The facts about the Mitrofanoff pouch … page 7
Tips to help you get a good night’s sleep … page 10
Issue 35 Spring 2010
stoma care
Positive thinking Keeping on top of your feelings about your stoma
Committed to meeting your need for quality products and services
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Contents
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Psychological issues Positive thinking with a stoma by Helen Farrell
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Straight talking Understanding what it means to have a Mitrofanoff pouch by Sharon Fillingham
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Medical update Bringing you research findings by Charles Knowles Practical care
10 Simple tips for ensuring you get a good night’s sleep by Toni Johnson Coloplast 11 Experience the benefits of using Charter Healthcare’s service Emotional support 12 Sexuality and stomas: your partner’s perspective by Tim Norton 14 Resources Forum 15 Your questions answered
Cover photo: ZIA SOLEIL
CHARTER STOMA CARE ISSUE 35
Comment
Coming through to the other side It was a long hard winter this year; worse for some than for others. I say ‘was’ in the assurance that by the time you read this, we will be well on our way into summer. Even so, as I write with Easter approaching the weather remains pretty dire and for some, winter has returned with a vengeance. With the evenings getting lighter, however, there is definitely a sense of coming out of the darkness of winter into the light. We all feel better for getting some sun on our faces, and for the sight of spring bulbs emerging and trees coming back into bud after looking for all the world as though they were dead.
Coping with illness successfully Recovering from illness can be a little like coming out of winter into spring with the promise of summer ahead. The long dark days of coming to terms with what has happened and learning to deal with changes in Recovering from your body will, for most, give way to a sense of illness can be a little recovery and renewal. like coming out of As your body grows physically stronger, so winter into spring the mind manages to assimilate all that has happened and make some sense out of it all. With increased strength comes confidence, and life, if not returning necessarily back to how it was before, certainly takes on a normality of its own. Just as with the winter we’ve just had, the darkness is much harder for some than for others and indeed can last much longer. It may even be that just when you think you’ve got it all together, it all closes down on you again. It is at times like this when we really cherish our friends and family who can support us when times are really tough. This is also a time to turn to healthcare professionals, who are there to support you specifically in those difficult periods. Think of us as the snowplough coming to dig you out of a drift!
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Continued overleaf 3
There will, however, be some of you reading this who feel that you will never be able to cope with the way things are now. I know from letters that some people have persistent difficulties with appliances, leakages and sore skin, which affects their confidence and completely limits their activities. Reading about how someone has been skydiving or canoeing down the Amazon with a stoma is of little comfort when all you want to do is get on a bus without fear of embarrassing yourself. There is, I’m afraid, no magic solution for all of those who write in with tales of difficulty and hardship. Indeed, as stoma care nurses, we can feel so frustrated when all our tried and tested solutions seem to fail. I urge you though, not to give up hope. There is usually a solution waiting to be found, so keep in touch with others who may have faced similar difficulties through the patient support groups, and stay in contact with your specialist nurse, who is there to help and support you. Some of you tell me that you do not know who your local stoma care nurse is or how they can be contacted; well, I have good news for you – a group of stoma care nurses in Gloucestershire have put together a directory of stoma care nurses across the country. So, if you write to me via Charter stoma care (the postal address and email details can be found at the bottom of this column) letting me know which is your local hospital, we should be able to give you the name and contact details of your local specialist nurse.
Looking forward to summer Finally, may I take this opportunity to wish you all a great summer ahead – whether it be spent watching the World Cup or Wimbledon, digging the allotment, or simply sitting in some sunshine and relaxing. Tina Lightfoot, Editor The Editor Charter stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA email: edit@hayward.co.uk
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
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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 Ernie Hulme Trustee, Colostomy Association, Reading 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 Theresa Porrett RGN MSc Nurse Consultant in Coloproctology, Homerton Hospital, London
Editorial Director Elaine Bennett. Chief Sub Joel Barrick. Senior Sub Editor Anne-Claire Bouzanne. Editorial Assistant Danielle Colyer. 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: admin@hayward.co.uk Design & Editorial Office Hayward Medical Communications, 8–10 Dryden Street, London WC2E 9NA. Tel: 020 7240 4493. Fax: 020 7240 4479. email: edit@hayward.co.uk Copyright © 2010 Hayward Group Ltd. All rights reserved. ISSN 1466-3708. Printed by Turners.
CHARTER STOMA CARE ISSUE 35
Psychological issues
Positive thinking with a stoma Helen Farrell explores some methods of staying positive when dealing with a stoma Have you ever been told to count your blessings? Have you ever actually done it? If you did, was your stoma one of them? There is no doubt that stoma surgery is a significant life event and one that people react differently to. For many, it can signal the start of a welcome new period of health and fitness, while for others it can be the beginning of a difficult struggle with negative emotions. Whatever your experience, there are ways you can take control of your feelings and start to view your stoma in a more positive light.
Ways of keeping positive Every day, we hold an internal dialogue, a conversation with ourselves, which can shape how we react to events. This is known as ‘selftalk’. Think back to the last time you said ‘I’m having a bad day’ – didn’t it seem as though everything went wrong that day? This is an example of self-talk. We use it all the time, mostly unconsciously, but the good news is that you can take control of this process and use it to your advantage. A simple example, which you may already use, is telling yourself to ‘stay calm’ when the kids are acting up or you are stuck in traffic. It has been shown that thought repetition can strengthen a belief pattern, until it becomes easier for the brain to think that way than any other. So, try creating a mantra or motto for yourself – ‘I cope well with my stoma’ or ‘My stoma has brought about positive change in my life’ and say this, in your head or out loud, a few times a day.
