IA Journal 200.Indd

ISSUE 200 SUMMER 2008

www.iasupport.org Quarterly Journal of IA issue

The Bryan Brooke Lecture 2008 The IA200 Journal through the Ages Stoma problems - how common are they, A commemorative article for our 200th and what can we do to avoid them? issue

Colitis and Ileostomy - Before and After Coming to Terms with a New Plumbing System This member’s experiences did not prevent Over 10 years with an internal pouch, and him taking part in the ‘3 peaks challenge’ very happy with it IA JOURNAL SUMMER 2008 From the editor John Smail

A warm welcome to this I am pleased to say that members continue to 200th issue of the IA send in stories about their personal Journal. It is thanks to experiences, which others can share and learn all those pioneers in the from. On page 48 there is a story from a early days of ileostomy member who has over ten years experience surgery back in the 1950s, with his internal pouch and is very happy with and the work of countless it, and on page 54 there is a story from another supporters ever since, that we have reached member whose life with his family improved this signiﬁcant landmark. dramatically following ileostomy surgery. In addition we have several other interesting In this edition, I have written a few pages on the articles and another excellent selection of history of the IA Journal which I hope you will readers’ letters. I would encourage members ﬁnd interesting, including some illustrations of to respond to these letters either directly with our Journal in its earlier years. In addition, there the author, or via the Journal. is a summary of the recent IA Bryan Brooke lecture at National Council 2008, and reports Thank you very much for supporting IA - and from IA executive committee members. here’s to the next 200 issues!

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Published quarterly on In this issue the 1st of March, June, September and December.

Published by 6 Newsdesk about it IA (The Ileostomy and Internal Pouch Support Group). 10 The Bryan Brooke Lecture 2008 Journal editor and advertising manager 22 The IA Journal Through the Ages John Smail, P.O. Box 22 Get security and Great. Yarmouth, Norfolk NR31 6WA 28 Young IA News Phone: 01493 300999 30 Internal Pouch News E-mail: [email protected] reassurance with NEW 34 Paediatric Stoma Care Copy dates Editorial contributions must be received no later than two SenSura Click 36 The Prince’s Foundation for calendar months before the proposed publication date. Integrated Health Advertising rates 38 IA Financial Accounts 2006/07 and production schedule dates are available from the editor. 2-piece system.

42 IA Directory Circulation 46 New Products and Services Each quarter, 12,000 copies are distributed free of charge to IA members, surgeons, doctors, nurses, ostomy The revolutionary SenSura adhesive 48 Coming to Terms with a New equipment suppliers and manufacturers, and others interested in the work of IA. Plumbing System – Offers excellent skin protection 54 Rising to the Challenge - Colitis and Disclaimer The views expressed by contributors are not necessarily – Stays in place Ileostomy - Before and After those of the Editor nor of IA trustees and none accept responsibility for the accuracy of statements appearing – Easy to remove 58 Passage to India herein. The display, description, demonstration or – Absorbs excess skin moisture 62 Dear Editor distribution by sample of any product by ofﬁcers or members at meetings, or recommendation of any product 77 Out and About by anyone connected with IA does not constitute an endorsement of that product by IA. 79 Index to Advertisers The Click that gives reassurance Data Protection Act Membership records are strictly conﬁdential and are not – Incorporates our well-known coupling system disclosed to anyone not connected with IA. Some membership records are kept on computer and anyone – Audible click when opening and closing who wishes their details to be removed should contact the local secretary, whose name and telephone number can be – Increased security and reassurance found in the Directory section. © 2008 IA - Articles may be reprinted by member associations of the International Ostomy Association (IOA) provided an acknowledgement is given. Produced by Printed by SenSura Click – A new sense of confidence TMS Media Richardson Print Great Yarmouth Lowestoft Phone: 01493 662929 Phone: 01502 516991 For further information and a sample please call FREEPHONE 0800 220 622 (UK) 1 800 409 502 (Republic of Ireland) The next edition or visit our website: www.coloplast.co.uk IA Journal 201 (Autumn 2008) will be published

Front Cover: Photograph by Cepta Burke. on 1st September 2008. Final date for editorial Retiring IA President Professor Norman Williams MS, FRCS, contribution to be received is 4th July 2008. FMedSci (left), pictured at NC08 with our new President Professor Neil Mortensen MD, FRCS.

Anne Demick IA national secretary into the future! The theme of the conference New officers at member was “Image IA - 08 and Beyond”; all organisations: sessions and workshops focused on the There are lots of changes to report to you theme and it is hoped that the image of IA and I will detail them below. You can find the will be further enhanced in local areas by new contact details for national officers and the ideas and best practices that were member organisation secretaries in the shared at this conference. Journal Directory on pages 42-45. Contact Newsdesk details for chairmen and treasurers can be Department of Health Consultation: obtained from the secretaries. National Council 2008 We also elected a new chairman of the “Arrangements under Part IX of the (NC08) was held in executive committee. Carolyn Stammers Drug Tariff for the provision of West of Scotland IA Newcastle upon Tyne has taken over from David Eades. In stoma and incontinence appliances Richard O’Grady has taken over from on 29th & 30th March thanking David for his leadership of the - and related services - to Primary John Cleland who has served for six years where delegates enjoyed national executive committee over the past Care”: as treasurer. The committee would like to a weekend of business five years, Professor Williams reminded thank John for his stewardship and meetings, excellent delegates of David’s amazing contribution A summary of the responses to the revised welcome Richard to this challenging lectures, interactive workshops, socialising to IA - from elected representative to proposals to the consultation can be found position in an active member with members from all over the country chairman of the finance sub-committee, on the Department of Health’s website at organisation. and of course, a very warm welcome from national secretary, editor of the IA Journal, the following link: www.dh.gov.uk/ the members of North Eastern IA. and Trustee of the IA of GB Trust, a role that Consultations/Responses (DH_083765). IA Northern Ireland he will continue to fulfil as he acts as mentor Dr Fiona Wilson is the new treasurer in Tribute was paid to our National President, to Carolyn as vice-chairman of the national During February and March 2008, the Northern Ireland, having taken over from Professor Norman Williams MS FRCS executive committee. David was presented Commercial Directorate held meetings with Laura McAllister who for the last five years FMedSci, as he stood down from office. In with a small token of appreciation from all all stakeholders and advised that a panel of has done a marvellous job of looking after his tribute, former President, Professor Sir his IA colleagues. Carolyn Stammers, who experts had been established to deal with the funds and implementing systems to Miles Irving, DSc (Hon) MD ChM FRCS was warmly welcomed to her new position, the re-classification of the section of the make the job that little bit easier. FMedSci, advised delegates that as a lasting needs no introduction to Journal readers Drug Tariff (Part IX) that contains details of memory of Professor Williams’ outstanding and Carolyn will continue with her other all stoma and continence products. A report Devon IA contribution to IA, the current and any future vital role within IA, as our liaison with stoma on the meetings and the results of the re- Sylvia Randall has taken over as treasurer joint research projects with the Royal care nursing. classification has been given to the Health from Sue Burgess who has had to step College of Surgeons will be named “The Minister and it is expected that, based on down because of poor health. Professor Norman Williams IA Research Peter Laflin and Joan Brough were unable these responses and discussions, a further Fellowship”. Professor Williams was to continue in their respective roles on the consultation will be published late in May North Eastern IA awarded honorary membership of IA and executive committee because of personal 2008. This will be accompanied by an Sandra Plunton has taken over from Pat presented with a Past President’s medal. commitments. Richard Shawyer was impact assessment and there will be a Ahern who has served for fourteen years as elected as Young IA Co-ordinator and the twelve weeks response period. In our secretary. Pat’s guiding hand on this very We were delighted to welcome our new role of National Visiting Co-ordinator will meeting with the Commercial Directorate, active committee has been greatly President, Professor Neil Mortensen MD remain vacant until a suitable candidate can we were again assured that the Department appreciated and I know she has been, and FRCS and look forward to his leadership in be co-opted. of Health is still working to the objectives will continue to be, a great help to Sandra in this important time of change for IA. A published in the original consultation the hand over period. Pat and Sandra are profile of Professor Mortensen will appear in So, some changes and some new and document that has been ongoing since both former members of the executive the next edition of the Journal. exciting times for IA as we move forward October 2005. committee.

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South East London & West Kent IA many years was their treasurer. Christine I was pleased to be at the meeting when Hamilton lost her brave ﬁght against a tribute was paid to Pam Thompson, Audrey terminal illness in December 2007 - she will Walker and Ken Holdaway for their be greatly missed by all the members of outstanding contribution to this member Kirklees & Calderdale IA. organisation. Moving from the post of secretary, Rachel Hayward was elected as Just a little reminder to Journal distributors chairman and Sue Blackwell was welcomed and secretaries that there was an increase as the new secretary. in the postal rates on 7th April 2008.

Central & North Lancashire IA I do hope you enjoy reading this 200th Keith Woan has taken over as secretary edition of the IA Journal! from Mary Hogarth (see tribute to Mary on page 74).

Peterborough & District IA Lindsay Mather is the new secretary at Peterborough & District IA.

IA Greater London West Paul Bolt has stepped down as chairman after six years’ service and a new chairman is being sought. The committee are pleased to welcome a new secretary, Charulata Patel, who takes over from Sandra Silva.

On behalf of everyone, I would like to record sincere thanks to all of the above people who have served the association so well in their various positions within member organisations for many years now. Welcome to all the new officers; we do hope you enjoy your time in office and wish you all every success. Please don’t hesitate to contact national office should you require any help or assistance at any time. We were pleased to welcome the newly elected chairman of The committee of Humberside IA have the executive committee to national office on 22nd April, pictured here with Karen (secretary to Anne Demick). Also prepared a tribute to former treasurer, Fred on this visit to Northern Ireland, Carolyn participated in Knapp (page 76) and Kirklees & Calderdale training for a section of the Northern Ireland visitors, and met IA has lost a dedicated member who for with our design company to progress the new literature.

8 www.iasupport.org 9 IA JOURNAL SUMMER 2008 The Bryan Brooke Lecture

The Bryan Brooke Lecture Current Areas of Concern • Primary Care Trusts and NHS Trusts are unlikely to be able to make up the loss Problems connected with stoma formation: of funds currently given by pharmaceutical firms, so there may be a • The formation of a stoma of necessity ceiling put on the procedures possible Stoma Problems: How common are causes a defect in the muscles of the and a more limited choice of appliances they, and what can we do to avoid abdominal wall to enable exteriorisation available to patients. In addition, about them? of the bowel, which may lead to 60% of stomatherapists are at least part- problems over a period of time. funded by industry and there could also The IA Bryan Brooke Lecture at National • Complications may occur during the be a problem here. Council 2008 in Newcastle last March surgical procedure itself. was given by Mr. P.J Lunniss MS, • Patients and stomatherapists know that Stoma Complications Study FRCS, a clinical academic colorectal problems of leakage and odour are surgeon at Homerton Hospital and St. common. This is a large long-term study being Bartholomews/Royal London Hospital. • Only a proportion of complications carried out by the Homerton Hospital He is on the Council of the Association come to surgeons’ attention and it is Colorectal Nursing Research Unit and the of Coloproctologists, and has written important that stomatherapists bring City University, funded by Hollister, and many papers. He has a particular these to their notice. being carried out in three phases: expertise in faecal incontinence and constipation, and complex anal fistulae. The Department of Health’s proposed reform Phase I - a retrospective study to to the funding of services and prescription determine the frequency and potential risk It is not possible to convey the actual products for patients with continence and factors of developing stoma complications. presentation of the lecture, however Dr. stoma problems may threaten: Elizabeth Rang, IA Trustee and an IA Phase II - construction of a model of risk executive committee member, has kindly • Patients’ choice of procedure. and to test it prospectively on patients prepared the following summary of the • Consistence in quality of care, including undergoing an ileostomy operation to see main contents of this year’s lecture. the delivery of specific services and which risk factors are important in the

Mr P.J. Lunniss MS, FRCS. appliances. development of complications. Introduction • Education and training of stomatherapists. Phase III - determine what measures can To put things into context, Mr. Lunniss • Resources for available research and be implemented to reduce risk factors and started his talk by reminding us that resulting in inﬂammation and severe development. complications. Professor Bryan Brooke, when senior narrowing of the opening. Life then could lecturer in Birmingham, revolutionised the very miserable for ileostomists. Also, in the quality of life of ileostomists by inventing 1940s and 1950s, the Fort Dunlop factory STOMA BAG COVERS the loop ileostomy where the end of the in Birmingham started developing stoma ileum is brought out and ‘everted’ to keep it appliances, and it could be said that Made to fit any stoma bag away from the skin. Earlier ileostomies advances in appliances over the past few • Most colours • were either kept ﬂush with the skin surface, years have led to even greater • Cotton or lace • leading to excoriation and extreme improvements in the quality of life of Phone 01205 723 327 soreness of the skin, or were a simple people with stomas, than the advances in Linda Butler (formerly Linda Pennock) protruding spout with no eversion, often surgery.

10 www.iasupport.org 11 The Bryan Brooke Lecture

Phase I - How common are complications Risk Factors in people with stomas, and what are the risk factors? 29 variables were recorded as possible risk factors including age and gender, co- Initially a random sample of 400 patients morbidities, indications for surgery, type of was picked from the records of 1408 operation, pre-operative siting of stoma, patients who had undergone the formation anaesthetic status (reflection of ability of of a stoma over a ten year period. From patient to withstand surgery), grade and this it was discovered that: experience of surgeon, body mass index (BMI) - rarely recorded but important to the • The average time to first complication incidence of parastomal hernias. was 85 days. • Two-thirds of complications had arisen After careful analysis to allow for possible by 6 months. overlap of conditions that might cause • Less than 4% arose after 2 years. problems, the risk factors found to be most significant were: It was therefore decided to confine the main study to patients who had been • Previous heart attacks or cardiac followed for at least two years. Of these surgery. patients, 647 had colostomies and 569 had • Breathing problems as heavy breathing ileostomies (total 1216). The vast majority and coughing may predispose to had end-stage stomas. Of these, 681 pressure on the weakened abdominal (56%) had experienced complications muscles and thus predispose to hernias. (more than one in many cases), and the • Chronic neurological conditions. following details were found, usually from • Diabetes - a risk factor for many their stoma care records: complications. • Smoking as cause for breathing and coughing pressures on abdominal Complication No. of individuals % muscles. Skin excoriation 379 31.2 • Poor anaesthetic status due often to the presence of infections and poor nutrition. Hernias 171 14.1 • Surgery for cancer. Bleeding 156 12.8 • Emergency surgery. Prolapse 66 5.4 Retraction 72 5.9 The main protective factors against stoma complications were found to be: Fistula 74 6.1 Bowel obstruction 116 9.5 • Surgery for inflammatory bowel disease Stenosis 52 4.3 (as opposed to that for cancer or Ischaemia 100 8.2 diverticulitis). • Planned surgery as opposed to Slough 33 2.7 emergency surgery.

