The pros and cons of having an ileoanal pouch … page 5
Advice on benefits claims for ostomists … page 12
Issue 34 Winter 2009/10
10 • Practical guidance • Clinical advice • Editor’s expertise • Straight talking • Medical updates
Charter • Readers’ letters • Emotional support •Terms explained • Real-life stories • Helpful resources
Sexuality and your stoma Maintaining your self-confidence
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Visit www.charterhealthcare.co.uk to place prescription orders, request free samples and to find out more about Charter Healthcare service. Bags can be cut to the size of the stoma. Each delivery includes a choice of complimentary items to make life that little bit easier, including: wet wipes, dry wipes, water spray and disposal bags. Discreet, unbranded delivery, made within 24-48 hours of ordering.
www.charterhealthcare.co.uk or call us on 0800 132 787 Charter Healthcare, Nene Hall, Peterborough PE2 6FX
Coloplast develops products and services that make life easier for people with very personal and private medical conditions. Working closely with the people who use our products, we create solutions that are sensitive to their special needs. We call this intimate healthcare. Our business includes ostomy care, urology and continence care and wound and skin care. We operate globally and employ more than 7,000 people.
Coloplast Ltd First Floor, Nene Hall, Peterborough Business Park, Lynchwood, Peterborough, PE2 6FX www.coloplast.com
Anniversaries all round 5
Straight talking Having a pouch – pros and cons by Zarah Perry-Woodford
Emotional support Sexuality and stomas by Tim Norton Survey
10 What you said about CSC Coloplast 11 Celebrating ten years of Charter stoma care Lifestyle 12 Further advice on claiming benefits as an ostomist by Karen Booth Medical update 13 A new feature – bringing you the latest research findings by Charles Knowles 14 Resources Forum 15 Your questions answered
Cover photo: RYAN MCVAY
CHARTER STOMA CARE ISSUE 34
We’ve just commemorated 40 years since the lunar landing. I was a teenager then and vividly remember how we were glued to the television watching every aspect of the journey. How it would all happen was explained to us through simulations; often better than the real thing, as the pictures were so fuzzy, especially on our old black and white TV set. It was, we thought, the start of a new dawn in space travel; only a matter of time before we’d all be booking trips to the moon. Little did we know that the generation coming behind would never witness a lunar landing. Even less did we think that one day we would have more computer power in our mobile phones than the computer that was integral to the Apollo mission, but it did coin the phrase used by so many people in times of frustration with inanimate objects: ‘If they can put a man on the moon surely they can devise a better ...’
Fixing problems with stoma appliances I often think of this with stoma appliances and I know many of you must do the same as we get many letters with suggestions of how you think appliances could be improved. I was lucky enough, several years ago, to participate in a product development group. A number of experienced stoma care nurses were asked for input into the production of new products from ideas through to testing prototypes. During the ideas generation element we were encouraged to let our imaginations run wild; ‘nothing is impossible,’ we were told, and we came up with all sorts of ideas, which the boffins then went away to consider and see which elements were feasible. Feasibility, of course, is not the same as possibility. While the engineers were confident that they could produce a bag that didn’t leak, a bag that didn’t make skin sore, a bag that was discreet and a bag which didn’t allow ballooning or pancaking, putting all those elements into one appliance that is also affordable is a lot harder, and they have to work on appliances that tick most of the boxes most of time. Forty years ago a stoma would be likely to need an appliance made of rubber that required washing, and managing your sore skin would be the norm. We have Continued overleaf 3
come a long way and there are products available now for many specific problems. Special adhesive doesn’t deteriorate in the presence of urine, giving urostomists more security. Vastly improved charcoal filters are effective against ballooning (although I still think pancaking can be a major irritation for many colostomists). Two-piece bags are far more flexible and easier to use and many drainable appliances now use a Velcro-style closure, a vast improvement on bulky plastic clips. Convex products have been another valuable addition to a range of products for what stoma care nurses would call ‘problem’ stomas. We have come a long way since we landed a man on the moon and many developments are a direct result of the research undertaken by NASA. It still leaves us frustrated, though, when simple things still seem beyond us. For me it will continue to be pancaking. Whenever I come across a patient for whom all the known preventive actions still don’t work, I’ll be muttering under my breath, ‘If we can put a man on the moon, surely we can prevent pancaking!’ I wonder what your particular gripe is?
The anniversary of Charter stoma care
stoma care Publication of Charter stoma care is made possible through the support of Coloplast Limited. Editor Tina Lightfoot RGN MSc Lead Specialist Nurse for Gastrointestinal Services (Surgery), Countess of Chester NHS Foundation Trust, Chester Editorial Board Anne Demick National Secretary, IA, Ballyclare Helen R Dorrance MBChB(Ed) FRCS (Gen Surg) Consultant Colorectal Surgeon, Victoria Infirmary, Glasgow
Speaking of anniversaries, Charter stoma care is celebrating its tenth birthday. Some of you may remember the first edition of this journal. I know that as professionals we couldn't get enough of them to give to our patients. The original format was a success and has changed little over the years. To celebrate our birthday, the Editorial Board have been looking back at the early issues and have decided to reprint some outstanding articles. These have stood the test of time and deserve another airing for our new readers to enjoy. So raise a glass in celebration and here’s to another ten years.
