Bowel Surgery Panproctocolectomy Your operation explained Introduction This information is for people considering having a Panproctocolectomy operation. It explains what is involved and some possible problems that you need to know about. It is not meant to replace discussion between you and your surgeon, but can be used to help you decide whether to have the operation and to prepare for it if you do. If you still have questions after reading this leaflet, please ask the surgeon, nurse specialist or your keyworker for more information. The nurse specialist can give you a separate list of organisations that can offer you support. (Staff: delete as applicable) e Surgeon Name. Telephone number.. Contents How your digestive system works.....page 2 Information about Panproctocolectomy to help you make your decision. page 3 Preparing before the operation. page 8 What happens when you come into hospital.. page 9 What happens after the operation... page 10 Some general advice page 12 Keyworker Name.. Telephone number... Nurse specialist Name. Telephone number.. Hospital ward Name.. Telephone number... Page 1 of 12
How your digestive system works To understand the operation, it helps to have some knowledge of how your body works. When you eat, your food passes from your mouth down the oesophagus (food pipe) into your stomach. Here it is broken down and becomes mushy. It then goes through the small bowel, a long, coiled tube where nutrients are digested and absorbed. The mushy food is then passed into your colon (large bowel). This is a shorter but wider tube, where it becomes faeces (bowel waste). The colon s main job is to absorb water, making your bowel waste more solid. The bowel waste then enters your rectum which is like a storage area. When the rectum is full, we feel the need to open our bowels (go to the toilet). The bowel waste passes through your anus (bottom) when you go to the toilet. Page 2 of 12
Information to help you make your decision What is a Panproctocolectomy? It is an operation to remove all of the colon, rectum and anus. This is usually for non-cancer (benign) bowel disease but it can be done for a cancer (malignant disease). Your surgeon and nurse specialist will carefully explain everything to you. Two cuts are made one in your abdomen (tummy) and one around your bottom. The surgeon removes the whole of the large colon, rectum and anus and creates an ileostomy which will be permanent. An ileostomy (or stoma) means bringing the end of the small bowel out through an opening on your abdomen (tummy). Bowel waste passes out through this into a pouch or bag that you stick to your tummy. Your nurse specialist will explain more about this. The wound on your abdomen is usually closed with clips. The wound on your anus (bottom) is stitched. The stitches may be dissolvable which means that they will wear away themselves as your bottom heals. If the stitches are not dissolvable, they will be removed after about 7 to 12 days. Some people worry about having stitches removed, however it is not usually painful. You may experience some discomfort though. Keyhole surgery Some hospitals offer keyhole surgery (laparoscopic surgery). The aim of keyhole surgery is to: Improve recovery in the time straight after the operation Reduce the possibility of long term wound complications Keyhole surgery may also: Reduce pain after the operation Reduce scarring Reduce how long you need to stay in hospital. Page 3 of 12
Information to help you make your decision Scars With open surgery the scar is a straight line on your tummy/ abdomen. It can be up and down or from side to side. With keyhole surgery, there are some small coin-sized wounds and a scar in a straight line. Your surgeon can advise you what your wounds and scars may be like. What are the benefits of a Panproctocolectomy? In most cases, removing the diseased bowel through this operation will give you the best chance of a cure or improvement in your bowel problems. Your surgeon will discuss your personal circumstances with you in more detail. Page 4 of 12
Information to help you make your decision (continued) What risks are there in having this operation? Most people do not have any serious problems with their surgery. However, the risk of problems increases with age and if you have heart, chest or other medical conditions such as diabetes or if you are overweight or smoke. Your surgeon will discuss your personal circumstances with you. Bowel surgery is a major operation. Risks with this operation depend on how it is being done and include: Nerve damage Your operation will be very close to your bladder and the nerves responsible for sexual function. These may get damaged during the operation. Your bladder function may be disturbed. Men may have problems with erection or ejaculation. In women, sexual response may be affected and there may be discomfort during sexual intercourse. These problems may be temporary or permanent. Your surgeon or nurse specialist will discuss any problems or queries you may have. Possible stoma problems While recovering from your operation, you may experience some early problems, for example, sore skin around your stoma or a problem called necrotic stoma (see below). Stoma prolapse and parastomal hernia are longer term problems that may occur. These are described below. Your surgeon or nurse specialist will give you more specific stoma information and support. Necrotic stoma is when the blood supply to the stoma is not enough. This may mean you need more surgery. Stoma prolapse is when the stoma comes out too far past your skin. In serious cases you may need more surgery. Parastomal hernia is when your bowel pushes through a weak point in the abdominal muscle wall. Small hernias can be treated with a support garment or belt. If you have a larger hernia, you may need surgery. Page 5 of 12
