Contacting your local stoma care nurse … page 5
Looking at adhesions and how they are treated … page 12
Issue 36 Autumn/ Winter 2010
stoma care
Coming into the light One patient’s experience of having a colostomy
Committed to meeting your need for quality products and services
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Contents
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Practical care The availability of stoma care nurses in the UK by Katie O’Grady Medical insight Reviewing treatment for colon, rectal and bladder cancer by Amen Sibtain Perspective My experience of colostomy by Bob Buckley
Coloplast 11 With the right support, anything is possible by Charlie Currie Straight talking 12 What are intestinal adhesions? by Andrew R Davies and Michael Parker
Comment
Facing an uncertain future I’m writing this editorial on the day we have heard that the rescue team has broken through into the mine where the Chilean miners have been trapped. They still have to secure the escape shaft and winch the miners to safety. By the time you read this, we will know whether they were successful and if all of the trapped miners were safely delivered back to their families, but for now, all I can do is hope and pray for them as, at present, their future is uncertain.
Upcoming changes in the NHS Another uncertainty, one that is likely to affect all of us more directly, is the cuts in spending, which the government is due to announce – sadly after the deadline of this editorial. There are, of course, some certainties about the cuts. Primarily, we know that there are going to be cuts in public spending; it is apparently unavoidable. The government has promised that spending on the NHS There are will be protected and has going to be cuts recently announced in public spending; additional funding for bowel cancer screening, it is apparently which is excellent news. It unavoidable has also been suggested that GPs take a greater control of their budgets. How might this affect people with stomas? I know that GP fundholding (remember that?) had no detrimental effect on the provision of stoma care and appliances but things may be different this time. Primary care trusts up and down the country have already begun a consultation process to identify the most cost-effective stoma and continence products for their GPs, with the intention of producing a limited formulary from which GPs can prescribe, as they believe that great savings can be made by doing this. Stoma care nurses have been very proactive in ensuring that the needs of individual stoma patients are understood and met. They have, where possible, influenced these
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14 Resources Forum 15 Your questions answered
Cover photo: IMAGE SOURCE/GETTY IMAGES
CHARTER STOMA CARE ISSUE 36
Continued overleaf 3
consultations to guarantee that, as stoma patients, you will continue to get access to the products you trust. I have no doubt that when GPs have responsibility for 90% of their budget, which will include the prescribing budget, they will be looking at where savings can be made. What can you do to ensure your GP understands your needs and provides you with appliances that suit you? As an individual, you may be one of only four or five stoma patients on your GP’s list. If you are well, and see your stoma care nurse if you have a problem, the GP is unlikely to fully understand your needs; they will simply be signing a prescription for stoma products on a regular basis. The first thing I would suggest is to ensure that you are not ordering unnecessary quantities of stock. Both chemists and delivery services are usually able to get stock to you within a week, so the advice we normally give would be to order no more than two boxes at any one time and renew the order when you commence on the second box. This has several advantages – it takes up less space, the stock is fresh, and, if you should need to alter your appliance for any reason, there is minimal waste. Keep accessories to a minimum and don’t routinely order them when ordering new appliances. You would be amazed at the amount of stock returned to us (which we then send to the developing world). Ensure you maintain a relationship with your GP or practice nurse so that they do understand your requirements. If you consult your stoma care nurse, ask them to write to your GP so that the consultation is recorded in your file (many will already do this). We have been promised that there will be no cuts to frontline services in the NHS, and I hope and pray this will be the case, but we all have to play our part. I hope you enjoy this issue of Charter stoma care, and may I take this opportunity to wish you all the best for Christmas and the New Year. 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. Sales Director Ian Arkless. Managing Editor Robin Jones. Chief Sub Joel Barrick. Senior Sub Editor Anne-Claire Bouzanne. Editorial Assistant Jessica Atkey. Art Editor Richard Seymour. Publications Co-ordinator Hayley Mayes. 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 2045-0826. Printed by Turners.
CHARTER STOMA CARE ISSUE 36
Practical care
The availability of stoma care nurses in the UK A specialist stoma care nurse can be of great help in managing your stoma, and you should be able to find a nurse near you. Katie O’Grady gives some hints Five areas in the UK do not have a stoma care department at their local hospital, but most of you should be able to get access to a stoma care nurse in your area. I have worked as the stoma care secretary for Gloucestershire Hospitals NHS Foundation Trust for three years. After working in the post for a year it became clear that an up-to-date directory of UK stoma care nurses was needed. An up-to-date document would mean ease of referral, saving time when transferring patients to other areas in the country. My first task was to contact all of the hospitals in the UK using information from NHS Direct. I then called each trust or hospital and asked for the contact details for the stoma care department. Once I had collated this information I sent each department a letter asking them to confirm their details and if they were happy to be in the directory. It took approximately one year to compile the original directory, as I had to do this when workload allowed. Six months from sending out letters, the finished document was being sent out.
Stoma care nurses in the UK England
The stoma care nurse directory I compiled shows that in England, two counties have no stoma care department. However, these areas have a hospital within the same NHS trust that has a stoma care department that provides cover to those counties without their own stoma care departments. It is possible that this hospital will be some distance from you, but the stoma care nurse may offer community clinics closer to your area.
