, but I have well behaved became a bit more arid. However, the itself, pop them in the bag and twist, bowels and enjoy all sorts of food. Murrumbidgee River has been many times and double it back into Michael took us to a lovely Japanese developed to provide crop irrigation, the bag before tying. It makes a very restaurant where we enjoyed sashimi as it is a big fruit growing area. Herein small packet which I put in the hotel (all raw fish:- scallops, salmon, lies a story. bin or take out with me to find a bin octopus and white fish). The next in a public toilet or I leave them in the night it was a Korean buffet meal, We had stocked our fridge up with sanibins in the campsite toilets, (yes I more sushi and oysters amongst other fruit and vegetables at Wagga Wagga, know it is easier for ladies). I exotic things. (what a lovely name) and set off explained to my friends about towards Narranderra when we saw disposing them in their rubbish just as I think Michael was on a quest to get road signs saying “Eat your fruit now babies’ nappies are disposed of. me to do unusual things; we went or throw it away.” ‘How peculiar’ we snorkeling among some quite sizeable thought. Then more signs warning of Travelling to the Grampian Mountains fish at Goat Island and body boarding large fines and a fruit fly exclusion and camping at Hall’s Gap, we were on a surf beach! Having put a plug in zone. Eventually a lay-by with bins and treated to the company of six emus my stoma and a support garment a large notice ‘Stop here and deposit and a group of kangaroos. We then under my costume, I ventured into the all fruit and tomatoes. $11,000 fines’. drove along the stunning Great Ocean surf and soon got the hang of catching We consumed bananas, apples, Road with fantastic scenery and huge the waves, only getting knocked off tomatoes, cherries and wonderful waves crashing onto the cliffs. Then once! mangoes and then fearing a bit of a finally, we returned our little home on revolt from my insides, reluctantly wheels at Melbourne, staying a couple Sadly, the last week flew by and we threw the rest away! What a waste. of days exploring the lovely city whilst had to say our goodbyes to Michael, looking forward to spending Christmas but still a bit more holiday to come as Through all this my stoma and with Michael. we flew to Bangkok. pouches behaved impeccably, though my skin did get a bit spotty at one And what a different one that was! We So the trip of a lifetime ended, time, due I think to the heat. As my sat on a lovely beach near his home thankfully without unwelcome output is pretty predictable I thought eating crayfish with salad and fruit and incidents and I would encourage any an airing would be the answer. Being swimming in the gorgeous calm sea. would-be travellers to enjoy their high up in a van, I was able to travel, After a few days we set off with holidays whatever they arrange. The Chris driving of course, – pouchless, Michael to the South Island, spending trick is to plan well and be positive. (no output, despite all the fruit!) with 3 days at Nelson. One of our best We might not like what life has done tissues, wipes and pouch to hand. A outings was a boat trip from Kaiteriteri to us by way of plumbing alterations, few days of this treatment with up the coast of the Able Tasman but we are still here so “Go for it”! applications of barrier lotion and all National Park on New Years Day. We was well. (Does this qualify for the thought of everyone back home Good luck to you all! unusual pouch change competition?) battling the snow, it made me realise Moira Hammond how lucky we were. Returning towards the coast via the

TIDINGS| SUMMER 2010| 33 YOUNG OSTOMATES BREAKAWAY Breakaway May Weekend 2010 A buzz of activity and excitment...

As the first event of 2010 approached I began to worry as I always do every year! As Breakaway grows a pace so Hannah’s Breakaway Diary does the responsibility. I find myself asking the same old questions...Will Thursday 27th May 2010 (the night before Breakaway) people turn up? Will it be as good as I am so excited about tomorrow I don’t think I can sleep! I the last one? Will people get on with am especially excited as I had surgery a few months ago to have a Mitrofanoff, it’s all very new and scary! each other! Friday 28th May 2010 However, as usual my worries were I had a visit from my nurse this morning; she brought me a all for nothing as on Friday evening Hannah Montana bag so I can carry my catheters about families slowly but surely trickled over the weekend. There are lots of new families and through the door. There was a buzz some I already know. We had dinner then played silly of activity...families who had attended games outside. One with wellies on the wrong feet and previously came bounding through another one with cups of water, one Mummy threw a bucket of the door full of excitment! Children water over a Daddies head. It was very funny! Bedtime now I abandoned parents unloading their don’t want to go but we are up early in the morning - night, night! cars, and went off to check out their new surroundings. New parents with Saturday 29th May 2010 their children arrived nervously , but After Breakfast we got on a coach to go to the activity place. I did were soon at their ease as they began canoeing first which was really good fun. We got soaking wet through, my to realise they were in the midst of Daddy fell out his canoe when he steered it into a bush, everyone ‘families just like themselves’. laughed at him. After a lovely lunch we went on a huge zip wire which was about 11mtrs high, I was really scared, but the instructors helped me I asked Hannah (aged 9) my daughter and reassured me and ZOOOOOOM! It was fab! Then we went on the to keep a little diary of the weekend. high ropes course, I decided I didn’t want to do this, it didn’t matter – no The idea being that she could share it one makes you do anything you don’t want to do. I stayed with one of the other Mums and had a cuddle out of the wind; it was very funny watching with other people to explain what other people fall off. A face painter came after dinnertime, which was goes on at a Breakaway Weekend! great fun, I am in bed now and I still have flowers on my arm.

Breakaway is now in its fourth year, Sunday 30th May 2010 and this was our sixth event. As I said This morning I had 3 goes on the climbing wall that came to the hostel, earlier Breakaway is growing a pace on the last go I got right to the top! My friend Brett came today. Mummy and our greatest hope is that it will let me ask him to come as he has been a very good friend whilst I have continue to do so - so that no family been poorly recently. We played some games with the instructors, had an has to travel on this journey alone. ice cream and a mini farm had ben set up with little pigs, lambs, chickens, and a pony - we got to feed the lambs their bottles. The best bit was tonight, we had a BBQ inside as it was cold, followed by a disco and we Julie Bastin all had glow sticks. I danced and had fun with all my friends! Chairperson Monday 1st June 2010 I slept in today and missed Breakfast, one of my new friends; she is only five, came and woke me up by climbing up to my bunk and pulling the covers off me! We had a look at different things from the stoma care companies this morning, which was good. After lunch it was time to go home, I was sad to leave. I just can’t wait until the next Breakaway, it’s a weekend where I can just be me - it always makes me very happy! See you again, Hannah

34| TIDINGS| SUMMER 2010 “Great opportunity for families to share Up and coming experience, gain support, and friendship. Breakaway Events The kids get to have fun and develop their independence. It’s great!”

Breakaway Christmas Party Fri 3rd- December 2010 Sponsored by

YHA Ilam Hall, Peak District Max (Age 17) writes... Derbyshire Breakaway, well what can I say...I have been to every Breakaway weekend since 2007 - the event really is an emotional roller coaster ride but what a Cost £41.95 per person for difference it makes to all who attend! 2 night’s full board, inclusive of all festive fun! When you get there, you think - finally, people I can share my story with who understand. I can listen to other people’s stories and pick up hints on how they get over any problems. You also learn that there’s loads of things Breakaway 2011... you can do even with a bowel and/or bladder problems, things that I YHA National Forest thought I wouldn’t ever do again after having the op. • First weekend Fri 29th Without Breakaway to go to I think I would still be a shy closed person scared of people ever knowing I’m different so to get out and see others April for 3 nights with a similar problem is heart-warming. Especially when you know that • Second weekend Fri 27th you can speak out without fear of bullying. August for 3 nights

Breakaway is a family to me, everyone’s so friendly and great fun to be with. Breakaway makes me realise that some of us have to endure really More details on the 2011 nasty things. One little girl has been robbed of so much, but she still was events to follow very soon! very determined to have a good time and I enjoyed helping this come true for her. Call us on 07903220040

There’s also a very nice emotion that I started to feel for the first time, and Email us on I feel confident with it.... love and thanks to breakaway I actually started to feel it. To be honest Breakaway is a very emotional place but it’s the best [email protected] place for young children and teens to go if they have a bowel or bladder problem. Visit our website on www.breakaway-visit.co.uk Thank you, Rachel, Julie and the Breakaway team, for helping all these people and for helping me gain the confidence to live with my condition. See our Facebook fan page http://www.facebook.com/ pages/Breakaway “I really love it at Breakaway and would come again. Meeting people who have the same problem as me is the best thing ever.”