Ernie Hulme Trustee, Colostomy Association, Reading
Tina Lightfoot, Editor
Theresa Porrett RGN MSc Nurse Consultant in Coloproctology, Homerton Hospital, London
The Editor Charter stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Tel: 020 7240 4493 email: email@example.com
Useful contacts ■ For urgent medical information or health advice, please ask your doctor or stoma care nurse, or phone NHS Direct. Tel: 0845 4647. ■ For advice on, or to order, stoma care products, please contact Charter Healthcare. Freephone: 0800 132 787. website: www.charterhealthcare.co.uk
Charles Knowles BChir PhD FRCS(Gen Surg) Senior Lecturer and Colorectal Surgeon, Queen Mary University, Barts and The London School of Medicine and Dentistry, London Tim Norton BSc(Hons) Dip Human Sexuality RMN Senior Lecturer and Cognitive Behavioural Therapist, University of Cumbria, Lancaster Hazel Pixley National Secretary, Urostomy Association, Uttoxeter
Editorial Director Elaine Bennett. Senior Sub Editor Joel Barrick. Editorial Assistant Claire Robertson. Art Editor Richard Seymour. Art Director Andrina de Paiva. Publisher Keena McKillen. The data, opinions and statements appearing in the articles herein are those of the contributor(s) concerned; they are not necessarily endorsed by the sponsor, publisher, Editor or Editorial Board. Accordingly, the sponsor, publisher, Editor and Editorial Board and their respective employees, officers and agents accept no liability for the consequences of any such inaccurate or misleading data, opinion or statement. Published by Hayward Medical Communications, a division of Hayward Group Ltd, The Pines, Fordham Road, Newmarket CB8 7LG. Tel: 01638 723560. Fax: 01638 723561. email: firstname.lastname@example.org Design & Editorial Office Hayward Medical Communications, 8–10 Dryden Street, London WC2E 9NA. Tel: 020 7240 4493. Fax: 020 7240 4479. email: email@example.com Copyright © 2009 Hayward Group Ltd. All rights reserved. ISSN 1466-3708. Printed by Turners.
CHARTER STOMA CARE ISSUE 34
Having a pouch – pros and cons For some people, an ileoanal pouch is the best solution to certain chronic bowel conditions, but it is not without drawbacks. Zarah Perry-Woodford explains
One of the greatest advances in colorectal surgery over the last 30 or so years has been the development of restorative proctocolectomy (RPC) with an ileoanal pouch for some patients suffering from ulcerative colitis (UC) or familial adenomatous polyposis (FAP). UC is an inflammatory bowel disease. It is limited to the colon and rectum, causing the individual painful and debilitating bloody diarrhoea. The incidence of UC is approximately 100–200 per 100,000, with the cause still unknown.1 FAP is an inherited condition in which people develop multiple polyps. Progression to colorectal cancer is inevitable if the colon is not surgically removed. However, even after surgery, FAP patients remain at increased risk of other tumours, including duodenal adenomas and carcinomas, and desmoid tumours.2 A pouch can be an excellent surgical option for some of these patients. An ileoanal pouch is made from the ileum (small bowel) and attached to the anal canal after colectomy (removal of the colon and rectum). It is difficult to determine the number of pouch patients; however, a national database study suggests that there are about 2,491 ileoanal pouch patients in the UK.3 This figure is ever increasing as centres in the UK submit data onto the database and more surgeons perform the operation. Most patients requiring pouch surgery are elective candidates, who choose either a two- or three-stage pouch operation. Rarely, some patients opt for a one-stage operation, but this carries considerably more risk and is reserved for patients with a complete repulsion toward a temporary ileostomy who are medically stable. The overall outcome of a onestage operation is not that successful. The two-stage operation, which is most commonly performed, involves a total colectomy with the formation of the ileoanal pouch and a defunctioning ileostomy. The patient then returns in approximately three months for a closure of the ileostomy (see Figure 1). The three-stage operation differs, as a total colectomy and end ileostomy are performed first, thereby preserving the rectal stump. The rectum is removed when the patient is clinically well and the pouch is formed. The stoma is then
CHARTER STOMA CARE ISSUE 34
closed as a separate procedure approximately three months later. The three-stage pouch procedure is performed as an emergency option; for example, in near perforation, in toxic megacolon or if the patient presents with severe, non-resolving active disease. Elective patients must have a diagnosis of UC, indeterminate UC or FAP. Crohn’s disease is a contraindication for restorative proctocolectomy because of the unacceptably high pouch failure rate. The successful candidate for restorative proctocolectomy must have adequate sphincter muscle squeeze and control in order to hold the large volume of semi-formed stool that is present in the pouch. The viability of the sphincter muscles can be assessed using a combination of clinical examination, manometry (measuring the difference in pressure) and anorectal physiology. It must be clear that there is an absence of low rectal cancer, especially in the FAP patient group. If a patient presents with an established carcinoma that can be excised with good clearance margins and has not extended into surrounding tissues, RPC can be performed. There appears to be no contraindication for pouch surgery on the grounds of age; patients as
Stomach Temporary ileostomy Ileum
Zarah PerryWoodford RGN DipN Clinical Nurse Specialist Pouch Care, St Mark’s Hospital, London
Figure 1. Ileoanal pouch (reservoir) and loop ileostomy following removal of the colon and rectum (restorative proctocolectomy)
Reservoir External anal sphincter muscle Internal anal sphincter muscle Anus
Straight talking young as three and those in their late 70s or early 80s have had successful RPC.4
Pros of the ileoanal pouch Removal of disease
Eliminates the need for a permanent stoma In some patients who have an aversion to a permanent stoma, the ileoanal pouch offers a temporary stoma as it is then reversed in a few months. This also appears to give patients an idea of what stoma care involves, in case of the unfortunate situation where the pouch fails and they are presented with the decision to return to an ileostomy.
Patient choice The pouch operation is an elective procedure; some patients have even referred to it as a ‘cosmetic’ choice. Most patients do not have to agree to pouch surgery initially and are given the chance to research their options, if their disease is well controlled or they are not at high risk of dysplasia in the rectum. Some patients choose to complete their family or career interests before committing to pouch surgery.
With a competent and experienced surgeon, disease is removed and the cancer risk significantly reduced. There have been many studies assessing the risk of abnormal cell development (dysplasia) within the ileoanal pouch. Dysplasia in the ileal reservoir is rare and, therefore, quality of life is immediately improved.5 For patients who have been undergoing invasive and uncomfortable testing to track their disease course, or using high-dose steroids or other drugs to combat the effects of their illness, the ileoanal pouch offers widespread relief and provides some form of a ‘normal’ life.
Pouch surgery is an elective procedure and patients have time to research their options before making a decision to perform surgery themselves, they allow patients to be referred to specialist centres for treatment. Research and development is the goal of future work.
