Stoma surgery (ileostomy and colostomy): what to expect

A stoma is made when the bowel cannot safely carry waste through the normal route, or needs to be rested. Common reasons include bowel cancer surgery, severe inflammatory bowel disease, complicated diverticulitis, injury and protecting a fresh join after an operation. The NHS says a colostomy or ileostomy after bowel cancer surgery may be temporary or permanent.

Surgeons avoid a stoma wherever a safe join is possible, and many bowel operations end with the two ends sewn together and no bag at all. Sometimes the decision is made during the operation, which is why a stoma nurse often marks a site beforehand just in case.

• Ileostomy: from the small bowel, with looser output.

• Colostomy: from the large bowel, with more formed output.

• Urostomy, for urine, is a separate operation and is not covered here.

A Worcestershire stoma service describes pre-operative counselling covering preparation for surgery, sexual function, diet, travel, body image, exercise and support garments. Seeing the nurse before the operation lets you handle a pouch, ask what a stoma looks like and have the site marked on your abdomen before surgery.

Follow the fasting and bowel-preparation instructions for the operation itself, and bring your medicines. If the stoma is planned, many people find it helps to talk with someone who has one; the Norfolk and Norwich stoma service, for instance, lists charities such as Colostomy UK and the Ileostomy and Internal Pouch Association for this.

The NHS describes two kinds of ileostomy. In a loop ileostomy the surgeon pulls a loop of small bowel through a cut on the right side of the abdomen and stitches it open, giving two channels: one passes stool and the other may pass mucus. In an end ileostomy the small bowel is divided from the colon and its cut end is brought out and stitched to the skin.

Both operations are done under general anaesthetic and may be keyhole or open; if the colon is removed the cut is usually a long one down the middle of the tummy. You wake with a drainable bag already in place over the stoma.

Milton Keynes lists stoma-specific problems including a hernia beside the stoma, retraction of the stoma, prolapse and skin irritation, alongside the general risks of bowel surgery such as infection and clots. Chelsea and Westminster advises contacting your stoma nurse for a bulge, a protruding stoma, sore skin, persistent constipation or ongoing diarrhoea.

For ileostomies the practical concerns are dehydration and blockage. The Chelsea and Westminster leaflet says large undigested pieces of fibre can cause a painful blockage and that low-fibre eating in the first weeks helps prevent this. No percentages for these problems were found in the pages retrieved.

The NHS says the stoma is swollen at first and may ooze a little blood, and that it shrinks over two to three months, so the way the pouch fits can change over that time. Output starts watery and, according to a Calderdale and Huddersfield page, becomes more paste-like from an ileostomy and more formed from a colostomy. A Worcestershire page says an ileostomy pouch is drainable and changed every one to two days, while a colostomy pouch is a closed one changed about twice daily.

Chelsea and Westminster describes ideal ileostomy output as like porridge or toothpaste, advises 1.5 to 2 litres of fluid daily and lists dehydration signs: dizziness, thirst, headaches, dark or scanty urine and cramps. Eat small, regular meals. The stoma nurse will not discharge you until you are confident changing the bag, and the community stoma team usually takes over afterwards.

The NHS says an ileostomy can be reversed at least six weeks after it was made. A North Bristol leaflet says some reversals wait several months for health reasons or chemotherapy. It describes cutting round the stoma, freeing the bowel and stitching it back together, and says that most people go home after one night. Looser, more frequent stools are common afterwards and can last for weeks, and for some people up to six months.

Not everyone can have a reversal; if the rectum has been removed or the disease is ongoing, the stoma stays. Ask your surgeon early whether yours is planned as temporary.

Call your stoma nurse for sore skin, leaks, a changed colour or a stoma that has moved. Go to the emergency department, or call 999 if very unwell, for severe cramping abdominal pain with vomiting and no output, a stoma that changes colour markedly (ask your nurse what is normal), heavy bleeding, or signs of severe dehydration. NHS 111 can help you decide when you are unsure.

• Is my stoma planned as temporary or permanent?

• Where will it be sited, and will it be marked beforehand?

• Which appliances will I start with, and who supplies them at home?

• How will I be supported in the community after discharge?

• If it is temporary, when might reversal be considered?

Stoma nurse support is a regular part of NHS bowel services, and appliances are normally supplied on prescription in the community. Private hospitals vary in how much nurse time and follow-up they include, so ask what happens after discharge and who provides supplies, especially if you may need a stoma on an emergency basis.