TIDINGS| SUMMER 2010| 35 OSTOMY COMMUNITY OSTOMYLAND WEBSITE CELEBRATES ANNIVERSARY What has Ostomyland and James Bond got in common? Well, if it wasn’t for Ian Fleming’s super spy - Ostomyland may never have been created!

Jason tells us how it all began... Most of the books I’d read pre-op about colostomies were all aimed at Picture the scene. It’s New Years Day the older generation, and failed to 1998 and I’m sat in the living room answer the questions I had as a with the family. We’re all recovering twenty-three year old faced with this from the large celebratory lunch, and life changing operation. And so, with lounging on the comfy chairs in front my copy of “.net” magazine on my of the telly waiting for the James Bond lap, and my computer humming away, movie to start on ITV1. Snores from I thought I’d rectify this by putting my my parents, and my dog, fill the room, story online. as they contentedly sleep off their belly-busting lunch, and I – out of Twenty-one days later, “Jason’s boredom – pick up a copy of “.net” Homepage” was uploaded to my magazine whose front page promises 10MB of free ISP web space - a to spill the secrets of creating your whopping two whole pages of Jason Dale is thirty-five own home page from scratch with content. One page focused on me, my years old and lives in HTML code. Soon after starting to read hobbies and interests, while the other the magazine, I got bored of the Bond page focused on what it was like to West Yorkshire. He has a movie so I quietly left the room to go be a young ostomate. It wasn’t a lot, to the computer and started to try out but it was my first site. I was mighty colostomy and is the the HTML coding projects the proud of the achievement. webmaster/owner of a magazine had featured. At the time of my stoma operation I website called To my surprise I found the coding wrote a diary of my hospital visits and quite easy to pick up. However, it’s all the early weeks afterwards. I took ‘Ostomyland’. very well being able to code an those notes and wrote a colostomy www.ostomyland.com is internet page but what on earth could lifestyle guide aimed for younger I talk about on it? I was new to the people, covering topics that were an ostomy support Internet. Freeserve had launched interesting for all ostomates, but about six months previously and so I would especially help to allay any community blog/website was still finding my feet online, and fears younger people might have e.g. that Jason funds from discovering what a wonderful travelling with an ostomy, sex and resource the information relationships, sports and swimming, his own pocket superhighway was. It seemed it had returning to work or school and so on. pages on everything…except for a I’d submitted the book to health- and it will soon be page about life as a “young ostomate” related publishers but always got celebrating its 13th – which was what I had become only rejected with comments that the six or seven months previous on the content was too specialized. Anniversary online. June 16th.

36| TIDINGS| SUMMER 2010 However, I was utterly convinced that product companies along with their Although Ostomyland started as a it was in demand and of use to contact details, their best selling hobby project, it is now very much a people. So once my new-fangled products and their new products. I full time job squeezed into my spare internet page was online, I dug invited the “big four” (Coloplast, time. It's a continual work in progress; around in my desk drawers and pulled ConvaTec, Dansac and Hollister) to we've recently revamped our Ostomy out the manuscript for the colostomy have a free feature page on the site, Wiki and launched version 2 - at lifestyle guide book with the idea of and soon after other companies were present 225 pages. The site will publishing it online. asking if they too could be featured. continue to evolve to try and reflect And to this day I’m still adding pages the new trends that launch on the net Over the course of the following from companies who ask to be on the - recent examples of this being the month I retyped and edited it for site. Facebook and Twitter groups pages. publication on the internet and And, whilst I am at the helm, uploaded the whole guide in one About six years ago the site started to Ostomyland will always be a free-to- large update to my homepage. With outgrow its free web space roots and access/join site. that one update the number of pages so I had to face a choice – close down on my website went up ten-fold. By the site, or invest in proper My parents don’t understand why I this time I had ditched the personal commercial web space. The decision put all the hours into the site in return homepage idea totally, focused solely was easy, and so the first of my for what they see as nothing. My on ostomy information and re- proper web space accounts were reward is the occasional email of launched the site with the title “Living leased. The years came and went and heartfelt thanks that comes in from with a Colostomy”. I hit my 30s. More and more people someone who has received support started the visit the site looking for that has pretty much changed their Out of curiosity, I added a free information on other ostomies and life. Then I get that warm, fuzzy feeling webpage hit counter service to the the decision was made to expand the inside and realise that THAT is why I site, so I could see how many times site from a colostomy site to one that do this. the pages were visited. I set myself a covered all ostomies and so the site target of 100 hits in the six months, name changed from “Living with a I never for one moment thought I which I expected to miss by a mile Colostomy” to the name of our chat would be sat here writing about the and to lose heart in the project. To my room: Ostomyland. history of the website, nearly twelve utter shock I shattered that target in years on from that boring New Years the first two weeks and nearly broke And so to blogging: many of our Day when I picked up the magazine… 1000 hits in two months. members had started their own blogs on various blogging networks and I And it’s all thanks to James Bond… Then I discovered IRC chat. I thought realised what a great resource they wow! to myself that it could be a great tool could be for the Ostomyland for getting ostomates to talk to each community and ostomates in general. Jason Dale other, to swap notes, or support each It has taken a number of years to find Webmaster/Owner other, or even just to hang out with a way of getting blogs on to Ostomyland.com like-minded people. After some Ostomyland that would deliver a [email protected] research I found a program on the net quality feature without risk of that I could install onto my website destroying the current board database, and allow people to chat there and but it was worth the wait. As many of then. At first there would only be two you know I launched the new or three people in the chat room over message board system in September the course of the night, but they told 2009 and included in that is the Jason would like to thank the BCA their friends, and at its peak it wasn’t ability to create and edit blogs. Hurray! and CA for everything they've done uncommon to have seventy to a for Ostomyland over the years. hundred people come through the At last count twelve people help me doors on the night, and it would run the site, be it as a senior admin Jason says: average twenty or so people online at on the site, or a moderator on the “The single biggest event in the any one time. message board, or a chat room website’s history was when the old operator. Ostomyland couldn’t exist BCA (British Colostomy Association) Thanks to the inclusion of a message without Kathy my "number one" and asked their webmaster at the time – board, the website started to take on the other fantastic members who give Ian – if he would get in contact the look and feel of a community. up their time freely for nothing more with me and help the site improve People would post supportive replies than a word of thanks from me and evolve. To this day, I am to complete strangers, make them feel because of their love for the eternally thankful to the BCA for welcome and comfortable enough to community. this, as without that one important vent or ask questions at any time. It is event I am certain that my skills always so satisfying to see people To date Ostomyland continues to would not have grown, and the site come to the site as an utter wreck, grow. We’ve recently broken our six would not have become what it is feeling they are alone and helpless, millionth hit, averaging two to three today. In my eyes he is Obi Wan to and then over the next year or so be thousand page views a day, and we’re my Luke Skywalker. He is my supported to the extent that they welcoming approximately a hundred mentor. He is my friend. I was so would develop into the person who new people to the main site every sad to see the BCA close down; my then gives support to others by single day, some of whom register to heart literally fell at the news. But reassuring them that life does go on be part of the community and stay for it’s been fantastic to see the CA rise and things do get better no matter years. Whilst it’s great to have so from the ashes and grow from how bad things might seem at the many ostomates visit Ostomyland, it is strength to strength over the last time. sad that so many people are in need few years.” of help, especially those from outside Soon after this the manufacturers’ the UK, where it seems so many section of Ostomyland was born. This people do not have access to a Stoma is where I list the major ostomy Care Nurse specialist.