‘Act as if’ William James, an American philosopher, said, ‘If you want a quality, act as if you already had it’. The ‘act as if’ technique involves choosing an attribute that you would like to have and acting as if you had that trait for a few days. Next time you find yourself talking, or thinking, about your stoma, only allow yourself to refer to it in positive terms. Grumbles and complaints are off limits for this exercise! You might feel that this is simply an exercise in spin and, unless you mean it, it won’t mean anything. Well, the chances are that the more you do it, the more you will start to believe it. The ‘act as if’ principle works in several ways. First, as you go about acting as though you feel good about
CHARTER STOMA CARE ISSUE 35
ZIA SOLEIL
Self-talk
your stoma and having it is a positive thing, you will find you start believing it. In order to ‘act as if’ – you will have to find ways to make it convincing and so you will look for, and find, things about the situation that are in fact positive. Practising it externally for long enough will result in it becoming an authentic inner attitude. You will also find that your behaviour influences other people, who will take their cue from you. This leads into a lovely circular pattern of behaviour, where each person’s actions serve to strengthen the other resulting in a feeling of positivity being reinforced at every hand’s turn. You can see examples of this happening every day. Think about how one person being in a bad mood can bring down those around them, or how when someone laughs it can be infectious and lead to others smiling or laughing, even if they do not know the cause. When people learn about something new, they will take their lead on how to feel about that thing from the person they are learning from. So, if you explain your medical history to someone in terms of doom and gloom, how do you think it will inspire the listener to feel? Equally, if you paint a positive picture of it and show what a beneficial thing it is (and certainly not something to be embarrassed or secretive about), it is highly likely the recipient of this information will form a similar attitude.
Recovery from surgery is an opportunity for a fresh start
Helen Farrell BA(Hons) Helpline Services Manager, Ostomy Lifestyle
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Psychological issues It is important to think about your illness and recovery in positive terms. Talk about when, not if, you get well and visualise what this future will be like. If you are troubled by the change you have been through, remember that change is part of life and no situation really stays the same for very long. If you feel negative about it one day, allow for the possibility that you will feel more positive tomorrow, or next week, or even after having a cup of tea!
Recognise your achievements Remember to give yourself credit and recognise all your achievements, however insignificant you may think they are. Immediately after surgery, you might feel exhausted by the effort of getting yourself dressed in the morning. This is understandable, given how much your body has been through. Give yourself a pat on the back and then think about what your next challenge will be. A walk to the corner shop? And then? Keep looking ahead to what you will achieve next and try not to sabotage yourself by deciding you cannot do something before you’ve even tried. If you weren’t interested in running a marathon before your operation, don’t assume that you should be afterwards (equally, don’t assume that you won’t be!), but giving yourself goals is a great way of motivating yourself. And don’t compare yourself to other people too much. What represents a challenge to one person may be an everyday event for another. Find your level and go for it. This might be anything from getting back to work or a visit to see the grandchildren to graduating from university or climbing Everest. It’s your life to lead and enjoy.
A fresh start You might find it useful to see your recovery from the surgery as an opportunity for a fresh start. If you have previously suffered from a debilitating illness, you might now be able to do many things that you couldn’t before. There are lots of people out there to help you achieve this. Stoma patients are lucky enough to have specialist nurses, a national support and information service (Ostomy Lifestyle), patient associations (Colostomy Association, IA, Urostomy Association), not to mention a whole industry dedicated to providing cutting edge designs in appliances, staffed by people who are knowledgeable and caring. Professional help is also available from counsellors and therapists for people who are suffering from depression. Many people find it beneficial to talk to others who have been through a similar experience and local support group meetings can be found through the support organisations or your stoma care nurse. Don’t be afraid to use this help. Patients who actively seek out information about their condition and look for the support of others tend to cope better. Knowledge of medical conditions is not the exclusive domain of doctors and nurses. Next time you have a consultation, or clinic appointment, go armed with some questions, however basic, that you think would help you better understand your body and stoma. Far from seeing this as irritating, doctors and nurses are pleased to see their
patients taking responsibility for their health. This will also allow you to cope better if unexpected things do happen. On the subject of unexpected things happening, this is probably the greatest cause for concern among patients whose operation was recent. The fear of a leak happening when out and about can literally confine people to their houses. Practical issues connected to leakage can be addressed with a stoma care nurse, industry product specialists or representatives from one of the support networks. With the wealth of products available to us now, there is almost certainly something that can help. Rather than seeing an unfortunate event as a disaster and allowing yourself to get fixated on it, instead see it as a learning experience that you can use to prevent future such events. Visualise how you might have preferred the event to have worked out and focus on that outcome. Furthermore, think through how you might react if the worst did happen and you did have a leak away from home? You might think the world will come to a crashing halt and you will never be able to show your face in public again, but neither of those things will happen. A little preparation, a sense of humour and a few deep breaths are all you need to handle a crisis of this nature. Some people carry a ‘Can’t Wait’ card to grant easier access to toilets in public places. This can be reassuring to carry with you, but there is really no substitute to simply asking someone nicely if you can use their facilities. After all, everyone has to use the toilet sometime and we can all understand that need in others. Some people use disabled access toilets when out and about, as these can provide more room to deal with your stoma, and are more private.