Scotland
Of areas in Scotland, the Orkney Islands and Shetland Islands – which have small populations – do not have a stoma care department, though these areas do have community and district nurse teams and link
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nurses at their hospitals. There is a stoma care nurse on the Western Isles at The Western Isles Hospital in Stornoway.
Wales
In Wales, one county does not have its own stoma care nurse, although this area is still covered by a stoma care department from a different hospital.
Katie O’Grady Stoma Care Secretary, Gloucestershire Hospitals NHS Foundation Trust, Gloucestershire
Northern Ireland
In Northern Ireland, researching for my directory revealed that all counties have a stoma care nurse. Overall, ostomists in England, Scotland and Wales appear to have good access to a stoma care department. This department may not be in your local hospital, but a stoma care nurse from another hospital may hold clinics there.
How can you find a stoma care nurse in your area? If you have lost contact with your stoma care nurse, moved to a new area or are unsure of where your nearest clinic is, the easiest way to find out would be to call your local hospital or NHS trust directly and ask them for the stoma care nurse’s phone number. If there is not a stoma care nurse at your local hospital, then call the next nearest hospital and so on. The telephone numbers of all hospitals can be found on their own websites, in your phone book, from Directory Enquiries or from NHS Direct and NHS Choices (www.nhsdirect.nhs.uk or www.nhs.uk) ■
Key points ● You should be able to find a stoma care department near you, even if the nurse is not based in your local hospital. ● The easiest way to find your stoma care nurse is to simply call the hospital and ask for his or her phone number.
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Medical insight
Reviewing treatment for colon, rectal and bladder cancer Treatment for colon, rectal and bladder cancer varies depending on the severity of the disease and the patient’s fitness. Amen Sibtain discusses the treatment options Amen Sibtain MBBS MD MRCP FRCR
Consultant Clinical Oncologist, Barts Hospital, London
Modern cancer therapy often involves the combination of different types of treatment. Broadly speaking, these are surgery, radiotherapy and chemotherapy. This article will focus on radiotherapy and chemotherapy, first discussing each modality then discussing their particular roles in the treatment of colon, rectal and bladder cancer.
Radiotherapy Radiotherapy is the use of X-rays to treat disease. X-rays are simply a form of energy like heat or light. This type of energy is a combination of electrical and magnetic forces and is called electromagnetism. Generally, this type of energy tends to behave as waves. The frequency and wavelength of these waves is linked to the behaviour of this energy. Electromagnetic waves with a long wavelength and low frequency are radio waves. The spectrum covers light, then microwaves, and at the highest frequencies are X-rays. At this part of the electromagnetic spectrum, the energy tends to behave as particles.
How is it used?
Radiotherapy is the delivery of this energy into cells. The energy has a particular quality in that it is able to turn atoms/molecules into ions. These ions can then react with other atoms or molecules. Water is the most abundant molecule in cells. The ‘ionising’ energy can turn some of these water molecules into what are called ‘free radicals’. These are a type of ion that is very reactive and can bind strongly to other molecules. This binding damages the structure of various parts of the cell, the most vulnerable of which is DNA. A reasonable amount of DNA can be repaired by the cell, but if the damage is too extensive, the DNA is unrepairable. This makes it impossible for the cell to divide and the cell then dies.
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STEVE GSCHMEISSNER/SCIENCE PHOTO LIBRARY
What is radiotherapy?
Bladder cancer cells dividing. Chemotherapy before surgery has been shown to improve bladder cancer survival
The likelihood of the DNA damage and thus ‘cell kill’ is proportional to the amount of energy that is deposited in the volume of tissue. The greater the amount of energy, the greater the cell kill. Therefore, the principle of radiotherapy is to deliver as much of this energy as possible to the target, while minimising the amount of energy to surrounding tissues and organs. This concentration of energy to a defined region is achieved in a number of ways. By directing beams at the target from different directions, the tissue in the path of each beam receives a relatively low dose, but the region where they meet receives energy from all the
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Medical insight Table 1. Common chemotherapy agents in bowel and bladder cancer with selected specific side-effects Drug
Use
Specific side-effects
Fluorouracil
Colorectal cancer
Sore mouth, diarrhoea, sore hands and feet (palmar–plantar syndrome); rarely, effects on heart
Oxaliplatin
Colorectal cancer
Cold-stimulated tingling in hands, feet and throat
Irinotecan
Colorectal cancer
Hair loss, diarrhoea
Capecitabine
Colorectal cancer
As with fluorouracil
Methotrexate
Bladder cancer
Sore mouth, diarrhoea
Vinblastine
Bladder cancer
High blood pressure, tiredness, constipation
Doxorubicin
Bladder cancer
Hair loss, effects on heart
Cisplatin
Bladder cancer
Effects on kidneys
Gemcitabine
Bladder cancer
Fluid retention, rash
beams and has a consequently higher dose. Alongside this ‘multibeam’ treatment, each beam is accurately shaped to match that of the target, minimising the dose to normal tissue further. This means the deposition of high energy moulds to the shape of the tumour. Another way in which the effect of radiotherapy on the tumour (and not the normal tissue) is maximised, is by giving the treatment over a number of days. If radiotherapy is given in a number of small doses, one each day, then the normal tissues are able to efficiently repair the damage to their DNA. Cancer cells, however, have inefficient repair mechanisms and so are affected by the DNA damage to a greater degree. Radiotherapy is delivered on machines called linear accelerators. They produce X-ray beams that have a very high energy. High-energy X-rays have effects on cells, in contrast to low-energy X-rays that have virtually no effect. Low-energy X rays are the ones that are used in imaging.