TIDINGS| SUMMER 2010| 37 HEALTH STOMA CARE MANAGEMENT

NEW SERIES Problematic stomas... Dips and creases

Written by Melanie Jerome RGN, BSc(Hons), CNS Amanda Gunning RGN, CNS Chelsea and Westminster Hospital

NHS Foundation Trust Picture Courtesy of Coloplast Ltd

It is so important to speak to your So what is a peristomal moat? adhesion stoma care nurse if you are having and therefore The word peristomal describes the leakage. Also available is strip paste, problems with your stoma. There is an skin area around the stoma; the moat which can be handled and moulded extensive array of products on the is a hollow of skin, which may be like plasticine is sticky and useful to market in order to cater for each partially, or fully, around the stoma. fill in the creases. Paste may also be The base of the pouch is then unable individual’s needs. Therefore, finding used on its own or in conjunction to adhere to the skin due to the gap with other accessories. Paste comes in the right product for you is essential. produced by the moat. The solution a tube, just like toothpaste, and can The following article will highlight may be to use a washer, or half a be squeezed into dips. It is best to some common problems and outline washer, to fill the gap and therefore damp your fingertip before you touch provide a flat surface for the pouch to some of the solutions. the paste in order to mould it, as it is adhere to. There are many different very sticky! This will not inhibit the washers, or seals, available and your adherence. Some pastes have an Ideally the pouch change should be as stoma care nurse will help you decide alcohol content that may cause slight simple as possible. However, any which is the most suitable for you. discomfort on broken areas of skin. complications with the stoma, leakage Your stoma care nurse may suggest a or the fear of leakage can cause What is a peristomal two-piece appliance as the added individuals to curtail their work and skin crease? accessories can make the appliance social life and may often lead to social Skin creases can occur naturally on change more time consuming. A two- isolation. Sometimes the stoma does the abdomen but become piece appliance has a separate base plate that attaches directly to your not sit flush with the surface of the problematic if the stoma is sited within one. Again, this may be due to skin. The second part, the pouch, then skin; in stoma terms this is known as emergency surgery, or as a result of attaches to the base plate. The pouch a peristomal dip, crease or moat. This weight gain/loss. The abdominal skin can then be changed leaving the base means that the base of the pouch is may then overhang the stoma causing plate on the abdomen. The two-piece system may be useful if you change unable to sit on a flat skin surface, a crease. If this is the case it is very important to use a good technique your appliance frequently throughout which leads to difficulty in adherence when applying the pouch e.g. the day. and instability, causing the bag to leak standing and using one hand to pull and the skin around the stoma to the abdominal skin taught and using Stoma construction, body contours and personal capabilities (dexterity, become broken and sore. the other hand apply the pouch thus smoothing out skin creases. There are eyesight etc) will all contribute to the creases that cannot be smoothed out choice of accessory your stoma care There are several reasons why you and for those you may require a nurse may offer. Seals, convex may have dips or creases. The surgery convex appliance, which your stoma appliances, strip pastes, paste and two-piece appliances are available may have been an emergency care nurse can assess. The base plate of the convex appliance curves from many different companies. therefore the stoma care nurse was outwards to smooth out creases and unable to mark the most appropriate fill dips. Convexity must always be Everyone is different. Your stoma care place for the stoma, avoiding prescribed by your stoma care nurse nurse will provide you with an excellent service based around sound abdominal creases, previous scars or as the pressure may cause bruising or soreness and will require monitoring. advice and professional expertise bony prominences. There may have helping you to select the appropriate been a technical difficulty during products for your needs. By keeping in surgery, which has caused the What is a skin dip? touch with your stoma care nurse and up to date with stoma management abdomen to become uneven. The Skin dips are changing contours in the you can carry out your everyday individual shape of the abdomen may skin. The skin may have become activities happy in the knowledge that have natural dips and creases and any distorted during your surgery and the your appliance won’t leak - giving you place where the stoma is formed may extra confidence! weight gain or loss will cause the pull into a dip, even if your stoma was abdomen to change shape, this sited prior to your surgery. There may includes pregnancy. be one or many dips around your stoma causing difficulty with pouch

38| TIDINGS| SUMMER 2010 CHATBACK Readers’ writes Why not write or email the Editor of Tidings with your thoughts, experiences or hints and tips...

Dear Editor much to be preferred. The ileostomy I answered phone questions for was reversed in November 2008 thirty minutes. I am writing in response to a letter and I waited for all the terrible in the Spring issue from a lady who things that had been predicted to In 1984 we moved to Cheshire with has decided not to go ahead with a happen. They didn't. I had a few my husband’s work and I continued colostomy reversal for fear of the days where I was rushing to the to be a voluntary visitor for CWG. I uncertain results. I also had to make toilet several times a day but it still sometimes attend open days in that decision and I am aware that settled really quickly, and by Macclesfield. there seems to be a lot of negative Christmas I had a regular pattern of comment and not much positive daily perfectly formed bowel I am also a member of IA and have and I would like to redress the movements. As I had nine inches of made many friends at their balance. bowel removed I don't get a lot of meetings. warning before I need to go but that I had a colostomy performed as an has improved and I would now say Carry on with your splendid work. emergency after my bowel that my daily morning bowel perforated in July 2007 - eight days movements are as normal as Yours sincerely in ICU with severe sepsis and five anyone else’s. M. B. (Mrs) weeks in hospital. My wound became infected as is common in I just wanted readers to know that these circumstances so I was left temporary colostomies can be Dear Editor with an open wound and a new and successfully reversed and if your unexpected colostomy. Tidings surgeon's advice is that it can be Following my diagnosis of anal magazine was a lifeline in my new done there is a chance that it will all cancer in early 2007, I had a world. I also developed an incisional go right. temporary stoma formed prior to hernia and I felt that, following the undergoing an aggressive course of trauma I had been though, I would B.B. (Mrs) radiotherapy and chemotherapy. In never want a reversal. November 2008 I had an operation I am so pleased that your reversal to form a permanent stoma and However, the hernia became has been successful. Thank you for also to carry out a parastomal hernia progressively very large and letting us know because, as you say, repair. My rectum was so scarred uncomfortable and as a year later I it is those people for whom things from the radiotherapy that a reversal was forced to have surgery for that it have not gone as well as they’d was impossible. seemed I might as well give reversal hoped who usually write to us, so a go. I read everything I could both sometimes the articles and letters I was not too disappointed as I had in the magazine and on various on- can seem a bit negative. Ed. got used to my stoma, but following line forums and a lot of it was very my discharge from hospital, I had negative with people regretting it some problems with infections and and stating that their lives were Dear Editor was quite poorly for a while. After easier with a colostomy. I realised being told that another parastomal that it is much more likely that I have just read the item Forty Years hernia was unlikely to happen, I of people write to forums or On by Michael Rose in the winter course got another one, but I am magazines if things have gone issue of Tidings. This takes me back reluctant to have another repair as wrong whereas if things have gone thirty-three years to March 1976, they may have to re-site my stoma right there is no need to express when we lived in Essex and I had and there are no guarantees it will your pain. I also felt that I had to my colostomy operation at Basildon not happen again. give it a go. Hospital. I had an operation to dilate my So in June 2008 I had a reversal and I was a member of the Colostomy rectum to ease the passage of a hernia repair. The surgeon decided Welfare Group and went to mucus late last year and am due to that it would be good to form a meetings in Eccleston Square. In the have another one in a couple of temporary ileostomy to protect the late 1970’s Essex Radio held a week months. The first one helped a new join, and then reverse that in a of programmes on Self Help groups tremendous amount. few months time. I can therefore say and I represented CWG. It was the from experience that a colostomy is longest five minutes of my life! Then I know I would not have got