Moving forward It can be tempting to focus on all the ways that having a stoma has changed you. Make a list instead of all the things about you that are the same as they were before surgery: your intelligence, personality and talents, to name but a few. These are the most important things about you and what make you who you are. Try not to over-identify yourself with your stoma. Terms like ‘ostomate’ or ‘ostomist’ can encourage the view that the stoma defines us, which, of course, it doesn’t. Think of yourself instead as a person with a stoma, just as you might be a person with asthma or someone who wears contact lenses. In these ways, the stoma can assume an appropriate status, allowing you to get on and enjoy your life ■
Key points ● There are methods and techniques to control your feelings and view your stoma in a positive light. ● Rather than focusing on how your stoma has changed you, think about the ways you have stayed the same.
Ostomy Lifestyle Helpline: 0800 731 4264 / 0118 324 0089 website: www.ostomylifestyle.org 6
CHARTER STOMA CARE ISSUE 35
Straight talking
Understanding what it means to have a Mitrofanoff pouch A Mitroffanof channel allows patients control over when they catheterise, but needs careful management. Sharon Fillingham gives you the details Surgery to create an internal urinary reservoir (in which the flow of urine can be controlled) that can be emptied through a channel using a urinary catheter was first made popular by the French surgeon Paul Mitrofanoff. This operation involves the formation of an internal reservoir and a ‘tunnel’ or channel to access it, created in the abdominal wall. One end of the channel is formed into a stoma that can be catheterised and at the other end the surgeon creates a nonreturn valve into the reservoir/pouch. The valve enables urine to be stored until the individual is ready to pass it via a catheter. This type of urinary diversion may be created for several reasons. These include bladder cancer, neurological disorders, congenital problems such as bladder exstrophy, severe incontinence and trauma. It is important that patients are individually assessed, as this is a complex operation with a high complication and reoperation rate. Patients should be provided with information in written formats such as leaflets, and should have the opportunity to watch a video or DVD about the subject. A face-to-face interview with the nurse specialist should also be arranged. This is major surgery and individuals having a continent urinary diversion formed should be prepared for a minimum of two hospital admissions and an adequate recovery period of up to three months.
Preoperative care Before surgery, patients will be assessed regarding their kidney (renal) function and be evaluated by the anaesthetist as to their general suitability for surgery. If they are prone to constipation the surgeon may prescribe a preparation for this, although this varies between urology centres and surgeons. The most common sites chosen for placing the Mitrofanoff channel are the navel (umbilicus) or the lower right abdomen (right iliac fossa ). This position will vary in accordance with the patient’s anatomy. It must be possible for the stoma to be seen and accessible. Special
CHARTER STOMA CARE ISSUE 35
attention will be given to those who use specific aids, such as a wheelchairs or crutches, for mobility. Moreover, care will always be taken to position the stoma in the most aesthetically pleasing position for the patient as possible.
Sharon Fillingham RN BSc(Hons) MSc Dip Counselling Urinary
Diversion Clinical Nurse Specialist, University College Hospital, London
The surgical procedure The reservoir can be created by using the individual’s native bladder or by augmenting the bladder with a segment of bowel: the ileum or colon. The reservoir can also be created completely from bowel and, if so, is usually referred to as a ‘neobladder’. A variety of tissues can be used for the tunnel and this will often depend on what is available from the patient. Commonly, the appendix, ileum or fallopian tubes are used. The channel achieves its continence (the Mitrofanoff principle) by forming an obstructed flap valve, which is directly tunnelled into the new reservoir. This valve prevents urine from leaking out of the reservoir through the tunnel.
After the operation As with all major abdominal surgery, patients will return to the ward with intravenous infusion to maintain hydration, wound drains, and possibly a nasogastric tube to drain the stomach contents. The wound drains will be removed when they cease to drain and the intravenous infusion and nasogastric tubes when normal bowel sounds return, wind is passed and adequate oral nutrition can be maintained. Pain relief is usually self-administered by a hand-pressed pump (known as patient-controlled analgesia). The patient will return to the ward with two catheters in place. One is inserted into the Mitrofanoff channel and the other placed above the pubic area (suprapubically) into the reservoir. Both of these catheters remain in place for six weeks. If the reservoir has been entirely created from bowel, the ureters from the kidneys will need to be sewn (sutured) into the new bladder. Stents (small tubes) will be placed into
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Straight talking the ureters to ensure they stay open (patent). Initially, these will drain most of the urine and will be gently removed after seven to ten days. Both catheters will be allowed to drain freely. If the reservoir has been partially or wholly made from bowel, there may be a significant amount of mucus produced. To keep the catheters patent, patients will be taught to ‘flush’ (wash out) the system at least twice a day. This is performed by using a bladder syringe and normal saline.
