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Ileostomy and fatigue, what could be causing it?

25th May 2022

Ileostomy and fatigue, what could be causing it?

Your body works quite differently now you have ileostomy and it can take some getting used to. Having an ileostomy may save your life, but living with on a daily basis can be exhausting. In the case of an ileostomy or colostomy you are functioning with reduced or no large bowel (colon) and with a urostomy you are functioning without a bladder, so there is no wonder your body will now feel tired. Be kind to yourself and listen to your body, it is telling you that you are tired for a reason. Don’t feel you have to accomplish long lists of daily activities, do what you can for that day and rest in between starting new activities. Ask a friend or family member to help you until you are back on your feet again. However, once you have recovered from your initial surgery, tiredness and fatigue should not be expected as a consequence to having a stoma.

Understanding what the causes of tiredness and fatigue could be, can really help you to put steps in place to help.  Here are some of the common causes of fatigue with an ileostomy.

Recovering from surgery:

After surgery it is normal for all ostomates to feel fatigued. Don’t forget you have just had major abdominal surgery. You have also spent a good few days in hospital which is a busy place and you are often disturbed round the clock! Therefore, you will have much needed sleep to catch up with.  Once you get home, it is quite common to find you are more tired, especially in the afternoon. If so, take a nap, rest, and enjoy the break from everything. You may also find your body clock has changed slightly, so try to go to bed at the same time each night and establish a bedtime routine.

Although it is important to rest, it is also important to gently mobilise, so you are getting some exercise. Try to get some fresh air and a change of scenery too, wander around your garden if you are up to it, the stimulation all helps towards a better night sleep.

You will get stronger day by day and this isn’t a process you can rush. Take the time to get well again and take each week as a step forward. By 4-6 weeks you will start to feel back to your old self, but it can take up to 12 weeks to feel fully recovered.

If you are still feeling tired despite the above, contact your GP or Stoma Care Nurse.

Frequent trips to the toilet:

Now you have a stoma you will notice the frequency of your bowel movements may have changed. Whilst most people have one bowel movement a day, you may find that you are now needing to empty your pouch more often. This is the case with an ileostomy and urostomy rather than a colostomy. It can be quite exhausting especially when sleep is broken to get up and attend to your stoma pouch, which unfortunately doesn’t always go to sleep with you! Just remember that this can take a little bit more time and energy but be patient, things should slow down with time.

It’s important with an ileostomy to note the contents of your ileostomy whilst you are draining it. Check that your output has not become looser/more liquid, than usual and that your pouch isn’t filling up quicker. If so, you may have a high output stoma which does need assessing by your stoma care nurse to prevent you from dehydrating. Medication can be commenced to slow your output down and thicken the contents of your pouch to prevent any potential leaks. The skin around your ileostomy (peristomal) also needs to monitored to prevent it from becoming sore and irritated.

Changes in sleeping position:

Finding a comfortable sleeping position with a stoma is an important factor. This can be tricky at first as you may have to adapt your normal sleeping position. Sleeping on your back is a safe option, especially in the days and weeks after surgery. If you are sleeping on the same side as your stoma, you may feel a little vulnerable and worry that it may either hurt or you might roll onto your stoma and even your pouch. The mattress will support the ostomy pouch as it fills. Sleeping on the opposite side from your stoma is fine too, you can just hold a pillow up against your abdomen or set your pouch on a pillow next to you so the weight as it fills does not wake you up. Some people find wearing a stoma shield or tucking their stoma bag into a pair of close fitting pants or pyjamas provides it with some support and gives confidence that the stoma or bag are protected overnight.

If you prefer to sleep on your stomach, this will be fine at the beginning of the night but increases the chances of leaks as the night progresses and your bag fills up. So, try to roll onto your side or back before you fall asleep. Try popping a pillow between your legs or under your back as this will help you get into a comfortable position for a good night’s sleep.

Dehydration:

Dehydration is a common challenge for ostomates. Those with an ileostomy are most at risk of becoming dehydrated, more so than those with a colostomy or urostomy and it can happen quickly and make you feel fatigued. Once you are home after stoma surgery make sure you follow the few lifestyle adjustments you need to stay properly hydrated following your surgery. Your surgeon will advise you of how much fluids you should be drinking each day now you have an ileostomy.