Information to help you make your decision (continued) What risks are there in having this operation? (continued) Do remember that most people will not experience any serious complications from their surgery. Slow wound healing The wound on your bottom can take time to heal fully. This is more likely to happen if you have had radiotherapy to your pelvic area. Ileus and small bowel obstruction Sometimes the bowel is slow to start working after surgery (ileus) or can be obstructed (blocked). If this happens the bowel may need to be rested. Sometimes an operation may be needed. After any major operation there is a risk of the following: Urinary tract infection This may cause burning when you pass urine (wee) or make you need to go more often. It can be treated with antibiotics. Chest infection The risk of chest infection is more if you are a smoker. You can help by practising deep breathing exercises and following the physiotherapist s instructions. If you smoke, we strongly advise you to stop. Wound infection The risk of this is more because you are having bowel surgery but it can be treated. We would show you how to reduce this risk. Bleeding A blood transfusion may be needed. Very rarely, further surgery may be required. Thrombosis (blood clot in the leg) Major surgery carries a risk of blood clot in the leg. A small dose of heparin (blood thinning medication) is injected each day until you go home. You can help by moving around as much as you are able and regularly exercising your legs. You will be fitted with support stockings while you are in hospital. If you smoke, we strongly advise you to stop. Pulmonary Embolism (blood clot in the lungs) Rarely a blood clot from the leg can break off, and become lodged in the lungs. Risk to life Bowel surgery is major surgery. It can carry a risk to your life. Page 6 of 12
Information to help you make your decision (continued) What risks are there in having this operation? (continued) Your surgeon can and should discuss these risks and any others with you to help you make your decision. What other options are there? Choosing not to have the operation may lead to bleeding, discharge, pain and possibly a complete blockage of your colon. Other treatments may be available to try and control your symptoms but not to cure the disease. Your surgeon can discuss your choices with you. Page 7 of 12
Preparing for the operation While you are waiting for your operation, it is important that you try to prepare yourself physically. If you can, try to eat a balanced diet. Take gentle exercise such as walking and get plenty of fresh air. If you smoke, we strongly advise you to stop. There are a number of things we do with you to plan your operation and your stay in hospital. Some could be carried out in a preassessment clinic. If so, you will be asked to attend the clinic a week or two before your operation. It takes around two hours. You should bring a family member or friend with you and any medicines that you currently take. A doctor or nurse will take a blood test, listen to your chest, check your blood pressure and may send you for other tests, for example, a chest X-ray and an ECG (a tracing of your heart). This information helps the anaesthetist plan your general anaesthetic for you. You can ask for more information about general anaesthetic. You will be seen by the nurse specialist who will discuss: Your operation The possible problems What is expected of you during recovery. You may then meet the anaesthetist and/or the pain management nurse who will discuss your anaesthetic and pain relief for after the operation. A nurse may also ask questions about your health and home circumstances. If you live alone and have nobody to help you, please let us know and we will try and organise some help or care for you. If you need it, you can be referred to the social worker, occupational therapist or dietitian. Medicines You will keep taking your current medicines while you are in hospital but if you regularly take bloodthinning drugs such as aspirin/plavix or warfarin you should discuss this with your surgeon before your surgery. Page 8 of 12
When you come into hospital You will usually be admitted the day before or on the morning of your operation. You will be asked to ring the ward to check that a bed is free for you. After you are admitted, any further preparation and investigations will be carried out. We will explain the operation and risks once again and ask you to sign a consent form. Bowel Preparation You may need Bowel Preparation to empty your bowel. This could be in the form of a laxative drink or an enema (liquid to flush your bottom out). You will not be allowed anything to eat for six hours before surgery. We will advise you when to stop drinking water (two to six hours before surgery). This is to allow your stomach to empty so you aren t sick during the operation. However, you will be able to take any important medicines with some water. Your anaesthetist will discuss your anaesthetic and pain relief with you. You may be given analgesia (painkillers) through an epidural (tube in your back) or through a drip in your arm connected to a hand held pump. This means you control the amount of painkiller you take. If you would like to talk about this further please ask to speak to a pain management nurse. A nurse will take you to theatre. Your operation will usually take between two and four hours. Page 9 of 12