Laparoscopic surgery In a modern ever-changing NHS, where enhanced recovery programmes are now deemed as acceptable practice and patients’ hospital stays are reduced, laparoscopic pouch surgery is beginning to evolve. Shorter hospital stays have an impact on patients’ recovery and allow them to return to their daily activities of living quicker.
Improved quality of life
Normal diet can be introduced within a couple of weeks following closure of the stoma. Most patients have a general idea of the sorts of foods that may have upset their stoma function and this remains the same in the early days of stoma closure. Small, regular, low-fibre meals are vital in promoting acceptable pouch function. Patients are encouraged to experiment with different foods and monitor pouch function. It is also worth remembering that the pouch will need to undergo some degree of ‘training’ to ensure a good function and this can be enhanced with a nutritious and regular diet pattern.
In patients who require a pouch, the advantages over a permanent ileostomy are obvious; the pouch replaces the rectum as a reservoir for faeces, removing the need for a permanent stoma and allowing normal defaecation. This has benefits in terms of patients’ lifestyle, self-esteem and sexual function, thereby improving their quality of life.
Sexual function is improved in men Some men have found that sexual function is improved following pouch surgery.6 This may be related to the improved quality of life and body image from removal of the stoma and its associated reservations.
Research and development The ileoanal pouch has been around for 32 years and is now seen as the ‘gold standard’ operation for most patients with UC or FAP.4 This established operation is offered to most patients and where surgeons may not feel competent
Cons of the ileoanal pouch Operating time The pouch operation is more commonly performed in two operations but in some cases, three stages. This may take anywhere from six months to two years before completion and many patients may have to put their life and their families on hold while they deal with hospital admissions and recovery time.
Usually only performed in specialist centres The operation is increasingly being performed in district general hospitals as more surgeons become competent in the surgical technique. Some patients, however, will still have to travel to specialist centres, which may necessitate long journeys and disruptions from family or work.
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Straight talking Complications of pouch surgery As with any operation, complications may occur in the early or late phase following surgery. Associated complications with the ileoanal pouch range from sepsis (breakdown of the ileoanal surgical connection [anastomosis]) in the early stage to fistulation, inflammation (pouchitis) and mechanical difficulties (obstruction, weak sphincters or small volume pouch) in the later stages. These complications can be treated with a variety of means such as drug therapy (antibiotics), further investigations or diagnostic imaging or possible return to theatre for dilation or examinations. As research evolves, the diagnosis of complications is becoming easier, as is the long-term management of these problems.
No guarantee on length of pouch success Failure is defined as the need to remove the pouch or establish an ileostomy indefinitely. It is cumulative, being about 5% at five years and 8–15% after ten to 20 years.7 Approximately 25% of failure occurs in the first year. Some surgeons quote a one-third ratio for pouch success: onethird of patients will undergo pouch failure, one-third will have acceptable pouch function and one-third will have excellent function. These figures are related to the patient’s perception of what they believe to be an acceptable pouch function and quality of life.
Normal frequency Stool frequency ranges from four to eight times in 24 hours, with approximately 50% of patients needing to evacuate at night.8 Most patients can control the urge to defecate for over half an hour and urgency is uncommon. Some patients report nocturnal seepage, but this is reduced in the day.9 Some patients may wear a sanitary pad for peace of mind. Patients should be made aware in the preoperative stage that pouch frequency may increase from their experience of normal and they will have to make changes to incorporate this into their daily life. Anecdotal evidence reports that most patients have better pouch function when distracted or involved in other activities such as work or family commitments. These patients also have realistic expectations following surgery.
Sexual function changes in women There is a considerable reduction in postoperative fertility in women after restorative surgery for ulcerative colitis; however, the actual number of births was only moderately reduced.10 Reduced fertility can be significantly enhanced with in vitro fertilisation (IVF). It is, therefore, advisable to establish the risk to patients in the preoperative phase about reduction in fertility and consequences of needing IVF. Female patients should be advised that during pregnancy there is often an increase in the frequency of passing motions, seepage and incontinence with a pouch; however this usually returns to the prenatal state following delivery.11 Sexual function appears to be affected in women after restorative proctocolectomy. Following surgery, a significant increase was found in vaginal dryness, pain associated with sexual pleasure (dyspareunia) and limitations to sexual activity due to fear
CHARTER STOMA CARE ISSUE 34
of stool leakage.12 However, there was no significant change in sexual desire, arousal and sensitivity, frequency of intercourse or satisfaction levels. In one study, the incidence of sexual dysfunction is reported as 8% preoperatively and increases to 25% postoperatively. Urinary dysfunction was not reported after ileoanal pouch surgery.13 If you are concerned about potential sexual dysfunction, make sure you discuss this with the surgeon before you have surgery.
Sexual function in men Most men who undergo pouch surgery are young and sexually active and therefore very concerned about their sexual function following surgery, as there has been a significant risk of male sexual dysfunction after pelvic surgery. Surgery may cause problems such as erectile dysfunction, absence of ejaculation (orgasm without ejaculation) or retrograde ejaculation. The risk is documented as being 2–4%.6 Sperm banking is a concern but not deemed necessary unless radio/chemotherapy is required before the operation.
Annual follow-up Most large centres follow pouch patients annually, depending on certain preoperative factors such as disease severity, length of initial diagnosis, ability to monitor the remaining rectum, number of polyps within the bowel or, most importantly, precancerous/cancerous changes within the colon or rectum. For some patients who have endured years of preoperative screening, this may appear as a daunting task after surgery; however, most patients view this as a necessity that provides general peace of mind.
Conclusion The data now available demonstrate that most patients have an excellent outcome following pouch surgery. In patients with a functioning pouch, quality of life is similar to the general population and is stable up to 20 years, even though there may be some minor deterioration in continence over time.14 However, there are complications of surgery directly associated with pouch dysfunction, which is the reason careful follow-up is required after this type of surgery, in order to determine the long-term results and make appropriate changes to maintain an acceptable quality of life for all pouch patients ■ References For a full list of references, email: firstname.lastname@example.org
Key points ● Creation of an ileoanal pouch is a solution for some people with ulcerative colitis (UC) or familial adenomatous polyposis (FAP). ● A functioning pouch grants quality of life comparable to the general population but careful follow-up is needed in case of dysfunction.