Chemotherapy What is chemotherapy?
Chemotherapy is anticancer medicine. There is a variety of drugs, each of which works by affecting the way that cells divide (see Table 1). Most chemotherapy is in liquid form and given intravenously through a cannula, which is a fine tube inserted into the vein. Some chemotherapy is now given in tablet form, which is certainly more convenient.
How is it used?
Given that chemotherapy is carried around the whole body by the bloodstream, and that it works by affecting cell division, the side-effects stem from the parts of the body that have a high cell turnover. The bowel can be affected by diarrhoea, and soreness of the mouth can occur. The production of blood can be affected. This is most important with respect to white blood cells because they are involved in fighting infection. If the white blood cells are low in number,
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then defences are lowered and infection can become dangerous. If this occurs, then intravenous antibiotics are usually given urgently. Chemotherapy can also cause nausea and vomiting, which are controlled with anti-sickness medicine (antiemetics). Fatigue is another common problem, and research on how best to tackle this is ongoing. Currently, light-to-moderate exercise seems to be the best way to minimise this effect.
Biological agents In recent years, drugs that work by interfering with specific functions in the cancer cell have been developed. The two most common ones used in bowel cancer are called cetuximab and bevicuzimab.
Cetuximab
Cetuximab prevents a protein, called epidermal growth factor, from binding to its ‘docking bay’ on the cancer cell surface. This prevents its normal function of stimulating cell division. Cetuximab has been approved by the National Institute for Health and Clinical Excellence (NICE) for the treatment of colorectal cancer when the liver is the only site of spread.
Bevicuzimab
Bevicuzimab inhibits the function of vascular endothelial growth factor, preventing necessary blood vessel formation by the tumour. These drugs are used in combination with conventional chemotherapy agents and have shown some advantages in certain situations. Bevicuzimab has not been approved by NICE.
Bladder cancer Chemotherapy
The main chemotherapy regimens used in bladder cancer are MVAC (methotrexate, vinblastine, doxorubicin, cisplatin in combination) and gemcitabine and cisplatin
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Medical insight in combination. The latter combination is thought to have fewer side-effects and to be generally as effective.
Neoadjuvant chemotherapy
Neoadjuvant chemotherapy is the term used when chemotherapy is given before surgery. The aim is to treat undetectable cancer cells remote from the known tumour. This approach improves cure rates when compared with surgical removal of part or all of the bladder (cystectomy).
Adjuvant chemotherapy
Adjuvant chemotherapy is the term used when chemotherapy is given after surgery to treat undetectable cancer cells left behind or remote from the original tumour. Giving chemotherapy after surgery in this way is not routinely used in bladder cancer, as there is no good evidence it improves cure rates, in contrast to colon cancer.
Palliative chemotherapy
Chemotherapy is also used when the aim of treatment is to shrink and control the tumour to improve symptoms rather than eradicate it completely. The gemcitabine and cisplatin combination is often used as it is well tolerated.
Radiotherapy
Radiotherapy is the main treatment for bladder cancer other than cystectomy. The advantage is that the organ is conserved – the bladder is kept – avoiding the need for either a urinary diversion or formation of a bladder from other organs. There are no studies comparing the cure rate of radiotherapy with that of surgery. Often, radiotherapy is done first, saving surgery as a back-up if the disease returns locally. When radiotherapy is given with the aim of cure, it is given daily, Monday to Friday, over four to six weeks. The side-effects include fatigue, urinary frequency and pain or burning when passing water. Some may get diarrhoea or some blood in the urine.
Key points ● Cancer treatment often involves a combination of surgery, radiotherapy and/or chemotherapy, and sometimes uses biological agents, which are drugs that interfere with specific cell functions. ● Different treatments are used for bladder cancer and for colon/rectal cancer. ● Chemotherapy tends to be given before surgery (neoadjuvant) for bladder cancer, but after surgery (adjuvant) for colon/rectal cancer. ● Radiotherapy is the main treatment for bladder cancer other than removal of the bladder, and is commonly used before surgery in rectal cancer.
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Radiotherapy can also be used to shrink and control the tumour and improve symptoms it may be causing. For example; it can help stop bleeding from bladder tumours. It can also be given to areas to which the cancer may have spread. When radiotherapy is used in this way, it is given over a shorter period of time than when cure is being sought.
Colon and rectal cancer Neoadjuvant chemotherapy
Studies are under way to test whether chemotherapy alone given before surgery improves outcomes in cancer of the colon. This approach is as yet unproven. In rectal cancer, preoperative treatment is established, but this involves both radiotherapy and chemotherapy given together or radiotherapy alone.