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• Pre-operative siting of stoma. • Discomfort due to a dragging sensation • Support pre- and post-operatively of and pulling on the abdominal wall, and stomatherapists. also attacks of pain. • Stomal dysfunction. This Phase I study which took about 2 years: • Bulging abdominal wall may lead to leakage of bowel contents due to • Confirmed that complications of stomas difficulty in keeping appliances adhered are indeed common. firmly to the abdominal wall. • Found risk factors can be identified, • Tendency to bowel obstruction due to some of which may potentially be blockage of adjacent loops of bowel modified before undergoing planned which may sometimes lead to surgery such as treating heart disease, emergency surgery. and encouraging patients to stop smoking. Unfortunately surgery for the repair of • Found there is a need for a well- parastomal hernias is not very successful. designed large scale prospective long Almost 100% of people who have them term study to look at what could be repaired by opening up the abdominal done to avoid these complications. wall, replacing the bowel within the abdomen, and then sewing up the extra Phase II - what can be done now to reduce hole around the stoma to allow only the these complications? stoma to come out of the wall, will have a recurrence of the hernia. The other Parastomal Hernias possibility of relocating the stoma to the other side of the abdominal wall still has This was the most serious of the about a 75% chance of recurrence. complications arising from stoma formation and occurred in one out of seven of patients In the last 30 years surgery for the prevention in the phase I study. Other studies have of hernias has been explored, particularly shown an incidence of 30-50%. John through work on the development of Golligher, a Leeds surgeon who was reinforcement meshes, which were involved with IA in its early stages, wrote in historically man-made. But putting in a man- 1955, “Some degree of herniation around a made mesh has its own problems: stoma is so common that this complication can almost be regarded as inevitable”. • The operation is a long and complicated procedure, and can be a big Common problems caused by the undertaking for the patient. presence of parastomal hernias are: • Recurrence rates are still quite high. • The fact that the mesh is a foreign body • Impact of changes in appearance due to may result in infection with resultant bulging of the abdominal wall leading to scarring and deformity of the abdominal worries about body image, particularly wall, leading to difficulty in getting in women. appliances to stick.

14 www.iasupport.org 15 The Bryan Brooke Lecture

• Occasionally the mesh may erode compare the occurrence of parastomal through the abdominal wall and cause a hernias in 10 patients who had had a fistula - another passage into the conventional loop stoma with 10 abdomen. patients who had the stoma with the • If any further surgery is required it can addition of Permacol, a collagen be a difficult operation as the mesh may implant. The patients were not aware to be difficult to remove, as the infection which arm they were allocated. They and inflammation tends to make it were followed up until the stoma was dissolve into the abdominal wall. reversed, or at 12 months.

However over the last ten years, a lot of Loop stomas were chosen for the study research has been done on the use of rather than end stomas because: animal-derived or probiotic materials in the production of meshes, and these are now • They are reversible in the event of any available for use. Permacol, a pig-derived problems occurring during the study. collagen sheet, is being explored by • There is the ability to study the host- Professor Norman Williams. As he said, tissue response because host tissue “instead of trying to use it to repair a could be removed if the stoma had to be parastomal hernia, could we not use it to closed and examined microscopically prevent the hernias?” - this idea is under for any visible reaction. trial now. Probiotic materials are better • Longer term assessment would be than man-made ones because the material possible if reversal were delayed or is not seen as a foreign body in the way considered not necessary, to look at the that man-made meshes are, so there is longer term risk of parastomal hernia. less rejection and little scar tissue and adhesion formation. In addition, the Indicators in terms of age, sex, reason for meshes retain their strength for much the operation, and BMI were similar in both longer periods. arms, and the mean number of previous operations was one in both arms. Certain points need to be clarified before Permacol implants can be used routinely in The implants are stitched into a pocket the formation of stomas: underneath where the stoma is brought through the hole in the abdomen, and thus • Feasibility - is it technically possible to reinforce the strength of the abdominal use? wall under the stoma. • Safety - is the procedure safe and to the benefit of the patient? The results of this small survey showed: • Potential efficacy - is it going to be a useful procedure? • No patients in the implant arm developed a parastomal hernia over the Ethical approval was obtained for a year’s follow-up, whilst three in the randomised study on 20 patients to conventional arm did.

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• White cell counts remained similar in Phase III study - Determine what All patients will have a temporary ileostomy tests for the function of the muscles of the both arms, suggesting no increase in measures can be introduced to reduce the to protect the join until it heals. back passage, and these showed that there the risk of infection with an implant, risk factors and the complications. was no damage to the nerves or muscles of and the C-reactive protein levels, a So far, 15 patient operations have been the anal sphincter. The ‘quality of life’ tests marker for inflammation, showed no In recent years, the ileo-anal pouch performed using this procedure, 5 of whom also showed scores equivalent to those of increase over time. procedure is increasingly being offered to had ulcerative colitis. It was estimated that the normal population. Although most • The implants became enveloped in individuals with ulcerative colitis as a first of these 5 patients, if they had had a patients with ulcerative colitis can have the the host connective tissue, but there choice. This is usually performed by standard ileo-anal pouch operation, 4-12 usual ileo-anal pouch operation, for the was minimal integration and the opening up the abdomen or by a cms of diseased rectum would have been relatively few who require a deep dissection, implants were easily removable. laparoscopic procedure. In a minority of left behind, or the patient would have had to this new operation could be the answer. • The implants did not cause any patients it is very difficult for the surgeon to have a permanent ileostomy rather than the difficulties in the closing of the be able to reach far enough into the ileo-anal pouch they requested. In the early Mr Lunniss finished his talk by saying that he stomas. abdominal cavity to remove all the days of the operation there were problems hoped he had been able to show us that the diseased bowel, and there is sometimes a with post-operative infections, but these surgeons are continuing to advance the In summary, the study exploring the effect worry that some disease is left behind in have now been dealt with. All the patients progress of surgery by providing procedures of using a biological implant for the the lower rectum or anus which could who had the operation are fully continent, with even better results for their patients. He prevention of parastomal products showed result in continued symptoms or the and most have a median daily pouch emphasised the importance of the continued that it: potential to develop into a cancer. opening of 3 (1-5) which is very good. All need for close relations between patients, Sometimes damage can occur to the anal taking part in the trial agreed to undergo surgeons, stoma care nurses and industry. • Is a safe and feasible technique. sphincter giving a risk of pouch frequency • Shows minimal host implant tissue and leakage. The end result in these cases reaction. may be that a permanent ileostomy will • Is effective in the prevention of have to be performed, even though an ileo- parastomal hernias (0/10 versus 3/10). anal pouch had been requested.

In recent years the perineal approach has It was decided that these results justiﬁed been used, particularly for reconstruction of the setting up of a larger, long-term project the anal sphincter in cases of incontinence, under the direction of Professor Norman but in these cases the operation is limited to Williams with funding from IA. The a few centimetres of depth into the ‘PROPHECI’ study, as it is known, has abdomen. Professor Norman Williams has been set up as a multi-centre trial to been gaining experience in going deeper conﬁrm whether the use of the collagen into the abdomen by the perineal approach, mesh, Permacol, in people undergoing an known as the ‘APPEAR’ operation, and has operation for formation of a permanent been developing the ability to treat other stoma, will prevent parastomal hernias. It is conditions of the lower bowel. He is able to a randomised controlled trial, comparing go deep enough to see the lower rectum the use of the collagen mesh for clearly and to be able to decide where it is reinforcement with a control group in safe to divide it, remove the diseased part of which the stoma is constructed without any the rectum, and then bring down the colon reinforcement. This study is currently and staple it to a suitable part of the ongoing. remaining bowel above the anal sphincter.

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John Smail Journal Editor Editor Mrs. B. Haq. The issue is shown every conceivable detail that could go priced at 2/6d for those who remember the wrong did go wrong. I spent thirteen pre-decimal days! months in hospital, and lost everything that matters most to a The issue contained an woman - my hair fell out, my 1 1 ileostomist’s “ABC” where figure went from 8 ⁄2 stone to 5 ⁄2 such things as bathing, stone, and worst of all, I even The IA Journal through the Ages belts, bleeding, clinics, and lost my mind. I only wanted to Crohn’s disease were die. When friends told me of described. Several adverts other ileostomists who were To celebrate the 200th issue of our IA was originally known as Q.T. Great appeared for such companies leading normal lives, I did not Journal, I thought I would write a Britain, and the first four issues of the as Down Bros (two-piece believe them. few paragraphs on its history since association’s publication were known as appliances), Donald Rose Ltd the association was founded back “Q.T. Great Britain Newsletter”. The first (lightweight rubber bags), Chas But today, two years after in 1956, when I was a mere lad of 10 issue with “IA” appearing on the front Thackeray Ltd (Schacht my operation, I am not only and completely unaware of the major cover was number 5, priced at 1/6d (post ileostomy appliance), J G leading a normal life, but I events that would dominate my life in free), as shown below. Franklin & Sons (“Translet” easy- Journal No. 50 am actually better in every way the late 1970s - ulcerative colitis and an change disposable bags), Seton than I was before. Before, I was afraid to ileostomy operation. Products Ltd (waterproof strapping), make new friends for fear of my body or Eschmann England (the “Continental” mind letting me down. Today, I am full of Like thousands of others over the years, I appliance), Simpla Plastics (“Sassco” confidence and have many new friends. I have drawn strength from IA, from the system), and finally Charles Bullen Ltd and have so much energy that I am hoping to many friends I have gained since joining, Salt & Son Ltd both of whom remain take up auxiliary nursing. I have regained and of course from the IA Journal itself involved with the production of stoma my hair, my figure, and most important, my which has always been a great source of products today. peace of mind. information, with mutual understanding and support. I am very proud to be editing Letters to the Editor featured a variety of So remember, no matter how much agony this 200th edition of a series which has subjects, and included the following from a of body or mind you may have today, it will continued without a break since the first Mrs. Phillips of Gateshead whose letter is pass. And what is a year or two out of a ‘Newsletter’ was published in August 1956. as relevant today as it was in 1970: lifetime of happiness? My life used to be N e w s l e tt e r N o . 1 hell, now it is sheer heaven on earth. I The very first edition was Roneo-duplicated As we have now “I am writing mainly for those ileostomists awake each morning and thank God to be Newsletter No. 5 on foolscap paper, however by the reached issue no. 200, reading our Journal for the first time and alive, and just cannot wait to get on with following issue it had been reduced to the I thought members might like to read what who need strength to go on, and because another wonderful day.” small booklet format which has been used the IA Journal had to offer on other my heart is full of gratitude to God and all ever since. The first issue was edited by Dr. ‘anniversaries’ in issues 50, 100, and 150. those who work with him. So, all you non- Journal 100 - Summer 1983 Cuthbert Dukes OBE, MD, MSc., FRCS. He ileostomists who read our Journal and may Our president then was Professor Sir Miles was assisted by a committee comprising Journal 50 - Summer 1970 be bored hearing so much about our ‘new Irving MD, ChM, FRCS, our Chairman Tom the Chairman of London Division (Mr. R.D. Our president at this time was Professor life’, please bear with me. Keily, and our National Secretary & Journal Peters), the Chairman of the Midlands Bryan Brooke MD, MChir, FRCS, our Editor Chris Penney. No price is shown as Division (Mr. T.B. Robinson), and Mr. L.C. Chairman Tom Sturgeon, General I became an ileostomist after seven years by this time the Journal was being McLean. Secretary Leslie Kingston, and the Journal of ulcerative colitis, during which time distributed free of charge to members.

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The main medical ulcerative colitis. The operation and the article in issue 100 inconvenience of managing the stoma are a was “Inflammatory very small price to pay for that, but I hope Bowel Disease and that at some time in the future people with Arthritis” which u.c. will not need such a drastic solution to remains in print their problems. That means research, and today as one of research takes money, so in 1983 I shall be the articles in the able to join in fund-raising activities.....” “IA Journal Omnibus” Journal 150 - Winter 1995/1996 (which can be Our president then was Professor Norman ordered from Williams MS, FRCS, our Executive Journal No. 100 IA National Committee Chairman Tom Keily, and our Office). A “Research Round-up” National Secretary & Journal Editor David page gave details of a project involving salt Eades. A ‘commemorative’ article (such as and fluid loss from ileostomies, and a this one) was included, written by David project undertaken into possible Eades, which described the evolvement of employment problems following stoma the IA Journal up to issue 150. surgery. Another interesting report also contained the names of six members with ileostomies who completed the 1983 London Marathon, and five associate members, all as members of the “IA team”. Finally, in the letters section, the following letter appeared anonymously:

“I am 33 years old, married, and shall be returning to work in January 1983 after having surgery at the end of September 1982. It would have been impossible for me to have had more or better help, care and support, either when I had colitis or when I was advised that an operation was the only way to health, or during and after the operation.

The main reason for my joining IA is so that I can read of research results and of new Journal No. 150 and existing equipment. For me an An article ileostomy has meant a return of excellent containing nutritional advice for health and spirits after several years of internal pouch patients was also included,

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together with the results of an ostomates May 1987. Life for my family and I just got ‘quality of life’ study. IA’s “Romanian project” better from that moment on. I could do had also just been launched, and an appeal everything with the children that I had not was included for funds. By this time, been able to do before and we were a companies familiar to us all now as regular ‘normal’ family. advertisers were appearing, including Dansac, Hollister, Fittleworth, CliniMed, I have now achieved even greater things - ConvaTec, Pelican, Bullens and Coloplast. I have just returned from a ‘Mum’s Adventure Weekend’ on Dartmoor with the school A sample letter from the ‘dear editor’ where I work. During the course of the section, written by Pauline Lyon-Shaw of weekend, I climbed the side of a sheer cliff, Dorchester, read as follows: abseiled, took part in a river run, trekked across Dartmoor on horseback for two “After seventeen miserable years of suffering hours, and ﬁnally went caving. I was able to from ulcerative colitis, I had an ileostomy in participate fully in all those activities with the

Checking the proofs before the printing presses run.

exception of the ‘maggot run’ in the caves been non-professional editors drawn which involved wriggling on your stomach from within IA. Our association has been through a very narrow run! This trip has very fortunate that members have been done wonders for my confidence; I feel that I prepared to volunteer and to develop the can conquer the world. I will always necessary expertise to produce what has remember the experience, especially at become a very professional publication. those times when I feel sorry for myself.” We are of course very grateful to the manufacturers and suppliers, without Until 1973, the IA Journal was published in whose support the IA Journal could not black & white only, however the Winter have developed as it has. However, it is edition of 1973 saw ‘spot’ colour used on thanks to you, the readers and members the front cover for the first time. The use of of IA, that the Journal has reached its colour then gradually increased however it 200th issue after 52 years. It is your was not until 1995 that the ability to have Journal and it is your regular full colour on every page was reached. contributions - letters, articles, and photos that fill the pages. Please keep up Throughout its history, the IA Journal has the good work so we can look forward to A member of Richardsons staff preparing for print production. had only eight editors, all of whom have our next 200!