Discharge home It is essential that individuals are competent and confident with the management of the catheters before they return home for the six-week period between operations. Referral will be made to the local district nurses, who will generally oversee their care. The responsibility for the bladder washouts, however, will be with the individuals concerned. They will be taught to care for both the Mitrofanoff and the suprapubic sites and informed when to report any change in their appearance to their GP. One catheter will be left on free drainage at all times and the other will have a small tap or stopper (spigot) to control the flow, for ease of mobility. The patients will be taught how to recognise the signs of urinary tract infections, which include raised temperature (pyrexia), shivering, pain in the kidney area and badsmelling urine. The importance of requesting that their urine is sent for culture and sensitivity testing will be explained, as will the need for appropriate antibiotics. If the new bladder was formed either partially or wholly from bowel, the urine will always contain small amounts of the bacteria Escherichia coli (E coli), which is present in the bowel. This will result in a positive urinary ‘dipstick’ test. Unless the patient has symptoms of a urinary tract infection, the positive dipstick alone should not result in the doctor prescribing antibiotics until the urine is tested for culture and sensitivity. This will inform the GP of the type of infection and appropriate antibiotic choice. Research has shown that hippuric acid (found in cranberries) is effective in reducing the volume and viscosity of the mucus that is an ideal habitat for bacteria, particularly E coli. This is available as capsules or juice. Hippuric acid also has an effect on the clotting mechanism and should not be used by anyone taking warfarin unless discussed with their haematologist. During the time at home, the catheter draining the most urine will be left on free drainage via a leg bag or night bag and the other will be spigoted. A gradual return to normal activity can be encouraged by using a leg bag during the day. Patients should be supplied with contact details of the nurse specialist and surgical team. This type of surgical
Key points ● Patients who chose to have a Mitrofanoff pouch must have sufficient dexterity and motivation to self-catheterise via an abdominal stoma. ● Lifelong follow-up after surgery is required.
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Kidney
Ureter
Mitrofanoff channel
Reservoir Catheter
Figure 1. Diagram of a Mitrofanoff system procedure is uncommon and the patient and their support network of friends and family can often feel quite isolated, particularly if neither the GP nor the district nursing team have come across this operation before.
Trial without catheter A second hospital admission, which is usually only an overnight stay, will be arranged six weeks after the original operation. The purpose of this admission will be to teach the patient how to catheterise their new Mitrofanoff channel. On admission to the ward, the suprapubic catheter will be clamped or spigoted. The Mitrofanoff catheter will be removed. This either involves removing the stitches or deflating the ‘balloon’ holding the catheter in place. Usually, the specialist nurse will carry out this procedure and immediately re-catheterise the channel. The direction of the channel may differ from person to person and, therefore, the nurse will ideally be able to describe this direction to each individual patient. Patients will catheterise their own Mitrofanoff channel, using a clean single-use standard length catheter, size 12–14 ch (ch = Charrière, a measurement of diameter) with lubricant gel (see Figure 1). This procedure will be carried out at hourly intervals at first until confidence is gained. Overnight, the catheter will be secured into the bladder and put on a night drainage bag. The reasoning behind this is that the new bladder will need time to expand to its full capacity and so to prevent sleepless or disturbed nights. Once patients are competent and confident with catheterising, the suprapubic catheter is removed and they will be discharged. Written information will be supplied on what complications to look out for, how to obtain further supplies and when to seek more urgent help. The amount of mucus can be controlled by maintaining weekly washouts, which should be increased if a large amount of mucus is suspected. Mucus production can increase when someone is under the weather, has eaten or drunk a large amount of dairy products or fizzy drinks, or has a urinary tract infection. Failure to remove large amounts of mucus will increase the risk of urinary tract
CHARTER STOMA CARE ISSUE 35
Medical update infection and may lead to the formation of stones in the new ‘bladder’.
Charles Knowles provides an update on research findings in the field of stoma care Stoma management and high-output stomas
Pouch volumes and supplies It is important that the new bladder should be allowed to expand gradually. At first, it is unlikely that volumes of more than 150–200 ml will be stored before the need to catheterise is felt. Anyone with any sort of urinary diversion will be encouraged to drink around 2–2.5 litres of fluids a day (unless this is contraindicated because of their renal function). Ideally, the pattern of emptying will be between four and five hours and no more than six hours should ever elapse between catheterisations. Some patients may manage to have a good undisturbed sleep overnight, decreasing or restricting their fluids from the early evening. This may not suit everybody and it is up to each person to develop a pattern of fluid intake suitable for their lifestyle. Ideally, the pouch should not be stretched further than 600 ml capacity. Standard length catheters (40 cm) size 12–14 ch or above should be used. Below size 12 ch there is insufficient width in the catheter to expel the mucus either on ordinary drainage or during washouts. Single-use catheters, either used with lubricant gel or pre-lubricated, are available on prescription. Patients are able to obtain these catheters from a delivery service or via their local chemist on prescription free of charge, providing the relevant documentation has been completed with their GP’s practice. Catheterisation is regarded as a ‘clean’ procedure and patients must maintain excellent hand hygiene at all times during the process to avoid infection.
Perhaps the most significant contributions to the literature for the ostomate are the series of articles in a supplement to September’s issue of the British Journal of Nursing.1 These address stoma complications and their management and include much advice on lifestyle, diet, appliances and so on. I would suggest that the enthusiastic reader attempt to get hold of this supplement, which will be in most hospital libraries. Also of interest to some readers may be a recent review from Leicester2 looking at the cause and course of high-output stomas (defined as > 2 litres of effluent per day) in 717 patients operated on between 2002 and 2006. Seventy-five (16%) patients with ileostomy/jejunostomy had early high output, with this being significantly related to length of remaining bowel (< 200 cm: normal = 3–6 metres) and the presence of intra-abdominal infection/obstruction. Of these, 46 patients required long-term treatment with intravenous fluids or nutrition.