Adjuvant chemotherapy
Chemotherapy is often given after surgery for colorectal cancer, to treat microscopic disease remote from the primary tumour. If cancer cells are found in lymph nodes in the sample of tissue that is taken to check for cancer (the resection specimen), then the risk of recurrence is high enough to justify chemotherapy, and there is ample evidence that it does improve the probability of cure. Patients need to be relatively fit to tolerate a course of chemotherapy, which usually lasts six months, given the potential side-effects.
Radiotherapy
Radiotherapy is often used to to treat rectal cancer before an operation. It can be given in a ‘short course’ over five days, or over a longer period of five to five-and-a-half weeks. Chemotherapy is given at the same time when the long course is used. The short course is employed when scans suggest the tumour can be relatively easily removed with a safety margin of clear tissue around it. Studies show that this can reduce the risk of the disease returning in the pelvis. The operation is done within a few days of the end of the radiotherapy. The longer, five-week, course of chemotherapy and radiotherapy is used when scans suggest the tumour cannot be easily removed with this safety margin. The combination of radiotherapy and chemotherapy shrinks the tumour before the operation so the safety margin can be achieved. The operation is performed six to 12 weeks after the end of the treatment to allow tumour shrinkage to continue. This approach substantially reduces the risk of recurrence and increases the curability of the surgery. Radiotherapy can also be used to shrink and control rectal tumours to improve symptoms they may cause. Common problems such as pain, bleeding and the sensation of the need to defaecate can all be improved by radiotherapy. Radiotherapy has little role in treating colon cancer, mainly because the nearby small bowel limits the dose that can be given. It is occasionally used postoperatively when a tumour adheres to the side of the abdominal wall or to try and reduce bleeding from a tumour when an operation is not possible ■
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Perspective
My experience of colostomy Bob Buckley was otherwise fit and healthy when he was diagnosed with rectal cancer. He explains how a colostomy and a supportive family restored his health ‘Out of darkness, cometh light’ is the motto of my football team Wolverhampton Wanderers and, although it hasn’t always fitted to The Wolves’ performance, I feel it describes my journey. It is fair to say that I have never taken my health for granted. At 57 years of age, I was still very fit. I ran 30 miles per week, visited the gym and was a non-smoker. I tried to eat healthily and loved fruit and veg. I enjoyed a glass of wine or a couple of pints but that was the extent of my drinking and I only very rarely visited the doctor.
A colostomy does not have to have a negative impact on your lifestyle
I noticed a small amount of bleeding when visiting the loo. The campaign to raise awareness of bowel cancer must take credit for me deciding this wasn’t right, as I went to see the doctor when normally I would ignore what I considered to be minor symptoms. The doctor examined me, tried to convince me it was probably haemorrhoids, but referred me anyway. For my first hospital appointment, my wife Margaret asked if she should accompany me, to which I replied something like, ‘No it’s OK. I’m sure they’ll give me some cream and tell me to stop wasting their time’. The consultant gave me the time-honoured examination and then started to worry me when he said he wanted to put a camera up my ‘back passage’ to have a more detailed look. His observations would change my life. He discovered quite a large tumour a little way inside my anus. There is a story that I can laugh about now but wasn’t funny at the time! The consultant was a very pleasant Indian gentleman and in his accented English he said, ‘I am afraid you have a tumour in your back passage the size of a melon’ – at this I nearly fell off the table. He then laughed and said, ‘Oh excuse me, I mean a lemon’. Still not good, but better! He then took a sample of the ‘lemon’ and said he would get back to me in a week. I wonder if most people in this position are like me and find waiting for the test results the worst possible part of the procedure. A week later the consultant phoned me to say the tumour wasn’t malignant or cancerous; in fact he said I certainly had no cancer in my body!
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IMAGE SOURCE/GETTY IMAGES
Discovery
However, the tumour needed to be removed and the hospital would send for me. This was great news, but I still had a nagging doubt at the back of my mind. I received word from the hospital to go along for my ‘operation’. The tumour was not being removed – they wanted to do a sigmoidoscopy, whereby a camera or scope is inserted into the lower part of the large colon via the anus. Another sample was taken and the senior nurse told me I would be referred to a specialist consultant. Although the second sample indicated the tumour was not cancerous, he wanted to do a more detailed examination.