26 www.iasupport.org 27 IA JOURNAL SUMMER 2008 Young IA News

Richard Shawyer Young IA Co-ordinator this Journal (page 42). I can’t really draw reserved space for us, so let’s ﬁll that upon my own experience as I was only space...start sending your stories and given my ileostomy in my teens. We are articles to me! also investigating the production of an information sheet that could be handed to As a sub-committee we are working to teachers and other adults - this should help help all our Young IA members people understand what the condition is throughout the UK. If you think we can Young IA News and how this might affect the day to day improve something then please let me life of a child in education. know and we can build upon your suggestions. I have already taken a Well it really has been We intend to continue to have the ‘local’ You may remember two Journals ago copy of the thread “What one thing” a hectic few months nights out and these will be supported by (J.198) I had an article published on my from the Young IA website forum in the Young IA area Young IA to build upon the excellent work career as a pilot. I think it would be (www.iasupport.org) and will be with the build-up to completed last year. We also intend to beneﬁcial to younger people if other reviewing it with the sub-committee. I National Council 2008 in organise another Young IA weekend; we young IA members wrote in with their think this year should be very exciting Newcastle. What a great are currently discussing and investigating stories. The younger people are not alone, with the new ideas that are floating conference we had, with locations and dates and details will be and it is always refreshing to read about around. Let’s all build upon the previous the Young IA workshop built around announced shortly so keep an eye on the how other people are coping and what success of Young IA, take it forward, paediatric stoma care, which is pretty Journal, IA website, and also e-mail me if they are up to. Our Journal editor has and raise our profile. much uncharted territory for IA. We you want to be added to the Young IA also had an evening with the younger mailing list. members who were attending the conference, as well as local members Following the workshop at National STOMASERVICES Call our FREE HELP LINE from Newcastle, on the Friday night - Council we would also like to investigate TAKING STRESS OUT OF STOMA CARE 0800 169 3807 this was received extremely well by all. how we can cater for the younger members of IA. We believe we cater At the conference I was elected as your reasonably well for the 18 - 40 age group new Young IA co-ordinator with Peter but at present we don’t cater for the under

Laflin having stood down due to personal 18s. As I write, Heather Buck is just about For more than 20 years StomaServices hhaveave bbeeneen providingproviding peoplepeople with:with: reasons. I am sad to report that the Young to attend the “Breakaway” weekend which • Timely and confi dential delivery of a complete range of stoma care IA sub-committee is losing three previous caters for young people with urinary and products members, Anna Rennie, Kate Hallett and bowel diversions. We will complete a full • Reliable support and independent advice from qualifi ed and Jonathan Legge. The committee thank report for a future Journal, and we hope experienced stoma care professionals them for all their hard work and wish them that it will be a very successful event. • A FREE telephone helpline staffed by qualifi ed stoma care nurses every success in their careers which they • A FREE home visit service from a qualifi ed stoma care nurse have gone on to pursue. It is a pleasure to Please let me know what you think we can (at present in London only) welcome Sue Blackwell to our sub- do to cater for the younger market. My Your order will be sent within 48 hours of receipt of your prescription. committee, who is a civil servant. The initial thoughts are perhaps something for Samples can be supplied Young IA sub-committee will be formally teenagers and then move into the CALL US NOW ON OUR FREE HELP LINE ON 0800 169 3807 approved in May by the IA executive paediatric area. I need help in committee, and we all hope to achieve a understanding what these people need - Stoma Services FREEPOST 138 Hendon Lane London N3 3BR lot during the next year. my contact details are in the Directory of Email : [email protected] | Web site : www.Stomaservices.com

28 www.iasupport.org 29 9305 A5 IA Advert Artwork:Layout 1 13/2/08 12:41 Page 1

IA JOURNAL SUMMER 2008

Rachel Hayward Pouch Group Co-ordinator “ Internal pouch news 91%

It’s April as I write this, decisions are so much more difficult when there is snow outside there is a choice. of Lift Plus users my window and right now summer seems an This is the overwhelming message that the awfully long way off. It’s Pouch Group Committee and I are hearing. * hard to imagine what it’ll Over the last 12 months, since taking over can’t be wrong” be like to leave my flat without my big as Pouch Co-ordinator, I have personally winter coat let alone be able to wander been contacted by over 120 people looking “ around in flip flops! However looking to for support, and the vast majority of those When we asked Was your stoma pouch the months ahead has been very much calls and e-mails have been from those ” on my mind, and I guess that looking to seeking first-hand information to help them easier to remove when using Lift Plus, future possibilities is something we as make the decision to have internal pouch 91% answered “ Yes” IA members do particularly well; I guess surgery. most of us have had good training - having IBD means that you’re always looking for A lot of the information on internal pouches the possibility of finding a toilet nearby! varies greatly; those who are inspired to Experiencing such dramatic surgery forces tell their stories or go on the internet tend you into a position to accept your own to be almost evangelical about their pouch, “Would you like to make mortality, and when you emerge from the insisting that it’s the best thing ever and removing your pouch or flange easier?” other side of that place, it feels as though everyone should have one, or they are the your future possibilities are endless. complete opposite - that their pouch was a Contact Opus Healthcare now and we’ll send you a free dreadful experience and made their life a sample of Lift Plus medical adhesive remover So just as it’s almost impossible to misery. Most people, however, fall • For fast, painless removal of medical adhesives For your Free Sample remember what it feels like to have the somewhere in the middle, and this • Ideal for removing stoma pouches, flanges, warm sun on your skin when you’re waiting disparity is something we clearly need to hydrocolloid wafers and rings Just phone us now on in the bitter cold rain for a bus that feels as address. • Contains Aloe Vera to promote healthy skin 0800 458 7605 though it’s never going to come...it is • Instantly removes awkward adhesive residue or email: surely impossible to imagine how your life At National Council we were able to hear • No further washing or cleansing needed [email protected] is going to be if you choose to have an Angie Perrin, Specialist Nurse at the John • Silicone-based, will not sting even on sore internal pouch. It’s such a massive Radcliffe Hospital in Oxford, tell us about or broken skin decision to make, and there is a huge her research into quality of life for pouch Opus Healthcare is dedicated to providing a range of high quality specialist stoma care products. pressure to make sure you ‘get it right’ - owners. Angie’s findings confirmed what Our aim is to make living with a stoma as easy and stress-free as possible. All of our products are available on prescription. FREE Opus Healthcare Ltd • PO Box 8204 • Ardleigh • CO7 7WH • opus-healthcare.co.uk 30 www.iasupport.org SAMPLE * “A service evaluation of the use of silicone-based adhesive remover”. C J Rudoni, BJN, 2008 (Stoma Care Supplement), Vol 17, No 2. 0849 Drainable A5 AD AW 16/1/08 15:07 Page 1

Internal Pouch News

many of us had thought for years - very popular ‘Pouch Events’ - the next “Freedom to perception of whether a pouch is a one, by the way, is on 28th June in ‘success’ or a ‘failure’ is completely Birmingham. Coming out of the feedback explore new subjective and not as simple as surgeons from the Pouch Group workshops at may suggest. The traditional measure of NC08, it would make sense to extend an pouch frequency and the magic number of event and organise a weekend for anyone horizons” four times a day (any more, then your interested in internal pouches to come pouch is a ‘failure’) can be interpreted too and find out the various possibilities that ® literally. I probably go about eight times a lie ahead. (FREESTYLE DRAINABLE USER) day, I go when I need to pee, or if I don’t think I’m going to be near a loo for a while, VSL#3 update: Loads of you have been in or if I need to pass wind - I never learned touch with either me, IA National Office or that skill and am always just too scared to the pouch website forums about obtaining risk it. So I would be considered a ‘failure’ - VSL#3 on prescription. As yet VSL#3 is but how can that be so when I have not in the BNF and is classified as a ‘food complete control and my pouch doesn’t supplement’ and is therefore not prevent me from doing anything that I want straightforward to prescribe; it will depend FreeStyle Drainable is designed to meet to do? on your Primary Care Trust on whether you the needs of those with a ‘normal’ stoma - slightly will be able to get it on the NHS. Ferring, protruding on a flat body surface. Featuring Only you can decide what is the best who distribute VSL#3, tell me that this the new SureFast drainable outlet with option for you, and I certainly accept that situation is being reviewed, which should easy release tab, FreeStyle Drainable not everyone wants to have a pouch. You make things a lot easier once it is re- may not want to go through more surgery classified. I will keep you posted. is simple to empty, clean and and the risks that involves, and there is close, giving confidence to ® certainly a pressure from some surgeons Iron deficiency: I had always assumed I live life to the full. that younger people should have a pouch was just a bit weird; I knew that some of to have a better body image. I definitely the colonically challenged are B12 DRAINABLE experienced that (although it had the deficient but I hadn’t heard of anyone else SureFast outlet with easy release tab opposite effect and made me want to keep who was low in ferritin. I am not able to my bag - I thought, why should I change store iron which makes me anaemic, which myself to make other people feel shows itself with a low ferritin count (I was comfortable ...?). But don’t be put off by down to 2 three weeks ago). I’ve never had some of the stories you hear, come and an explanation for this and was always told Manufactured by a CliniMed® Group company find out for yourself and find out first hand. by my various consultants that it wasn’t All in all, I think you have to be a bit of a because of my internal pouch...But ha! - For a free sample of FreeStyle Drainable please complete the coupon and return it to: CliniMed Ltd., FREEPOST HY241, gambler to have an internal pouch - there’s they’re wrong! According to new research High Wycombe, Bucks. HP10 9BR (NO STAMP REQUIRED) or call the CliniMed Careline on 0800 036 0100 or visit our website certainly an element of risk - if that’s at the John Radcliffe Hospital, up to 20% of www.clinimed.co.uk. something you can live with then I reckon pouch owners are like me and suffer from Mr/Mrs/Ms: Initials: Surname: the odds are pretty good. low ferritin (although they don’t know why Address: Postcode: yet), and they now routinely screen their Tel. No.: Details of the current pouch you use: � One piece � Two piece I hope that this year the Pouch Group can patients. It’s good to know I’m not that Name: Code: My exact stoma size is: mm continue to build on the success of the weird after all! � I understand that this request will be handled by CliniMed Ltd. or SecuriCare (Medical) Ltd. I would like my details to be kept on file, so that I can be kept up to date with information about relevant new products and services. Welland products are distributed in the UK by CliniMed Ltd., Cavell House, Knaves Beech Way, Loudwater, High Wycombe, Bucks. HP10 9QY. CliniMed® and FreeStyle® are trademarks of www.iasupport.org 32 CliniMed (Holdings) Ltd. ©2007 CliniMed Ltd 924/1107 IA JOURNAL SUMMER 2008 Paediatric Stoma Care - more to it than just small adults

Claire Bohr Paediatric Stoma Nurse have undertaken a paediatric stoma care seven nurses represented such a small Bristol Royal Hospital for Children course. Like all successful groups, we have island. Over three days we were able to terms of reference, aims, and an eye- update our knowledge, talk about our catching logo. A decision was taken from concerns, and share our experience of the beginning not to have a dedicated clinical practice. It was reassuring that we chairperson. We felt that it needed to be may be a small country but our care and Paediatric Stoma Care - run by the group members themselves, knowledge is equal to any. It was a taking it in turns to be host, and delegate challenging three days as the majority of more to it than just small adults to the other members. We meet three times the presentations were in French - we did a year, rotating venues around the UK and have the facility of translation, but some Many UK paediatric stoma nurses work with the fact that their child is dependent Ireland. French does not translate directly into autonomously, many work within a small on stoma care. English, so some words were missed out! team that combine specialities. The job At present the group has 26 members, with can be very isolating, and with very little In 2005, Helen Woodcock, a paediatric an average of 15 at each meeting. The As the travel time was seven hours, we published literature, it is challenging stoma nurse in Sheffield, contacted group is compiling a ‘standard of care’ took some holiday time to discover to accrue best clinical knowledge and paediatric stoma nurses throughout the UK document to define good practice in Montréal - we were very fortunate to arrive practice. and Ireland asking them to attend a day’s paediatric stoma care. We have just as the trees were turning into their meeting to establish what interest there standardized some of our individual autumn colours - a spectacular sight. The job has many challenges, one being would be to form a Paediatric Stoma Nurse leaflets, and developed guidelines for that the age group of the patients ranges Group. Seventeen nurses attended this paediatric practice. The group acts as a Hopefully this meeting was the first of from 0 - 16 years. When caring for a baby first meeting, and it was a good resource for health professionals and many. I felt very privileged to have or a young child you have the problem of opportunity to put faces to the nurses I had industry, updating and developing attended the very first paediatric stoma size, you also have to support the parents, been ringing for support and reassurance information and products. care conference. Without sponsorship, and in many cases the baby may only be a in my newly appointed job. The day was attending this conference would have been few days old. With the middle age group spent in a lot of discussion - eg. if a group In October 2007, the first dedicated impossible, and I am grateful that through you have to gain the child’s confidence, was formally established, who would run international paediatric stoma conference sponsorship from IA, impossibility became usually through play, and it may take it? And how would it benefit paediatric was held - an opportunity our group could reality. several visits. You then have to nurses and their patient group? not miss out on. Stoma care conferences communicate with the child in a simple are held regularly in the UK, Europe, and language they understand - and once Over the next few meetings we compiled a internationally, but these mainly focus on again there are always anxious parents mission statement - “The Paediatric Stoma adult patients - paediatric updates are who need explanations. Nurses Group (PSNG) aims to promote very few and far between. Interest was excellence in practice for neonates, sought within the group, and seven Then there is the teenage group, easier to children and young people with stomas by members were granted leave from work communicate with (sometimes) but who developing evidence-based health care and family. As the conference was in have added pressures - their peers, and influencing national standards and Montréal, it would mean more than an education, and body image, to name just a guidelines.” overnight stay. Sponsorship was obtained few. The job is very challenging, but to give from industry, and IA very kindly children the confidence to care for their Membership of the group consists of sponsored a nurse to attend. own stomas is hugely rewarding. It is nurses with a special interest in paediatric usually the parents who find it the hardest stoma care. Most of the members work 127 delegates attended from 17 different to adjust, and difficult to come to terms within a dedicated children’s hospital and countries and it was fantastic that our Some of the delegates attending the international conference.