Sexuality and stomas In an article from the very first issue of Charter stoma care, and as part of a selection of articles reminding us that some issues are always around, Tim Norton looks at the impact a stoma can have on self-image and your sex life
Tim Norton BSc(Hons) Dip Human Sexuality RMN Senior Lecturer and
Cognitive Behavioural Therapist, University of Cumbria, Lancaster
Body image and self-esteem are important to us all. The impact of having a stoma can be great but, through adapting to changes, a positive attitude to sexuality can be maintained. Images of sexuality are all around us. The advertising world depends on beautiful people to sell products ranging from cosmetics to motor cars. If commodities can be linked to sexual attractiveness, it seems we are more likely to purchase. The reality, of course, is that most of us are not supermodels and carrying a pouch filled with faeces or urine during an intimate encounter is not an image we would willingly choose for ourselves or want others to know about. Yet many people have a distorted idea of how they appear. The stoma that seems so obvious to you may not actually be as significant to others.
A stoma need not prove an obstacle to a happy, loving relationship
The thoughts, feelings and attitudes an individual has about themselves can be described as self-esteem. This fluctuates depending on the situation. Appearance and sexuality are important aspects of this and positive thoughts and feelings about ourselves need to be worked on if we wish to feel good about ourselves. A stoma will alter the perception of body image and this is likely to be most overt in the person who, prior to surgery, was extremely concerned with their presentation to the world. Having a stoma clearly requires a great deal of adaptation, and acceptance of bodily changes is a vital part of this process. Perhaps the most self-conscious time of life is adolescence, a time when the young person is dealing with many issues of emerging sexuality, fitting in with peers and making an impact on society. Any bodily imperfections are going to be a source of great concern, particularly if a stoma has been present from an early age. The stoma and bag will make their presence felt when relating to the opposite sex. Should a partner be told about the condition and risk rejection when entering into a sexual relationship? Adults, too, will most likely feel extreme concern at this type of surgery and will adjust
best if their social situation is conducive to an acceptance of change of such a personal nature. People of all ages become ostomists. It is important to recognise that elderly people have issues of sexuality and sexual needs, issues that are often overlooked by nurses and doctors. Many couples share and enjoy a sexual relationship into their 70s and 80s.
Adjusting to change Sexuality has been described as pivotal in the formation of body image and self-esteem. The World Health Organization defines human sexuality as: â€˜the integration of the romantic, emotional, intellectual and social aspects of
CHARTER STOMA CARE ISSUE 34
Emotional support sexual being, in ways that enhance personality, communication and love’. Research suggests the main fear expressed by single ostomists is of confessing to a stoma when finding a partner. For those people confident of their sexuality prior to surgery, this may not be difficult but this is not always so. Other health issues may provide added complications. For people with a physical disability, concerns regarding body deformity or erectile difficulties may add to anxieties about a stoma. Normal desires for loving and sexual partnerships will be present, but may conflict with the images of relationships portrayed as ‘normal’ in the media. Resentment about changes to body image may occur in the person who, for example, has had a number of sexual partners and now feels inhibited and unable to adapt their lifestyle. Support and willingness on the part of loved ones to accept the changes is most likely to lead to a positive adaptation on the part of the ostomist. Adequate support in the form of information, time and opportunity to discuss the issues before and after surgery will help in the formation of a positive attitude towards the stoma.
Sexual effect of stoma surgery Sexual concerns are likely to be in the mind of someone undergoing surgery and rehabilitation. Surgery is carried out in the body area associated with sexual activity and, understandably, there may be anxieties about the ability to gain erections or feel attractive to a sexual partner. One writer on the topic of sexual difficulties has separated sexual functioning into desire, arousal and sexual activity.1 Difficulties may occur in one or more of the following areas. ● Loss of desire, or libido, can occur in men and women. In the ostomist this may be due to a non-acceptance of the changes or unwillingness to allow a partner, husband or wife to regard them still as a sexual being. ● Arousal problems concern ‘mechanical’ functions such as the ability to gain and maintain erection in men, and the ability to feel aroused, with the evidence of vaginal lubrication, in preparation for intercourse in women. ● Problems of activity will include inability or difficulty in reaching orgasm in men and women, or specific conditions such as premature ejaculation in men, inability to prevent climax in the early stages of sex play or immediately on penetration. There are physical and psychological components to sexuality and these affect and are affected by each other. As an example, a male client embarked on a new relationship following divorce but was unable to maintain a satisfactory erection, causing him a great deal of frustration, despite the supportive understanding of his new partner. Through several sessions of psychosexual therapy he came to appreciate the effect his ex-wife was still having on him emotionally; he still felt controlled by her despite the fact
that the marriage had broken up due to her extramarital affair. He felt guilty that he had not tried harder to save the marriage and this was translated into the physical symptom of loss of erections. Dealing with, and changing, his negative pattern of thinking about himself and his exwife was liberating. Coupled with sex therapy, and a technique known as ‘sensate focus’, this was sufficient to break the psychological barrier and help him develop normal sexual relations with his new partner. It may be tempting to attribute sexual problems to the physiological trauma of surgery but the psychological component must not be overlooked. In our society, despite the emphasis placed on the topics of sex in lighthearted conversation, on TV, radio and in newspapers and popular literature we are notoriously bad at addressing the issues seriously. Unfortunately, the medical and nursing professions at times contribute to this malaise and open, frank discussion of possible surgical difficulties relating to sexuality before surgery may not take place. Of course, in some cases, there is no time for discussion of the issues prior to surgery and, indeed, adaptation may be more difficult under these circumstances. It is vital, therefore, that discussion on what is, after all, a normal healthy part of living, is included in the many topics relating to the formation of a stoma that are covered by the patient and professional. Sexual knowledge and a positive attitude will help prevent the development of long-term sexual and relationship difficulties. Where there is discomfort in broaching sexual matters with a partner it may be helpful to discuss these with a trained therapist. GPs and stoma care specialists will be able to advise and refer if necessary. This may seem a drastic step but could be an opportunity to open conversation about an area that is difficult for many.