Bob Buckley Colostomist
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Perspective Treatment I’ll never forget the weekend before the procedure. We went to our beloved Lake District. We love the scenery, the walks, the food and the friendliness of the area and normally come back home purged of the modern mad world. To say we were both subdued was an understatement. This procedure had an air of being more serious when they administered anaesthetic and I was then told to come back in a week to get the results – so once again the dreaded wait! It was confirmed that a cancer was present and its position meant a major operation to remove part of the colon and the anus, leaving me with a permanent stoma. Technically this is referred to as abdominoperineal resection surgery (APR) – a common treatment when a rectal cancer is located close to the anus. In an APR, the entire rectal cancer, adjacent normal rectum, rectal sphincter or anus, and surrounding lymph nodes are removed through an incision in the lower abdomen and the skin around the anus (perineum). I had no idea what a stoma was. Margaret knew, as a neighbour had had a similar operation. I find it difficult to explain exactly how I felt at this stage – certainly I was very worried, but part of me just wanted to get on, have the operation and get my life back on track. While waiting for operation dates, two other traumatic things happened. My consultant had recommended a week of radiotherapy, which he said would reduce the risk of the cancer coming back by 30%. To understand radiotherapy better, he sent me to see an oncologist – another word I had never heard before! An oncologist is a cancer specialist, but not a surgeon. He said that although radiotherapy has benefits, it also has risks and one of them, because of the position of my cancer, was that I could become impotent. My mind sprang to the joke of the woman who fell into a river and cried for help. A man on the riverbank sent his dog in to help her – the dog was a Rottweiler. So you are drowning in a river and see a Rottweiler swimming towards you! Do you see how I felt? The second traumatic event was a letter informing me I had to go for a CT scan. A CT (computerised tomography) scanner is a special kind of X-ray machine. Instead of sending out a single X-ray through your body, several beams are sent at once from different angles. I thought on reading this letter that the consultant suspected I must be riddled with cancer! The week awaiting the CT scan results was the worst of my life. I convinced myself the hospital was due to give me a terminal prognosis. However, the news was good and confirmed I had just one tumour, so I was back to thinking ‘Let’s just get rid of this invasive little so-and-so’. During all this, I continued to run and even went for a ‘five-miler’ the day before I went into hospital. This kept me fit and helped me sleep at a very worrying time. The operation went well. I awoke feeling fine, no pain, due to an epidural, and the consultant informed
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me that the tumour was surrounded by healthy tissue, which was usually a good sign. It was later confirmed as ‘Dukes A’, which is the lowest grade of cancer. Margaret, my soulmate of nearly 40 years, my sons David and Kevin, and my lovely daughter-inlaw Natalie came in to see me and were amazed how good I looked, but things went downhill. My bowel decided to go into ‘sleep mode’, so nothing was moving through it; this is called a paralytic ileus, which I don’t think is too common. I was being sick due to the bile collecting in my stomach, I got some form of infection, and to cap it all, when my stitches were removed my wound split open, which meant revisiting the operating theatre and starting all over again. I ended up being in hospital for three weeks, but I don’t blame anyone – I think I just got unlucky. When I was discharged from hospital I was two stone lighter, very weak and felt more vulnerable than at any time in my life. I don’t know what I would have done without Margaret and my family, and feel so sorry for people in similar situations who are alone.
Moving forward For me the glass is always half full, so although my experience had severely tested my resolve, it was time to get back to pre-op fitness. Having a stoma is not easy to get used to; it can be messy, embarrassing, timeconsuming and a little bit frightening. I also had the worry that the cancer would return. I do not want anyone to think I lightly dismissed being a colostomist; I would say it took me two years to come to grips with it, but come to grips with it I did. I listened to all the medical advice – don’t lift anything heavier than a kettle and so on! After a couple of days I decided to start walking. To start, I just walked around the corner and back. I continued to build up the distance and pace over the next few weeks and then restarted my running regime, easy at first, gradually building up. I went back to the gym to do some light weights and some abdominal exercises. In line with my increased fitness and about three months post-op, I started irrigating, which means spending 30 minutes in the loo each day to be clean for 24 hours. I then use a plug or small patch over my stoma. Irrigation has been a godsend for me. It is not for everyone, but if you are able to do it, give it a go. As well as keeping fit I still travel all over the world and enjoy hobbies – fishing, astronomy, gardening and cooking. Most of all Margaret and I enjoy our three grandchildren – my ambition now is to see them grow up. So I can honestly say my colostomy does not stop me doing anything I did pre-op. In 2008, I became a volunteer with the Colostomy Association. I do a little bit to help that wonderful organisation and I have also met some outstanding people. Six years on, I was discharged from the hospital and feel so lucky to have made a full recovery – I feel I’ve come out of the darkness into the light ■