34 www.iasupport.org 35 IA JOURNAL SUMMER 2008 Press Release - ConvaTec Limited

Press Release ConvaTec Limited The overall UK winner of the Integrated Donations Report Health Award, sponsored by Nelsons, went Legacies to the Midlothian Sure Start family support General Fund scheme that has transformed children’s lives Ronald Baker £10,000.00 through a dedicated, innovative and Frank Burditt £1,000.00 integrated approach. The staff understand Minnie Chesmore £500.00 Donations: External The Prince’s Foundation how poverty, poor education, low self- General Fund esteem, diet and exercise directly impact the Sheila Wood £1,000.00 for Integrated Health children’s development, and work directly Bain Capital Ltd on behalf of Greg Mackin £1,000.00 with both the children and their parents to In memory of Kenneth Adcook £240.88 The Prince’s Foundation for Integrated surgery. Great Comebacks® provides improve their daily lifestyles. Amongst the In memory of Lydia Johnson £210.00 Health is a charity dedicated to information and inspiration to those facing wealth of activities that the schemes offer Dan Barter £153.50 Give As You Earn £149.10 improving the health of people through the physical and emotional challenges of are; six family support centres, counseling John Smail £80.00 a more holistic and natural approach. It inﬂammatory bowel diseases, colorectal services, personal development courses and Anne Demick £60.00 recognizes that often a natural all-round cancer and ostomy surgery whether as a children’s play groups, which encourage George & Jean Duncan £50.00 approach to lifestyle can help people result of a condition developed later in life ‘learning through play’. The judges felt that Brian Carse £50.00 with health conditions recover, develop or at birth. the Midlothian scheme stood out for its Mr D.J. Dottie £30.00 and progress through life. determination to strengthen parents’ ability In memory of Iris Letitia Hutchinson £20.00 In memory of Jack Cotreave £10.00 On 20th March 2008, The Prince of Wales’ to maximise their children’s potential. Justgiving fund raisers The Foundation has always been a great charity held its own awards ceremony for Leo Sharrock - London Marathon sponsorship £1,007.11 advocate of the good work of patient the Integrated Health Awards, which focus ConvaTec and the Foundation for Joanne Raynes - Wilmslow Half Marathon £628.20 groups and has recently given their on services in the UK that provide Integrated Health are working to improve sponsorship Jamie Keegan - Run Around The Driveway 2008 £903.52 support to ConvaTec’s Great Comebacks® information and empower people to the support networks for ostomates and Rebecca Wyatt - Wilmslow Half Marathon £292.84 patient programme, which recognises manage their mental, physical and their families through a series of sponsorship individual achievements following stoma emotional health more effectively. collaborative activities. Other supporters of In memory of Peter Butler £50.00 the programme are the Colostomy Stuart Wiseman - Coast to Coast Ride £47.82 Research Fund Association, IA, UA, the Royal College of Mrs Phyl Morris in memory of Bob Morris £760.00 Nursing (RCN) and World Council of John Woodhead £250.00 Enterostomal Therapists (WCET). The Acorn Spiritualist Group £100.00 Beverley Golbourn £20.00 If you would like to nominate or share your Helen Bowen £15.00 story please e-mail us on Michael Mason £10.00 [email protected] or visit John Lawson £10.00 www.greatcomebacks.com or for more Donations: Member Organisations information call 0800 282 254. Research Fund IA Central & North Lancashire £2,000.00 Leicestershire IA £2,000.00 For further information on the programmes IA West of Scotland (The Lynda Sinclair and schemes outlined above please visit Memorial Research Fund) £1410.00 www.midlothian.gov.uk/services/ccs/ Norfolk & Suffolk IA £1000.00 Lincolnshire IA £1000.00 PublicCCSdetails.asp?id=996 or Prince Charles with Mary Backstrom, Surrey IA £900.00 Vice President ConvaTec Ltd. www.greatcomebacks.com/uk/programs/ Merseyside IA £250.00 index.shtml. IA Greater London West £100.00

36 www.iasupport.org 37 IA JOURNAL SUMMER 2008 2006/2007 Financial Accounts

Nick Moon IA Treasury Services The unrestricted funds had a routine year. Auditor’s opinion The General Fund was reduced as planned In our opinion, these summarised accounts of but the increase in investment values shown IA for the year ended 30th September 2007 are in the Capital Investment Fund more than consistent with the full annual accounts on offset this reduction. The most interesting which we have issued an unqualified opinion. changes during the year were in the Research Fund. The income of £182,459 was Jones Avens 2006/2007 Financial Accounts mainly due to the accrual of £140,000 in Chartered Accountants respect of a legacy from Henrietta Harland & Registered Auditors and the expenditure of £310,288 was due to Chichester, West Sussex I am pleased to present the usual annual report on our financial results for the year ending the fact that we committed to funding two new 30th September 2007. These are the figures relating to IA nationally, the accounts of projects during the year with a combined cost March 25th 2008 your member organisation are available from your local committee. During the last year of £300,000. Although none of this money has IA’s assets increased by £202,104 to £4,310,420 and this surplus was entirely due to the actually been paid out at this point, it has to A copy of the full Annual Report and increase in value of our investments. Here is a summary of the results by fund: be recognised in the accounts. The deficit Accounts, approved by the Trustees on 16th balance therefore is not a problem, as the February 2008, can be obtained from Nick Fund Balance Incoming Outgoing Balance funds committed will actually be paid out over Moon at the address shown in the Directory 1/10/06 Resources Resources 30/9/07 the next three years, during which time further on page 42. The full trustees’ report and income will be generated to rebuild the fund. accounts were submitted to the Charity £ £ £ £ The Miscellaneous Restricted Donations Commission on 8th April 2008. Fund was closed at the end of the year. As all General 364,026 259,538 296,163 327,401 the money left in the fund was restricted for Capital Investment 3,409,253 359,274 0 3,768,527 use by Young IA, the executive committee Elizabeth Clay Memorial 196,384 14,454 8,751 202,087 decided to transfer it into the Young IA Bursary Fund. Total unrestricted These figures show a healthy financial funds 3,969,663 633,266 304,914 4,298,015 situation for IA, but we are continuing to seek ways of using funds constructively and the Research 102,710 182,459 310,288 (25,119) executive committee have offered a further Welfare 18,902 1,371 937 19,336 research fellowship to CORE (formerly the Bryan Brooke (IA) Digestive Disorders Foundation), which will cost in excess of £200,000. In addition, you Overseas Travel 13,592 753 0 14,345 will be aware that the stock market has been Young IA Bursary 2,557 2,256 970 3,843 in turmoil since the date of these accounts Miscellaneous restricted and it is likely therefore that the year to donations 892 47 939 0 September 2008 will see a decline in IA’s assets, regardless of what we actually spend. Total restricted funds 138,653 186,886 313,134 12,405 However, the executive committee will monitor the situation carefully and take steps to

minimise the impact of outside factors on our Grand Total 4,103,316 820,152 618,048 4,310,420 activities.

38 www.iasupport.org 39 F5999 Convex Cons Ad IA Journal 16/4/08 4:18 pm Page 1

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new range of Confidence Convex Supersoft pouches. So the only question that REASON 7 remains is why haven’t you called 0800 626 388 or visited www.salts.co.uk for more Maximum security through a soft and integral information and free samples?* opening/closing system

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*Convex products should only be used after prior assessment by a stoma care nurse

CONVEX SUPERSOFT IA JOURNAL SUMMER 2008 IA directory

North of England SHEFFIELD & ROTHERHAM LEICESTERSHIRE President: Mr Steve R. Brown President: Mr Adam Scott MS FRCS IA directory CENTRAL & NORTH LANCASHIRE Secretary: Ms Sue Pollard Secretary: Mr Alan West President: Mr M M Mughal MB ChM 6 Orchard Close, High Greave, 4 Simpson Close, Syston, The Ileostomy and Internal Pouch Support Group – Registered Charity Number 234472 FRCS Sheffield S5 9GL Leicester LE7 2BJ Secretary: Mr Keith Woan Telephone: 0114 246 3105 Telephone: 0116 260 1689 80 Carleton Road E-mail: [email protected] Chorley WEST RIDING OF YORKSHIRE Lancs PR6 8UB President: Mr P M Sagar Bsc MD FRCS LINCOLNSHIRE National Office JOURNAL EDITOR Telephone: 01257 278759 Secretary: Mr Phil Higgins President: Mr A Barlow FRCS 145 Middleton Park Grove, Secretary: Mr Paul Pyrah Peverill House Mr John Smail Middleton, Leeds LS10 4BN 31 Spencer Street, Lincoln, LN5 8JH 1-5 Mill Road 36 Yallop Avenue, Gorleston, EAST LANCASHIRE Telephone: 01132 765036 Telephone: 01522 820154 Ballyclare Great Yarmouth, Norfolk NR31 6HD President: Mr R W Nicholson FRCS E-mail: fi[email protected] E-mail: [email protected] County Antrim Telephone: 01493 300999 Secretary: Mrs Janet Sudall BT39 9DR E-mail: [email protected] 22 Cartmel Drive, Burnley, Lancs BB12 8UX WIGAN NORTHAMPTON President: Mr M C Holbrook MS FRCS President: Mr Alan Berry ChM FRCS Telephone: 028 9334 4043 LIAISON WITH STOMA CARE NURSING Telephone: 07714 277288 Secretary: Mr Antony Beahan Secretary: Mr Peter Lambourne Freephone: 0800 0184 724 Mrs Carolyn Stammers E-mail: [email protected] Ashlea, Ring O’Bells Lane, 8 Tennyson Close, Northampton NN5 7HJ Fax: 028 9332 4606 6 The Pippins, Church Road, Lathom, Ormskirk, Lancs L40 4TE Telephone: 01604 588617 E-mail: [email protected] Clehonger, Herefordshire HR2 9SG HUMBERSIDE Telephone: 01704 894580 Website: www.iasupport.org Telephone: 01432 267259 President: Mr John E. Hartley BSc E-mail: [email protected] MD FRCS NORTH MIDLANDS Directory of National Officers Secretary: Mrs Ann Sharpe YORK President: Mrs C Hall ChM FRCS POUCH GROUP Dannatt House, 81 Brigg Road, President: Dr C C Lyon MA MRCP Secretary: Ms J Brough Secretary: Mr Brian Turner Flat 2, Rear of 42 Ashlands Road, NATIONAL PRESIDENT Miss Rachel Hayward Barton-on-Humber, 47 Fountayne Street, York YO31 7HN Hartshill, Stoke-on-Trent ST4 6QS Professor Neil Mortensen MD FRCS Flat B, 119 Pepys Road, London SE14 5SE North Lincs DN18 5DX Telephone: 0207 358 0369 Telephone: 01652 636184 Telephone: 01904 633966 Telephone: 01782 710828 E-mail: [email protected] E-mail: [email protected] NATIONAL SECRETARY E-mail: [email protected] E-mail: [email protected] Mrs Anne Demick at National Office VISITING KIRKLEES & CALDERDALE Midlands NOTTINGHAMSHIRE President: Dr K Teahon MD FRCPI NATIONAL TREASURER All enquiries to National Office. President: Mr P Holdsworth FRCS BIRMINGHAM Secretary: Mr Barry Robinson Mr Nick Moon Secretary: Mrs Rosaleen Bawn President: Dr Ian Chesner FRCP 36 Dorchester Drive, Mansfield, The Old Cottage, Tangmere Road, WELFARE 9 Bishops Way, Durker Roods, Secretary: Mrs Peggy Costello Nottinghamshire NG18 4QH Tangmere, Chichester, West Sussex PO20 2HW. All enquiries to National Office. Meltham, Holmfirth HD9 4BW 200 Tyndale Crescent, Great Barr, Telephone: 01623 626725 Telephone: 01243 779710 Telephone: 01484 854096 Birmingham B43 7HU E-mail: [email protected] YOUNG IA CO-ORDINATOR Mr Richard Shawyer MANCHESTER Telephone: 0121 628 0781 PETERBOROUGH & WISBECH Secretary: Mr Ken and Mrs Margaret Dale EXECUTIVE COMMITTEE CHAIRMAN P.O. Box 294 President: Professor Gordon Carlson COVENTRY & DISTRICT 10 West Mill, Easton-on-the-Hill, Mrs Carolyn Stammers Hertford FRCS President: Mr Nigel Williams FRCS Nr. Stamford PE9 3NX All correspondence to National Office Herts Secretary: Mrs Jane Rose Secretary: Mrs Valerie Kilburn Telephone: 01780 481324 E-mail: [email protected] SG13 9DY 1 Falkirk Drive, Bolton, Lancs BL2 6NW Telephone: 0203 004 6192 Telephone: 01204 535407 8 Orchid Way, Rugby, CV23 0SD E-mail: [email protected] Telephone: 01788 571057 FINANCE SUB-COMMITTEE CHAIRMAN E-mail: [email protected] E-mail: [email protected] E-mail: [email protected] SANDWELL & WALSALL Mr David Gutteridge President: Dr Mark Cox FRCP MRCP Flat 15, Little London House, ELECTED REPRESENTATIVES MERSEYSIDE GLOUCESTERSHIRE Secretary: Ms Sue Bond West Bromwich Street, Walsall WS1 4DD (All c/o National Office) President: Dr Tony Ellis MB ChB MD President: Mr T A Cook DM, FRCS 8 Barmouth Close, Willenhall, Telephone: 01922 638364 Mr Bob Alcock, Mr George Allen, Miss Sally Ashdown, Secretary: Mrs Sylvia Fernley Secretary: c/o Mrs Carolyn Stammers West Midlands WV12 5SL E-mail: [email protected] Mrs Pauline Fallows, Mr Derek Oliphant 16 Liscard Grove, Liscard, Wallasey, Wirral CH44 5RB 6 The Pippins, Church Road Telephone: 01922 477559 Clehonger, Hereford HR2 9SG E-mail: [email protected] INTERNATIONAL RELATIONS POSTAL BRANCH Telephone: 0151 638 4127 Telephone: 01432 267259 Mrs Brenda Flanagan Secretary: Mr Derek Oliphant E-mail: [email protected] SHROPSHIRE & DISTRICT 26 Manor Road, Slyne with Hest, Lancaster LA2 6LB Telephone: 01387 263768 NORTH EAST President: Mr T M Hunt MS FRCS Telephone: 01524 823438 E-mail: [email protected] President: Mr S B Kelly MD FRCS KETTERING & DISTRICT Secretary: Mrs Margaret Abel E-mail: brenda.fl[email protected] Secretary: Mrs Sandra Plunton 13 Chandra Place President: Mr M D Rashed FRCS 8 Colemere Drive, Wellington, Blakelaw Secretary: Mr Roy Presland Telford, Shropshire TF1 3HH Newcastle NE5 3TA 35 Lodge Road, Rushden, Telephone: 01952 641302 Telephone: 0191 242 2709 Northants NN10 9HA E-mail: [email protected] It is the policy of IA that all the officers of the national executive committee, divisional and branch committees (apart from E-mail: [email protected] Telephone: 01933 314831 medical consultants) shall themselves have had a colectomy and have a full understanding of all that is involved in living with an ileostomy or internal pouch.