Dealing with problems Sexual matters leave many people feeling uncomfortable. Having a stoma may lead to the end of any kind of sex life, either enforced on the patient by their partner or due to personal choice. For many, however, sexual activity continues to be a normal, healthy part of a relationship. As with people who do not have a stoma, rejection and hurt can occur in human relationships and this may have nothing to do with the presence of the stoma. The surgery and rehabilitation are a time of emotional turmoil and of dealing with the possible physical complications of leakage, odour, shape and size of bag and changes to body image. Some strategies for sexual relationships are outlined below. ● Timing: choose the right time to broach the issue with a potential partner. Establish the friendship first, so that the other person knows and likes you. Wait until you feel relaxed. ● Communication: rehearse what you want to say. Be clear, confident and positive. Choose a time when you
There are physical and psychological components to ❛ sexuality and these affect and are affected by each other CHARTER STOMA CARE ISSUE 34
What you said about CSC will not be interrupted. Don’t make apologies, and state the benefits to yourself. Answer questions but be brief and to the point. Be relaxed about your stoma and bag to put the other person at ease. Be aware that your partner will have his or her own thoughts and feelings, and be prepared to support them. ● Strategies for sex: minimise the impact of your stoma on lovemaking. Place great emphasis on personal hygiene. Check the pouch or bag is empty, clean and secure. Avoid undesirable foods and fluids prior to lovemaking. You may wish to use a bag cover or item of clothing to disguise the presence of the appliance. Engaging in pelvic floor exercises will help strengthen muscles and increase blood circulation. Squeezing the muscles that prevent urine flow also helps. Creams or water-based lubricants may assist penetration during lovemaking. Gentle thrusting during intercourse, manual stimulation and varying positions can be of benefit in reducing pressure on the stoma and appliance. As described earlier, physical problems such as erectile dysfunction (impotence) can be treated by referral to a specialist. As well as psychological help, physical techniques – such as Muse (Astra Pharmaceuticals Ltd, UK), a pellet inserted in the penis, or Viagra® (Pfizer Limited, UK), an oral medication – are effective methods of inducing erections.
In issue 32 of Charter stoma care (CSC), we sent out a survey to patients and to healthcare professionals, to find out about your experiences of ostomy and your opinions of the journal. Of ostomists responding, 98% read every issue or most issues, and, again, 98% read specific sections or the whole journal cover to cover. For healthcare professionals, 93% read every issue or most issues, and 91% read certain sections or the whole journal. Around 50% of readers had an ileostomy, 40% a colostomy and 10% a urostomy. Around one-third of readers had had their stoma for over ten years and a further one-third for three to nine years. A small percentage were very recent ostomists, having had their stoma for three months or less. A slight majority of patients were female (53% to 47%). The great majority of responders were aged 50 or above – 422 aged 50–69 and 442 aged 70 or over; 118 readers were aged 30–49 and just 17 were under the age of 29. Patients’ greatest areas of interest were medical information, appliances and readers’ letters. For professionals, the greatest areas of interest were medical information, sex and relationship issues, and psychological issues. Almost three-quarters (74%) of professionals and 92% of patients either agreed or strongly agreed that they found the journal informative (see Figure 1). 1% 2% 5% 25% 67%
Explore your sexuality Of course there can be problems in any sexual relationship. These are not insurmountable. Time, patience and a sense of humour are all important. Being flexible and relaxed aids pleasure and communication. Be prepared to find new and interesting ways to express your feelings ■ Reference 1. Hawton K. Sex therapy: a practical guide. Oxford Medical Publications, 1997.
Key points ● The impact of having a stoma can be great but, through adapting to changes, a positive attitude to sexuality can be maintained. ● Research suggests the main fear expressed by single ostomists is of confessing to a stoma when finding a partner. ● It is vital that a discussion about sexuality is included in the many topics relating to a stoma that are covered by the patient and the professional. ● Minimise the impact of your stoma on lovemaking – for example, place great emphasis on personal hygiene and avoid undesirable foods and fluids prior to lovemaking. Most importantly, be flexible and prepared to find new and interesting ways to express your feelings.
