What is an ostomy? Types, care and living with one

An ostomy is an opening made during surgery so that stools or urine leave the body through the abdominal wall and are collected in a bag. It can be temporary or permanent. The most common types are the colostomy, which uses the colon; the ileostomy, which uses the end of the small bowel; and the urostomy, which diverts urine.

Many people hear the word for the first time when their surgery is explained to them. Here we explain what it is, why it is done, what living with it is like and, above all, when it can be avoided or closed later.

What an ostomy and a stoma are

The ostomy is the operation; the stoma is what you can see: the end of the bowel (or urinary tract) that the surgeon brings out through the abdominal wall and stitches to the skin. It is red and moist, similar to the inside of the mouth. Right after the operation it is swollen, and it gets smaller over the following weeks.

The stoma does not hurt when touched, because it has no nerve endings that carry pain. It has no muscle to close it either, so you cannot control when it empties: that is why a bag is attached to the skin.

Types of ostomy

Colostomy

It is made with a section of the colon, the large bowel. Because the colon has already absorbed much of the water, stools are usually formed or soft. The stoma is most often on the left side of the abdomen. It is the ostomy most often considered when the whole rectum has to be removed.

Ileostomy

It is made with the ileum, the last part of the small bowel. Stools are liquid or soft and more abundant, because they have not passed through the colon. The stoma is usually on the right side. In rectal surgery it is often used as a protective ileostomy: it is left for a few months so that the join in the large bowel (the anastomosis) can heal without stools passing through it, and then it is closed.

Urostomy

It diverts urine when the bladder has to be removed, for example in some extensive pelvic operations such as pelvic exenteration. Urine flows continuously and is collected in a bag with a drainage valve.

Temporary or permanent

A temporary ostomy is made with the intention of closing it, usually to protect a bowel join or because the operation had to be done as an emergency. A permanent ostomy is made when the bowel cannot be reconnected, for example when the anal sphincter has to be removed.

Why an ostomy is made

• Very low rectal cancer that involves the sphincter or does not leave a safe margin: it may require a permanent colostomy.
• Protection of an anastomosis after removing part of the rectum: temporary ileostomy.
• Bowel obstruction caused by a tumor, operated on as an emergency.
• Complications such as a perforation or a leak from the bowel join.
• Complicated diverticulitis with peritonitis, where a colostomy is sometimes made and closed later. We explain this on the diverticulitis page.
• Extensive pelvic surgery in which several organs are removed.

What the operation involves

Before surgery, the stoma nurse marks the best place for the stoma on the skin, with the patient standing, sitting and lying down, so that the bag sits on a flat, visible area away from folds, scars and the waistband. This marking makes a real difference to how well the bag sticks afterwards.

The stoma is made during the same operation that treats the disease, which is often done by laparoscopy or robotic surgery. In the following days, the nurse teaches the patient and family how to empty and change the bag before discharge.

Living with an ostomy

After a period of adjustment, most people with an ostomy work, travel, play sport and have sex. The bag cannot be seen under normal clothes, and modern systems have filters that prevent odor.

• The bag: it can be one-piece or two-piece (a baseplate stuck to the skin and a bag that clips onto it). Colostomy bags are usually closed and are replaced with a new one when full; ileostomy and urostomy bags are drainable.
• Diet: in the first weeks it is advisable to reintroduce foods gradually, chew well and eat at regular times. With an ileostomy you need to drink more and watch for signs of dehydration, because more water and salts are lost. We explain it in what to eat after an ileostomy.
• Showering and bathing: you can shower or bathe with or without the bag; water does not get into the stoma.
• Sport: you can return to physical activity gradually. In the first months it is best to avoid efforts that greatly increase pressure in the abdomen, and a support belt can be used for some activities.
• Travel: just carry spare supplies in your hand luggage.

Caring for the stoma and the skin

The stoma is cleaned with warm water and a soft sponge or gauze, without alcohol or irritating products, and dried well before fitting the bag. The opening of the baseplate must match the size of the stoma: if it is too large, stools touch the skin and irritate it. Because the stoma shrinks in the first weeks, it needs to be measured again.

The stoma nurse provides follow-up, helps choose supplies and is the first person to ask about any problem with the skin or the bag.

What should you eat after an ileostomy?

In the first few weeks the aim is to eat enough to avoid losing weight, drink enough to avoid dehydration and make the output thicker and smaller in volume. This is general guidance and is adapted to what each person tolerates and to the advice of their clinical team.

• Small, frequent meals. Five or six small meals a day: breakfast, a mid-morning snack, lunch, an afternoon snack, dinner and, if needed, something light before bed. Thicker foods are usually better tolerated at first, such as thick soups or purées and creamy rice dishes.
• Simple cooking. Grilling, baking, cooking in parchment, light stir-frying, boiling or steaming. In the early postoperative period it is best to limit very fatty foods, processed sauces, battered foods and fried foods. Foods that are very high in fibre are reduced at first and reintroduced gradually.
• Drink small amounts often, preferably between meals, aiming for at least two litres a day unless your team has advised otherwise. If the output is high, plain water is not enough and the oral rehydration solutions or electrolyte drinks recommended by your team may work better. Sugary drinks and sports drinks should not be the main source of fluid.
• Check your urine and the pouch. Pale urine and more than one litre a day usually mean you are drinking enough. If the pouch collects more than about 1,200 ml in 24 hours, the output keeps rising or there are signs of dehydration, contact your surgeon or stoma nurse. If you cannot reach them and feel unwell, go to the emergency department.