Signs of dehydration:

Signs of becoming dehydrated are easy to spot if you know what to look for, and you can prevent becoming dehydrated if you act on them swiftly. The number one best way of confirming your hydration status is checking your urine colour. Try to aim for a pale straw like coloured urine – this means you are probably drinking enough. If your urine is darker in colour you need to drink more water. If you are experiencing any of the below symptoms contact you Stoma Care Nurse or GP for advice and support:

  • Headache or feeling lightheaded
  • Feeling thirsty
  • Tiredness and fatigue
  • Increased stoma output or diarrhoea
  • Dry mouth
  • Muscle and stomach cramps
  • Poor concentration
  • Nausea/vomiting
  • Dark urine
  • Decreased urine output (peeing less than normal

Make sure you contact your GP or Stoma Care Nurse if you experience any of these symptoms and they will guide you how to re-hydrate yourself.

Diet with an ileostomy

Diet and nutrition are a very important part of having an ileostomy. Knowing what you can and can’t eat is very confusing straight after surgery, but your Stoma Care Nurse will help support you with this and there is also plenty of information about diet with an ileostomy out there for you to read.

What you eat and drink can have a huge impact on the output from your ileostomy. In the first few weeks after your stoma surgery, you will usually be advised to follow a low fibre diet. This is because a high fibre diet may increase the thickness of your stools and could potentially cause a temporary blockage or pancaking. However, for most people with an ileostomy it has the opposite effect and makes their output waterier, so the appliance fills more quickly and needs draining more frequently – which can be exhausting. Fibre also makes your bowel active which you don’t need in the first few days and weeks, you need quite the opposite: to give the bowel time to rest and heal.

By the 8 weeks stage following surgery, you should be able to resume a relatively normal diet. Your intestine adapts and functions better with time after surgery. At this stage you can slowly re-introduce fruits and fibre back into your diet and monitor their effects on your output. You may find that after surgery, you want to stick with foods you could tolerate well prior to surgery.

What causes a loose output?

Try to remember that when you have an ileostomy, your output should be a porridge consistency as it does not go through the large bowel (colon) anymore. Having a loose or watery output can happen occasionally with an ileostomy and there are some tricks to help thicken your output so that it is more manageable and doesn’t cause any leaks, which can lead to sore skin and misery.

If we look at diet, the most common reasons for causing diarrhoea or a loose output are usually:

  • too many green vegetables or beans
  • fruit juices or fruit itself,
  • spicy foods
  • alcohol

Food which naturally thicken your output:

The good news is that there are plenty of foods which are starchy and have a natural thickening effect, to help with the loose output you may be experiencing. So, make sure these are very much a part of your diet too. Often people snack on these in between their meals, such as a handful of jelly babies, a rice cake or a chunk of banana to keep their output that little bit thicker. By doing this it often stops your mid-morning coffee flying through you at top speed!

Examples of thickening foods:

  • Starchy foods such as white bread, pasta and mashed potatoes
  • Marshmallows or jelly babies
  • Jelly
  • Ripe bananas
  • Apple sauce/stewed apple
  • Rice cakes
  • Banana bread
  • Peanut butter (smooth)
  • Sponge cakes

Nutritional deficiencies with an ileostomy:

Lack of the correct nutrients can really affect our bodies energy levels. If we don’t get enough nutrition from our food, it can make us feel tired and lethargic. Ostomates need to be aware of the signs of Vitamin B12 deficiency and whether this vital vitamin is being absorbed properly. Vitamin B12 plays an important role in keeping the brain and nervous system healthy. Some people who have had an ileostomy, can experience a gradual decrease in their levels of vitamin B12. This fall in vitamin B12 levels leads to a condition called vitamin B12 anaemia, which is also sometimes known as pernicious anaemia.

For ileostomates who have their entire colon removed and part of their terminal ileum removed, the main concern is whether the vitamin B12 is being adequately absorbed. Some may not be consuming enough vitamin B12, while others may not be absorbing it effectively, both can contribute to a deficiency.

Signs to look out for:

  • Extreme tiredness and fatigue
  • Lack of energy
  • Moodiness and irritability
  • Forgetfulness and problems with memory
  • An altered taste
  • A sore or red tongue
  • Pins and needles sensation in legs, arms, hands or feet
  • Vision issues
  • Loss of appetite
  • Ears ringing (tinnitus)
  • Mouth ulcers

See your GP if you experience the above and think you may have a vitamin B12 deficiency. This condition can be easily diagnosed based on symptoms and the results of a blood test. Most cases of vitamin B12 can be easily treated with injections or tablets to replace the missing vitamins.

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