Figure 1. Stoma patient readers’ thoughts on whether Charter stoma care is informative On a 1–5 scale, with 5 being ‘strongly agree’, the score from patients responding averaged above 4 for the statements ‘CSC has a good range of articles’; ‘I look forward to receiving my copy of the journal’; ‘I consider the articles in CSC to be of value to me’ and ‘I find the journal informative’. Professionals gave an average score of 4.14 to ‘I find CSC informative’ and 3.32 to ‘Information in CSC may sometimes influence how I manage my patients’. When asked if they would like the option of CSC online, 63% of professionals said yes, while 15% said no and 22% were unsure. This was almost reversed for patients: 62% did not want to have the journal online, 16% did, and 22% were unsure. Readers were asked what they liked most about the journal. Patients said that the journal was informative and easy to read and was in plain English and clear. They like the readers’ letters and reading about other people’s experiences – the journal helps readers to realise that they are not alone and there are many others looking for advice. The variety of topics and the information on new products is useful and the journal helps them to understand their condition better. Healthcare professionals liked that the journal is easy to read and informative, so they can pass on information to patients and student nurses. They also appreciated the wide variety of articles. Patients looked for bigger issues and more frequent publication. Professionals looked for more relationship-based articles, and for the journal to be published at a smaller size to fit into kit bags. Thanks to all who sent us their views ■
CHARTER STOMA CARE ISSUE 34
Celebrating ten years of Charter stoma care Charter stoma care has reached its tenth anniversary! Jill Dean, who was Editor of the journal from its launch up to issue 25, takes a look back
The pros and cons of havin ileoanal pouch … page 5 g an
Advice on benefits claim s for ostomists … page 12
Issue 34 Winter 2009/10
10 • Practical guidance • Clinical advice • Editor’s expertise • Straight talking • Medical updates
Charter • Readers’ letters • Emotional support •Terms explained • Real-life stories • Helpful resources
Sexuality and your stoma Maintaining your self-confidence
Ten years on! I can’t believe that it is ten years since the first edition of (what was then) Charter was published. How time flies! I have a good reason to remember the introduction, as I was Editor of Charter when it was first launched and for the next seven years, until Tina Lightfoot took over to continue with more excellent issues. However, after ten years it seems a good time to reflect on what has been achieved in a decade of journal issues. I remember in my very first Editorial, a promise to publish articles on every topic of interest to people with a stoma, even if the subjects were of a sensitive or personal nature. I recently looked back over the many articles published and was delighted to see how well the promise has been kept. The range of subjects covers practical stoma management for colostomy, ileostomy and urostomy, including problems such as leakage and sore skin and tips and hints on management. Other articles addressed how people cope with the impact of living with a stoma on work, social life, sexuality, self-esteem, exercise, eating, drinking, travel and many more topics. All the articles are written by leading experts in their field and this has ensured that throughout the ten years Charter stoma care has remained current and is as valuable to new ostomists as it is for those who have had a stoma for some years. Charter stoma care has a well-earned reputation as ‘best in class’ to be proud of, and to prove how valued it is, it has a circulation of 60,000 readers for each issue. This is a huge number – more than many magazines found in newsagents and bookshops. I know from my time as Editor the importance you place on receiving through the post your personal copy of Charter because I received large numbers of letters from you leaving me in no doubt. The letters often simply said how much you enjoyed reading the articles, sometimes telling your own personal story, sometimes posing a problem and
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Charter stoma care today – with its new-look cover Committed to meeting your need for quality products and services
The very first issue of Charter
The switch to Charter stoma care
asking for advice. I remember we published many of your letters in a question and answer section generating much interest. It was one of the first forums of this type for people with a stoma to ask open questions and receive an honest and truthful reply. Other questions and suggested topics from readers generated ideas for the articles we published. I know some readers will remember all the issues over ten years and many readers will have joined along the way – a big ‘thank you’ for your support and enthusiasm, for sharing your own problems or needs, and for your ideas and suggestions. To reminisce on the early years of Charter stoma care is a pleasure. To acknowledge what the journal has achieved in the world of stoma care is a privilege ■
Jill Dean Former Editor of Charter stoma care
Further advice on claiming benefits as an ostomist Following our article on benefits claims in issue 32, Karen Booth from the Department for Work and Pensions brings you an update and clarifies some issues Karen Booth MA Senior Communications Manager, Pension Disability and Carers Service, Leeds
Further to the article Claiming your disability benefits by Terry Gallagher in issue 32 of Charter stoma care, and in particular in relation to the lowest rate of Disability Living Allowance care component, which only applies to daytime, some further guidance may prove to be helpful. First, it is useful to clearly define the terms used. When discussing benefits and allowances, the word ‘day’ is used for the period when, in accordance with the domestic routine of the household in which the disabled person lives, the household becomes active in the morning until it closes down for the night.
Things to remember It is important to remember that entitlement to Disability Living Allowance or Attendance Allowance is not based on the specific condition you have, but on the effect it may have on your life and requirement for long-term personal care and/or help with mobility. For example, an ostomist with no other significant disabilities who is able to manage their self-care unaided, including washing and dressing, changing the stoma bag and cleaning the site, is likely to have fewer care needs than someone who has arthritis or poor sight, or who is elderly and frail.
Disability Living Allowance You may be able to get Disability Living Allowance if you are aged under 65 and have needed supervision or help with personal care, or had walking difficulties because of a physical or mental disability for three months, and you are likely to need this help or have these difficulties for at least another six months. There are two components involved: one for care and the other for mobility. To get the care component of Disability Living Allowance, your disability must be severe enough for you to: ● Need help with things such as washing, dressing, eating, getting to and using the toilet, or communicating ● Need supervision to avoid you putting yourself or others in substantial danger
● Need someone with you when you are undergoing dialysis treatment ● Be physically unable to prepare a cooked main meal for yourself (if you had the ingredients), if you are aged 16 or over. There are three rates of care component that are available. What you can claim changes depending on how your disability affects you. ● The lowest rate – If you need help for some of the day or you are unable to prepare a cooked main meal. ● The middle rate – If you need help with personal care frequently or supervision continually throughout the day only, or prolonged or repeated help with personal care or someone to be awake to watch over you during the night only, or someone with you while on dialysis. ● The highest rate – If you need help or supervision frequently throughout the day and during the night. You can get Disability Living Allowance for care needs even if no one is actually helping out with your care needs; for example, if you live alone, as long as you satisfy the above criteria. To get the higher rate of mobility component, your physical disability must be severe enough for you to have any of the following walking difficulties, even while wearing or using an aid or equipment you normally use. You must be: ● Unable or virtually unable to walk (you may even have had your feet or legs amputated) ● Assessed to be both 100% disabled because of loss of eyesight and not less than 80% disabled because of deafness and you need someone with you when you are out of doors ● Severely mentally impaired with severe behavioural problems and also qualify for the highest rate of care component ● So ill that the effort of walking could threaten your life or seriously affect your health. To get the lower rate of the mobility component of Disability Living Allowance your physical or mental disability must be so severe that you need guidance or supervision from another person when walking out of doors in unfamiliar places. You may be entitled to the care or mobility components, or both.
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Medical update Attendance Allowance If you are aged 65 or over and have needed help with personal care or have needed supervision because of a physical or mental disability for at least six months, you may be able to get Attendance Allowance. To get Attendance Allowance, your disability must be severe enough for you to need any of the following: ● Help with things such as washing (and getting in or out of the bath or shower), dressing, eating, getting to and using the toilet, or communicating ● Supervision to avoid putting yourself or others in substantial danger; for example, needing someone to keep an eye on your medical condition or diet, or because you cannot control the way you behave ● Someone with you when you are on dialysis. There are two rates of Attendance Allowance. As with Disability allowance, the rate you can claim changes depending on how your disability affects you: ● The lower rate – If you need help with personal care frequently or supervision continually throughout the day only, help with personal care or someone to watch over you during the night only, or someone with you when you are on dialysis ● The higher rate – If you need help with personal care, or someone to supervise or to be awake to watch over you frequently through the day and also during the night. Remember, you can get Attendance Allowance even if no one is providing the care you need, even if you live alone.