42 www.iasupport.org 43 IA directory IA directory

STOURBRIDGE DEVON PLYMOUTH & DISTRICT DUMFRIES & GALLOWAY NORTH OF SCOTLAND SOUTHERN IRELAND President: Mr A Kawesha BSc, President: Mr Ian Daniels FRCS President: Mr K Hosie FRCS President: Mr J S Dreyer FRCS President: Professor R Keenan FRCS President: Mr David Waldron MCh, Mbchb, FRCS Secretary: Mrs Margaret Bond Secretary: Mrs Jill Wotton Secretary: Mr John Scoular BEM Secretary: Gail Farquhar FRCSI, FRCS Secretary: Mrs Lorraine Cadwallader 10 Lewis Crescent, Clyst Heath, 78 Brentford Avenue, Whitleigh, 17 Loreburn Court, Annan, DG12 5HU 15 Abbey Sq, Torry, Aberdeen AB11 9LF Secretary: Ms C Burke The Poplars, 231A Stourbridge Road, Exeter EX2 7TD Plymouth PL5 4HD Telephone: 01461 204984 Telephone: 01224 890304 29 Springdale, Tullow Road, Carlow, Eire Kidderminster, Worcs, DY10 2XB Telephone: 01392 447374 Telephone: 01752 205448 E-mail: [email protected] Telephone: 059 9131005 Telephone: 01562 755630 E-mail: [email protected] EAST OF SCOTLAND E-mail: [email protected] S.E. LONDON & WEST KENT President: Mr Nikos Evgenikos FRCS TAYSIDE Honorary EAST LONDON & SOUTH ESSEX President: Mr Mark George MS FRCS (Gen) Chairman: Mrs June Tulloch President: Mr Lavelle-Jones consultant advisers SWINDON President: Mr I P Lineham FRCS Secretary: Miss Sue Blackwell Stornoway, Shore Road, Strone, Argyll Secretary: Mrs Jillian Sutherland (All c/o National Ofﬁce) President: Mr Richard Payne MB, Secretary: Mr Brian Easey 80 Sladedale Road, Plumstead PA23 8RR 71 Denoon Terrace, Dundee DD2 2EB BS, BSc, MS, FRCS 19 Godman Road, Chadwell St. Mary, London SE18 1PX Telephone: 01968 677673 Telephone: 01382 524408 MEDICAL: Secretary: Mr Martin Brien Essex RM16 4SP Telephone: 0208 316 2946 E-mail: [email protected] Dr C S J Probert MD, MRCP 38 Purley Avenue, Park South, Telephone: 01375 858915 E-mail: [email protected] WEST OF SCOTLAND GYNAECOLOGICAL: Swindon, Wilts SN3 2DS FIFE President: Dr Ruth McKee FRCS Mr D W Pring BSc, MRCOG Telephone: 0179 353 2776 GREATER LONDON WEST SURREY President: Mr K C Ballantyne FRCS Secretary: Mrs Jacqui O’Donnell SURGICAL: E-mail: [email protected] President: Dr E H Rang President: Mr Humphrey J Scott MS FRCS Secretary: Mrs Terry Fleming 15 McFarlane Road, Balloch, Professor N Mortensen MD, FRCS Secretary: Mrs Charulata Patel Secretary: Mrs Cecilia Humphrey 37 Parbroath Road, Glenrothes, Fife Dumbartonshire G83 8EA Mr M Thompson MD, FRCS WORCESTERSHIRE 39 George V Way, Perivale 7 Queenswood Rd, Woking, Surrey GU21 8XJ Telephone: 01592 772674 Telephone: 01389 720303 DERMATOLOGICAL: Secretary/Treasurer: Wendy Bennett ACCA Middlesex UB6 7JA Telephone: 01483 476235 Dr Calum Lyon MA, MRCP 45 Honeymans Gardens, Telephone: 0208 723 4182 E-mail: [email protected] HIGHLANDS NORTHERN IRELAND LEGAL: The Waterfront, Droitwich WR9 9AD E-mail: [email protected] President: Mr J Docherty FRCS President: Mr R Maxwell FRCS Mr A A Marks Telephone: 01905 770831 SUSSEX Secretary: Mrs Chris Sturgeon Secretary: Mr George Allen RESEARCH: E-mail: [email protected] HAMPSHIRE & I.O.W. President: Mr P Farrands FRCS “Tigh Kyroin” Inverroy, Roybridge 11 Woodlands Court, Lisburn BT28 2XP Professor Sir Miles Irving DSc (Hon) President: Mr Dan O’Leary FRCS Secretary: Mr David Drakeley Invernesshire PH31 4AQ Telephone: 02892 664041 MD, MChir, FRCS Southern England Secretary: Mr Nick Moon 47 Gloucester Road, Tilgate, Telephone: 01397 712078 E-mail: [email protected] The Old Cottage, Tangmere Road, Crawley, West Sussex RH10 5HR AVON Tangmere, Chichester, Telephone: 01293 409379 President: Mr Paul Durdey MS FRCS West Sussex PO20 2HW E-mail: [email protected] Secretary: Mr T A W Connell Telephone: 01243 779710 Hernia Advert 07 6/2/07 11:07 am Page 1 Russett House, Barnwood Court, W. HANTS, WILTS & DORSET Leighwood Drive, Nailsea BS48 4FE KENT President: Mr R Talbot MS FRCS Telephone: 01275 790380 President: Mr Alistair Cook MChir FRCS Secretary: Mrs Jenny Pipe Secretary: Mrs Mavis Prior 78 Danecourt Road, Poole BH14 0PH BEDS & NORTH HERTS 8 Allsworth Close, Newington, Telephone: 01202 740440 • The Sash belts are available on prescription and suitable for both male President: Mr Robert Foley FRCS Sittingbourne, Kent ME9 7NW E-mail: [email protected] and female. • The Stoma Support and Hernia Belt is Secretary & Treasurer: Mr Tony Waite Telephone: 01795 843507 • All belts are custom made from information given on our Order Form made of a 50mm (2”) non elasticized 12 Bronte Crescent, Hemel Hempstead, Wales, Scotland & Ireland and a hole is cut into the belt flange to fit your preferred pouch. webbing attached to a restraining Hertfordshire HP2 7NT NORFOLK & SUFFOLK • No fittings are required. Belts are processed and mailed within two flange that fits between the bag and working days. Telephone: 01442 391797 President: Mr I H K Scott MChir FRCS NORTH WALES the adhesive section of the pouch. E-mail: [email protected] Secretary: Lisa Cooke President: Mr Jamieson • For further information and to obtain an Order Form Freephone : 0800 389 3111 18 Winceby Close, Thorpe St Andrew, Secretary: Mrs Shan Davies BERKS, BUCKS & OXON Norwich NR7 0NS 7 Aber Las, Flint CH6 5PZ President: Mr Andrew Huang MB CHB Telephone: 01603 701735 Telephone: 01352 735550 Chairman: Mr Phil Horsley E-mail: [email protected] E-mail: [email protected] • The Security and Leakage Belt is made of a P.O. Box 543 soft 32mm (1.25”) elastic belt attached to a retaining flange that fits between the bag and • The SASH Stoma Support and Hernia belt is designed and manufactured Abingdon, Oxon NORTH ESSEX SOUTH WALES the adhesive section of the pouch. by an Ostomist and gives support to the muscles surrounding the stoma. Telephone: 01635 868265 President: Mr A H McL Ross FRCS(Ed) President: Dr T J Morris FRCP E-mail: [email protected] Secretary: Mr Ray White Secretary: Mrs Brenda Chamberlain • Eliminates most leakage problems and gives added security and confidence. Ostomists report relief from dull aches and pain in the stoma region while 55 Bodmin Road 15 Fidlas Road, Llanishen, Cardiff CF14 0LW wearing the belt. CORNWALL Springﬁelds, Chelmsford Telephone: 02920 750805 • Used by ostomists with a pasastomal hernia (a bulging around the stoma) the President: Mr E R V Lloyd-Davies FRCS Essex CM1 6LL E-mail: [email protected] “the ring of confidence” belt will also help prevent muscle damage and enlargement of the hernia. Secretary: Mrs Barbara Trenerry Telephone: 01245 351223 • This lightweight unobtrusive belt is designed to • Ideal for work, sports, gardening, housework, DIY or at any time stomach 56 Porthmeor Road, St. Austell, WEST WALES help eliminate leakage problems by holding the muscles require a firm support. Cornwall PL25 3LX NORTH LONDON President: Mr N D Carr MD FRCS adhesive section of the pouch against the body President: Mr M Ward MS, FRCS Secretary: Carol Evans during all activities. • With support from the Sash belt and periodic consultations with a consultant Secretary: Mrs Pat I’Anson Holmdale, Mount Pleasant, Llangunnor, • 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 21 Well End Road, Well End, Carmarthenshire SA31 2JZ Ref. no. S1 the weight of a full pouch Hertfordshire WD6 5NZ Telephone: 01267 231073 Ref. no. SR103 Telephone: 0208 207 3203 E-mail: [email protected] Sash Medical Limited Freephone 0800 389 3111 “Woodhouse”, Woodside Road, Hockley, Essex, SS5 4RU. Website:- www.sashstomabelts.com

44 www.iasupport.org 45 IA JOURNAL SUMMER 2008 New products and services

New products and services Pelican Healthcare Called Simplicity, the unisex boxers and the editor Pelican Healthcare is pleased to ladies briefs are not only made from a announce the launch of a new range of 2- lightweight and breathable fabric that Piece appliances which are available on keeps the body dry at all times, they also prescription now*. beneﬁt from antibacterial properties.

Brunlea touch to their service, and hope the next 25 The Pelican Select 2-Piece range of Brunlea Surgical Supplies is a company years will be as successful. products has been specifically designed to with long standing credibility, and this year enhance comfort, whilst ensuring will be Brunlea’s Silver Jubilee year. For an immediate response or for any maximum security coupled with ease of further information, please call Brunlea’s connection. The company registered as appliance freephone number on 0800 834712 (see contractors in 1983, and specialise in also advert on page 3). Select 2-Piece is available in three ostomy and incontinence products. Their pouch sizes: Mini, Standard and Maxi. aim is to ease the trauma and anxiety so Coloplast The unique thumb tab allows easy often associated with this type of condition Coloplast have introduced SenSura Click, a opening of the outlet for emptying and by making patients aware that ordering new product to their SenSura range, and cleaning, whilst the controlled flow and receiving supplies need not be a available on prescription from 1st June 2008. waterproof filter is effective at reducing Simplicity Stoma Support Wear is made problem. Brunlea understand and care the risks of pouch pancaking and in two-way stretch fabric which moves with about patients’ situations, and when SenSura Click is a 2 piece system which ballooning. Select 2-Piece base plates the body, and features ribbing on the front necessary act as a link with their stoma combines the revolutionary SenSura adhesive are available in two sizes: 50mm and that gives secure pouch support as well as care nurse. and the well-known secure Click coupling. 70mm dependent on your stoma size. a flush finish that is virtually invisible under The Select base plate is unique and most clothing. The support wear also has a Brunlea was formed when Mr Wally Thanks to a unique double layer adhesive, extremely flexible offering you maximum deep and high waistband that offers extra Thomas, who has many years of service as SenSura gives skin friendliness and comfort. comfort and covers the pouch without a medical representative in the stoma care protection against stomal output, whilst preventing the stoma from working. What’s field, saw there was an urgent need to offering security and reassurance with a Please see Pelican Healthcare’s more, Simplicity briefs have no labels to provide a prompt door-to-door delivery safety ring coupling that is easy to use. When advertisement in this edition on page 9 to irritate you when you move, and after service to patients, a service that opening and closing, the coupling will give an request your complimentary samples, or washing they can be quickly dried in embodies patient contact and care, is audible click indicating the bag is securely simply call their Freephone helpline on: around 30 minutes. simple to operate, and always available. fastened to the baseplate and when you 0800 052 7471. remove it again. SenSura Click is available in The Simplicity boxers and briefs are Over the last 25 years Brunlea’s family-run a wide choice of bag sizes and baseplates, * Not currently available in Scotland. available on prescription in the UK in black business has grown from strength to giving an extensive choice to ostomists. or white in S/M, M/L and L/XL sizes and strength. The success of the company is Salts Healthcare form part of Salts’ comprehensive range of testimony to the quality and standard of SenSura Click is advertised on page 5 of Salts Healthcare have launched the accessories. service they provide, which has been this Journal which gives details on obtaining Simplicity range of boxers and briefs. evident by the appreciation expressed by free samples. Alternatively you can contact If you would like further information on the many patients over the years. Coloplast’s award winning Customer Care Ostomists who want a little extra security new range, need guidance on sizing, or team on 0800 220 622 for details of the and comfort need look no further than a would like to place an order, please call The company thanks everyone involved in company’s full product range, or visit their new and improved range of stoma support Salts’ Freephone number 0800 626388 or helping them to provide such a personal website at www.coloplast.co.uk wear from Salts Healthcare. visit www.salts.co.uk.

46 www.iasupport.org 47 IA JOURNAL SUMMER 2008 Coming to Terms with a New Plumbing System

Robert Anderson Norfolk & Suffolk IA By this time I had passed my 24th birthday, this soon faded as painkillers were and for a young man you can probably administered. I remember crying again imagine this was not how one had planned when I looked at what the surgeon ‘had their life to turn out. Of course I’m equally done’ to me. I had a stoma bag attached to sure that no one, whatever age or gender, my abdomen and a mucus fistula lower would be particularly chuffed with having down that I do not recall anyone telling me Coming to Terms with a New one of these procedures. would be there. It must have been a combination of the medication and my Plumbing System So the consultant confirmed my UC and feeling sorry for myself that caused me to from then on I started a love-hate be quite weepy in hospital, and I suppose if relationship with prednisolone. Large I am honest some of that was vanity and I was diagnosed with ulcerative colitis doses brought everything under control - I concern for my body image. I had always in 1992 at the age of 23. I had been stopped bleeding, my motions began to enjoyed swimming and keeping fit. I had suffering with diarrhoea and severe firm up, and I had much more control over taken up scuba diving and it was difficult to bleeding from the rear for nearly a my bowel actions. However, as we know, see how this lifestyle was going to work out month before I plucked up courage to one cannot stay on large doses of with a stoma. visit my GP. I thought, like most others I prednisolone forever, and as I gradually guess, that the problem would clear up, reduced the dosage the symptoms would ...you can probably imagine this and I was embarrassed about talking to return. I always dreaded getting down to was not how one had planned anyone about it. that 10mg stage because I knew that the their life to turn out. symptoms of UC would most likely follow. How I wish now that I had done something I was discharged from hospital and spent sooner. I had lost nearly 3 stone in weight This yo-yo process of steroid dosage the next couple of months at home getting and in photographs from the time I looked continued for four years before the used to the new arrangement for my waste like a walking skeleton. It is odd that one consultant made an appointment for me to discharge. I was not overly concerned seems not to notice these changes in see a surgeon at Ipswich Hospital. The about the situation - it was after all Winter, oneself at the time. It is only looking back surgeon looked through my records and so there was little scope for baring my or meeting someone one hasn’t seen for a didn’t sugar-coat the pill when he told me stoma to the world. I returned to work at while that the differences are spotted. that I was facing having to undergo surgery the end of January - I worked then as for my condition. I recall crying when that warehouseman at the Port of Felixstowe - Anyway, my GP arranged for me to visit news came. The surgeon and the stoma and life continued. I think the worst of it the proctologist at Ipswich Hospital and nurses talked me through the procedure was the mucus fistula that wept quite badly prescribed me something for the and I was given a video of the surgery to but the stoma bag itself was fine. I had a diarrhoea. I can’t remember how effective watch. In a way I wish I hadn’t seen that - it few leakages at night as I got used to the that was but within a week I was in was like a gory horror movie - but at least I fitting procedure. As I recall the bag would hospital speaking to a consultant who had an idea of what to expect. fill more with wind (a right old Aeolus!) and diagnosed ulcerative colitis (UC) and my rear-end! One thing I do remember this would cause it to come loose as I arranged for a sigmoidoscopy. I can’t was the wonderful feeling of euphoria That was how I came to find myself in moved around at night. remember if he prescribed any creeping up my arm as the mild hospital in November 1996 undergoing the prednisolone at that stage or not, but I anaesthetic was administered into the first stage of my internal pouch operation. It wasn’t long before I was called back to soon found myself back in hospital, this back of my hand - one bonus to come The first operation was carried out and I hospital to have the second stage of the time lying on my side with a ‘telescope’ up from the situation! woke up on a ward in some discomfort but operation. Not a reversal, because I knew