Urostomy care I have found an interesting article on urostomy from Sweden3 assessing the value of washing hands in 452 male and female patients with continent and non-continent urinary diversion. The article confirmed the increased incidence of urinary tract infections in patients who also had diabetes (double the risk) but did not show that washing hands before handling catheters or ostomy materials influenced infection rates. I am not of course advocating that patients should adjust their current hygienic practices on the basis of this evidence.
Possible complications
Stoma leakage
Before surgery, patients who are having a Mitrofanoff pouch formed should have been informed of potential complications. Before discharge, written information regarding complications should be supplied to patients and must include contact details for the specialist nurses and medical team. Broadly speaking, complications fall into two categories. The first group are those that require immediate attention from the specialist team, GP or local A&E department. These include symptomatic urinary tract infection, inability to catheterise the channel and pouch rupture (fortunately, this is a very rare occurrence). Others, such as leaking, gradual narrowing of the channel (stenosis), a build-up of mucus and the formation of bladder stones, will usually require review by the specialist nurses and/or surgeons and may need further surgery.
September saw the publication of a large Europe-wide metaanalysis (a way of putting data from separate studies together with the broad aim of improving evidence) assessing the link between diverting stomas and leak from the surgical join in the bowel (symptomatic anastomotic leakage) after rectal cancer surgery.4 Data from five large randomised cancer trials were pooled (Swedish, Dutch, German, European, Polish), giving a total of 5,187 patients. After a variety of exclusions, 2,480 patients were used in the meta-analysis. Around 10% were diagnosed with anastomotic leakage (itself a higher figure than previously assumed – I usually tell patients 5%). Diverting stoma, in practice usually a loop ileostomy, significantly reduced leak rates from 12 to 8%. Leaks did not affect cancer-specific survival as previously shown in other studies. The question of whether to always perform a diverting stoma remains; although stoma reduced mortality from leakage by one-third (6% versus 9%), this was not statistically significant ■
Follow-up Patients with reconstructed bladders will require lifelong follow-up with regard to their renal function. Blood tests to monitor their levels of urea, creatinine, sodium, potassium, bicarbonate, chloride and vitamin B12 will usually be taken annually. Ultrasound and X-ray of the renal system will provide information about the efficiency of bladder emptying, size and structure of the bladder and kidneys. Radiological tests will also show the presence of debris and stones ■
CHARTER STOMA CARE ISSUE 35
References 1. Stoma Care Supplement. Br J Nurse 2009; 18.17: S1–S22. 2. Baker ML, Williams RN, Nightingale JM. Causes and Management of a High Output Stoma. Colorectal Dis 2009. (Epub ahead of print.)
3. Thulin H, Steineck G, Kreicbergs U et al. Hygiene and urinary tract infections after cystectomy in 452 Swedish survivors of bladder cancer. BJU Int 2009. (Epub ahead of print.) 4. Den Dulk M, Marijnen CA, Collette L et al. Multicentre analysis of oncological and survival outcomes following anastomotic leakage after rectal cancer surgery. Br J Surg 2009; 96: 1066–1075.
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
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Practical care
Simple tips for ensuring you get a good night’s sleep Many ostomists worry about leakage in the night, affecting their sleep. Toni Johnson gives some straightforward tips to help you feel more secure and sleep better Toni Johnson DipN SRN ENB980/998
Stoma Care Nurse Specialist, Homerton University Hospital, London
It is very common for people with a stoma to have concerns about how they might get a good night’s sleep. The main worry of many ostomists is leakage – this concern creates anxiety about soiling the bed, disturbing a partner or the household at night, and interrupted sleep. To help reduce these concerns and anxieties, there are a few practical steps you can take before bedtime to ensure a restful night. A regular routine before bed will help reduce anxiety and ensure a peaceful night’s sleep. Before going to bed, check that your stoma pouch is secured in place with no creases or wrinkles on the flange (the base plate that adheres to the skin). The reason for this is that if a leak does occur, it will happen at the point of least resistance – a crease or wrinkle. Check if the pouch needs to be emptied (ileostomists and urostomists) or change it (colostomists). Urostomists are advised to attach a night drainage bag; this allows extra drainage capacity and alleviates the need to get up every few hours for emptying. It is also advisable to both attach the night drainage bag to a stand and secure the tubing with a leg strap to prevent kinking or detachment of the night drainage bag. There are several stoma care companies that provide these products: Coloplast provides anti-kinking urostomy tubes; stands and straps are also available from other companies. Another tip is to wear comfortable nightwear, such as pyjamas or underwear, to help keep the pouch in place; this will stop bed friction on the pouch while turning or changing position in bed.
Dietary considerations Wind and faeces passing into the pouch at night can be a problem, causing the need to empty or change the pouch, leading to a disturbed night’s sleep. To stop or reduce the production of wind or faeces, we need to look at diet. It is best not to eat your main meal late in the evening: eat no later than 6 to 7 pm. When we eat, we stimulate our intestines to work, leading to a bowel action. The later you eat, the more likely you will have
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to get up in the night to empty or change your pouch. It is best to avoid having a heavy meal in the evening: if possible, have your main meal at lunchtime. Everyone’s lifestyle is different, but do look at your habits and see if you can make some changes to ensure uninterrupted sleep. Some ileostomists find their stoma is prone to be more active at night. Another handy tip is taking a dose of loperamide (Imodium®, Janssen-Cilag, UK) 2–4 mg before bed, which helps slow the gut action down, ensuring a peaceful night. If you are not happy taking an additional medication, then try eating a few jelly babies or marshmallows before bed, as these can have the same thickening effect on the stool. Loperamide is only suitable for faecal stomas that are producing a liquid stool.
