What it is

Why it's done

Reasons for having an ileostomy

An ileostomy is usually done when your large bowel (colon) needs to be removed, or rested after treatment or surgery.

An ileostomy might be needed because of:

• a growth in the large bowel, such as bowel cancer, or growths that might turn into cancer over time (bowel polyps)
• inflammation (such as inflammatory bowel disease) or infection (such as an abscess)
• not enough blood getting to your colon (such as ischaemic bowel disease)
• a bowel obstruction, when your colon becomes blocked so poo and wind cannot move through it
• megacolon, where part of your colon becomes very stretched and swollen and might tear (rupture)
• injury to your spinal cord, which means you cannot control when you poo (rectal incontinence)
• Hirschsprung's disease, where problems with nerves in the colon cause blockages and infections
• problems with your colon or pelvic floor muscles that cause severe constipation that does not get better with treatment
• problems with your bowel because of a condition that affect the brain and spinal cord, such as multiple sclerosis

The ileostomy might be temporary and reversed later, or permanent, depending on why it's needed.

Alternatives to an ileostomy

It may be possible to have another procedure instead of a permanent ileostomy, depending on why it's being done.

• colostomy – 1 end of the colon is diverted through an opening in the tummy. This is a similar procedure to an ileostomy, and can be used to treat Crohn's disease and bowel cancer.
• sigmoid colectomy – removal of the diseased part of your bowel. This can be used to treat bowel cancer or diverticulitis.
• partial colectomy – surgery to remove part of the colon if you have colon cancer. You might need an ileostomy as well as this procedure.
• ileoanal pouch (also known as a J-pouch) – part of the small intestine is used to make an internal pouch that's connected to your anus, allowing you to poo normally. It can be used to treat ulcerative colitis.

Preparation

How to prepare for an ileostomy

An ileostomy is a big change physically and mentally, and getting used to it can take time. Asking questions and talking about your worries before the operation can help you adjust to life afterwards.

Seeing a stoma nurse

Before an ileostomy you'll usually see a stoma nurse at the hospital where the surgery is happening.

The stoma nurse will usually:

• look at and feel your tummy to find the best position for your stoma – they'll mark the area with long-lasting ink so the surgeon can see it (called "siting your stoma")
• give you information about the operation and answer any questions you have
• give you different types of stoma bags to try and show you how to use them
• give you the contact details of the stoma nurses at the hospital
• tell you how to prepare for the operation

It might help to practice wearing and changing a stoma bag at home before the surgery. This can help build your confidence and test whether it causes any skin problems like itching or a rash.

Preparing your bowel for surgery

Your stoma nurse or hospital admission department should send you information about how to get ready for ileostomy surgery.

This usually involves following a special diet and possibly taking laxatives in the days before the operation. This is so your bowel is empty on the day of the operation.

If your ileostomy is done as an emergency, you may not be able to prepare for it, but a stoma nurse will be able to support you afterwards.

Find out more about what to expect before your stoma surgery on the Bladder and Bowel Community website.

How is it performed?

What happens during an ileostomy

There are 2 main ways loop and end ileostomy surgery can be done:

• laparoscopic (keyhole) surgery – small cuts (incisions) are made in your tummy
• open surgery – a single larger cut is made in your tummy

Both are done using a general anaesthetic, so you'll be asleep during the operation.

If some or all of your large bowel (colon) is also going to be removed during the operation, a long cut down the middle of your tummy will usually be made.

Types of ileostomy

Loop ileostomy

• The surgeon makes a small cut (incision), usually on the right-hand side of your tummy, to make an opening for your small bowel to pass through.
• They pull a loop of small bowel through the opening in your tummy and hold it in place.
• They cut the loop open and stitch it to your skin, making 2 openings that are joined together at the base.
• 1 stoma is "active" and leads to your small bowel. Poo leaves your body from the active stoma.
• The other stoma is "inactive" and leads to your large bowel (colon). A sticky white or yellow mucus might come out of the inactive stoma sometimes, and from your bottom, which is normal.
• A loop ileostomy is usually temporary, and your colon is not usually removed.

End ileostomy

• The surgeon makes a small cut (incision), usually on the right-hand side of your tummy, to make an opening for your small bowel to pass through.
• They separate your small bowel from your large bowel (colon), then pull the end of your small bowel through the opening in your tummy and stitch it to your skin.
• Poo leaves your body through the stoma.
• A sticky white or yellow mucus might come out of your bottom sometimes, which is normal.
• An end ileostomy can be temporary or permanent, and some or all of your colon might be removed.

After the operation

After the operation, you'll have a stoma bag attached to your tummy. Your stoma will be swollen and might ooze blood at first. It will shrink over the next 2 to 3 months.

You might also have a catheter in your bladder to drain away pee, and a drip (cannula) in your arm giving you fluid and medicines.

Your tummy can feel bloated and sore. Ask for painkillers if you need them.

You'll usually stay in hospital for 3 to 10 days, or until poo starts to come out of your stoma and you feel confident taking care of it.

Your stoma nurse will make sure you're comfortable wearing and changing your stoma bag before you go home.

Find out more about what to expect after stoma surgery on the Bladder and Bowel Community website

Ileostomy reversal

If you have a temporary ileostomy, it's possible to have it reversed with further surgery. Reversals usually happen for loop ileostomies that have been done in an emergency.