48 www.iasupport.org 49 Coming to Terms with a New Plumbing System Coming to Terms with a New Plumbing System

that things would not be the same as enough to get to the toilet, but often it Yet it seemed to me that if I sat watching seated, not standing like the guitarists. In before I was ill. I had been told to expect seemed that as soon as I got off the loo it TV or playing games on the computer all 2003 I started studying for a degree with my motions to be much like those I had was time to go again. After a couple of day my pouch worked well, but if I pushed the Open University, which is by the by seen from the stoma and that I could weeks, by which time I think I was going a myself a bit and tried exercising, it would really, except to say that if my UC had expect to be going to the loo up to six bit crazy being in hospital, I was allowed play me up. continued unchecked I may not even have times a day and once at night. OK, that home to adapt to my new pouch. been here to do it. sounded reasonable to be rid of the stoma This went on for a few years until my bag and be able to lead something of a The first months were pretty rough. I still partner, Kristine, and I went to Hawaii in In 2005 I joined a gym and started more normal life, albeit having to keep one had discharge from where the mucus January 2000. This was the first time I swimming again with no noticeable eye on toilet facilities. fistula had been and this took a long time remember being confident enough to go affect on my pouch. to heal. This kept me off work for about out without a piece of tissue paper in my It wasn’t long before I was called four months. In this time I built up my underwear. I was more active - we went After the Hawaii holiday I built up what I back to hospital to have the second strength and started walking longer snorkelling and hiking across an extinct was able to do. On a trip to Crete in late stage of the operation. distances and found I was able to hold on volcano and I had little trouble with the 2003 we hiked down the Samaria gorge, until I got to the next toilet. I was still sore pouch. I should mention that through all a trip of ten miles with, of course, no Again I went down to surgery - this was in though, as I got a lot of anal discharge this time I had played the drums in a local toilets to stop at on the way. In 2005 I March of 1997 so hardly any time between during this time. I tried several creams to rock covers band and this had never joined a gym and started swimming operations - but this time I woke up with all keep the area round my anus clean and caused me a problem. I think it may have again with no noticeable affect on my sorts of tubes sticking out of me. I had a non-irritated. There was a lot of itching too helped being a drummer as of course I was pouch. I still have to go to the toilet four catheter and a tube in my anus and one in just inside the anus. This did get so bad at my nose. I had IV drips going into my arm one point that I seriously considered going and felt like something out of The Matrix back to my surgeon and asking for the (although of course that film wasn’t stoma bag back! WHITE ROSE "Products for people with Stomas, WHITE ROSE from people with stomas” released at that time). The surgery hadn’t COLLECTION NEW CATALOGUE AVAILABLE worked too well, and nothing would come However, I persevered and over time the out of the tube from my rear. An X-ray frequency of my visits to the loo dropped, Ladies Range ‘Just Men’ Range A wide range of underwear We have a good selection of revealed that part of the pouch had although I was still going up to ten times a for lady ostomates from basic higher waisted trousers and adhered to my spine or something like that, day and a couple at night, and I started to everyday wear (includes full shorts. Including summer length bodies) to luxury silk. trousers. so I had to go down again to have that look forward to getting back to ‘normal’. All our briefs have a special Also swimshorts and inner pouch to keep your bag underwear with higher waist sorted out. Every time I tried to be more active though, secure and out of sight. and special inner pouch for comfort and security. whether it was swimming or using a rowing A selection of legwear including high waisted tights. Designed by an Ostomate By this time my surgeon had been through machine, I seemed to get flare ups where I We know what having a stoma is Extensive New Swimwear about so you can talk to us in the wall of my abdomen three times so you would get bleeding from the pouch and Range complete confidence and we will can imagine it was a bit sore. This time the more frequent and loose motions. A selection of swimwear understand your issues and needs. styles with our inner pouch surgery worked and after a few days as I and double lined fronts for Our products have been tested and confidence and security. Ideal used by ostomates over the last four started eating solids I began to get ...I persevered and over time for swimming, aqua aerobics years and are recommended by and beachwear. stoma departments. You can order movement from the pouch and so from my the frequency of my visits to Popular range of two piece from us in complete confidence as designs now available we offer a full money back rear. Now I couldn’t stop going! My the loo dropped... Phone for our new Free guarantee. sphincter muscle must have weakened so catalogue New Product much it was hard to keep control, and the Neither the surgeon nor my doctor could Traveljohn portable White Rose Collection Ltd . PO Box 5121 . Wimborne . BH21 7WG . England pouch for emptying Email: [email protected] . tel: 01202 854634 . bed sheets ended up soaked a couple of see a relationship between the extra Urostomy or Visit our website at www.whiterosecollection.com times. Gradually I was able to hold on long activity and the extra activity of my pouch. Ileostomy bags

50 www.iasupport.org 51 Coming to Terms with a New Plumbing System

or five times an day, generally following I can still see the advantage of a stoma meals, so the more frequently I eat the bag, or external pouch, as maybe life is more I go, and usually once at night less dictated by when you have to empty again depending on what I eat and how it, but I’m not sure how I would have got close to going to bed. I do still get a little on walking ten miles in Crete. That was a bleeding and sometimes my motions are long time between toilet stops and would very watery and I do get sore round the a bag have over-filled? anus at times. I have found that Acriflex works best for this. It heals the soreness I wouldn’t say that life with an and provides something of a barrier for internal pouch has been a bed next time I go. of roses. The first years were very rough... I wouldn’t say that life with an internal pouch has been a bed of roses. The first To me I suppose the real advantage is years were very rough and as I mentioned when it comes to swimming. I have the at times I considered asking for a ‘re- scars of my surgery but that does not reversal’. But now I know what to expect prevent me getting in the pool for an and how certain foods and drinks will hour. The frequency of visits to the toilet affect me, life does seem better. It is can be a problem - especially at work - certainly 100% better than when I had UC. but I just have to be prepared for that and work around it. I certainly do not consider my internal pouch to be superior to an external one, and I am aware that in years to come I may have to go back to a stoma bag.

I have had my internal pouch for ten years now - how many people have had them for twenty or thirty years, and how they get on, I don’t know. Maybe someone else could enlighten us on that question. For now I am glad to be able to do the things I do that I was unable to do when I had UC, or when I had a stoma. If I had to go back to having a stoma tomorrow I would still be happy, just to not have the debilitating ulcerative colitis.

(Editor’s note - Have you had an internal pouch for several years? If so, please contact me if you would like to share your experiences with our readers.)

52 www.iasupport.org IA JOURNAL SUMMER 2008 Rising to the Challenge: Colitis and Ileostomy - Before and After

Richard Armiger Beds and North Herts IA On Thursday 12th July 2001 I had an apart from still feeling weak I found myself operation to remove my colon and to have noticing an improvement in my quality of an ileostomy formed. I remember coming life, even in those early days. round in recovery in some considerable pain and seeing a clear bag over my new Over the next year or so I had one or two Rising to the Challenge: Colitis ileostomy, with staples down my stomach leaks and switched from a one-piece bag where they had operated. My recovery did to a two-piece system, including the use of not go to plan - I contracted MRSA, which strip paste, which has enabled me to be and Ileostomy - Before and After led to septicemia, spent three days in leak-free for these past five years. In intensive care, had to have my heart November 2005 I had an operation to Having received and read the IA more sense of the particular symptoms I restarted, the wound re-opened due to remove the remains of my rectum, having Journal with interest since my ileostomy was experiencing. infection, and had pretty much every side opted to retain my ileostomy rather that try operation in 2002, I thought it was about effect to the treatment possible. In total I an internal pouch. time I wrote in telling a little of my own Wendy and I got married in September spent just over ten weeks in hospital. story. 1991 and she has, I am proud to say, been Since the initial ileostomy operation, my strength and support throughout my Eventually in early September I got home Wendy and I have managed to have a My story starts about 20 years ago, illness. with a drain still in place and my wound still couple of foreign holidays, previously soon after I had started going out with slightly open. However the one thing that I ruled out due to the severity of my colitis. I Wendy. I found that I started to need to Between 1995 and 2001, I had numerous had already noticed was the improvement have set up my own business and dash to the toilet for no apparent reason accidents where I did not manage to in not getting that urge to go to the toilet. I successfully completed an MBA. Wendy and that I would occasionally have make it to the loo in time, on train learnt quickly that the ileostomy bag was and I now have two lovely (well, most of diarrhoea. As time went on I started to journeys, car journeys, and once while pretty easy to change and manage, and the time!) children, Jacob & Iona, who notice the occasional spots of blood leading worship as a Methodist local when I went to the loo so made an preacher. It got to the point where I appointment to see my GP and pretty needed to know that there was a toilet quickly got referred to a consultant. available everywhere I went, and Wendy After a number of tests, including a and I found that we could no longer go colonoscopy, barium meal and for long walks in the countryside. In June endoscopy, my condition was diagnosed 2001, I had a severe flare-up of the colitis as Crohn’s disease. I was prescribed which resulted in me being admitted to some oral tablets and given follow up Luton & Dunstable Hospital. Over the out-patient appointments with the next three weeks I had a number of consultant. medical treatments, from intravenous steroids through to enemas, and daily Over the next 10 years I had many visits to blood tests and even a relatively new the consultant and was prescribed treatment for colitis called cyclosporine, numerous different tablet treatments. used by transplant patients to knock out During the various visits to the consultant the immune system. All the time my I had yet more tests and biopsies done, inflammation count was on the up, and and sometime towards the end of this 10 visits to the loo increased to around 17-18 year period had my condition diagnosed times a day, each time passing blood as ulcerative colitis - knowing this made with diarrhoea. Richard with his wife Wendy and their children, Jacob and Iona.

54 www.iasupport.org 55 Rising to the Challenge: Colitis and Ileostomy - Before and After

challenge which raised just over £6000 for the Church project, with 10% going to NACC who received £600, and IA who also received £600.

During the challenge I had to change my ileostomy bag once or twice whilst climbing. With the two-piece system I found that carrying spare bags and plastic bags meant I could quickly remove the full bag and clip on a new empty one. I then About to set off on the climb up Ben Nevis. took the full bag with me secured in a nappy sack until I could dispose of it. were born two years and ﬁve years after my operation respectively. So I can only There is life after an ileostomy, and as I say that, for me, having suffered from have found out, sometimes life in all its Crohn’s disease and ulcerative colitis, an fullness. For me my personal Christian faith ileostomy has meant life has begun and the love, prayer and support from my afresh, and has enabled me to do things church, family and friends has enabled me that had simply become impossible to cope and get through this roller-coaster before the operation. of a ride these last few years.

In June last year, I joined four other I still have the occasional problems with people, plus two drivers, from my local the stoma, particularly with stomach Methodist Church, in attempting the upsets and sore skin, but these pale into National 3 Peaks Challenge. I think this insigniﬁcance when compared to the life was in part down to my turning 40 last that I can now lead with my wife and two year, and was definitely in response to gorgeous children. having an ileostomy and wanting to prove that life has got significantly better for me since the operation. We set ourselves the challenge of completing the three peaks, Ben Nevis in Scotland, Scafel Pike in England, and Snowdon in Wales in under 48 hours. The challenge was to raise money for our own Church building project as well as supporting NACC and IA. We set off early on Monday 18th June for Scotland, and 46 hours later we arrived back at the foot of Snowdon, soaked through, tired and aching, but having completed the Ben Nevis summit.

56 www.iasupport.org IA JOURNAL SUMMER 2008 Passage to India

Sue Blackwell Secretary - South East London & West Kent IA one by the time I came home! Agra was only just under three hours away by train, and we spent the journey trying to explain to the carriage attendant in pidgin English that we couldn’t ring our doctor and get a prescription for tablets for his sick mother...

Passage to India Agra is of course home to the Taj Mahal, and our room at the hotel looked out towards the Taj in the distance. The Taj Mahal is well Do you really think someone like you out to my friend would arrive in time, and worth seeing, nothing quite prepares you for should go somewhere like that? This sent via the ‘diplomatic bag’ no less which Traffic in Old Delhi. seeing it up close, and it really is a was the overwhelming response when I gave me more space in my suitcase for the remarkable building. Even though we were in told people I was planning on going to essentials - shoes and clothes! We set off brake lights seem to be in short supply, so a five-star hotel, it did suffer from frequent India for a holiday. from Gatwick for the long schlep to India sounding the horn is the way to let other electricity blackouts, and a lack of water in and touched down in New Delhi at 3.30 the road users know you are there. One of our the toilets every afternoon. I discovered this ‘Someone like me’ - slightly crazy, prone to next morning. drivers told us that to drive in India you by accident after emptying a very full bag doing things on a whim? - no, they meant need good nerves, good eyes, good luck and then realising that the toilet wouldn’t someone with a stoma! There’s an It was our first introduction to India - no air and a good horn! unwritten assumption that if you go to India con, total disarray due to rebuilding, toilets you are going to eat or drink something iffy that were best left alone, and people After doing some of the tourist sights in and get very sick - the ubiquitous ‘Delhi everywhere. We spent the first three days Delhi we set off for New Delhi station and belly’ - but I figured that I at least wasn’t in Delhi. We did try and walk on the first the train to Agra. New Delhi station going to have to sit on a manky toilet, day - big mistake! Not only was it very hot, was...‘different’! There were people unlike my travelling companion who didn’t but were there no pavements, and we were everywhere, sleeping and sitting on the have the convenience of being colonically followed every step of the way by drivers platforms, selling food and drink, and piles challenged! offering to take us to all manner of places of luggage and packages upon packages for ‘only 10 rupees’. We soon decided to tied up in hessian - it really was like The only time I really thought that India stick to hiring cars. This was also a something out of a film. When we was somewhere I shouldn’t go was when I cunning plan to avoid having to brave an eventually found the correct platform, after started to look for a quote for travel Indian toilet (I’m adventurous, but not that shoving numerous 10 rupee notes into The Taj Mahal. insurance. I used the list on the IA website, adventurous!). I’m lucky and can go four helpful hands, we found that the Indian but some companies wanted over £400, hours or more without needing to empty railway system is really quite organised. flush...disaster. I have to say the wee which was almost as much as my flight - my bag, so I could spend the morning Having booked and paid for our tickets housekeeping men were very kind, and had for £400 I would have made sure I did end sightseeing and have the car deliver me over the internet (a very frustrating, but been in and flushed it for me when the water up in hospital just to get my monies worth! back to the hotel in time to empty. real, introduction to India), our names were came back on - that is what I call service. Happily, Direct Line was much more listed on the passenger list pinned up on helpful and only charged me £69 - a Old Delhi has to be seen to be believed: the outside of the train carriage. Indian After Agra we had to go back to Delhi to bargain. teeming masses of people struggling for train stations are deadly if you can’t carry catch the train down to Hyderabad. We road space with two-wheelers, autos, cycle your suitcase up and down mountains of booked the Rajdahni Bangalore Express So after months of planning, and two rickshaws, and the ubiquitous cows. Noise stairs - if I didn’t have a parastomal hernia which took just over 22 hours. The train weeks hoping that the spare bags I’d sent in India is everywhere, indicators and before I went, I certainly would have had was late leaving Delhi and both my friend

58 www.iasupport.org 59 Passage to India Passage to India

safely ensconced in 1AC, in a two berth have a tendency to get dehydrated supplies ‘just in case’. Even spending a compartment complete with carpet, and a anyway, so not being able to drink day at the Wild Wadi Water park wasn’t a man came in after every meal to sweep the anything in public during daylight hours problem - my bag was flapping about in floor. Luckily they had both Indian and was really difficult. Dubai was the only the water for all to see, but I was having far Western style toilets, although trying to place where I had a problem with my too good a time to care. balance and aim down the hole (while stoma - drinking so much fluid back in the watching the tracks whiz past underneath) hotel in one go meant that it leaked, twice So is India somewhere someone like me took a bit of practice - the ‘flush’ was a in one night, but my friend and I decided (and you) should go? A resounding “Yes!”. mere trickle so a good aim was vital! Food that the stains on the bed looked more like Ok, we didn’t rough it - five-star hotels are is included in the ticket price (only £41 to coffee so I was terrible and just went out so much more civilised, but we ate and travel some 1600 kilometres) and I have to and left it! As you can tell, I’m not one of drank at all sorts of places and had no Sue en route to Agra. say I did worry a bit about how safe it was, those people who carries a bed sheet problems. I had no problems with security especially when the meat turned out to be around with me - if it leaks, it leaks, and at the airports - who cares who sees your and I needed the toilet. Unfortunately she chicken on both days. But I figured - ‘what who really cares? The chambermaids have spare bags, will you ever see those people needed to wee so she had to brave the the hell, eat it and see what happens’ - and seen worse I’m sure, atlhough I did cross again? And shock horror, I didn’t even take station toilet - I think she is still recovering of course nothing happened, it was my fingers and pray that it didn’t happen a travel certificate with me! Having a stoma from that experience. On the other hand, I delicious. While on the train I missed a again as I was down to my last base-plate. shouldn’t stop you travelling anywhere you could wait until the train came in before I South East London & West Kent committee As you’ve probably guessed by now, I want to go, and I for one can’t wait to book emptied my bag (by now full to bursting), meeting, but I think I was excused.... well, I don’t believe in taking half a ton of extra my next holiday. down the loo straight onto the tracks at did work my holiday out so that I would be Nizamuddin Station (oops!). We were back for our October meeting - now that is dedication to IA!