Further concerns Many ostomists sleep on their stomach. After surgery, it may be uncomfortable to lie on your front, but this will improve. Try placing a small pillow or rolled up towel on the side that has the stoma. This will prop you off your stoma a bit and allow you to sleep mostly on your stomach. If you are still concerned about bed soiling and damaging the mattress, and would feel more secure at night knowing the mattress was protected, a wide range of covers and protectors are available. If you continue to have stoma problems that hinder sleep, contact your stoma care nurse, who will be able to discuss your problems and suggest an individualised plan ■
Key points ● Ostomists often worry about night leakage, but there are ways to feel more secure. ● It is very important to ensure that your pouch fits securely, without creases or wrinkles.
CHARTER STOMA CARE ISSUE 35
Experience the benefits of using Charter Healthcare’s award-winning service Charter Healthcare provides a discreet, confidential service for delivery of your stoma care products. Here is a little more about what we have to offer
Our dedicated customer care team has won a wide range of awards for excellence in customer service
At Charter Healthcare, we are proud to offer the best in home delivery and service for all your stoma care products.
Placing orders We know from listening to our customers that an efficient, easy to use and discreet delivery service is required. Our award-winning, experienced customer care team is ready to take your call and ensure the delivery of your products, usually within 24 hours. Just call us on Freephone 0800 132 787.
Providing products Upon registration we are pleased to send you a specially designed Charter Healthcare Bag so that everything you need to care for your stoma can be kept in one convenient place, even when you are away from home. As a leading home delivery service, we will also send you complimentary items, such as scented disposal bags, wet and dry wipes and a water spray, with every order you place.
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If required, we can cut your stoma product to the exact size of your stoma; just send us your template and we will do the rest. For your convenience, we also have extended opening hours, so you can call us – even on a Saturday – and we will be happy to take your order.
Contact us Freephone: 0800 132 787 www.charterhealthcare.co.uk Opening hours Mon – Fri: 8 am – 6 pm Sat: 9 am – 2 pm
Customer feedback We are delighted that our customer feedback is so positive – just look at the quotes below:
❛ I am amazed by your efficiency! One short phone call and my goods were with me in less than 24 hours. Thank you indeed Mr JS
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❛ Charter Healthcare: wonderful staff have talked me through many difficult times, have always been so kind and understanding and helpful Mrs DF
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Emotional support
Sexuality and stomas: your partner’s perspective Adapting to the effect a stoma will have on your sex life may be difficult for both you and your partner. Here is another chance to read Tim Norton’s discussion of the topic Tim Norton BSc(Hons) Dip Human Sexuality RMN
Senior Lecturer and Cognitive Behavioural Therapist, University of Cumbria, Lancaster
It can be devastating to accept that your body has been drastically changed, either temporarily or forever, although adjusting sexually is no different from adapting to all the other changes. But what about your husband, wife or partner? How will they adapt?
Although the national average for sex is deemed to be once or twice weekly, few couples can claim to be completely average. Some people find a kiss and a cuddle before falling asleep is very comforting, and leads to sexual intercourse occasionally. Others feel a need for more regular sexual activity, lasting several minutes or hours or somewhere in between, several times each week. Sex is extremely popular, so, not surprisingly, you may experience doubts and uncertainties about the implications of stoma surgery, especially as it seems to be hazardously close to the sexual area of the body. Your ability to have intercourse will be affected by your general health, the stress of the illness and the effects of the operation. In general, sexual activity may be resumed six weeks after surgery, if this is acceptable to you and your partner. While any sexual relationship could be improved by talking about what is good and not so good, this may not be seen as important, and anyway it involves the use of awkward language and intimate details. However, after a stoma operation, many conversations about previously taboo subjects become necessary. This is an ideal time for you and your sexual partner to introduce any worries about sex. You may share strong feelings of disgust in relation to the appliance; concerns about the odour; fears that it will be impossible for you to lie on one another without squashing and bursting the stoma bag. Thoughts along these lines may provoke distasteful images and ideas that prevent your partner becoming fully relaxed. The very fact of knowing your sexual partner so well can actually make it more
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DOUGAL WALTERS
Worries about sex and having a stoma
It can be easier to have intimate conversations away from the home setting difficult to talk about such things. There is an expectation and dread of what their response will be and, therefore, a reluctance to broach the subject. Before long, both partners in the relationship can become tense and upset, not only by the surgery but also the after-effects of the operation.
Physical problems These anxieties may be compounded by the belief that further harm will be caused; that there will be a risk of infection or that the partner who has undergone surgery will not want sex. Couples who know each other well are affected by each other’s well-being and loss of sexual confidence; a change in the way the stoma patient sees themselves can affect the partner also. Men who have undergone stoma surgery may have difficulty gaining or maintaining an erection. This embarrassing personal subject can often be treated, yet it can lead to an avoidance of sex and
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Emotional support communication with the very person who could be most understanding – their partner. For women after stoma surgery, the vagina may be scarred and narrowed, making intercourse painful. Again, her sexual partner can help, understand and encourage her to seek help from medical professionals.