It also helps to eat at regular times, slowly and chewing well, to avoid strenuous exercise straight after meals and to limit coffee, alcohol, fizzy drinks and very sugary drinks. Sugar is fine in small amounts. Very cold, very hot or heavily seasoned foods are best avoided if they cause discomfort, and foods that cause wind can be left for a while and tried again gradually.

Signs of dehydration are a dry mouth or tongue, dizziness when standing up, marked weakness or tiredness, little or dark urine, loss of appetite, abdominal or leg cramps and confusion or unusual drowsiness. If several appear or they get worse quickly, seek urgent medical advice. Medication to reduce ileostomy output should not be changed without medical advice.

Complications and when to seek help

Most problems are mild and are solved by adjusting the supplies. The most common are:

• Skin irritation around the stoma, almost always because the bag does not fit well.
• Parastomal hernia: a bulge around the stoma.
• Prolapse (the stoma sticks out more than normal), retraction (it sinks in) or stenosis (it narrows).
• High output, especially with an ileostomy: a large amount of liquid stool that is hard to control with diet alone. Medication to reduce it is often needed.
• Dehydration, especially with an ileostomy: little dark urine, thirst, dry mouth, tiredness or cramps.

Seek urgent care if the stoma turns dark or black, if nothing comes out for hours together with pain or vomiting, if it bleeds heavily, or if signs of dehydration do not improve with drinking.

Can a permanent ostomy be avoided?

It is the question we hear most often in clinic, and the answer depends less on the tumor than on who operates and how. Many ostomies presented as permanent are not necessarily so.

Low rectal cancer: sphincter-preserving surgery allows the bowel to be reconnected in a significant proportion of tumors located 5-8 cm from the anus, provided correct oncological margins are achieved. It requires a surgeon with a high volume of rectal cancer cases and, often, a robotic approach to work in the narrow pelvis. In selected patients whose tumor disappears with chemotherapy and radiotherapy, watch and wait can even avoid surgery and, with it, the stoma.

Obstruction caused by a tumor: an emergency ostomy is usually temporary. Once the obstruction is resolved and treatment is complete, reconnection should be reconsidered.

Extensive pelvic surgery: even in pelvic exenterations, the decision on a permanent diversion is made case by case, not by protocol.

If you have been told you need a permanent colostomy and nobody has explained why the alternative is not possible, that is a reasonable reason to ask for a second surgical opinion before the operation.

Ostomy reversal: when it is possible

A protective ileostomy after rectal surgery is, by definition, temporary. It is reversed once the anastomosis has been confirmed to be intact. Without adjuvant chemotherapy it can be closed after six to eight weeks; with chemotherapy, closure is usually delayed until treatment ends, at around 6 months.

To reconnect the bowel you need:

• An intact anastomosis with no leaks, confirmed by imaging.
• A functioning anal sphincter.
• No tumor recurrence.
• Adequate nutritional and general condition for a second operation.

When the ostomy has been in place for years, reversal is still technically possible in selected cases, but it is complex surgery that should be assessed by a team with experience in salvage surgery.

Frequently asked questions

What is the difference between a colostomy and an ileostomy?

A colostomy is made with the colon and stools are usually formed or soft. An ileostomy is made with the end of the small bowel and stools are more liquid and abundant, so you need to drink more to avoid dehydration.

Does the stoma hurt?

No. The stoma has no nerve endings that carry pain. What can be uncomfortable is the surrounding skin if it becomes irritated because the bag does not fit well.

Does the bag smell or show?

Modern bags are sealed and have charcoal filters that prevent odor. When fitted correctly, it does not show under normal clothes.

How long does a temporary ileostomy stay?

After rectal surgery, a protective ileostomy is closed once the anastomosis has been checked. If no further chemotherapy is needed, it can be closed after six to eight weeks; if chemotherapy is given, closure is usually delayed until it is finished, at around 6 months.

Can you live a normal life with an ostomy?

Yes. After the adjustment period, most people work, travel, play sport and have sex. At first it is best to avoid efforts that greatly increase pressure in the abdomen.

Can the ostomy be removed later?

Temporary ostomies are made to be closed. For those presented as permanent, reconnecting the bowel is sometimes possible; it depends on whether a functioning sphincter remains, on the absence of recurrence and on general health, and it should be assessed by an experienced team.

References

• Memorial Sloan Kettering Cancer Center. Caring for your ileostomy or colostomy. Patient information.

This article is for information only and does not replace a medical consultation or the advice of your stoma care nurse.