Hyderabad was such a change to Delhi and Agra, the climate is much more bearable, and there were fewer cows on the streets, although we did see a chopped up camel, complete with head, for sale outside a butchers shop. After Hyderabad we travelled on the overnight train to stay with my friend in Bangalore for a week. Bangalore is the IT capital of India and is far more westernised than any other city. We had a lovely time, eating out in ﬁve-star hotels and restaurants, going to the beauty salon, shopping, and being driven everywhere by her driver.

On the way back to the UK we stopped for four nights in Dubai. It was during Ramadan, which is not the ideal time of year to visit. It was 40°C every day and I

60 www.iasupport.org 61 IA JOURNAL SUMMER 2008 Dear Editor

Dear Editor have had what I would classify as three partner and Dad are in bed and I have my very nasty blockages in that time, two of ‘afternoon nap’ at about 9pm! which have resulted in me being hospitalised. The last one, only a couple Thank you for listening to me on the above - of months ago, was the worst of all, and this is the ﬁrst time I have written in. it felt as if my intestine was about to Although I can talk reasonably well to people Letters should be addressed to the Editor, IA Journal, PO Box 22, Great Yarmouth, explode, feeling as hard as a cricket about being an ostomate and be upbeat NR31 6WA, to reach him no later than the date shown on page four (or e-mail to ball, with only morphine giving me any about my situation, I still have trouble coming [email protected]). The editor is not responsible for opinions expressed or advice respite from the pain. The blockage to terms with the change to my body form, offered in the letters. If a nom de plume is used, the name and address of the writer must lasted for some 18 hours, and had to be (albeit that I have gone down a dress size be supplied. As space is limited within the Journal, the editor may condense letters, very painfully internally manipulated since my operations!). My partner is not although every effort will be made to retain the meaning and tone of the original. which did free it up eventually. I was concerned about this, but I continue to be - I warned of possible surgery, as the don’t know how I get over this. blockage could have been due to adhesions. I was on a fluid drip for some Mrs. Kath Robertson 36 hours. 147A Wetherby Road Terry Gallagher likely to be due to adhesions. Obstructions Harrogate email: [email protected] due to these can happen at any time and Again, like Mr Grace, I really could not put North Yorks are nothing to do with anything we it down to what I had eaten, although with HG2 7AA In issue 199 (Spring 2008), Peter Grace ourselves have done or eaten. the last main meal having been pork, I writes that he gets blockages and is often haven’t touched it again since! Are there any members of IA who have unable to trace it back to something he has Interestingly, if you have had internal pouch experienced a very dry condition with the eaten. Peter, and I suspect many other IA surgery (and I think the designations of For others who have suffered likewise in ‘adhesive’ on their ileostomy bags? members, is unaware, obviously, that food- ‘internal pouch’ and ‘external pouch’ are this respect, I wonder if they were advised related blockages only make up 10% of the less confusing than using ‘pouch’ for both), by their surgeon of blockages being a I have used the same product for the past total number of blockages. The other 90% you can still get adhesion-related blockages ‘regular’ occurrence? eight years without any problems but a are due to adhesion-related obstruction and from the adhesions from all your surgeries. couple of months ago, whilst changing the are therefore completely unrelated to Those with an internal pouch are, in fact, I also read Penny Stevens’ letter with bag, I was startled to ﬁnd this area anything Peter, or anyone else experiencing more likely to suffer from these because of interest regarding tiredness - I thought it completely devoid of adhesive, and the area the same problem, has eaten. the extra surgeries required. was just me being unable to sleep closely around the stoma disintegrated. properly at night - visiting the bathroom to The problem is that adhesions form Elaine Bryant empty my bag being a frequent feature as I have seen my stoma care nurse but she whenever abdominal surgery has been email: [email protected] well, no matter what precautions I take. I has been unable to say why this has undertaken, and some people get more also suffer with primary sclerosing happened. I’ve tried other bags but the than others. These adhesions, scar tissue, I read with interest the letter from Peter cholongitis (PSC) - relating to the ducts in dryness and disintegration of the vital area join parts together which should be free to Grace in Issue 199 regarding blockages. I the liver - brought on by my ulcerative move, and so cause kinking or twisting in too suffer from these (and as I have come colitis, which also adds to my tiredness the ileum, leading to obstruction. to realise now, so do others) but cannot factor. My only solution at the moment, as The next edition cope in the same way as Mr Grace. my life is pretty hectic, in looking after a IA Journal 201 (Autumn 2008) will be published So if any of you get an obstruction, don’t home, a 91 year-old father, and frequently on 1st September 2008. Final date for editorial waste time trying to remember what you I have been an ostomate for three years, two grandchildren, is to work through it. contribution to be received is 4th July 2008. ate that may have caused it - it is far more and now have a permanent ileostomy. I But oh, the delight of an evening when my

62 www.iasupport.org 63 Dear Editor Dear Editor

around the stoma are still there, albeit to a then in my mid-sixties but luckily I was Despite all the above minor problems, I am drinks, and Forceval multivitamins, things lesser degree with some of the samples I told I could have an internal pouch, so told that I look very well by people who eventually improved. have tried. after several more operations I got rid of know me, and I consider myself very lucky the stoma and settled down with my compared to many other sufferers with The following five years were dotted with My ileostomy became 50 years old in May, internal pouch. digestive complaints. flare-ups around stressful times (e.g. the so I am wondering if it might be my skin in days leading up to my wedding day), and that area ‘objecting’ to being covered with In a previous IA Journal, people’s Emma O’Brien often according to the seasons (Autumn & adhesives for the past 50 years! experiences with an internal pouch were Owenreagh Cottage, Winter being the worst of times). However, requested by Rachel Hayward (IA Internal Magheramore Road, for almost two years I enjoyed excellent I would appreciate any views or comments Pouch Group), so here are mine : Dungiven health whilst living a highly-challenging from IA members, particularly those who BT47 4SP management consultant job in London. I have stomas of long duration. Straight after the final operation, I email: [email protected] was beginning to think the doctors had got suffered with dreadful irritation of the it wrong, that I didn’t have UC at all, and had Thank you to all the good people involved anus to the point where I was in tears. Ulcerative Colitis (UC) was diagnosed for just been unlucky for a time. Then the in producing our IA Journal - I read it from Using various creams didn’t help me but me at 27 when in Australia in 2000. The highly-challenging became highly-stressful cover to cover, especially the readers’ taking codeine helped me to cope. I then specialist who diagnosed it had quite and I thought an ‘escape to the country’ (i.e. letters! wondered if I could be suffering from interesting suggestions as to why I had back home!) would bring good health and it candida and took steps to try and cure been such afflicted, including ‘catching’ it did for a time. When holidaying in Brazil Barbara Miles this. As time went by I gradually had less from one of the many flatmates I had who however, things completely broke down and Devon irritation, although like most internal suffered UC or Crohn’s disease, and/or I knew that my colon wasn’t coming back pouch patients I still have problems with the build-up of adrenalin as a result of from this flare-up. Upon my return to Ireland In reply to Dennis Bell’s letter (J.194), I, like it and also soreness. My control of the retiring from competitive swimming in April 2006, I had no choice but to have his wife, had a rapid onset of ulcerative bowel has always been good, only (another thing in common with same my colon removed a few weeks later. colitis (UC). having had three or four accidents, and I flatmates!). think in those cases there was a bug Recovery was swift - I had a new lease of My symptoms started whilst on holiday in going around that I had caught. I returned home to Ireland two years later life, I wondered why I hadn’t had the France, and on returning to the UK I went in the grips of the ‘mother-of-all flare-ups’ surgery years previously, and I returned to to see my doctor who said I might be I eat very little dairy produce and am during which I experienced secondary work with only slight dehydration and having problems with haemorrhoids. As careful with my fat intake. All meat and arthritis, anterior uveitis, erythema minor blockages. Seven months later, a my symptoms got worse, I went back to vegetables have to be very tender nodosum, secondary vasculitis, and single-banded adhesion caused the last him and after examining me he referred me otherwise I have a pain in my right side as mouth ulcers. This culminated in an metre of my small bowel to become to the hospital. The surgeon there told me I the food goes through. I do not eat salads episode of viral encephalitis during which necrotic and it had to be removed. This had severe proctitis and took a biopsy to or nuts. If I drink alcohol on an empty I was fortunate enough to be given the surgery proved to be harder to deal with, see if I had cancer. Luckily I did not. Then I stomach I have to rush to the loo. I last ICU bed in Northern Ireland during probably because of the shock of it, and saw a doctor who gave me suppositories sometimes feel very cold but this Christmas 2001, and the last rites. whilst I knew I was lucky to be alive, severe and medication. sensation passes quickly. I occasionally Thankfully, despite the doctors informing dehydration, major blockages and cough when an acid taste comes into my me of the possibility that I had Behcet’s restricted mobility still often plague me. My Unfortunately I was not getting any better, mouth - reflux I suppose. The only other Syndrome, the prognosis was good and attempts to go back to work failed and I and eventually I was taken by ambulance things I have had are very slight rheumatic with prolonged corticosteroid treatment became very down. My husband and to hospital and given an emergency pains - I know this could be to do with along with Colazide (Asacol & Pentase family helped me with the ‘Emma Get Well operation, when my colon was removed. aging but it is also connected with UC having not been effective), and a diet Programme’ (EGWP), and I began to feel A few days later I was told it was UC. I was sufferers. consisting of plain food, Elemental 028 much better.

64 www.iasupport.org 65 Dear Editor

Last Christmas, the excruciating pain from Services (many still know Aviva as Norwich what I thought was another banded Union!). adhesion turned out to be the result of an ectopic pregnancy. I had to have open Norwich Union runs a scheme called surgery to remove the pregnancy and tube Volunteer Plus. As an employee, if you do and I was completely devastated, mainly voluntary work in your own time for your as a result of not even knowing I was local community, you can submit an pregnant and desperately wanting to be. application to Norwich Union under this Doctors told me that the fact that I had had scheme, provided you meet certain two previous abdominal surgeries put me criteria (such as a minimum number of at a higher risk of this happening. By volunteer hours worked per month). If chance, whilst in hospital, I was fortunate your application is successful, you are to meet ladies who had close friends and awarded money for that work in family members with stomas and who had recognition of your commitment to the very positive experiences following their local community through your volunteer ectopic pregnancy. This has helped in work. The money is payable to the coming to terms with what has happened, organisation you volunteer for. In my case, and I would be very grateful to hear from that’s Norfolk & Suffolk IA, and this year I others who have had similar experiences. was awarded a cheque for £315 payable to my local IA which will help us support Lisa Cooke our members. Via email If you work for Norwich Union, or you work for an employer that runs a similar scheme, ﬁll in those application forms. If you don’t try, you don’t get, and every little helps (as some well known brand says!) - but it’s true.

Angela Bamber Via email

I’ve had an ileostomy for over ten years, As a committee member of Norfolk & and am also wheelchair dependent. It’s Suffolk IA, I put in a number of hours of my coming up to my 50th birthday, and I own time in support of IA, and I very much decided that all things considered, I’ve enjoy this voluntary work. had, and continue to have, a very good life.

My full time job however, is as a Deputy Hence I wanted to mark my half century in Support Services Manager for Aviva Legal a special way, so I’m undertaking a

66 www.iasupport.org Dear Editor Dear Editor

‘Tandem Skydive’ on June 8th. I’m raising bonus that has come out of my doing this Arlene Colwell remission, for the British Digestive sponsorship money to go towards the skydive. email: [email protected] Foundation. British Heart Foundation as so many of my family have been affected by and died of I’d be extremely grateful if you would put France calling - Bonjour! Late 2005 and early 2006 was a bad time heart disease. I wish I could divide the some information about my skydive in the with my UC, and after a colonoscopy I sponsorship between all the charities that I IA Journal, along with the sponsorship Since my article “Opportunity Knocked “ was asked to consider surgery. I feel a link to, but alas, that is not possible. address, as I’m trying to raise £5000 and appeared in the Winter 2007 IA Journal, I eventually had a total colectomy in have a long way to go! have had another ex-pat ileostomist in August 2006. I can’t praise my surgeon, There is a sponsorship form for my skydive France contact me. It made me wonder if stoma nurses, and hospital staff enough that people can contribute to on-line, and John Chatwin indeed there are any more ileostomists for the treatment I received at the hence I was wondering if you’d be email: [email protected] who subscribe to, and maintain close links Countess of Chester Hospital. I have prepared to put a note about this venture with, IA in the UK and receive the Journal, gradually built myself up and I am of mine into the IA Journal? Maybe it would For 35 years, until earlier this year, I had but at the same time use the French planning to run the New York Marathon encourage others to see that life needn’t been able to use ether solvent to remove healthcare system as a resident out here, next November. I would like to run to stop if you have an ileostomy. karaya gum from my good old-fashioned and perhaps even have joined the French support IA and to maybe inspire others rubber bags for re-use, and to take the patient associations and go to their AGMs. to show you can get back to a healthy If you look at my web page, you’ll find a gum away from the stoma area. So, my question is simply, “is anybody out lifestyle, given time. photo of me there, along with all the dates. there?” The link to my web site can be found here Now, just because some idiots have Clive Curteis, www.justgiving.com/Aberration. The online decided to sniff the stuff, Brussels, in its France is of course a huge country, but I email: [email protected] sponsorship page will be staying open wisdom, has decided that it is far too thought it might be useful to have a point of until August. dangerous a substance for us plebs to contact for any eventuality, and even My stoma has very little projection and I use, so, hey ho, we’re denied it without exchange useful information and support am leaking from time to time. Having contacted the stoma appliance anyone checking why it was so important each other if necessary. What do you makers, I’ve been advised to protect my to responsible people like us in the first think? I live in the Lot region and my e-mail Before I approach my doctor about having stoma with a cap, but otherwise all the place! address is shown above. it altered to project further, has any reader pouches, flange, etc. should be fine. If they had this operation who could tell me what can withstand such pressures, then they I have, of course, tried a number of Vincent Cummins their experience was? must be able to withstand virtually solvents from different suppliers, but 32 Lambshear Lane anything! removal from rubber does seem to Lydiate Miss A. Jenvey present particular problems, and indeed Liverpool (Member of Hants & IOW IA) By coincidence, when I registered to do some of these, and acetone, seem to L31 2LA this skydive, I needed to get a form signed attack the rubber itself. I had my ileostomy formed in January by my GP. To cut a long story short, the GP I was diagnosed with ulcerative colitis (UC) 2005. My stoma care nurse at the Queen found out that I’m suffering from If there are any dinosaurs reading this back in 1993 and it took me two years to Alexandra Hospital in Cosham was hypothyroidism, and has started me on who still use this unfashionable get back to something like normality. wonderful, and the other members of the treatment. I’m greatly relieved as I’d been equipment (which does stay on for up to a stoma care department there have also feeling extremely tired and my memory week!) I’d be very interested to know if Then I was made redundant after twenty been really helpful to me. was getting terrible, but it had never they’ve any ideas, or, if in the same years with the same company. After occurred to me to go to the GP; I’d just position as me, would they like to numerous jobs, some of which I had to I attended my first local IA Annual General assumed it was all part of the ageing exchange electronic mail addresses to give up because of flare-ups, I managed to Meeting which was held at the Holiday Inn process. So, in a way, there’s an added share information on products. do the London Marathon whilst in in Tichfield, and which I think was a