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With the right support, anything is possible After his colectomy, Charlie Currie developed an interest in mountaineering. SenSura gave him the confidence to climb Mont Blanc without worrying about his bag After a brief history of colitis, I had an emergency subtotal colectomy on 1 October 2006. I had always been active before my operation, doing a lot of outdoor sports. I came into mountaineering after a friend suggested that we venture to the Cairngorms in February this year. I was amazed at the views and snowcovered mountains – the worst winter in the Highlands for over 30 years, but great for mountaineers and winter hill walkers. I was taken aback by the beauty of the things that I saw on that trip and decided to enrol on a winter mountaineering course, which took me to Ben Nevis and Glencoe. I learnt a great deal and this was a great adventure. Around June, I decided to try Mont Blanc as my first high-altitude climb and started to get fit, running and going up into the mountains about three times a week. Why did I want to climb Mont Blanc? I suppose as a challenge, for personal achievement and for my family. I don’t think I really ever thought that having a stoma, or bag management, would be a problem and I was correct. Due to my digestive system slowing down, stoma output was reduced by the increase in altitude. I had no worries about my SenSura bag or the security of it. The push for the summit started around 2 am from the Tête Rousse refuge hut, traversing the Grand Couloir – about two hours – with a brief stop at the Gouter refuge of around 15 minutes. From there, carrying on to the Dome du Gouter and to the emergency shelter (the Vallot), then on to the Les Bosses ridges – Petite and Grande – at around 4,513 metres and 4,547 metres (two very exposed and narrow ridges), and finally carrying on up some very steep ground up the whaleback-like ridge to the summit of Mont Blanc, arriving at the summit at 9.45 am, having reached an altitude of 4,810 metres. At times, it was very tough – mentally and physically – with altitude sickness every now and then. However, we
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arrived at the summit in good shape and at a good pace, eventually leaving the summit (and its glorious views) for the Gouter refuge hut and a well-earned sleep. The climb took just over ten hours from start to finish. Mont Blanc is a very long day, with high levels of energy being used, and temperatures of –15 to –18ºC near the summit. Was it worth it? Yes, very much so, and if me standing at 4,810 metres on Mont Blanc can help or inspire anyone reading this article, that makes it a very worthwhile achievement. Have I any tips for active types of holidays or sports? I guess you just go out and enjoy yourself. Have faith in yourself and the type of bag you’re using and I’m sure everything will just work out fine! I believe I got a second chance in my life and wish to help others. Living my life has just started. My heart goes out to the younger generation who may have had this type of operation and I wish to show that life is worth living, and that you can fufil your dreams and aspirations. I fully intend to carry on with my mountaineering and to climb to higher altitudes. Where it will lead me to, I am uncertain as yet, but I will take one step at a time – literally! ■
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Straight talking
What are intestinal adhesions? Intestinal adhesions – connections wrongly formed between internal organs – can be distressing. Michael Parker and Andrew Davies explain them in more detail Andrew R Davies MBChB BSc MRCS MSc
Specialist Registar Michael Parker BSc MS FRCS FRCS(Ed)
Consultant in General Surgery, Department of Surgery, Darent Valley Hospital, Dartford
Adhesions are abnormal attachments that form between tissues and organs inside the abdomen. Clinicians often describe surgical adhesions as ‘internal scar tissue’. In many ways the analogy is a reasonable one, in that the normal process of healing involves a fine balance between the laying down and subsequent breakdown of fibrin (a protein involved in blood-clotting that is necessary in forming scar tissue). In the formation of adhesions, there is an imbalance towards the production of fibrin, although the exact mechanisms that contribute to this are not well understood. We commonly refer to adhesions as being encountered after surgery, although it should be pointed out that any sort of inflammation within the abdomen can predispose to the formation of adhesions, as can the presence of tumours that are likely to be cancerous (malignancy). Rarely, an inherited (congenital) tendency to develop adhesions is encountered in patients with no other obvious underlying cause.
How common are adhesions? Before the development of anaesthesia and before major surgery became commonplace, adhesional problems were almost unheard of. We now know that if you have abdominal surgery, approximately 95% of you will have some evidence of adhesions within the abdomen, although the majority of these will not cause any problems (will remain asymptomatic). Undoubtedly, a number of factors contribute to the severity of adhesion formation, but common sense dictates that the greater the injury and hence degree of inflammation within the abdomen, then the greater the adhesion formation. We also know that certain operations have higher rates of scar formation, with removal of sections of the colon or rectum and reconnection of the remaining parts (what is called resection) having a high risk. Ileostomy surgery and any condition that has led to severe contamination within the abdomen, such as bowel perforation, can also put you at greater risk of
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adhesions. If you have had multiple operations, or if you are a younger patient, you may also have a higher chance of these complications. There is much promise that the increasing use of keyhole (laparoscopic) surgery may reduce the development of adhesions, as the degree of damage to the abdomen is significantly less after this minimally invasive form of surgery. Large studies have suggested that as many as one-third of patients will have an adhesionrelated readmission to hospital and that although 25% of these are within the first year after surgery, the risk continues up to and, indeed, well beyond ten years of your having surgery.
