Living Well

Everyone recovers from an operation differently
Returning home 
 
People often experience some anxiety when faced with leaving hospital after a major operation, about how they will manage at home, or when they are going to be able to get back to a normal routine.  This is especially true for bowel cancer patients coping with a new bowel habit or stoma.
 
Hospital in-patient stays are getting shorter and laparoscopic surgery can mean that you are only in hospital for 3 or 4 days, compared with the 6–10 days usually associated with an 'open' operation.
 
Emergency operations usually involve a large, open wound for an exploratory operation, and patients tend to be less well before the operation, which can result in a longer hospital stay after surgery.
 
No patient is discharged until they are considered to be medically fit, but it can still take several weeks before you feel that you have started to make a full recovery.
 
In the first few days after coming home, you may find even simple tasks exhausting.  It is common to feel very tired, and to need to sleep and rest much more frequently.  This can be due to a combination of things, including side-effects of the anaesthetic, lack of sleep while you were in hospital, the side-effects of your pain killers or discomfort from the surgery itself.
 
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Managing expectations 
 
Once you are back at home, it is easy for you, your family and friends to forget that you have been through a major operation and see you as being 'back to normal'.  Try to avoid the temptation to do everything you used to do before going into hospital, because this can make you more tired and frustrated.  If you have close friends and family around you, ask them to help with simple tasks like grocery shopping, or housework.  This is especially important for the first six weeks or so, while you are unable to drive and lift anything heavy.
 
If you live alone and do not have any support locally, there are voluntary organisations who can offer this kind of help for short periods, and this can often be arranged as part of the discharge process with your hospital team.
 
As a general rule, the length of your operation will be a good guide as to how many months it will take you to recover.  So, if your operation was 2 hours long it will take you about 2 months to recuperate.
 
If you have already had other treatment or are going on to have additional radiotherapy or chemotherapy, this will add to your recovery time.
 
Tips for a trouble free recovery 
 
Everyone recovers from an operation differently and much depends on your age and previous level of fitness.  Here are some dos and dont's that may help in your recovery:
 
  • Get out of bed and get dressed every day.  This will help you build up your strength and encourage the return of normal sleep patterns.
  • Gradually start to increase your activity by doing some light jobs around the house as you feel able.
  • Avoid standing still for long periods of time, and when sitting down, make sure your back is well supported.
  • Talk to your friends and family and explain what you are/are not allowed to do during the recovery period.  This will help them to understand when you need extra support and avoid you having to take on too much before you able.
  • Start doing some form of gentle exercise as soon as you can, several times a day, to improve mobility and strength.  Avoid any strenuous physical exercise for at least eight to ten weeks following the operation to avoid straining the healing tissues and muscles.
  • Drink plenty of fluids and eat light, nutritious meals, slowly increasing the quantity as your appetite improves.  Large meals once or twice a day can put extra strain on your digestive system and bowel, affecting your appetite in the recovery period.  Smaller, nutritious meals eaten frequently throughout the day are good if your appetite is poor.
  • Take your painkillers regularly, as prescribed, until you no longer have pain or discomfort.  You may need to do this for some weeks after surgery to maintain mobility and independence, so that you get better more quickly.  A painkiller before bed may help you settle to sleep more easily.
  • Constipation is a common problem associated with a change in your diet, certain pain medications and a general decrease in activity.  If you are affected, do consider using gentle laxatives prescribed by your doctor to ease discomfort, and make small changes to your diet and activity levels. 

Longer term goals and challenges 
 
It is very common to feel quite low once you go home, not only because of the physical effects on your body, but also because you are coming to terms with a diagnosis of bowel cancer.  Do try to allow yourself the space and time to come to terms with what has happened and be honest with family and friends about how you are feeling.  Trying to put a brave face on things can leave you feeling more isolated.  Here are some tips from other patients:
 
  • Try and get back to normal social activities as soon as you are feeling well enough.  It is usually safe to resume sexual activity as/when you feel able, unless advised otherwise by your doctor.
  • Give yourself time and do not expect too much too soon.  Unpredictable bowel habits and scars will gradually settle down.  If you do experience any problems resuming sexual activity, you can talk to your specialist nurse, or other voluntary support groups specialising in this particular area.
  • Don't be surprised if your bowel habit has changed - your bowel habits could be loose, frequent and unpredictable after surgery.  This is because you have had a section of your bowel removed.  It is unlikely that your bowel habit will return to exactly how it was before the surgery, but it should settle down into a routine after a few weeks, or sometimes months.
  • Don't be surprised if you have trouble tolerating certain foods.  This is all normal and part of the recovery process.  Some foods may cause constipation; others may cause diarrhoea.  Keeping a food diary may help you find which foods seem to upset your bowels and start identifying patterns.
  • Avoid lifting any heavy items and doing heavy household tasks for at least 10 weeks.  This will allow all the internal structures and muscles to heal properly and reduce the risk of developing a hernia.
  • Don't drive until you feel fully confident you can perform a quick movement (i.e. an emergency stop) and you are no longer taking strong painkillers that may affect your concentration.  Do check with your insurance company, as some insurers will not provide cover for a period of time following a general anaesthetic.  You may also find it helpful to have someone with you when you first go driving again.  Remember, having bowel surgery does not exempt you from wearing a seat belt.
  • Don't return to work until you have spoken to your GP and/or surgeon to confirm they are happy for you to do so - this is particularly important if your job involves physical activity.
 
Contact your GP or specialist nurse immediately if you:

  • develop a high temperature.
  • are unable to eat or drink for any reason.
  • have persistent diarrhoea, nausea or vomiting.
  • have constipation for three days or more.
  • have increased abdominal pain not relieved with pain medication, or if your wound becomes red, warm to touch or develops an unusual, smelly or pus-like yellow/green discharge.