Further advice We see that while some ostomists may have grounds for claims due to other conditions, a stoma alone may not be considered ‘enough’ of a disability to qualify for benefits, particularly if you are otherwise fit and well and able to manage your stoma. Claims are assessed individually and you may find people who qualify for benefits through being an ostomist, but this will not always be the case. To find out more about the benefits mentioned, visit the benefits advice section on the UK government’s website (www.direct.gov.uk/en/DisabledPeople/FinancialSupport/ index.htm) or call the Benefit Enquiry Line on Freephone 0800 88 22 00. Their hours are Monday to Friday 8.30 am to 6.30 pm and Saturday 9 am to 1 pm ■
Key points ● Entitlement to Disability Living Allowance or Attendance Allowance is not based on having a specific condition, but on the effect that condition may have on your life and care requirements. ● Some ostomists may qualify for benefits through other conditions they have, but a stoma in itself may not be grounds for a benefit claim. ● All claims are assessed individually, so other people’s experiences may not reflect your own.
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In a new feature, Charles Knowles keeps you up to date with the latest research findings on stoma care Colonic trauma in action One recent report covers combat-related colonic trauma in US soldiers in Iraq;1 65 patients had blast and gunshot injuries resulting in colonic surgery, showing the potential morbidity of failure of primary colonic repair (16%), and high rates of complications following ostomy closure (30% rising to 75% if there had been failed repair or anastomosis). It reminds us that in troubled times some ostomates may be members of our armed forces.
Effects of social deprivation Two articles2,3 highlight the detrimental effect of social deprivation on outcomes from rectal cancer surgery. The first finds, from the Association of Coloproctology of Great Britain and Ireland colorectal cancer database, that 22% of rectal cancers were treated with sphincter excision and permanent colostomy, with a 60% increase in this method in the most versus least deprived groups. If this were not bad enough, the second study (of 486 patients from Birmingham) shows that not only were permanent stoma rates higher, but that the five-year survival was halved (32 vs 64%) in the deprived group! I will leave the reader to reach their own conclusions on these statistics.
Risks in reversal A systematic review of ileostomy reversal (18 studies and 6,107 patients)4 reminds surgeons of the need to warn patients of the risks of reversal: morbidity 17% (bowel obstruction 7%, wound infection 5%) and mortality of 1:250.
Quality of life August revealed two articles from the Cleveland Clinic, Ohio.5,6 The first presents a scoring system based on patient fitness to predict stoma reversal following Hartmann’s procedure for diverticulitis. It reminds us that around 30% of such patients never have a reversal. The second article reported five-year follow-up data on continent ileostomy after failed ileoanal pouch surgery. Sixty-four such patients were identified from 1982 onward, with a long-term dysfunction rate of 50%, complication rate of 61%, and revision rate of 45%. Despite the problems, 95% of patients opted to keep their continent ileostomy and were highly satisfied in terms of quality of life. We would be very interested to hear your feedback on this new section of Charter stoma care. Please feel free to get in touch at email@example.com or by letter to the postal address on page 15 ■ References 1. Vertrees A, Wakefield M, Pickett C et al. Outcomes of primary repair and primary anastomosis in war-related colon injuries. J Trauma 2009; 66: 1286–1291. 2. Tilney H, Lovegrove RE, Smith JJ et al. The National Bowel Cancer Project: social deprivation is an independent predictor of nonrestorative rectal cancer surgery. Dis Colon Rectum 2009; 52: 1046–1053. 3. Harris AR, Bowley DM, Stannard A et al. Socioeconomic deprivation adversely affects survival of patients with rectal cancer. Br J Surg 2009; 96: 763–768. 4. Chow A, Tilney HS, Paraskeva P et al. The morbidity surrounding reversal of defunctioning ileostomies: a systematic review of 48 studies including 6,107 cases. Int J Colorectal Dis 2009; 24: 711–723. 5. Riansuwan W, Hull TL, Millan MM, Hammel JP. Nonreversal of Hartmann's procedure for diverticulitis: derivation of a scoring system to predict nonreversal. Dis Colon Rectum 2009; 52: 1400–1408. 6. Lian L, Fazio VW, Remzi FH et al. Outcomes for patients undergoing continent ileostomy after a failed ileal pouch-anal anastomosis. Dis Colon Rectum 2009; 52: 1409–1414.