TIDINGS| SUMMER 2010| 39 Readers’ writes

through the last three years without What I like about flushable pouches Helpline from colostomates who support of family and friends and is that everything goes either down experience problems with a mucus the marvellous medical staff at the toilet or to plastic recycling, discharge from the rectum. The CA Chatterbridge and Arrowe Park rather than mostly going to landfill have a leaflet, “About Rectal Hospitals. I am sixty-two now and or possibly incineration. There is just Discharge”, which explains why this feel so lucky and blessed to have one improvement I would like and occurs and how other people deal been given a second chance. Last that is to have a tab on the flange to with it. Ed. year I holidayed in Bournemouth, help its removal from around the Croatia and Tenerife and had a great stoma. Thank you for your letters time – big bumps and all. and e-mails. Please keep them G. C. (Ms) coming. We will do our best to Thanks also to Tidings and the CA. print them or we may hold them Hearing other people’s experiences and getting information about new Hello All over for a future issue. products is invaluable. You feel like you are not alone which can be a I am so pleased that I was given the Editing may be required for great comfort at a very difficult time. CA phone number. I called and got reasons of clarity or space. In the such reassurance from someone interests of confidentiality we Yours faithfully who knows what it’s like to have a will publish only your initials and colostomy and the problems that not your full name, unless you D.B. (Ms) sometimes occur. give us permission to do so. I have only had my colostomy for If you want to be involved Dear Editor one year after all else failed to help in the next issue of with colitis, diverticulitis and Tidings magazine - simply I have been a colostomate since complete incontinence – even rectal drop us a line 1998 and I began to use Welland muscle tightening failed after a via email: Freestyle Vie flushable pouches five while. I had the colostomy operation associate-editor@ months ago. The medication I am by keyhole to start with, but the colostomyassociation.org.uk taking for the pain caused by a stoma retracted and after three or write to: slipped vertebra in my lower back is weeks it was decided a laparotomy Associate Editor making my faeces dryer and firmer be performed to get things right. Colostomy Association and sometimes of larger volume Unfortunately I got an abscess on 2 London Court, than it used to be. I am therefore the scar tissue site. East Street, using mainly maxi pouches and only Reading RG1 4QL use a midi pouch if I know I will be After three weeks I was allowed changing it after a short time. home. I didn’t feel my stoma was Look out for our Reader Button right: all the pictures I had seen to see where readers have Just once have I had difficulty showed stomas that stood out from contributed to Tidings flushing the inner pouch and the area. Mine was and is almost flat contents down the toilet. The pouch to the skin. The stoma nurse Reader PANEL was very full and the water in the suggested I use a convex style bag, contributor Yours toilet rose up almost to the top, but I still sometimes get pancaking. Rosemary Brierley before slowly going down. I flushed Associate Editor the toilet again and this time all was Another problem I seem to be well. So the pouch had been too experiencing is an offensive full. Since then if the pouch has discharge of mucus from my rectum. been very full I have emptied some I went to see the surgeon who of the contents from the top of the performed the operation and he said pouch into the toilet and then there is nothing nasty going on and dropped the pouch into the toilet. he would contact the stoma nurse who would be able to show me After taking the pouch off I have how to use an enema to wash out always cleaned around the edge of the offending mucus. Are there other my stoma with toilet paper and colostomists who have experienced warm water. I used to then dry it this problem of mucus in the with a swab and put the swab and rectum? the more or less emptied non- flushable pouch and the plastic circle The Tidings magazine you sent me is which had covered the flange into a so informative and I have read it blue disposal bag which went to from cover to cover. It does help to landfill. Now I no longer use know that I am not alone. Tidings magazine is available in disposal bags or swabs. I dry around PDF format. Simply visit: my stoma with toilet paper or a Thank you again www.colostomyassociation.org.uk towel. The clean outer pouch and and register to download plastic flange cover go with other M.G. (Mrs) or email the editor direct at: plastic items to recycling. [email protected] We frequently get calls on the to organise a PDF to be sent to you.

40| TIDINGS| SUMMER 2010 To receive a FREE sample of our new ostomy pouch incorporating QuietWear call customer services on 0800 521 377 or fill in the form below.

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Name: Telephone: Address: Email: Stoma size: Postcode:

CAsummer2010 HEALTH ASPECTS OF MEDICAL CARE Laparoscopic Bowel Surgery

Written by Mr John Lengyel - Consultant Surgeon University Hospitals of North Staffordshire NHS Trust Stoke-on-Trent

History

Would you believe it but the very first laparoscopic or ‘key hole’ operation was performed as early as 1902 by a German surgeon Georg Kelling on dogs by insufflating air into the abdominal cavity to view the bowel.

It wasn’t until Raoul Palmer a Swedish-born French gynaecologist published the first 250 cases of visualisation of the uterus and ovaries that lead to a revolution in gynaecological laparoscopic surgery.

When a general surgeon from Germany, Erich Muhe, adopted and developed the technique for removal of the gallbladder (cholecystectomy), he published his series of 97 cases. All of his work was discredited and he was criticized for his work for many years by the German Surgical Society, and it wasn’t until 6 years later they had to eat humble pie and admit his work was pioneering in the field.

As techniques, technology and instruments improved, an American surgeon Moises Jacobs was the first man to remove the right side of the colon using the keyhole method. This was 20 years ago and the uptake has been slow. There were worries about safety, especially when the operations were done for cancer. From 2002- 2007 3 major clinical trials were published which compared the standard large incision operation to the keyhole method in 2864 cancer patients. They all concluded that ‘Laparoscopic surgery is fast although laparoscopic surgery cost a becoming the gold standard in little more and took a little more time to do, the benefits to patients in the colorectal surgery’... short term were better if done keyhole.

Many more studies have shown that the risk of the cancer coming back in the long term was the same as if done the traditional open way. In 2006 the National Institute for Health and Clinical Excellence (NICE) published its guidance outlining a clear role for ‘keyhole surgery’ in colon cancer.

