Ileostomy creation: why it is done, what happens and recovery

The NHS says an ileostomy is usually done when the large bowel (colon) needs to be removed, or rested after treatment or surgery. The ileum is the last section of the small bowel, so with an ileostomy the output no longer travels through the colon, rectum and anus.

The NHS lists a wide range of underlying reasons, from growths such as bowel cancer or polyps, to inflammation such as inflammatory bowel disease or infection such as an abscess. Others are reduced blood supply to the colon, a bowel obstruction, megacolon where part of the colon becomes very stretched and swollen and might tear, spinal cord injury that removes control over bowel movements, Hirschsprung disease, severe constipation that has not responded to treatment, and bowel problems linked to conditions such as multiple sclerosis.

Whether the stoma is temporary or permanent depends on why it is needed. The NHS also notes that alternatives may be possible depending on the condition, including a colostomy, a sigmoid or partial colectomy, or an ileoanal (J-pouch) reconstruction, which can be used in ulcerative colitis. Your surgical team will explain which of these fit your situation.

In a loop ileostomy the surgeon makes a small cut, usually on the right-hand side of the tummy, pulls a loop of small bowel through, cuts the loop open and stitches it to the skin. The NHS explains this leaves two openings joined at the base: an active stoma leading to the small bowel, from which poo leaves the body, and an inactive one leading to the colon. Sticky white or yellow mucus can sometimes come from the inactive stoma and from the bottom, which the NHS says is normal.

In an end ileostomy the small bowel is separated from the colon and the end is brought through the tummy wall and stitched to the skin, so poo leaves through that single stoma. Mucus may still pass from the bottom sometimes. The NHS says an end ileostomy can be temporary or permanent, and some or all of the colon might be removed.

Before an ileostomy you will usually see a stoma nurse at the hospital where the surgery is happening. The NHS says the nurse will examine your tummy to find the best position for the stoma and mark it in long-lasting ink, a step called siting the stoma. They also explain the operation, let you try different bags and give you contact details for the hospital stoma nurses. It can help to practise wearing and changing a bag at home beforehand to build confidence and check for skin reactions.

The Bladder and Bowel Community describes a pre-operative assessment that may include a meeting with the surgeon about risks and consent, a meeting with the anaesthetist about pain relief, blood tests and a heart tracing (ECG). It says bowel-cleansing laxatives are not essential and many surgeons choose not to use them because cleansing can cause loss of minerals and electrolytes, so follow your own surgeon's instructions. The NHS says preparation usually involves a special diet and possibly laxatives in the days before surgery, and that emergency operations may not allow time for any preparation, although a stoma nurse can support you afterwards.

The NHS says there are two main approaches, laparoscopic (keyhole) surgery through small cuts or open surgery through a single larger cut, both under general anaesthetic. If some or all of the colon is being removed at the same time, a long cut down the middle of the tummy will usually be made.

Afterwards you will have a stoma bag on your tummy. The NHS says the stoma will be swollen and might ooze blood at first, and will shrink over the next 2 to 3 months. You may also have a urinary catheter and a drip in your arm for fluid and medicines, and your tummy may feel bloated and sore, so ask for painkillers when you need them. Your stoma nurse will make sure you are comfortable wearing and changing the bag before you go home.

The NHS advises eating a low fibre diet for about 6 weeks while the bowel heals, then gradually introducing foods to see whether any cause problems. Eating regularly, chewing well and drinking plenty of fluids helps to stop the ileostomy blocking and to avoid dehydration. Driving is usually off the table for at least 6 weeks, after which having an ileostomy does not affect it.

There are two main bag designs. A one-piece bag has a sticky back that fits around the stoma and comes off entirely when changed. A two-piece system has a separate sticky ring that stays in place while the bag clips on and off. Some bags can be drained into the toilet and others are closed and changed when full. How often you change one varies between people.

The NHS says people with a permanent ileostomy can get stoma bags on prescription free of charge, whereas those with a temporary ileostomy may need to pay. Many medicines are designed to dissolve slowly and may not work as well if they pass quickly into the bag, so ask your doctor about liquid or powder alternatives and do not stop any prescribed medicine without advice. The NHS says many people find daily life improves because they no longer have pain or uncomfortable symptoms, and you should be able to return to work when you feel well and comfortable looking after your stoma. Stoma nurses can also talk through body image, sex and relationships.

The NHS lists infection of the wound around the stoma, dehydration and bowel blockage as possible complications. Signs of dehydration include fatigue, dry mouth or lots of output from the stoma. If output slows or stops with cramps, nausea or swelling around the stoma, speak to your stoma nurse, who may suggest avoiding solid foods, massaging the tummy or having a hot bath. In more serious cases the bowel could burst and further surgery would be needed.

Stoma-specific problems include a parastomal hernia causing swelling under the skin, retraction where the stoma goes back into the tummy, prolapse where it comes out too far, and skin damage around the stoma, which can be helped by special products and by measuring the stoma regularly so the bag fits well. Contact your stoma nurse or GP if you think there is a problem or skin is breaking down.

The NHS advises asking for an urgent GP appointment or getting help from NHS 111 if you have a very high temperature or feel hot, cold or shivery, lots of blood from inside the stoma or in the bag, signs of dehydration, a stoma that has not been active for more than 12 hours, or severe cramps with nausea and vomiting, because these can signal infection or serious obstruction.

If an ileostomy is temporary, the NHS says it may be possible to reverse it with further surgery that closes the openings and returns the bowel to the tummy, after which you pass poo from the bottom again and no longer need a bag. A reversal can be done at any time but will be at least 6 weeks after the ileostomy, so that you have recovered and swelling has gone. The NHS describes it as usually straightforward when possible but not risk-free, and tests may be needed first to check the bowel is working properly.

Timing in practice depends on your recovery, any further treatment such as chemotherapy and the state of the bowel beyond the stoma, so this is a conversation to have with your surgeon rather than a fixed schedule. Some people are offered NHS care and others choose to see a private colorectal surgeon; either route involves the same preparation and a stoma nurse as a central part of the team.