Help is available However good a long-standing relationship is, sexual problems can and do happen. When this is due to drastic surgical changes, then talking it over together can be challenging. Help is available and this is often best sought from medical or nursing staff who are already familiar to you. Really, sex is for anyone who wants it and bodily changes need not get in the way – although it may take some imagination to work around the practical difficulties and some clear thinking to deal with the negative thoughts that get in the way. It can be difficult to consider someone with a ‘disability’ as a sexual being. However, it is the individual’s bowel that has been removed, not their desire or their sex drive! Psychological or psychosexual problems can develop as a result of anxiety or depression about physical and relationship changes. You may find it hard to acknowledge such symptoms. But you only need to seek help and these problems can be treated with psychosexual therapy.
Practical advice to help you cope As with any emotional difficulties, talking and listening are the main approaches to resolving problems. The changes to the dynamics in your relationship that can result from a life-threatening or chronic illness may lead to frustration and misunderstanding. Patient, non-judgemental listening is vital to the strength of any relationship and this is no less true for the couple affected by a stoma. Learning to communicate effectively takes time. Perhaps your partner may find it beneficial to seek counsel outside the relationship. It is well documented in healthcare professions that the question, ‘Who cares for the carers?’ is not always adequately addressed. The very people who are expected to be strong and supportive also have their own emotional and sexual needs. Within your relationship, you may need to plan for an opportunity to have an easy and meaningful conversation
Key points ● Worries that you may have about the implications of your stoma surgery for your sex life are natural and can be eased by talking them through. ● There are strategies that can help you communicate with your sexual partner – it is important to avoid ignoring the problem altogether. ● Professional advice can help you both to overcome the issues involved.
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about sex. This involves finding the courage to raise the subject if sexual needs are not being met and putting time aside, probably away from the home setting, to talk uninterrupted. Because of the intimate nature of the conversation, a country walk may be preferable to speaking openly in a crowded pub!
non-judgemental ❛ Patient, listening is vital to the strength of any relationship
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A strategy that can aid communication is this: allow one person only to speak for two to five minutes, then the other to summarise and repeat to ensure they have listened and understood accurately. Agreement can be made to listen and not to comment other than to clarify issues. These strategies are used in couple therapy where it is noted that distressed couples are so keen to make their own points, usually criticisms, to the other that they are oblivious to the things that are being said to them. Some key topics may need more working through, but it is debatable whether long arguments or long silences have any value in a committed relationship. Although it may seem a little strange for you, writing to each other may be an easier way to communicate strong heartfelt feelings; these could be in the form of letters, emails or mobile phone texts. Telephone conversations or arranging to meet as ‘strangers’ arriving from different directions can alter the relationship dynamics and make constructive conversation possible. To enhance an essentially strong sexual relationship that has been affected by stoma surgery, try focusing on what works and what is good for you. Now may be a time to consider ways to heighten arousal through the use of sex aids, or toys such as vibrators.
Improving self-belief Taking time to increase your self-belief as a sexual being is important for anyone who wants or is in a sexual relationship. This becomes especially important when your sexual self-esteem has taken a battering. Pamper yourself with a luxurious candlelit bath; slowly undress and self-examine with hand and full-length mirrors; use self-stimulation to enjoy the sexual feelings it produces. This can build sexual confidence, while recognising that we are appreciated as sexual partners for who we are, what we are like and what we can offer. The aspects of our partner or ourselves that are not pleasing to the eye need not detract from our appreciation of them or ourselves as complete and whole beings. Beyond this, if sexual difficulties persist, whether physical and/or emotional, it is important to remember that help is available. Finding the courage to ask for help is not easy, but the embarrassment factor is short-lived; the benefits to a loving relationship are immeasurable and can be long-lasting ■
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Resources ■ NACC
The National Association for Colitis and Crohn’s Disease (NACC) was set up in 1979 as a partnership between patients, their families and the healthcare professionals who care for them. As a UK-wide charity, NACC now has 30,500 members, 70 local groups and over 1,000 active volunteers. Since its formation, the charity has helped many thousands of people with inflammatory bowel disease by (IBD): • Providing support and information for IBD patients and their families • Raising public and political awareness of IBD • Striving to improve healthcare services and provision for IBD • Influencing the attitudes of society to achieve positive change for those affected by IBD
• Promoting research into all aspects of IBD and how they affect people’s lives. NACC welcomes as members anyone who has ulcerative colitis or Crohn’s disease, their families and friends, and healthcare professionals. Its national information and support services are available to anyone who has been affected by IBD. Contact details: Information line: 0845 130 2233. NACC in Contact support line: 0845 130 3344. Membership and administration: 01727 830038. website: www.nacc.org.uk
■ Ostomyland
Ostomyland is an online ostomy support community that aims to offer information, support and advice to ostomates of all ages in a friendly and safe online atmosphere. The site features a 21-chapter lifestyle guide, manufacturer listings, forums that include member photo galleries, ostomy diaries, and a 24/7 chat room with weekly support meetings. Ostomyland recently had its 12th birthday, and to celebrate this milestone we launched a major update to our ‘Ostomy Wiki’. The wiki now features over 275 pages of ostomy information, and is a continual work in progress. Many members think of Ostomyland as like a second family, as they have made lots of friends within our community, but you don’t have to make a huge commitment to be part of our community either. You can just post when you
need help, or you can stay and make some friends. Without our members, we would never have reached this amazing 12th birthday milestone. Over the years, we’ve seen members arrive in need of support and advice, and over time they’ve found their feet and their confidence, and now they are the ones giving the advice to today’s new members. Indeed, it’s not uncommon for reversed ostomates to continue to support our other members long after they’ve had their own stoma reversed – Ostomyland wouldn’t be the same without them. So, why don’t you come and check us out? We’d love to welcome you! Contact details: Jason Dale, Colostomate and Site Owner. website: www.ostomyland.com email: webmaster@ostomyland.com
■ Depression
Depression Alliance (DA) is the leading charity in England dedicated to people with depression, with over 3,000 members. DA has been in existence for over 25 years. We are a memberoriented charity and focus our efforts on sharing and promoting good practice, providing support, practical advice and activities that can make a difference to people with depression. Our work challenges the stigma around the condition. We promote and encourage research into the cause and prevention of depression and the dissemination of the results of such research. We run self-help groups, provide a quarterly newsletter to all members, and publish leaflets on depression and related topics.