42| TIDINGS| SUMMER 2010 Can I have keyhole magnifying glass. Light is directed become cold and traumatised through surgery? down fibre optic cables to the end of the 2 to 3 hour procedure. This means the scope and the whole instrument less fluid loss, less need for a drip The National Cancer Peer Review is linked to a high definition camera after the operation as the bowels kick (NCPR) is a national quality assurance and TV monitor. back into action a lot sooner. programme for NHS cancer services Therefore unlike the traditional diet has issued clear guidance that any A number of working ports are then and fluid restriction that used to occur, patient requiring an operation to used to do the procedure. These are patients are encouraged to drink and remove a cancer should be offered usually 3 in number and eat hours after surgery rather than the option of laparoscopic surgery. In approximately 5 to 10mm in size. On days. 2009 only 25% of all colon cancer the inside the bowel doesn’t just float was done using the keyhole method. about but is tethered in certain places Smaller incisions also mean less pain. and has a blood supply. Running with This has got to be the biggest bonus. The problem has been that most the blood supply is the lymph glands. Less pain is great for patients, but it Colorectal Surgeons trained in the UK These are important in cancer surgery also means patients’ get up and about have had no training in the technique. as the harvest of these can allow a sooner. This has the added benefit of In order to adopt it safely they have to pathologist to tell us if cancer cells reducing the chance of a chest go through a number of courses and have spread from the tumour which infection, clots in the legs and lungs, undergo a period of supervised may indicate the need for which in turn leads to shorter stays in operating. The knock on effect of this chemotherapy after the operation. hospital. Of course when out of has been that the new consultants hospital recovery is also quicker so wanting to learn the technique have During the procedure we use the very this means patients can return to found it difficult to find someone to latest technology. I favour a device normal daily activities of shopping, train them. called the harmonic scalpel that cuts exercise, driving and other pleasures tissue and seals blood vessels. It is in life. There has been industry partnership virtually a bloodless procedure. (Ethicon Endosurgery) and part Another clever advance has been a At this point it is always worth government funded (Lapco) initiatives specialised staple gun. This instrument mentioning another linked health to train surgeons in this technique to allows us to seal and divide large initiative called Enhanced Recovery. be able to deliver it in the UK. I was blood vessels and bowel easily, safely This is a collection of all the above one of the few surgeons lucky enough and quickly. ideas bundled together with to get specialist training in the form of education, stoma teaching and a fellowship prior to starting my Once a piece of bowel has been planned discharge that aims to reduce consultant post and mentoring two of isolated that has a tumour in it for the length of stay. For the traditional my colleagues to independent example, we need to make a slightly open operation a patient would practice. With 20 years experience larger incision to get it out. This is typically be in hospital 10 to 14 days. between them this was a very weird approximately 5cm in length. After the With the keyhole surgery alone this experience, as two years previously tumour hits the bucket and sent off to can be 6 or 7 days, but when they were teaching me how to take the lab for analysis we can then, combined with a good Enhanced the colon out through a large incision! hopefully get the ends of bowel Recovery Program, patients can be Within a year of starting at the together. This is done again using a home in 3 to 4 days after major University Hospital of North specialised staple device. If a stoma is abdominal surgery. Staffordshire 9 out of 10 operations necessary this is done at this point. All are now performed keyhole. With the wounds are closed with stitches determination delivery of the highest and ‘frozen’ with local anaesthetic so Summary standard of care is possible and when patients wake up they hopefully experience minimal and sometimes hopefully will occur across the Laparoscopic surgery is becoming no pain at all. The operation is over. country. the gold standard in colorectal surgery. We can do almost every I have described a typical cancer operation through small incisions operation here but we apply the same So how is it done? that we previously did through one techniques for non-cancer surgery, large one. As with any surgery diverticular disease, prolapse Well, first you need a good team and there are risks, but the benefits to operations or Crohn’s disease. some important pieces of kit. The the majority of patients when they Occasionally removal of the entire patient who has consented for the are sat out of bed with minimal colon and rectum can be done for procedure and understood the pain, enjoying a full breakfast the Ulcerative colitis and a specialised benefits and risks is put under a very next day after major bowel ileal pouch constructed to restore the general anaesthetic. The first step is to surgery is immensely rewarding. see what you are doing on the inside, gut continuity. All through minimal and to create space between your skin incisions. tummy muscles and the bowel, carbon dioxide is pumped in under a small amount of pressure. The bladder Benefits has to be empty to visualise the bowel and reduce the risk of injury so There are several benefits of the all patients have a catheter. Actually keyhole surgery. The first is that the looking inside is done using a bowel is handled less and unlike laparoscope, a sort of elongated open surgery does not get a chance to

TIDINGS| SUMMER 2010| 43

HEALTH YOUR QUESTIONS ANSWERED Dear Nurse

Julie Rust RGN. Dip, N. MSc. embarrassment and has increased the frequency of appliance change by Clinical Nurse Specialist four times the previous norm. We are using the 'Sur-Fit Natura' distributed Stoma Care by Convatec. University Hospital To date, we have consulted two of North Staffordshire general Surgeons, both of whom have ruled out surgery due to Allan’s age and general health. We are thus Q: I am looking for some advice asking you for suggestions as to what with regard to the following problem. alternate measures can be employed I had a colostomy carried out in order to mitigate the identified December 2009 for diverticular problem, as there are no disease and also an incompetent Enterostomal Therapists in Bermuda. sphincter muscle. My stoma care nurse advised me that I would pass A: This sounds like a retracted stoma mucous from the rectum at intervals. causing the problems. It may be The first post op month there was useful to try something for the sore nothing then I started passing foul skin such as Orahesive Powder from smelling discharge every few weeks. Convatec, use this with a large seal This has now increased to the point such as a Cohesive Seal from Salts or where the discharge is constant and I Your medical questions and the Adapt ring from Hollister. I would am using pads. It still doesn’t smell queries about stoma care also suggest using a convexed pouch nice. In fact when I last saw my management are always welcome as this will help to push the spout of stoma care nurse I told her that this and important to us. Queries the stoma out towards the skin discharge smells worse than received by the Editor or CA are surface. Many of these can be used anything, which comes from my with a belt. It is difficult to know what passed to Julie Rust RGN. Dip, N. stoma. At times the discharge is also to suggest you order, as I am unaware MSc. CNS Stoma Care for Julie to streaked with blood. I don’t know if of what products are available in this is normal but it’s making me review and answer. Answers are Bermuda. However, it may be useful miserable. I am due to see the published in the next issue of to speak to the companies there to consultant shortly as I developed a Tidings. We are also interested to see if they can send you some hernia immediately post op while I learn how you resolve your stoma samples to try. was still in hospital, which I am going care problems and how Julie’s to have corrected. However, I wonder advice has helped you! if I should mention the other problem. Q: Today, I found a brochure on the Can you please give me any advice Internet, which your Association wrote as to how to remedy this situation? I remove the debris. I would suggest regarding rectal discharge. Over 10 feel I am still new to ‘living with a discussing all the options with your years ago, I had an elective colostomy’ and not knowing anyone surgeon at your next appointment. colostomy due to being quadriplegic with one I have no experience or from an SCI. Since then, I always had advice to fall back on. some slight white or clear discharge. Q: My husband is an 87-year-old, Sometimes it would be brown and five-year survivor of primary liver smell foul but it was a very small A: You do not say if the surgeon is cancer. As a result of an errant liver amount and of a jelly-like consistency. planning on reversing the stoma for ablation procedure that burned a One time in hospital, I did pass a you at some stage, although with an hole in his stomach and small rather large firm ball of something incompetent sphincter muscle this intestine, it became necessary to but that was because a nurse gave may not be appropriate. If he is not perform a colostomy. me a rectal suppository. planning on a reversal he may consider removing the rectum Recently the stoma has retreated, About two months ago, I passed a completely, which would solve this causing leakage at the abdominal very foul smelling brown liquid distressing problem for you. site, irritating the skin to the point of discharge. It happened again Alternatively, it may be that you need painfulness, despite the use of barrier yesterday. It was a lot of liquid. Both a rectal washout/suppository to creams. The leakage causes of these times happened after I had

