Following an ileostomy, the speed of recovery will depend on the nature and severity of the condition, complexity of the surgery, and age and overall health of the patient.
The average stay in hospital is around 10-12 days after the operation. The abdominal wall will initially be very sore, but will settle down.
Normal activities are usually possible 4-8 weeks after an ileostomy and an ileo-anal pouch. Keeping active can help to reduce the risk of developing complications, but strenuous activity should be avoided for about three months. Your surgeon will be able to give you further advice about this.
Living with an ileostomy
After an ileostomy, you will be referred to a stoma nurse who specialises in helping people with a stoma. The nurse will inform you about equipment you will need, and advise on managing your stoma.
If you have an ileostomy, you will be entitled to free NHS prescriptions for necessary care products. At first living with an ileostomy can be a distressing experience. It may take some time before you get used to it.
However, with practise and the support of your stoma nurse and family, using the pouch will become routine. You will be able to live a normal life and based on recommendations from your doctor, you will be able to choose what you eat, participate in many kinds of sport and return to work.
You can also choose who you tell about your surgery, and if you wish to keep it private most people find they are able to conceal their pouches.
Many people with a stoma say their quality of life has improved since having an ileostomy because they no longer have to cope with distressing and uncomfortable symptoms. However, if you are finding difficulty in adjusting after your operation, it may help to get in contact with others who have similar experiences through support groups such as The Ileostomy and Internal Pouch Support Group.
Read recommendations after an ileostomy for information on how to deal with some common issues.
Stoma bag
Choosing the right stoma pouch is important. The system should be as comfortable as possible. Your stoma nurse will be able to provide advice about this.
Stoma bags are made from odour-resistant materials and can be easily drained through an opening in the bottom. If fitted properly, it is impossible to see a stoma bag under everyday clothes.
It is recommended that you empty your bag when it is one-third full because this will prevent the bag from bulging underneath your clothes. Stoma bags usually have to be replaced every three to seven days.
Stoma care
The output of your stoma (which is a continual flow of a pasty liquid) can cause irritation to the skin surrounding the opening, so it is important to keep the skin clean. You should regularly clean the area using mild soap and water.
You may notice small spots of blood around the stoma when you clean it - this is perfectly normal. It is caused by delicate blood vessels in the tissues of the stoma, which can bleed easily. However, the bleeding will soon stop.
Burning or itching skin is a sign that you need to change your system. Occasionally, larger areas of the skin can become inflamed. If this occurs, contact your GP or stoma nurse, who will be able to prescribe a powder or spray to treat the inflammation.
Ileo-anal pouch
If you have had an ileo-anal pouch created through surgery, you may find you need to empty it (by going to the toilet) up to 20 times a day during the first few days after the operation. However, the number of times you need to go to the toilet will slowly reduce as the pouch expands and you get used to controlling muscles that surround it.
Most people find their ‘pouch activity’ settles down after six months to a year. However, the number of bowel movements will differ from person to person. For example, some people will only need to empty their pouch twice a day, whereas others may have to empty it six to eight times a day.
Leakage
Almost half of all people who experience leakage from their pouch do so during the first few weeks after the operation. This problem is usually resolved as they get used to having the pouch, and as their muscle control improves.
Pelvic floor exercises, as outlined below, are a good way of improving your muscle control:
- Sit or lie comfortably with knees slightly apart.
- Squeeze or lift at the front as if you were trying to stop the passage of urine, and then at the back as if you were trying to stop the passage of wind
- Hold this contraction as long as you can (at least two seconds, increasing up to 10 seconds as you improve)
- Relax for the same amount of time before repeating.
Ideally aim for 10 short, fast and strong contractions.
Continent ileostomy
For the first three to four weeks after surgery, the catheter (thin tube) will be permanently connected to your pouch and to a drainage bag strapped to your leg. This is to allow the pouch to heal.
Most people are well enough to leave hospital seven to ten days after surgery. While you are in hospital, you will be taught how to use the catheter to drain your pouch and how to regularly irrigate (wash out) the catheter using tap water.
By the third or fourth week after surgery, your pouch should have healed enough to remove the permanent catheter, and you can then drain the pouch at regular intervals into a basin or other container.
For the first few weeks, you may need to drain the pouch every two to three hours, before attaching the catheter to a drainage bag when you sleep to prevent any leakage.
Over time, the amount of times that you will need to drain the pouch should reduce. By the sixth week after surgery, most people need to drain their pouch four to six times during the day, and once before sleeping. By this time, you will probably not need to wear a drainage bag when you are sleeping.
As with an end or loop ileostomy, it is important to keep the skin around the catheter clean to prevent irritation or infection. Regularly clean this area using water and a mild soap.