68 www.iasupport.org 69 Dear Editor

resounding success. I found the talk by wake before the bag is full, but I wondered the nurse (who had travelled all the way if there was a way I could reduce the from Hereford) interesting and informative output at night since I am beginning to feel - it seemed everyone who was present exhausted. I have tried Imodium at the was listening attentively, especially when standard dose, but have not found it the question of company remuneration helpful. came up. I would be very grateful for any advice I met the divisional secretary (Nick Moon) fellow ostomates might be able to provide for the first time, who was ebullient and to me with at the following email address: friendly. I also caught a few words with [email protected]. people I hadn’t seen for a while, and met the representatives from Salts who were Eileen Lawlor nice and helpful. 10 Ellesmere Court Bundoran Needless to say it was a busy few hours. Co. Donegal Towards the latter part of the meeting, Ireland there was a raffle which I had entered albeit with meagre offerings. But the prizes I would like to express my thanks to the were lovely and to my surprise I won one. three ostomates who replied to my letter in the Winter Journal (J.198). All in all, the 2008 AGM was an enjoyable time, and I felt privileged to be part of the The tips they gave me worked very well for support network that IA offers. It was nice ballooning and odour. I now release the for me to feel the support of other top of the pouch from the flange just a tiny members who had had similar experiences bit to empty the pouch of wind, and I am of stoma surgery, and to share what using Dansac Nodor S, an odour happened to me in surgery, both neutralizer - 10 drops into the pouch to downsides and upsides. deal with odour. Also, I was subconsciously blind to the fact that some Thanks to everyone who was there - it was foods cause gas and I was eating all of great to meet you all. these, particularly salads, eggs and fish, and so I’m trying to modify my diet. Roseann Kealy Via email On a lighter note, recently I have been having weird dreams. When in ‘rem’ I had a loop ileostomy in December 2006. (rapid eye movement) sleep, I get this Since then I have not had a decent night’s overwhelming urge to pass wind and no sleep. matter how I try it doesn’t happen. Then I wake up and realize that my rectum was I empty my bag at least three times a night. stitched up two years ago - is this ‘the Admittedly I am a very light sleeper so I phantom of the oh-phart-ha’?

70 www.iasupport.org Dear Editor Dear Editor

Peter Machin Once more, thank you all very much. page 74 in which I offered to send a copy ileostomy. In addition, it is important to 56 Sussex Drive of the ‘good’ foods that I can eat and the maintain a nutritious diet, in view of Walderslade (editor’s note - may I also add my own ‘bad’ foods that I cannot. bones and immune systems, so I am Kent thanks to all contributors - please keep feeling somewhat overwhelmed with ME5 0NP them coming in!). Many members responded via my email complicated information. address which was also published at that Thank you for the IA Journal. I really find it Betty McNeil time, but for the benefit of those without I wondered if anyone has both these a good read. 117 Primrose Avenue email, I will welcome any further problems and could help in any way, and Rosyth correspondence by letter to my postal advise me on diet, etc.? A reply via the IA I have had my ileostomy for 48 years and I Fife address above. Journal (which incidentally is a life-saver!), know from experience that any sport, KY11 2TX or direct by email - activity, or career is possible. I would like to email: [email protected] Edna Podmore [email protected] - would be thank and congratulate all the writers of 6 Woodland Rise much appreciated. letters and the editor for the excellent I have been an ileostomist for two years Sutton Coldfield selection of the same - they are so now and enjoy receiving my IA Journals. I West Midlands Alison Wood informative and entertaining. find the letters very interesting. B73 6EL 29 St. Buryan Crescent Cheviot View Estate In the last Journal (J.199) there was a I am surprised when I read of the problems At the age of 32 years, I was given a Newcastle upon Tyne gentleman who informed everyone that he ostomists have with residual rectal stumps. colostomy, due to cancer of the bowel. For NE5 3XF went to the loo four times a day - now you Can anyone explain why some ostomists 31 years I used an irrigation system, which wouldn’t see that in ‘Town & Country’ have this removed and some still have their meant that I did not have to wear an I wonder if anyone with Crohn’s disease magazine! Another contributor stated that rectal stump after six or seven years, appliance, and was relatively free to enjoy (CD) suffers with acne or similar skin he went into a sex shop to purchase an causing them problems? a ‘normal’ life. condition? anal vibrator (as a substitute for the hard plastic dilator the hospital provided for his I had my residual rectal stump removed Two years ago, following a colonoscopy, it I’m aged 27 and have had CD and an J-Pouch) - fancy dropping that into two years after my ileostomy, but found was discovered that there was further ileostomy for eight years. Generally my CD conversation on a social evening. Then no information about this procedure in damage to my colon and a decision was is controlled except for a bad few months there was the young man who goes any IA Journal. I feel it would have taken to remove it completely, and perform last year, but I find if I have a sensitive behind a bush when out walking to empty helped me if I could have read about an ileostomy. stomach for a day the acne on my face and his bag - I immediately thought of him what this operation entailed before my back really flares up. walking in the Sahara Desert and saying surgery. This has taken a lot of adjusting to in to his guide, “Sod the Pyramids - find me terms of diet and body image, and I was I don’t want to take medication for my a bush”. Penny Stevens just feeling comparatively secure again skin and risk a flare up of CD in the Fern Spring when I started to have problems with stomach - I prefer to control it with I am not in any way being derogatory or Fernhill Drive indigestion, stomach cramps and cream, but wonder if anyone else has making fun of anybody - I just think that all Farnham nausea. After a blood test, etc., I was had similar experience? I find that both your contributors are fantastic. Becoming Surrey diagnosed as a coeliac, and I am the acne and tiredness are the most an ostomist has not only changed our lives GU9 0HR therefore unable to have gluten, wheat, frustrating to deal with. physically, but also mentally. We now email: [email protected] or milk and milk products. This, again, is openly discuss things that were previously going to take a lot of adjusting to, as Is there a connection between CD and taboo, and humour is always the best In the previous issue of the Journal (Spring many gluten free products are fibre rich acne or skin conditions? I would like to medicine. 2008 - no.199) I had a letter published on which of course does not suit the hear from people with similar complaints.

72 www.iasupport.org 73 Dear Editor

Keith Woan Central & North Lancashire”. As the Secretary - IA Central & North Lancaster branch also had many Lancashire members in in Cumbria, the geographical area, from being a small local area based At our AGM last March, our secretary of 35 on Preston, was dramatically enlarged - years, Mary Hogarth, retired from ofﬁce the membership too - but Mary took it all and I was elected as her successor. A brief in her stride. To add to her workload, she history of Mary’s involvement with IA is as also accepted the position of Chair and follows: for the past 14 years has acted in both capacities.

In the past 35 years Mary has befriended and counselled many people and her phone line was always open for anyone to discuss their worries or problems, or just to have a friendly chat. Having just celebrated her 85th birthday, Mary decided it was time to ‘drop down a gear’ so has handed over the secretary’s reins although she has expressed a wish to continue in her role of Chair.

In the photo, Mary is pictured receiving her honorary membership certificate from Mr. M. M. Mughal, ChM, FRCS, President of IA Central & North Lancashire. Besides her Mary, as she preferred to be known, had certificate, Mary also received a gift of a her ileostomy formed in 1965 and in March cut glass crystal vase and a large bouquet 1966 joined the nearest branch of IA, of flowers. which at that time was Manchester. Valerie Wicks As the number of local people with 8 Barnes Wallis Close ileostomies increased it was, in February Chickerell 1973, that the Preston branch of IA was Weymouth formed as a sub-division of Manchester Dorset and Mary took up her post as secretary - a email: [email protected] position she has held ever since, a total of 35 years. What a lovely tribute to the life and work of Joyce Parsons (IA Journal Spring 2008, When changes were introduced by the page 36). Charity Commissioners in 1994, Preston amalgamated with Lancaster to form a I first met Joyce as a student nurse in charity in its own right known as “IA 1962. She came to our training school at

74 www.iasupport.org IA/06/2008 Dear Editor Out and About

Harold Wood Hospital and talked to us support. I recently met up with Joyce as Out and About about her ileostomy, and also showed she was in the same residential care us her stoma. I then worked alongside home as my mother, and it was a her when I was a staff nurse on the pleasure to be able chat to her. surgical wards - she taught me so much and was always available if we had a A truly remarkable lady who I will always National Council 2008 problem, or if a patient needed help at remember. home. Members of North East IA Barbara Markham waiting to welcome Sometimes we would end up in Visiting co-ordinator - Humberside IA delegates at National occupational therapy with a sewing Council 2008 in Newcastle machine adjusting clothing for a patient to It is with great sorrow that we have to on March 29th and 30th. accommodate their appliance. This was in report the death of Fred Knapp on 25th the days before the stoma care nurse January. Photograph from: when we were allowed to give complete Roy Savin, Stourbridge IA. care to our patients! He had been our treasurer for sixteen years and was made an honorary member Little did I know that I would then when he retired two years ago but develop problems myself and become a remained a committee member. At our patient of Mr John Talbot at Harold committee meetings and our Annual Wood Hospital. In 1977 I was diagnosed General Meeting he presented and IOA Award with Crohn’s disease and underwent a explained the ﬁnancial statements and total colectomy with ileo-rectal would always give his considered opinion At the International Ostomy Association anastomosis, a relatively new procedure on matters that arose. Congress in Puerto Rico in August 2007, then. Joyce was there and gave me so the Coloplast Merit Awards for World much support. This helped me for 18 Lilian and Fred helped at meetings and Ostomy Day entrants were announced. A years and I met up with Joyce a few supported social events such as the coach special award was given to Sligo General times at hospital reunions. outings and visits to the mini-cinema. Fred Hospital where a multi-disciplinary team arranged the evening meals and helped to worked in partnership to promote Healthy I started having more problems and provide the entertainment at the Christmas Bowel Week by organising a week-long surgery, and eventually was referred to parties. series of events for patients, staff and the St Marks and had an ileostomy in 1997. public in the main foyer of the hospital. Once home, I met up with Joyce again Our thanks are due to Fred for his service and went to visit her a few times - she to Humberside IA over a long period and The event was advertised widely via gave me so much encouragement and our heartfelt condolences go to Lilian who, posters, e-mail, the media, shopping Anne Demick (centre) can be seen here we are pleased to hear, will continue to centres, health centres and hospitals. The presenting the award to Dolores Kivlehan take part in our meetings. team included stoma care services, (right - health promotion) and Susan The IA Journal is available on tape gastroenterology, nutrition & dietetics, Moore (left - stoma care nurse specialist) free of charge for visually impaired People will remember the big man with oncology, ostomates and ostomy support at Sligo General Hospital. The IOA team members. For more details contact the big smile at the entrance to groups, the Irish Cancer Society, quality & judging the awards recognised the creative the Journal Editor. members’ meetings - he will be sadly health promotion, general surgery, team work and innovative actions that missed. paediatrics and local schools. made this such a successful event.

76 www.iasupport.org 77 IA JOURNAL SUMMER 2008 Out and About

Devon IA Norfolk & Suffolk IA

Sid Brissenden (left - chairman of Devon Under IA’s matched funding scheme, IA), Yvonne Evans (centre - senior stoma Norfolk & Suffolk IA purchased 15 Valley nurse, Royal Devon & Exeter Hospital), cushions for patients’ use and distributed and Ian Daniels (right - consultant these between East Anglian hospitals at colorectal surgeon and honorary Norwich, Cambridge, Ipswich, Kings Lynn, President of Devon IA) are seen receiving Bury St. Edmunds and Gorleston. Each a gift of a noticeboard from Devon IA. It individual cushion was inscribed with the was paid for under the matched funding IA logo and the group’s name, as can be scheme, and will be used to highlight seen in the photos. local meetings, and the research work led by Mr Daniels in colorectal surgery. Pat Allington (second from right) presenting cushions to nurses at Heath Road Hospital, Ipswich.

Dumfries & Galloway IA

At this year’s National Council, Derek Oliphant Advertisers’ Index (right) and John Scoular (left) made a Page No. Company Freephone No. presentation to David Eades (centre) on behalf 39 Arelle Products 0800 3893597 of Dumfries & Galloway IA. This was our way of 15 B Braun 0800 163007 saying thank you for all his help over the years. 3 Brunlea Surgical Supplies 0800 834712 The gift was rather special, being a bottle of 25 Bullen Healthcare 0800 888501 57 Charter Healthcare 0800 132787 malt whisky with a label which read the “Eades 33 CliniMed 0800 0360100 Malt”. It also had “David” in bold letters so that 5 Coloplast 0800 220622 no one else could claim it! Tracy Woods (centre) presenting cushions to nurses at the 80 + 1 Insert ConvaTec 0800 282254 Queen Elizabeth Hospital, Kings Lynn 52, 60 CoverCare 19 Cuiwear 0800 2792050 South East London & West Kent IA Insert x1 Dansac 0800 581117 53 Fittleworth 0800 378846 Three members of our committee stood 17 Kingston Trust down at our AGM recently after almost 70 11 Linda Butler years between them. Pictured (left to right) 13, 71 Oakmed 0800 592786 are Pam Thompson (retiring chairman, and 31 + 2 Inserts Opus Healthcare former local secretary) Ken Holdaway 67 OstoMART 0800 220300 (retiring former treasurer), and Audrey 9 Pelican Healthcare 0800 0527471 Walker (retiring committee member). 20, 21, 40, 41 Salts 0800 626388 45 SASH 0800 3893111 29 Stoma Services 0800 1693807 2, 75 UCI 0800 7314376 John Smail (second left) presenting cushions to nurses at the 51 White Rose Collection James Paget Hospital, Gorleston.

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