A reversal procedure involves closing the openings so the bowel can be put back into the tummy. After a reversal you will poo from your bottom and will no longer need a stoma bag.

It's not always possible to reverse an ileostomy. When it's possible it's usually straightforward but it comes with its own risks. Your doctor may need to do some tests to make sure your bowel is working properly before it's done.

A reversal can be done at any time but will be at least 6 weeks after you had an ileostomy. This is to make sure you've recovered properly and any swelling has gone.

Speak to your doctor about whether a reversal is an option for you.

Find out more about stoma reversal on the Colostomy UK website

Recovery

Recovering from an ileostomy

It usually takes 6 to 8 weeks to recover from an ileostomy and get back to your usual activities. But you should avoid strenuous activities or heavy lifting for 3 months while your tummy muscles heal.

It's important to rest and take the time you need to adjust to the change in your body.

You may feel tired after the operation but you could try gentle exercise, such as a short walk, when you feel ready.

Wait until you've recovered from the operation to drive again, usually at least 6 weeks. After that, having an ileostomy will not affect your driving.

It's important to eat a low fibre diet for about 6 weeks after the operation while your bowel heals.

Longer term, there are changes you may need to make when living with an ileostomy, including using stoma bags and making changes to your diet.

Lifestyle changes and living with an ileostomy

Many people find their daily life improves after having an ileostomy because they no longer have pain or uncomfortable symptoms.

Having an ileostomy should not stop you living a full and active life, but you may need to make some lifestyle changes.

Stoma bags

There are 2 main types of stoma bag:

• A 1-piece bag has a sticky back that fits around the stoma. You have to take the whole thing off each time you change it.
• A 2-piece bag has a separate sticky ring that fits around the stoma. You connect the bag to the ring so the ring stays in place and only the bag comes off when you change it.

Some bags have a drain so you can empty them into the toilet through an opening, and others are closed and need to be changed when full.

How often you have to change the bag varies between people. You'll find what works for you over time.

If you have a permanent ileostomy, your GP will give you a prescription to order stoma bags for free on the NHS.

If you have a temporary ileostomy you may need to pay for stoma bags.

You can choose where you get the bags from and what type suits you.

Your stoma nurse can give you more information about how to order the bags.

Find out more about choosing the right bag and bag suppliers on the Colostomy UK website

Diet

You can eat your usual foods and should aim to have a healthy, balanced diet.

Some foods can cause farting or bad smells from the stoma so you may want to avoid those.

Eating regularly without long breaks between meals and chewing your food well will stop your ileostomy getting blocked.

It's also important to drink plenty of fluids to avoid dehydration.

For more information on diet and hydration with an ileostomy visit the Colostomy UK website

Medicines

Many medicines are designed to dissolve slowly in the digestive system. This means they may not be as effective if you have an ileostomy, as they could come straight out into your bag.

Speak to your doctor about alternative ways of having medicines, such as in liquid or powder form.

You should not stop taking any prescribed medicine without speaking to your doctor.

Work

You should be able to go back to work when you feel well enough and comfortable looking after your stoma.

Speak to your employer if your job involves heavy lifting or lots of manual work.

Body image and relationships

It's normal to worry about changes to your appearance after having an ileostomy.

Stoma bags are well designed and you should be able to wear your usual clothes.

Once you feel ready, you can continue with your sex life as before. If you feel any discomfort, trying different positions might help.

You can talk to your stoma nurse if you're having problems with sex, relationships or body image.

Information:

For more information and support about living with an ileostomy, visit:

• Ileostomy & Internal Pouch Association: information and support leaflets
• Ileostomy & Internal Pouch Association: support volunteers for people with an ileostomy

Complications

Possible complications of an ileostomy

As with any operation, complications can happen during or after an ileostomy. Your doctor will explain the risks to you before the procedure.

Infection

There's a small chance that the wound around your ileostomy could become infected. This is usually treated with antibiotics.

Dehydration

Having an ileostomy makes it harder to stay hydrated.

If you notice signs of dehydration such as fatigue, dry mouth or lots of poo coming out of your stoma, speak to your stoma nurse or another healthcare professional to get advice.

Bowel blockage or obstruction

If the poo coming out of your stoma slows down or stops, you may have a bowel blockage.

Speak to your stoma nurse if you have cramps, feel nauseous or notice swelling around your stoma. They may recommend avoiding solid foods, massaging your tummy or having a hot bath.

In more serious cases, your bowel could burst (rupture), and you may need further surgery.

Ask for an urgent GP appointment or get help from NHS 111 if:

You've had an ileostomy and:

• your temperature is very high, or you feel hot and shivery
• you have lots of blood coming from inside your stoma or in your stoma bag
• you have signs of dehydration
• your stoma is not active for more than 12 hours
• you have severe cramps, nausea and vomiting

These could be signs of an infection or a serious bowel obstruction.

You can call 111 or get help from 111 online

Problems with your stoma

You may get problems with your stoma, which can include:

• a parastomal hernia causing swelling under the skin – this may be managed by your stoma nurse or with surgery
• the stoma going back into your tummy instead of sticking out (stoma retraction) – different types of bags and accessories can help
• the stoma coming out too far above the skin (stoma prolapse) – different types of bags can help
• skin damage around the stoma – this can be helped with special products such as sprays or wipes and measuring your stoma regularly to make sure the bag fits well

Find out more about living with a stoma on the Crohn's and Colitis UK website