TIDINGS| SUMMER 2010| 45 HEALTH YOUR QUESTIONS ANSWERED bathed. I sit in a wheelchair so no nothing showing up. Should I be want to risk sores by getting onto a one noticed. What could this be? I worried? There’s no blood that I can loo and also, losing the great beauty, certainly don’t want this to happen see but it's making my stoma sore for me, of speed - changing a bag is again. Could this be rectal or anal and bleed sometimes. 15 mins max. compared with daily cancer or an infection of some kind? sessions on the loo of 30 to 90 mins. Please just be straightforward and let A: This may be related to the diet It also cuts down the number of me know what I may be dealing with. you are on at the moment to try to holiday possibilities. I assumed that loose weight. It may be worth irrigation cleared out one’s system for A: The most common cause of this keeping a diet diary to see if it is some days and not as a daily routine. discharge is often just a build up of related to any food in particular. Have I got it all wrong and can I mucous and this can be easily treated Alternatively, it may be that you need perform the irrigation as a one-off with regular Glycerine Suppositories to see your GP and obtain something without sitting on a loo? given by the District Nurse if you to try to slow the output down. cannot manage yourself. However, it Something such as Fybogel may help, A: Colostomy irrigation can be is obviously difficult to be sure what as it will bulk the motion without the done sitting in front of the toilet in a is causing the problem without risk of constipation. You also say the chair with the long drainage bag examining you so I would suggest a skin around the stoma is getting sore. going into the toilet basin. I have review by either your surgeon or your If it is wet I would suggest trying taught patients in wheelchairs to GP with a view to getting you referred Orabase Powder and a seal such as perform the procedure quite well. It is to a consultant if appropriate. Salts Cohesive Seal to try to heal the usually done daily at the start of the skin area. Once the soreness is training to try to re-train the bowel to settled I would suggest using Cavilon accept the irrigation. However I do Q: I have a colostomy and am also Spray as a barrier to protect the skin have some patients who manage to a diabetic. I irrigate and also wear a from further soreness. do the procedure every other day pouch. I am currently on medication without any problems from leakage in and have found undissolved tablets between. This works for some people in the pouch. Does this mean they Q: Firstly I've only had my stoma but not everyone. It may be worth are not working and is there anything (Bertie as I call it) for three month's discussing the procedure with his I can do about this? and it was emergency surgery caused own Stoma Care Nurse who can by Diverticulitis, which I didn't know I explain in detail and show him the A: If the medication you are taking is had. I'm in a very small percentage kit/procedure. appearing in the stoma pouch un- as my consultant told me yesterday dissolved then it is not being being aged 39, having no previous absorbed and therefore is not symptoms and finally the surgery. He entering your system. I would suggest advised me to further increase my Editors Comment a review by your GP to investigate if fibre intake and I do try but I don't the particular medication is available seem to tolerate vegetables very well in another format such as syrup or anymore and fruit plays havoc too. powder as this may be absorbed So I'm at a loss, as I don't know what better. to do next? When I've asked I keep being told to have a balanced diet, this doesn't help me and I'm Q: I suffer from quite a lot of what I beginning to stress about it which will call ‘morning sickness’ since I had my not do me any good either, I hope colostomy, and wondered if there is you can point me in right direction. anything I can do or if any other readers also suffer from this. A: If you have spoken to your stoma care nurse and consultant A: This may not be related to the regarding this and have tried all their Have you got a stoma at all and therefore I would suggestions I would suggest a referral medical question or a query suggest a review by your own GP to a dietician to see if they can give about stoma care with a view to investigating the cause you more specific information. Usually management of the sickness. with a colostomy we suggest a for Julie? normal healthy, well balanced diet but if you are struggling the dietetic If so write in and tell us: Q: I have a query about my department may be able to help. Colostomy Association colostomy. I had a Hartmann’s 2 London Court, East Street procedure in 2008 and for the last Reading RG1 4QL four weeks when I eat my evening Q: I am a colostomate and also a meal my pouch fills with liquid. It's paraplegic. There is a lot of talk or e-mail your query to: like having the runs all the time. I’m about irrigation. I have, in my five [email protected] becoming very concerned at such years with a colostomy, had 3 or 4 [email protected] loose motions for so long. What do sessions of diarrhea and wondered you think? I've been on a healthy about trying out irrigation before eating plan since the end of January going on leave but I gather that most to lose weight for a reversal op. I've users carry out the procedure daily, had abdominal pain and scans and sitting on the loo. I can't and do not

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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.

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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: ______B. Braun Medical Ltd FREEPOST SF10771 Sheffield S35 2FZ XX-STA-0-10 | | | CONNECTIONS Marketplace advertise...your events • messages • services here... If you have anything to sell, an event to advertise or a message to communicate, you can place a small-ad for as little as £20. So, why not get in touch...contact [email protected] and let Tidings promote your business.

HOLIDAYS... Beesands near Dartmouth-Devon

Holiday Apartment Self-Catering Accommodation (Within fellow colostomates home) • Wonderful Seaviews • Sleeps 2 • Beesands, Kingsbridge Devon • From £160 per week Contact Mrs J Seal for more information and a brochure: Tel: 01548 581163 Mobile: 07968 370498

OH! Poo designed by ostomates...for ostomates Rediculously cool bag covers for everyday wear and special occasions too. With our patented design, OSTOMY the bag covers are easy to put on, BAG COVERS but hard to take your eyes off! For more information why not visit: www.ohpoo.net

SASH stoma support and • The Sash belts are available on prescription and suitable for both male 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

For more information: SASH Woodhouse Woodside Road Hockley Essex, SS5 4RU England Telephone: 0044 (0) 1702 206502 Fax: 0044 (0) 1702 206502 Freephone: 0800 389 3111 E-mail address: [email protected] Website: www.sashstomabelts.com NOTEBOOK UPDATES AND EVENTS Stoma Care Open Days... Open days give ostomates the opportunity to meet and share experiences with other ostomates. Many people attend with friends and family and they can be very sociable events. Open Day events are posted on the Colostomy Association website throughout the year - visit: www.colostomyassociation.org.uk/get-involved/open-days

List of forthcoming Open Days:- Date: 12th July 2010 Date: 8th September 2010 Venue: Midland Hotel, Morecambe, Venue: The Moorings Hotel, Lancashire Fort William Time: 11am – 3pm Time: 11am – 3pm Organiser: Fittleworth Organiser: Salts Healthcare NATIONAL KEY SCHEME Date: 16th July 2010 Date: 10th September 2010 How to obtain a key to gain Venue: Hilton Tree Tops, Aberdeen Venue: Jarvis Hotel, Livingston access to toilets for the disabled Time: 11am – 3pm Time: 11am – 3pm Colostomates are entitled to Organiser: Salts Healthcare Organiser: Salts Healthcare a key which will open 8,000+ locked toilets around the UK. Date: 28th July 2010 Date: 15th September 2010 Some local councils will provide Venue: Wicksteed Park, Kettering Venue: Lindhurst Rooms, this key free, or for a small charge. Time: 11am-12.30 & 1.30pm-3pm Mansfield Civic Centre Keys can be obtained from the Organiser: Salts Healthcare Time: 10am – 3pm Colostomy Association at cost of £3.50. Organiser: NHS Stoma Care, Mansfield Contact head office: 0118 939 1537 Date: 1st September 2010 for an application form. Venue: Park Hotel, Rugby Park, Date: 4th October 2010 Keys can also be purchased for £3.50 Kilmarnock Venue: Northern Gen Hospital, from RADAR: Time: 2pm – 7pm Sports Hall/Spinal Injuries Tel: 020 7250 3222 Organiser: NHS Ayrshire and Arran Unit, Sheffield Web: www.radar-shop.org.uk Time: 10am – 3pm New from RADAR - coming soon... Organiser: Stoma Care Dept National Key Scheme Guide 2010 Pre-order Price: £9.49

Let yourself go this summer... 1 Piece Closed Pouches

Versatile, discreet & unique ‘flat top’ pouch... Designed with comfort & flexibility in mind... High capacity filter protected by ‘raincoat’... Highly absorbent stoma cap, ideal for outdoor activities...