What are the complications of adhesion formation? Adhesions are the most common cause of small bowel obstruction (SBO) and, as such, form a significant part of the emergency surgeon’s workload. In simplest terms, in SBO, the bowel becomes twisted on the adhesions in the abdomen, leading to a complete or partial blockage. The symptoms and signs of this are spasmodic abdominal pain, abdominal swelling (distension), vomiting and constipation. The severity of the vomiting and constipation is somewhat dependent on the level of the obstruction. Diagnosis involves the use of X-rays and often a swallowed contrast liquid, which may not only serve to show the site of the obstruction but can help to predict which patients are likely to settle with conservative measures alone. Evidence suggests the contrast liquid may have an additional therapeutic effect. A type of scanning where multiple X-rays are used to build a cleared picture (called computed tomography – CT – scanning) is also very effective in providing not only a diagnosis, but also a more accurate indication of the exact site of the obstructing lesion. While most cases of SBO can be treated with simple measures (intravenous fluids and decompression of the bowel by the use of a
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Straight talking tube placed into the stomach via the nose), a small proportion will go on to develop strangulation of the bowel. This is a surgical emergency requiring further surgery, and often resection of the affected bowel. Needless to say, further surgery is prolonged and hazardous with a significant risk of injuring the bowel (20–30% chance) and the possibility of requiring a stoma, not to mention the inevitable creation of yet more scar tissue. These issues should all be discussed with you before consenting for surgery if you find yourself in this situation. Other complications of adhesions include secondary infertility in women and, more controversially, chronic abdominal pain – a phenomenon supported widely by gynaecologists but received with A photograph taken during keyhole surgery showing an adhesion between more scepticism by general surgeons. the bowel and the wall of the abdomen Whether adhesions can truly cause A number of other methods have been trialled that abdominal pain in the absence of obstruction is debatable, but leads on to the (arguably) more important combine chemical and physical barriers to the production of scar tissue. The most well-known of these question of whether dividing adhesions will improve are anti-adhesion solutions that are infused into the your symptoms. A number of studies have shown no abdomen at the end of surgery. Unlike normal fluid, improvement after division of adhesions and, more these solutions are not rapidly re-absorbed and, therefore, recently, a trial comparing two groups who had keyhole surgery (with division of adhesions only being performed remain in the abdominal cavity for a number of days, preventing contact between organ surfaces during the in one of the groups) showed a similar improvement in critical early stages of healing in which adhesion both groups’ pain after surgery. formation may occur. Preliminary evidence from gynaecological surgery is encouraging, but larger trials are ongoing. Physical barriers that have been trialled include Increasing understanding of the process of adhesion films or gels that are applied to the surgical site with the formation has heralded a search for ways of preventing it aim of physically preventing adhesions forming; these occurring in the first place. Undoubtedly, laparoscopic are safely absorbed by the body after a period of time. surgery will play a role in this process, as well as There is some evidence that they may achieve the meticulous surgical techniques to minimise tissue primary aim of preventing contact between organs (and handling and limit the degree of contamination within thus adhesions), but the films can often be difficult to the abdomen. apply and there are some concerns regarding their use in intestinal surgery because of higher complication rates that have been uncovered in some studies. Key points
Can adhesions be prevented?
● Adhesions are a form of internal scar tissue that can form, particularly after surgery, bonding organs to each other or to the wall of the abdomen. ● A common complication of adhesions is small bowel obstruction, which may need to be treated with surgery. ● Careful surgical techniques and new chemical and physical barriers can help to reduce the risk of adhesions forming after surgery.
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Conclusions Surgical adhesions are now known to be sufficiently common that you should always be informed of this during the consent process if you are proceeding to abdominal surgery. The burden of the cost of adhesions is significant, both in terms of their complications to patients and the financial costs to the healthcare system and wider economy. As always, prevention is better than cure and anti-adhesion solutions do hold some promise. However, complications do arise, and these should be managed by experienced teams with a healthy respect for the potential long-term difficulties this condition may bring ■
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Resources ■ COB Foundation
The Cystitis and Overactive Bladder (COB) Foundation gives support to people with all forms of COB, and their families and friends. The COB Foundation provides information and support to sufferers of bladder problems, including interstitial cystitis, bacterial cystitis and overactive bladder. The goals of the Foundation are: to relieve the sickness of people suffering from COB, to provide patients with contact with other sufferers in their area, to advance education into causes and treatments of all forms of COB, and to support research and ultimately find an effective treatment and cure for all forms of COB. In 1994 two sisters set up the Interstitial Cystitis Support Group, and in 2003 the charity received a grant from the Department of Health to enable it to expand its work. The charity became known as the COB Foundation.
The charity produces a quarterly magazine giving members up-to-date information on treatments and a forum for members to write in with their experiences. The COB Foundation also has an informative website, with resources that may prove useful in managing your bladder problem, and message boards to discuss things with other people in the same situation. Local support groups have also been formed throughout the UK, providing members with an opportunity to meet and talk to their fellow sufferers. The charity also offers a telephonebased information service. The organisation has an ever-expanding membership, which includes health professionals who wish to learn more about the condition. Tel: 0121 702 0820. email: info@cobfoundation.org website: www.cobfoundation.org
■ Beating Bowel