Charles Knowles BChir PhD FRCS(Gen Surg) Senior Lecturer and Honorary Consultant Colorectal Surgeon, Queen Mary University, Barts and The London School of Medicine and Dentistry, London
The Colostomy Association
The Urostomy Association
IA is a patient support group run by and for people with ileostomies and ileoanal pouches. Our primary aim is to help people who have had their colon removed return to a full and active life as soon as possible after surgery. This surgery gives thousands of people a fresh chance in life, providing freedom from the debilitating illnesses of ulcerative colitis, Crohn’s disease and other inflammatory bowel diseases. With approximately 10,000 members, 54 local groups and a team of specially trained visitors, IA is able to provide patients pre- and post-surgery with the invaluable support of talking to someone who has shared the same experience. IA continues to work in close co-operation with
healthcare professionals to raise awareness and challenge the fear and misconceptions that surround bowel disease and surgery. Rebranding in 2007 gave IA a fresh new look; our quarterly journal is valued as the prime means of keeping in touch with members; development of the website provides instant access to information and the Freephone offers us the opportunity to listen – inform – support. Contact details: IA, Peverill House, 1–5 Mill Road, Ballyclare, Co Antrim, BT39 9DR. Freephone: 0800 0184 724. email: firstname.lastname@example.org website: www.iasupport.org
The Colostomy Association has been around in some shape or form for over 46 years. We are an independent UK-registered charity financed solely by donations. We help colostomates and the wider world learn and understand what it is like to have a colostomy, and to care for and live with a stoma on a daily basis. We represent, and give continued support to, this special community. The Colostomy Association’s main aims and aspirations today are broadly the same as they were for our forerunner, the Colostomy Welfare Group, founded in 1963: to provide support, reassurance and practical information to all those living with a colostomy, their families and carers. We do this through our 70 trained volunteers
based around the UK, telephone helpline, advisory literature and our friendly and informative quarterly magazine Tidings. Colostomy and stoma care are not subjects openly discussed in the public domain and the Association works hard to change public perceptions and beliefs. Through openness and discussion, ignorance can be replaced with knowledge and understanding. Contact details: Richard Bray – General Manager, 2 London Court, East Street, Reading RG1 4QL. General enquiries: 0118 939 1537. Helpline: 0800 328 4257. email: email@example.com website: www.colostomyassociation.org.uk
The Urostomy Association was formed in 1971 to provide information and support for anybody with a urostomy or any other kind of urinary diversion. We have 15 leaflets covering a wide range of subjects including: the different operations; travel information; infections; sexual matters; active living and follow-up care. Our magazine is published three times a year and our very popular Urostomy Association Members’ Handbook is given to all new members. An addition to our range is the DVD ‘Living with Cancer’, presented by Pam Flint, partner of the actor Dennis Waterman. The Association has 15 local branches around the UK, which hold regular meetings, and many also have social events on their calendars. We have
trained volunteers in many areas available to visit people on a one-to-one basis, before or after their operation to offer individual support. The Association holds its Annual General Meeting each October, where about 150 members join together for a weekend to meet old friends, make new ones, listen to presentations and look at all the different products at our large exhibition. Contact details: Hazel Pixley, National Secretary, Urostomy Association, Central Office, 18 Foxglove Avenue, Uttoxeter, Staffordshire, ST14 8UN. Tel: 08452 412159 or 01889 563191. email: firstname.lastname@example.org website: www.uagbi.org
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In conversation with … In this regular feature, we will answer your questions and address any difficulties you are having related to your stoma. Let us know what you need
I have used the irrigation bag for three years and have found this to be of much help to me. I am determined to live life to the full and during this time have had about five holidays abroad – all European destinations. I have used local water in my bag without any ill effects. I watch very carefully what I eat at all times and use my bag every 24 hours.
Ms H, Surrey Tina Lightfoot RGN MSc Editor
I have a permanent ileostomy following 16 years of being told I had IBS and, on developing fistulae and abscesses, unnecessary surgeries. My point, though, is about aiport stripsearch. Nothing can beat the embarrassment of being pulled behind a curtain and ordered to strip off so that airport security can check my bag. They refused to read my hospital letter, my stoma nurse letter and my card telling them that I have a genuine medical condition requiring the bag and that a doctor must be present if a search is deemed necessary. After finding nothing of issue, the girl did not even have the courtesy to apologise – and then even announced to her work colleagues why she had taken so long – because she had had an awkward person to deal with! For other readers, I have found two solutions. 1. Wear a two-piece ostomy system and, just before going through security, change to a closed bag, which avoids the closure showing up on the machine. I change to a normal bag in the toilets after security or on the plane. 2. Go by ferry! Mrs C (by email) Anne Demick (IA) writes: I advise everyone to spread their ostomy equipment over their entire luggage to ensure that they have supplies should one of the pieces of luggage go missing. Some people carry all their supplies in their hand baggage. This draws attention to it if it then looks bulky. It is best to keep a low profile, keep to the rules (take no scissors or liquids) and carry as little as possible in your hand baggage.
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If a bag, or ostomy equipment, is selected for search then it is best to ask politely if the content could be viewed ‘somewhere less public’. When the new security arrangements were introduced, the patient support organisations discussed the possibility of producing some guidelines for security staff. However, problems were not occurring on a sufficiently regular basis to warrant urgent attention. The time may now be right to think about this again ■ In 1986, I had cancer of the large bowel, rectum and anus and had to have an immediate operation. I was then aged nearly 71. In those days this operation was vastly different and I was in hospital for almost three months. I am told it is about ten days now. I was discharged in September and was very pleased with all the support and care received by hospital staff, which was a great help to me on the road to recovery. This was also helped by a very supportive family who gave me the courage to carry on. However, I was to be dealt another great blow in March 1987 when my dear wife was diagnosed with breast cancer. She passed away on 18 August. Again family and friends rallied round and gave me the courage to carry on. Since then I have had 21 operations in 22 years, but with determination I have come through it all. Now, at nearly 93, I can look back, not with tears but with pride at having surmounted all those difficulties.
Mr S, Bedfordshire Thank you for your letter. Your courage is immense. There is no doubt that support from those you love is indispensable when facing such difficult times. I am so glad that you have come through and are able to be such an example to others ■
Thank you for your letter. I am so glad that you are finding irrigation a useful method of managing your stoma ■
Glossary The terminology used by healthcare professionals can be confusing and probably none more so than that we use for tumours. A tumour is a mass of abnormal tissue cells. It can be benign, pre-malignant or malignant. Adenomas are benign tumours that develop from the epithelial cells (used for secretion). An adenoma forms when normal epithelial cells grow excessively. Adenomas in the colon are often referred to as adenomatous polyps. Carcinoma is a malignant growth that starts in epithelial tissue. A growth becomes malignant when the cells become very abnormal and are classed as invasive (they are able to metastasise; that is, spread to parts of the body distant from the original tumour site through blood and lymph vessels). Adenomas can develop into carcinomas. Such cancers are known as adenocarcinomas. Desmoid tumours develop in the fibrous tissue that covers muscle and other organs. Because they do not spread to other distant parts of the body, they are not a cancer, but they can grow into the surrounding tissue.
Please address your correspondence to: The Editor, stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Alternatively, you can email the Editor at: email@example.com
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