After your operation You will go back to the recovery ward for a few hours and then be transferred back to your original ward. You may have a number of tubes attached: An drip (tube), usually in your arm to feed you and often to give drugs A catheter (a fine tube) in your bladder to drain urine (wee) A tube, either in your arm or in your back, slowly releasing pain relief drugs Drainage tubes to clear away any fluids around the site of the operation Oxygen through a face mask or small tube placed to your nose Most of the tubes are put in place while you are under anaesthetic. Over a period of one to five days many or all of these tubes will be taken away. You will have a stoma bag or pouch on your tummy. Your wound(s) will be covered by a dressing for the first few days. There is a risk of developing wound infection. If so, your wound(s) may ooze slightly or be red and painful. You should report this to a nurse. Your surgeon will decide if you need antibiotics or any further treatment. The catheter saves you from having to go to the toilet straight after your operation. It may however make you feel as if you need to go to the toilet. This is normal and nothing to worry about. The catheter is removed a day or two later. Removing the catheter is quick. It can cause slight discomfort but should not be painful. Your urine is then checked for any infection. People recover from their surgery at different rates depending on their general fitness and speed of recovery. With modern enhanced recovery programmes, some patients are able to leave the hospital after 3-4 days. If you have any complications, however, you could be in hospital for considerably longer. Your surgeon or nurse specialist will discuss this with you. When can I start to eat and drink? This varies from person to person. We will advise you. Some people are able to eat and drink soon after surgery, whereas for others, diet and fluids may have to be restricted for a few days. If you have any questions about your diet, please ask your ward staff, dietitian or nurse specialist. Page 10 of 12
After your operation Activity while you are in hospital You will be asked to sit out of bed on the evening of your operation. The next day you will begin to walk with help from a nurse or physiotherapist. You will probably find the first few days very tiring but it is important to attempt gentle exercise. This reduces the risk of problems and helps recovery. The amount you should do is slowly increased until you are back to your normal activities. The physiotherapist will also show you breathing exercises to do. Results of your operation About two - three weeks after your operation, a report on the removed portion of colon will be sent to your surgeon. This is called a pathology report. Depending on this report, you may be offered further treatment. We will discuss this with you. Discharge home and aftercare After your operation you will feel tired and weak. Full recovery can take several weeks. There is usually no need to stay in hospital all this time. Many people say they feel better sooner at home. However, you will need someone to help with meals, cleaning and shopping. A short sleep during the day can help in the first two to three weeks after you come out of hospital. Don t stay in bed for too long though as this slows down your circulation and increases the risk of developing a thrombosis (blood clot). Try to take some gentle exercise like walking in your home or garden. For the first six weeks, don t lift heavy things such as shopping or wet washing, and don t do things like digging or mowing grass. You may feel some pain and twinges around your wound(s) for several months. This is normal. Taking a mild painkiller regularly should help you feel and get better. If the pain does not seem to get better or you are worried, contact your surgeon or nurse. If you experience any unexpected increase in abdominal pain or develop a temperature it is important to contact your surgeon or nurse specialist. If you need urgent advice out of hours, you should contact the hospital ward that you were discharged from or Accident & Emergency (A&E). Page 11 of 12
After your operation Follow up You will have regular appointments with your surgeon after you leave hospital. You may need some tests as part of your follow up. Some general advice Your feelings It is normal to feel low in your first few weeks home. Talking with your family or friends can help. If you would rather talk to someone else, contact your nurse specialist who is there for support and advice while you are in hospital and after you leave. They can also help you find other support. Sex Sex is fine as soon as it feels comfortable. If you are worried, ask your GP, surgeon or nurse specialist. Work Returning to work depends on your job. If your job involves heavy manual work, you may need more time off than if you had a less active job. You may think about going back to work part time at the start. You should ask your GP when you are considering returning to work. Driving Do not drive until you are able to do an emergency stop without hurting yourself. Also check with your GP and your insurance company. About this information This information can be made available on request in alternative formats and in other languages to meet the needs of those who are not fluent in English. This version is available online at http://www.cancerni.net/leaflets. It is provided for general information only and is not a substitute for professional medical advice. We make every effort to ensure that our information is accurate and consistent with current knowledge and practice at the time of publication. NICaN Colorectal Cancer Information Group have created this leaflet for people considering having a Panproctocolectomy, whether this is because of cancer or not. It was adapted from Ulster Hospital and Pan Birmingham Cancer Network information leaflets. Publication Date: June 2010 Review Date: June 2012 Page 12 of 12