Beating Bowel Cancer is a leading UK charity for bowel cancer patients, raising awareness of symptoms, promoting early diagnosis and encouraging open access to treatment choice for those affected by bowel cancer. Our mission is to save lives from this common cancer. Those affected by bowel cancer are at the heart of everything we do. Our patient support service provides: ● Free information booklets and fact sheets to patients, relatives and clinicians – giving up-to-date information on the disease and its treatment ● A comprehensive website, online forum and very active online support groups via Facebook and Twitter
● Patient Voices and Relative Voices: a unique peer support network, facilitating one-to-one communication and experience-sharing for patients and those affected by bowel cancer. Our specialist nurse advisory service provides help and advice about any aspect of the disease, whether physical (practical help with managing your stoma/post-stoma reversal), emotional or practical. Beating Bowel Cancer also works hard to raise awareness of bowel cancer and the issues facing affected individuals through awareness initiatives and ongoing coverage in the media. Tel: 08450 719 301. email: nurse@beatingbowelcancer.org website: www.beatingbowelcancer.org
Mitrofanoffsupport.co.uk is a help and support website, set up for people with bladder defects who go on to have a Mitrofanoff. Whether you have a Mitrofanoff, or are a family member, carer or friend of someone who does, you are not alone. My name is Kyla Hooper. I have had a Mitrofanoff urinary diversion since 1998. Bladder defects are not openly discussed and there is a lack of public knowledge on having a Mitrofanoff. I started Mitrofanoffsupport.co.uk in early 2010, to offer support to anyone who is about to have, or already has, a Mitrofanoff and, of course, your nearest and dearest. I felt there was not enough support or reassurance and
guidance for adults with Mitrofanoffs. My primary role is to represent the interests of people with a Mitrofanoff. I aim to raise awareness of what it means to live with a Mitrofanoff. I hope to address the general lack of public knowledge. The website includes full details of the Mitrofanoff and the procedure. There is a Q&A page and, most importantly, a chat forum, where you can ask questions. Remember, you are not alone. If you have a question, nothing is too stupid or small to ask. Tel: 07967 004 517. email: kyla@mitrofanoffsupport.co.uk website: www.mitrofanoffsupport.co.uk
Cancer
■ mitrofanoff
support.co.uk
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CHARTER STOMA CARE ISSUE 36
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
I read with interest your article on simple tips for ensuring you get a good night’s sleep (Charter stoma care 35), and thought I might share some of my tips. I have had a urostomy for seven years and have had multiple leakages at night, always very frustrating and distressing. I now use two mattress protectors on the bed at the same time, which means that if I do have an ‘accident’ in the middle of the night, we simply pull off the top sheet and one of the mattress protectors and can sleep on the bottom protector for the remainder of the night without having to remake the bed. We found a certain Swedish store to have the perfect mattress protector as it doesn’t make a crinkly sound when you move and also has a terry towelling top which makes it comfy, especially if you do have an accident and have to sleep on the bottom sheet. I also have a kitchen basin beside the bed for my night drainage stand and bag to sit in, as it’s amazing how many times there are leaks from the night bags and it definitely protects your carpets.
Mrs R (via email) Thanks for that good advice; I’m sure other readers will find it helpful. I am concerned, however, that you continue to get so many leaks at night. If you haven’t already done so, pop along to see your stoma nurse; they may have some new accessories or appliances that could solve the problem ■ I have always enjoyed wearing jeans and was in despair after my colostomy, as I thought I’d never be able to do so
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again. My daughter then suggested maternity jeans, which have been brilliant! Am I unique in being 65 – a grandmother – and regularly shopping at Mothercare?
Mrs N, Northumberland What a great idea! It always amazes me just how resourceful our readers can be. I’m sure others will find your suggestion helpful ■ When I had my operation, I was bereft at the thought of a colostomy bag and not being able to wear half of my wardrobe – or so I thought would be the case. I remember coming home and going through my wardrobe with my sister and discarding so many of them because of the fear that they would ‘show’ my bag! I was in despair as the two people who I had spoken to who had bags were very different in age, style and so on from myself and it gave me no solace. In fact, it made me worse as I have always been body-conscious. Following my operation, with the help of my absolutely fantastic stoma nurse, I started to irrigate and this has been a complete lifesaver to me. Most of the people in the village where I live have completely forgotten that I have a
Please address your correspondence to: The Editor,
Charter stoma care Hayward Medical Communications 8–10 Dryden Street London WC2E 9NA Alternatively, you can email the Editor at: edit@hayward.co.uk
colostomy and wonder ‘Where is it?’, as somebody asked me just the other day! I wear whatever I like, the pouches are so discreet, and I have been on holiday all over the world since my operation. I have done all sorts of activities, from a week’s scuba diving course to rock wall climbing. I swim twice a week and can assure all other colostomists that noone at the pool would ever know – I wear a normal swimsuit. Even the tightest of evening dresses, which I absolutely adore, shows nothing of the bag that I wear. So this is to give all those girls hope – you CAN still look good even with a colostomy, so take heart. I would dearly love to speak to anybody with issues if you think this would be appropriate.
Ms E (via email) What a lovely, uplifting and encouraging story. It sounds to me as though you would make a great visitor. The Colostomy Association runs a visiting scheme, so can I recommend that you contact its Head Office to discuss this. The telephone number is 0118 939 1537, or more information can be obtained via the website (www.colostomyassociation.org.uk). Alternatively, contact your stoma nurse, who may have her own local visiting scheme ■ This is a wake-up call to other patients who, like me, sit at home crying and moaning to themselves because they have a stoma that leaks or smells. For four and a half years I lived in this misery before I sought any advice; the change was instant with just one visit to the stoma clinic. I was fitted up very safely with the perfect pouch for me. That was six months ago and I’m still floating on air. Stoma personnel are the most caring people in the health service. They really care about you, so don’t sit there feeling sorry for yourself. Give them a chance; you’ll love it.
Mrs R, West Midlands I’m so glad you found your local stoma care nursing team so helpful. I am sure there are many people who suffer in silence thinking that leaking bags and sore skin are the norm. I hope your letter will be an inspiration to them to seek help ■
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19/04/2010 10:50:30