Available on prescription NOW! PEAKMEDICAL  Exclusive UK Distributors For EuroTec Ostomy Products To obtain your FREE samples of the Colomate 1 Piece Closed Pouches please complete the coupon and return it to: Peak Medical, FREEPOST Licence No. NEA4131, Holywell House Annexe, Holywell Street, Chesterfield, Derbyshire, S41 7ZY or call the Peak Medical Freephone helpline on 0800 652 0424. Stoma Size: mm Mr/Mrs/Miss/Ms: First name: Surname: Address: Preferred pouch (please tick) Order Code Postcode: Medium pouch ‘flat top’ CMB 113 CCB 120 Stoma cap TCA07/10

Telephone: Email: TCA07/09 %HFDXVH\RXQHHGLWWREH VDIHVLPSOHDQGSDLQOHVV ZHKDYHSURGXFHG/LIW3OXV QRVWLQJDGKHVLYHUHPRYHU ZLWKDORHYHUDWKDWZRQ¶W LUULWDWHEURNHQVNLQPDNLQJ WKHUHPRYDORISRXFKHV DQGÀDQJHVVDIHVLPSOH DQGSDLQOHVV

$YDLODEOHRQSUHVFULSWLRQDVD KDQG\VSUD\RUGLVSRVDEOHZLSH

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

Telephone number: Email:

1 Regular donation: I would like to make a regular contribution to the Colostomy Association every month/quarter/year in support of the charity. I have ticked the appropriate box below and filled in the amount. I have also completed the Banker’s Standing Order form (Please tick.)

(Please tick.) Yes, I would like to make a Monthly donation of £ (Please tick.) Yes, I would like to make a Quarterly donation of £ (Please tick.) Yes, I would like to make a Yearly donation of £

2 Single donation: (a donation of £15 or more covers production of four issues of Tidings per year)

(Please tick.) Yes I would like to make an 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

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: / / 2010

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: / / 2010 Thank you for your gift

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

TIDINGS| SUMMER 2010| 51 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 • Regular Donation care professionals. Regular donations can be made via standing order • a quarterly magazine 'Tidings’ especially written for (see Donation Form) Regular donations help us to colostomates, their families and their carers. plan ahead and like all donations are vital to our • a telephone helpline 0800 328 4257 manned 24 hours survival. a day every day. • Single Donation • over seventy contact volunteers covering the UK, fully trained and experienced, (who are themselves Single donation from individuals and fundraising ostomates) these dedicated individuals bring a human events are always welcome and greatly appreciated. touch. So please keep them coming, no matter how small. Just £15.00 (or more) ensures we are able to • a volunteer at the request of a stoma care nurse can visit a patient/s before their colostomy surgery, and continue to produce four issues of Tidings per year. 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 problems. donated.

• 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 ‘Tidings’. making a change to your current will, please consider 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.

Don’t delay...Donate online today! There are NOW two ways to donate online:-

1 Visit the CA website and simply click on the donate panel on the home page. www.colostomyassociation.org.uk

Visit the Just Giving home page you will see 2 a search panel ‘Find a Charity’ type in Colostomy Association.

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 5RW Registered Charity No: 1113471 52| TIDINGS| SUMMER 2010 IN CONVERSATION SUPPORT GROUPS

“no one except another person in the same situation or with a similar experience can really truly understand what ‘living with a colostomy’ brings and means to one’s life”... Claire Loaiza writes about a new support group making a difference in the North East of England

It’s in the Bag Hull and East Riding Stoma Support Group tears of laughter are shed as we swap stoma stories. One of our members Pete Rennard, known to the group as ‘Professor Pete’ has had a colostomy for 32 years and his knowledge and experiences are a real asset to us all.

We now have a committee to manage the group and are in the process of building a web site, organising a monthly newsletter and having our 3rd charity-raising event for Ward 11 at Castle Hill. We are also looking into visiting new stoma patients in hospital as well as contacting those on the waiting list and those contemplating reversal.

Back row - from left to right: Rose Grimsby, Jane Armstrong, Cliff Williams, Pete Smith, We meet at one of Peter’s public Jo Lorenz, Claire Loaiza, Pete Rennard. houses, The Ruscadors, Queen Street, Front row: Malcolm Woollass, Chris and Norman Pearl. Hull, every Thursday at Noon and our contact details can be found at the After arriving back in the UK after a many others and in the weeks that back of this Tiding’s magazine! We will seven-week stay in a Costa Rican followed those people helped my life be inviting guest speakers ranging Intensive Care Unit, I found myself at as a colostomate change considerably. from product suppliers to stoma care the age of 36, with my second nurses, our first speaker, is from colostomy bag. Having previously had Peter Smith a strong and resilient man Comfizz. a successful reversal during the (who had part of his bowel removed summer of 2008. due to cancer) recognised that he Family and friends of colostomates are faced the rest of his life living with a very welcome and many attend each Once I was strong enough to make colostomy. Peter realised that he may week. The support system we have the long journey home, I arrived to benefit from speaking to other developed is really wonderful and bleak weather and a rather grey colostomates. After looking in the whatever problems there are, whether outlook knowing what was ahead of Tiding’s magazine for his nearest physical or emotional, we always me. I couldn’t believe it was support group it became clear that seem to find a solution. happening again, I felt low, depressed there wasn’t one within easy reach. and most of all completely alone. Often when I am in the supermarket ‘I knew I was coping well but I could or at the bank I wonder if anyone else It was my mother who said to me, also imagine some people may well has a colostomy. Just a few days ago I after a visit to the stoma care nurse at be hiding away after having a went to view a house and the owner Castle Hill Hospital in Cottingham, that colostomy. I wanted to give people to my shock and amazement, also had she thought there should be more hope, to help them embrace life again a colostomy and will be joining the emotional support. Certainly, no one and realise they had a second chance. group! except another person in the same I felt I needed to instigate something, situation or with a similar experience to help others.’ With five people becoming a can really truly understand what ‘living colostomate every week in Hull and with a colostomy’ brings and means Peter went to see the stoma care East Riding the support group to one’s life. nurses at Castle Hill Hospital who provides a vital link for those that are contacted every stoma patient to just starting life with a colostomy to The next day whilst waiting to see my inform them of the new group. He those that have had one for a number GP a notice caught my attention. A also set about putting notices in of years. We have members’ young Stoma Support Group was being surgeries and advertising in the local and old and we all have something to established in Hull, possibly offering newspaper. The group is growing, and offer which makes the load a little exactly what I needed. I anxiously like me, people are making new lighter. called the number provided and spoke friends and finding out more to Peter Smith, who had set up the information. Experiences are shared, group. Later that week I met him and shoulders are offered and most days

TIDINGS| SUMMER 2010| 53 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.