Regaining bowel control 
 
Faecal incontinence (leaking faeces from the bottom) is much more common than people think, but it is not something that is talked about openly.  However there are continence specialists who help people to overcome problems with their bowel control and you can ask your GP for a referral.
 
The information below describes exercises which may help you regain control.  There are also some medicines which may help, if necessary.

How your bottom works 
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There are two rings of muscle wrapped around the anus, called 'sphincters'.  When a stool (faeces, poo) comes into the rectum one of the muscles relaxes and allows the stool to enter the anus.
 
Sensitive nerve endings in the anus can tell you if it is gas or stool waiting to come out.  If it is stool, you squeeze the second muscle to stop it from coming straight out.
 
The squeezing moves the stool back into the rectum, where it waits until you get to the toilet. You may not be able to squeeze enough to hang on if your muscles are weak or have been damaged by surgery, or they do not squeeze in the correct order or the nerve supply to the muscles is damaged.
 
There are many different reasons why you might develop bowel leakage or incontinence following treatment for bowel cancer.  For example, surgery which involves removing part of the bowel, shortening it or changing its shape, will affect its normal working pattern.
 
It can also change how sensitive the nerve endings around the bowel area are, or in rare cases, cause damage to the anus – the sphincter muscle which forms the entry into your rectum (back passage).
 
Chemotherapy treatments can also cause side effects in the bowel, and these can take some time to settle down again.  In a few cases, radiotherapy treatments can also cause short term and longer term changes to the way you are used to your bowel working.
 
Whatever the reason, having a problem controlling your bowels can be upsetting.  If you have had the distressing experience of a bowel accident in public, you will be acutely aware of the feeling of any pressure or filling sensation in your rectum (back passage) which might mean you will need to find a toilet quickly.  It is a natural reaction to try and prevent an accident by either tensing all your muscles and holding your breath or rushing to find a toilet.  A better course of action is to sit or stand still, breathe deeply and contract your anal sphincter until the urge passes.
 
Most people find that their emotions have an influence on their bowels.  If you are worried or anxious it can lead to more frequent, more urgent, and looser bowel actions.  If you panic when your bowel is full, this can cause the sense of urgency to become even stronger.
 
Your rectum, your sphincter muscles and your confidence need retraining to help you overcome this problem.

Learning to control your sphincter muscles 
 
Exercises can strengthen these muscles so that they give support again.  This will improve your bowel control and improve or stop leakage of gas or stool.  Like any other muscles in the body, the more you use and exercise them, the stronger they will be.

Imagine that your sphincter muscle is a lift.  When you squeeze as tightly as you can, your lift goes up to the fourth floor.  But you cannot hold it there for very long, and it will not get you safely to the toilet as the muscle will get tired very quickly.  So now squeeze more gently and take your lift only up to the second floor.  Feel how much longer you can hold it than at the maximum squeeze.
 
You may not be able to do this at first.  If the urge is too strong, start by trying to delay bowel emptying once you are sitting on the toilet.  See how long you can wait until you really have to let go.
 
Sit on the toilet and hold on for as long as you can before opening your bowels.  If you can only manage a few seconds, don't worry, it will become easier with practice.  You might find it easier if you try to relax and concentrate on breathing very calmly.  It may be helpful to take something to read.
 
Once you are able to delay opening your bowels for a few minutes, the unpleasant urge to go then disappears.  Get up and leave the toilet.  Return a few minutes later when there is no urge and try to open your bowels.
 
Gradually you will find that you can increase the distance and time away from the toilet.  The more you practise this and the sphincter exercises below, the sooner it will happen.
 
Eventually you should find that you are regaining control of your bowels.  The longer you can hold on, the more fluid is absorbed from the stools and so the firmer and less urgent they become.
 
When you have some successes, you will become more confident.  The less you panic, the easier it is to make the urge go away.
Sphincter exercises
 
  1. Sit, stand or lie with your knees slightly apart.  Now imagine that you are trying to stop yourself passing wind from your bowel.  To do this you must squeeze the muscle around your back passage.  Try squeezing and lifting that muscle as tightly as you can, as if you are really worried that you are about to leak.  You should be able to feel the muscle move.  Your buttocks, tummy and legs should not move much at all.  You should be aware of the skin around your back passage tightening and being pulled up and away from your chair.  You should not need to hold your breath when you tighten these muscles.

  2. Tighten and pull up the sphincter muscles as tightly as you can.  Hold for at least five seconds and then relax for at least 10 seconds.  Repeat at least five times.  This will work on the strength of your muscles.

  3. Pull the muscles up to about half of their maximum squeeze.  See how long you can hold this.  Then relax for at least 10 seconds.  Repeat at least five times.  This will work on the endurance or staying power of your muscles.

  4. Pull up the muscles as quickly and tightly as you can, then relax, and then pull up again.  See how many times you can do this before you get tired.  Try for at least five quick pull-ups.  Do these exercises at least 10 times every day.  As the muscles get stronger, you will find that you can hold for longer than five seconds, and that you can do more pull-ups each time without the muscles getting tired.  Remember that you cannot hold your tightest squeeze for very long, so it is better to use a gentle squeeze that you can hold for longer.  Your control will gradually improve.  You may need to exercise regularly for several months before the muscles gain their full strength and continue to exercise to maintain your bowel control.

Diet and medicines can affect your bowels as well 
 
There are some foods and medicines that can affect how loose or firm your stools are and it may take a bit of time to work out which ones might be adding to or helping the problem.
 
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