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Ileostomy surgery for inflammatory bowel disease (IBD)

An ileostomy is a type of stoma created using the end of your small intestine (known as the ileum). A stoma is an opening in your abdomen which is surgically created. It diverts faeces into a bag attached to the opening.

Stomas can be temporary or permanent. If you are given a permanent stoma then it will not be possible to reconnect your gastrointestinal tract at a later date. A temporary stoma is given when it is likely that a reversal will take place at a later date. This is where the GI tract is reconnected so you can go to the toilet ‘normally’ again.

What forms of IBD is ileostomy surgery used to treat?

Crohn’s disease and ulcerative colitis.

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Why is ileostomy surgery needed for IBD?

Ileostomies are created when the large intestine (colon) is damaged and either needs removing (permanent ileostomy) or needs to be rested to allow it to recover (temporary ileostomy) before intestines are reconnected. 

Ileostomies are often created following proctocolectomy or colectomy surgery.

How is ileostomy surgery done?

Ileostomy surgery can be done either through keyhole surgery (laparoscopic) or open surgery.

If you are having any part of your colon removed then this will be done before the stoma is formed. Once this is completed the surgeon will create your stoma.

There are types of ileostomy you can have:

  • Loop ileostomy - a loop of ileum is pulled through a small incision in your abdomen. The loop is opened up and both pieces are stitched to the surrounding skin. This is done so both pieces are close together. The end still attached to your small intestine will discharge food waste from your body. A loop ileostomy is usually done for temporary ileostomies
  • End ileostomy - the end of the ileum still attached to the upper part of the gastrointestinal tract is pulled through a small incision in your abdomen. It is stitched to the surrounding skin. The other end is sealed and left inside your body. End colostomies are usually permanent and the colon and rectum may be removed

Before your surgery you will likely be introduced to a specialist stoma nurse who can explain about the stoma you will be getting, the equipment you will need to use afterwards and discuss with you the position of your stoma. Ileostomies are usually placed on the right hand side of your abdomen, but you can usually discuss the positioning of it before surgery.

Recovering from ileostomy surgery

Having a stoma may seem very daunting and it will take you a bit of time to adjust to it. In the days after your surgery you will remain in hospital and specialist nurses will help to care for your stoma and teach you how to care for it yourself.

Your stoma will look moist, pinkish/red and seem quite large. This is perfectly normal following surgery and as it heals you will find that the size of your stoma reduces by around two thirds. This usually takes around 6-8 weeks. Everyone’s stoma is a different size.

It will take a few days for the stoma to start to work and at first the output may be quite watery with a strong smell. Again, as your body heals the consistency will become thicker and the odour will reduce.

You may also find that your stoma produces some noisy gas. This will settle.

While you are recovering you may be given a diet to follow to allow your body to heal and start to work again properly.

Once you are well enough, and you feel confident managing your stoma, you will be able to return home. This could be after 3-10 days. You will probably be told to avoid certain activities - such as heavy lifting - for several weeks after your surgery.

Possible complications of ileostomy surgery

Complications which can happen soon after your surgery include:

  • Bleeding - a small amount of bleeding when the stoma is cleaned is normal, but if it becomes heavy or persistent you should seek medical advice
  • Ischemia/necrosis - caused by deficient blood flow to the stoma. This is usually caused during surgery and symptoms occur in the days immediately after surgery
  • Mucocutaneous separation - the stoma separates from the skin it has been attached to
  • Fistula - a channel develops in the skin alongside the stoma
  • Ulcers - these can occur from friction, often when the stoma rubs on the inside of the bag or if the opening is too tight

Complications which can happen any time include:

  • Stoma retraction - the stoma retracts below the skin surface
  • Hernia - bowel or organs surrounding the stoma may push through the weak muscle around the stoma
  • Stoma prolapse - when the stoma is displaced from its position and appears to push out through the opening, causing the stoma to increase in length and size
  • Stenosis (stricture) - narrowing or constriction of the stoma
  • Granulomas - tender red areas around the stoma which look at bit like cauliflower
  • Stoma trauma - the stoma becomes injured usually from the bag appliance or clothing
  • Obstruction - a blockage in the bowel can be caused by undigested food, a narrowing or twist in the bowel. This will cause the stoma to stop working
  • Vitamin B12 deficiency - vitamin B12 is absorbed in your ileum. If you have had some of your ileum removed then you may be susceptible to developing a vitamin B12 deficiency
  • Dehydration - you are at a greater risk of becoming dehydrated. Your large colon plays an important part in absorbing water from food waste and with an ileostomy no food passes through your colon

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Things to know about ileostomy surgery

  • You may need to adjust your diet slightly to accommodate your stoma
  • It is normal to feel as if you need to go to the toilet as you did before - even though you are no longer able to. If you still have your anus you may find that you pass some mucous. This feeling should reduce with time
  • Your stoma will not have any feeling
  • A stoma protrudes around 2.5cm from the surface of the skin - although this can vary
  • As your stoma reduces in size following surgery you will need to check the opening of your ostomy bag to make sure it is still the right size
  • Output leakages are common - especially in the early days after surgery while you get used to your stoma
  • The output of your stoma can cause irritation to the surrounding skin
  • Medications that are designed to be absorbed slowly in your digestive system may not be as effective with an ileostomy. You should discuss this with your doctor
  • After recovering from stoma surgery many people go on to enjoy many of the activities they did before
  • The stoma output will likely remain the consistency of porridge

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