Scotland County Durham: South West Durham Ostomy Group Midlothian: Bishop Auckland GOSH Contact: Betty 01388 814535 Colin Contact: Alex Topping 01501 772154 01388 773757 Jen 01325 31266 Maggie’s Edinburgh Timetable Maureen 01388 818267 Contact: 0131 5373131 Yorkshire: Derbyshire: Airedale Stoma Support Glasgow: Stockport Support Group Contact: Jenny Shaw 01535 652516 Fittleworth Glasgow Stoma Support Contact: Angela Simpson or Sue Hall 01535 210483 Group 0161 419 5059 Contact: Christine Daalman 0141 633 Bowel Cancer Support Group 0592 or Charlie Sutherland 01698 Lancashire: Contact: Lisa Hall 01422 357171 822075 Oldham Stoma Support CROPS (Colo-rectal ostomy & internal Contact: June Wilde 0161 6787086 pouch support) Ayrshire: Trafford Bowel Care Contact: Gloria 0114 2879503 North Ayrshire Stoma Support Contact: Jackie Carey (Secretary) 0161 Dewsbury & District Ostomy Contact: Jim 01292 220945 7489659 Doreen 0161 9627818 John Contact: Janet/Eileen 0844 8118110 Stoma Care and Recovery (S.C.A.R) 0161 7484655 Rotherham Ostomates Caring Support Contact: Rhona 01294 557478 or Contact: Contact CA for details Merseyside: Maggie 01294 271060 or Mob 0781 Scarborough Stoma Support Group I.C.U.P.S 7736147 Contact: Sister Jean Campbell 01723 Contact: Stoma Care Nurse 0151 342388 Amanda Rowe 01723 342446 Fife: 6047399 The Hull and East Riding Colostomy Fife Ostomy Support Group Liverpool Support Group Crosby Support Group Contact: Ishbel Barr 01592 772200 Contact: Barbara Percy 0151 5292842 Contact: Pete Smith 07989 565335 (Afternoon) and Claire Price 07805 978151 England - North Olivia Thomas Suite University Cheshire: Hospital Aintree Isle of Man: Cestrian Support Group Contact: Carmel/Pauline 0151 Optimistics Contact: David Burgham 01244 5292842 (Evening) Contact: Stoma Nurse Lynne Webb SCN 01983 534009 310461 Northumberland: Stoma Support Group Countess of Chester Hospital Northumberland Cancer Support Contact: Carole Cringle 01624 650212 Contact: Julie Clements 01244 Contact: Pat Fogg 0191 4102679 366170 England - Central Drop in Clinic Teeside: Contact: Angela Perks/Deborah Bowel Cancer Support (Semi Colon) Buckinghamshire: Singleton 01625 661598 Contact: Mr G Dickson 01642 563747 Milton Keynes Stoma Association Stockport Support Group Pat Brydon 01642 897903 Contact: Bruce Pollard 01908 582563 Contact: Angela Simpson 0161 419 Tyneside: Leicestershire: 5059 Gateshead Health NHS Trust Moving on (Leicester Royal Infirmary TOMAS (The Ostomates of (Stoma drop in clinic) Colorectal Support group) Macclesfield and Surrounding Areas) Contact: Sister Heather Wilson Contact: Wilf Patterson (Secretary) Contact: Kath Wood 01625 875442 0191 4878989 Ext 2221 01455 220344 Warrington Ostomy Support Group NHS Molineaux Centre Nottinghamshire: Contact: Jane Shaw 01925 662103 Contact: Lesley Brown 0191 2195656 Nottingham Colostomy, Ileostomy & Royal Victoria Infirmary Support Cleveland: Urostomy Support Group Group Oops Group Contact: Rosemary Brierley 0115 982 Contact: Gordon Weatherburn Contact: Julie Morrisroe SCN/Carol 7868 Younger 01287 284113 0191 2341109

54| TIDINGS| SUMMER 2010 Nottingham Stoma Support James Pagett Ostomy Support Group Devon: Contact: Mrs B Heath 0115 966 3996 Contact: Sandra Hutchings 01502 Devon IA North Notts Stoma Support Group 585955 Contact: Margaret Bond 01392 (Sutton-in-Ashfield) West Suffolk Support group 447374 Contact: Tore and Nicky Norman Contact: Jessica Pitt 01638 515525 CAT - Torbay 01773 715460 England - South East Contact: Donna Ashbrook 01626 854862 Staffordshire: Berkshire: Dorset: Outlook Monday Pop In Group (Bracknell) Cupid (Colostomy Urostomy pouch Contact: Ernie Hulme 01782 324441 Contact: Jackie Dudley 01344 426652 Ileostomy of Dorset) Christchurch Joan 01782 710828 West Berkshire Ostomy Club (WBOC) Contact: CA for details Worcestershire: (Reading) Cupid (Colostomy Urostomy pouch Kidderminster & District Collossus Contact: Jackie Dudley 01344 426652 Ileostomy of Dorset) Poole Support Group Contact: CA for details Hampshire: Contact: Brendon Drew 01299 Wiltshire: Southampton Support Group 400843 Swindon IA Contact: Carole Summer 02380 www.swindon-ia.org.uk West Midlands: 446779 Wessex Stoma Support Group Colostomy Group Wessex Urology Support Group Contact: Michael Slater 01722 741233 Contact: Diana Wick 0121 4242730 Contact: David Morris 02392 361048 Newhall Stoma Support Group Wales Kent: Contact: Sarah French 07773 396236 Blaenau Gwent Self Help Ashford Stoma Support Contact: Celia McKelvie 01873 852672 Contact: Chairwoman - Mrs Ursula England - East Royal Glamorgan Stoma Care Naish 01233 640863 Support Group Bedfordhire: Canterbury & Coastal Stoma Support Contact: SCD 01443 443053 Saturday Social Club Contact: Marie Culleton SCN Swansea Ostomy Self Help Group Contact: Karen Richards 01227 769679 Contact: Glynis Jenkins 01792 418245 01234 792278 Dover & District Stoma Support Wrexham Ostomy Friendship Group Contact: Marie Culleton SCN Cambridgeshire: Contact: Mrs R Thomas 01978 359445 01227 769679 Ostomistics Maidstone Stoma Support Group Northern Ireland Contact: Heather Connor 01733 Contact: Judy/Kirsty Causeway Patient Support Group 768332 Mob: 07757167422 01622 224305 Contact: Mary Kane 028 70346264 Essex: Daisy Hill Hospital Belfast London: M.E.S.S (Mid Essex Stoma Support) Contact: Bernie Trainor Whipps Cross University Hospital Contact: Clive Blanchard 01245 028 3883500 Ext 2222 Contact: Christina 0208 5356563 468750 Jeanette Johnson 01376 Mater Hospital Belfast 511862 Middlesex: Contact: Karen Boyd N.E.S.S (North Essex Stoma Support) Inside Out 028 90741211 Ext 2329 Contact: Mr K Harvey (Chairman) Contact: Bob (Chairman) 0208 Southern Trust 01206 271425 4284242 Sarah Varma 0208 2354110 Contact: Mary Jo/Bernie Brian Waller (Secretary) Semi-Colon Club 028 38612721 01206 540449 Contact: 01895 179391 Eire Optimistic Ostomates Oxfordshire: Bowel Cancer Support Group Contact: Janet 01702 385510 Angela Oxfordshire Ostomy Fellowship (Irish Cancer Society) 01702 385509 Contact: Pat Longworth 01235 524163 Contact: Olwyn Ryan South Essex Young Ostomy Group +353 12310500 Contact: Paul Gray 01708 501268 Surrey: Mayo Stoma Support STEPS Epsom and District Stoma Support (Castle Bar Hospital) Contact: Jackie Coleman Contact: Jan/Sheena 01372 735232 Contact: Marion Martyn 01268 451937 Sussex: 094 902 1733 Redbridge Ostomists Club (SAS) Brighton & District Stoma Care Contact: Stoma Nurses: Chris/Lisa support 0208 9708321 Contact: Sylvia Bottomley 01273 Editors Comment Hertfordshire: 554407 Colonise The Ostomy Friends Group Support groups are very Contact: Gill 01727 851556 Contact: Jane Quigley 01323 417400 often invaluable to those who Stoma Fellowship Ext 4552 are ‘Living with a Colostomy’. Contact: Andrea/Mandy 01438 West Sussex Princess Royal Stoma We support existing groups and help 781133 Support new support groups set up. Contact: Tina Walker 01444 441881 If you know of a support group not Lincolnshire: Ext 8313 mentioned in our listings Friends Support Group please let us know. Contact: Betty 01205 724120/Sheila England - South West 01205 364493 Avon: Here’s how you can get in touch via Grantham Support Group Bristol Ostomy Self Support (BOSS) e-mail: Bobbie 01476 464822 Contact: Christina 0117 9075326 [email protected] Norfolk: Joyce 0117 9558236 Rob 0117 Ostomy Friendship Support Group 9668021 or write to: Contact: Contact CA Cornwall: Colostomy Association 2 London Court Stars Ostomist and Carers Support Group East Street Reading RG1 4QL Contact: Anne Brown 01603 661751 Contact: Christine 01208 831471 or email: Suffolk: Optimists [email protected] East Suffolk Ostomy Group Contact: Sue Hatton 01326 340058 Contact: Marion Fisher 01473 311204

TIDINGS| SUMMER 2010| 55