Our website receives 50,000 hits a month; we have information on treatment for depression, and DA Talk, a self-help chat room open only to members. We arrange a pen friend scheme whereby people with similar interests write to each other and organise the Employment and Wellbeing project ‘time bank,’ where people with depression support others by trading skills and offering practical support, and Depression Awareness Week: an annual national campaign that highlights specific topics on depression. Contact details: Tel: 0845 123 23 20. email: info@depressionalliance.org website: www.depressionalliance.org
Alliance
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Forum
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 Tina Lightfoot RGN MSc Editor
of positive thinking (page 5) may also be of use, with its practical suggestions ■
I feel quite alienated with the fact that I just cannot accept my permanent ileostomy, which I have had to endure for about 12 years now. It was an emergency decision, as I got so ill from my Crohn’s disease very quickly and after many major operations I had to, eventually, have my rectum removed. All I seem to read are articles about people who name their stomas and are very happy with living with them. Well, I am not happy at all and cannot face changing my appliance, so I leave it to the very last minute. Maybe it might be an idea for you to have an article about people who cannot accept their ostomies – the anguish they go through and some suggested ways of coping? Maybe I am not in the minority. It would be nice for others who feel the same way to know that they are not alone with their feelings.
Please would Charter consider featuring an article on blockages and adhesions? I have just returned from holiday, where I spent three days in hospital with a suspected blockage. The whole experience was very frightening. The consultant fortunately performed ‘suck and drip’ and it seemed to do the trick. However, he was rather eager to try other things, one being an operation, but I would not agree to this unless things had gone drastically downhill. I did not know what knowledge he, or the hospital in Mauritius, had of this problem. I have had my ileostomy for 11 years and have no other problems to date. Could it have been dehydration due to the flight and/or hot weather? Or was it just because of the food? I have made an appointment to see a gastroenterologist.
Mr K (via email) I am sorry that you have found it so hard coming to terms with your stoma. There is no doubt that such major surgery is a lifechanging event and, as with all things like this, some people find it easier to deal with than others. I do think that this is where support groups can help, as meeting with people who understand what you have to deal with can be so supportive. You may also find it helpful to talk through your feelings with a counsellor. Counselling can help you understand why you feel the way you do, as well as helping you to identify strategies for coping. Helen Farrell’s article in this issue on methods
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Charter
Ms M (via email) Adhesions following any abdominal surgery are very common. In most instances, the management you had is sufficient and
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: edit@hayward.co.uk
patients rarely need further surgery. It can, however, be frightening, as you say. It is hard to tell what may have caused this episode. I do agree with you that an article on this particular problem will be helpful to many of your fellow ostomists. I will organise something for a future issue ■ Having read the letter from Mrs IF (CSC 32), I would like to say that I too have a very high stoma. I have had it for three years and have not had a problem with clothes as I always wear a camisole, so if things ride up nothing can be seen. I tend to mostly wear things with a pattern, as these seem to disguise better than plain colours. Crossover tops are good – they seem to have some gathering. Of course, there are always tops with an empire line or those that gather under the bust.
Ms W (via email) Thank you for your letter. I am sure others will find these suggestions extremely helpful ■ We went to Vermont last October to see the New England autumn – beautiful. I did find the ‘disabled toilets’ quite basic – wide, yes, but no real space to lay your bag out etc. We went to the Rockefeller Center in New York – I went into a shopping mall opposite – a nightmare. They would not let me use the disabled toilet; no one could find a key. I ended up in a normal gents’ loo. I had also been refused by a leading hotel as I was not a customer, so was not impressed with American hospitality that day. Not sure if your mailing list includes GPs – so I ‘recycle’ mine by leaving it with the magazines.
Mr R (via email) Many thanks for your interesting reflections on toilet facilities ‘across the pond’. There is no doubt that poor facilities leave a lasting impression, often far more than magnificent scenery or beautiful weather. Sadly, good facilities cannot be guaranteed and one has to hope for the best and improvise if necessary, otherwise we’d not go beyond our front doors. It’s a nice idea to recycle your issues of Charter stoma care by leaving them in your GP’s surgery. Your stoma care nurse may also be able to make use of them ■
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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. The Coloplast logo is a registered trademark of Coloplast A/S. Š [2010-03.] All rights reserved Coloplast A/S, 3050 HumlebÌk, Denmark.
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19/04/2010 10:50:30