Living with ileostomy living

Overview

An ileostomy is an opening in your belly that lets waste leave your body after your large intestine (colon) is removed or has to heal. The end of your small intestine is brought to the surface of your skin to create a stoma—a small red bump that looks like a button. You wear a special pouch (bag) that collects waste and you empty it several times a day. It is not an illness, but a way of life after certain surgeries.

Yes, many people live with an ileostomy. In the UK alone, thousands of people have this type of stoma. It is a well-understood and manageable way of life.

An ileostomy can affect anyone who has had surgery for conditions like ulcerative colitis, Crohn's disease, bowel cancer, or a severe injury. It may be temporary or permanent, and it can happen at any age—children, adults, and older people can all have one.

Symptoms

Common symptoms

• A healthy stoma is pink or red, moist, and may bleed a little when touched—this is normal.
• Your belly may make gurgling sounds, and you may pass gas often—this is expected.
• Your poo will be loose, pasty, or liquid because the colon (which normally absorbs water) is not part of the circuit anymore.
• Your skin around the stoma may feel itchy or sore if the pouch doesn't fit well or if waste leaks onto it.

Symptoms in children

• Children with an ileostomy may have skin redness or breakdown around the stoma, especially if the pouch leaks at night.
• A child may become quieter or lose interest in food if their belly hurts or if they feel embarrassed at school.
• Watch for signs of dehydration, such as fewer wet nappies or less urine, because children can lose fluids quickly through an ileostomy.

Symptoms in older adults

• Older adults may not show typical signs of a blocked bowel—like severe belly pain or vomiting—so check for confusion, weakness, or a sudden drop in pouch output.
• Skin around the stoma may tear more easily, so gentle cleaning and the right pouch fit are especially important.
• Older adults are more likely to become dehydrated with high-output ileostomies, so watch for dry mouth, dizziness, and dark urine.

Causes

Main causes

• You need an ileostomy when your large intestine (colon) and sometimes the rectum are removed or need to be rested
• Inflammatory bowel disease, such as ulcerative colitis or Crohn's disease, that cannot be controlled with other treatments
• Bowel cancer, where part of the bowel is removed and it is safer to connect the small intestine to the outside
• Injury, infection, or blocked blood flow in the bowel
• Sometimes an ileostomy is temporary—to give the bowel time to heal after surgery—and a later surgery will close it

Risk factors

• Having chronic inflammatory bowel disease
• A family history of bowel cancer or polyps
• Older age, though ileostomies are done in younger people too
• Previous abdominal surgery or radiation to the pelvic area
• Emergency surgery, where the colon cannot be safely reconnected right away

When to see a doctor

See a doctor urgently if:

• Your stoma becomes dark, very swollen, or starts pulling inward
• You have continuous bleeding from the stoma
• You have signs of a bowel blockage: no output for 12 hours, belly pain, vomiting, or swelling
• You become very weak, confused, or have a fast heartbeat

Book a routine appointment if:

• Skin soreness or breakdown around the stoma that does not heal with better pouch care
• Frequent leaks or pouch problems that you cannot fix on your own
• Loose stools that last more than a day, with signs of dehydration
• A fever or chills, which could mean an infection
• Your stoma changes size or shape over weeks—this is normal, but your nurse should check the fit
• Unexpected weight loss or changes in appetite

Diagnosis

An ileostomy itself is not a disease that needs diagnosing—it is the result of a prior surgery. When you have new problems with your ileostomy, your doctor or stoma nurse will listen to your symptoms, look at the stoma and skin, and ask about your pouch care and output.

Tests that may be done

• Physical examination of the stoma and the skin around it
• A simple test to check the pouch fit and whether it is leaking underneath the barrier
• Blood tests to check for dehydration, infection, or changes in kidney function
• If a blockage is suspected, you may need imaging (like an X-ray or CT scan) to see what is happening in the bowel
• Sometimes a small sample of skin or tissue is taken if the skin around the stoma is very sore or if the stoma changes in an unusual way

What to expect at your appointment

You do not need to be anxious about a check-up. The doctor or nurse will be gentle and will explain everything. They will often ask you to remove your pouch so they can inspect the stoma and skin. You can bring a spare pouch with you. The check is quick, and you will usually be given practical advice—like a new skin barrier, a different pouch, or tips on how to prevent leaks.

Treatment

Living with an ileostomy is mostly about learning to manage the pouch, the skin around the stoma, and your fluids and nutrition. There is no medicine that 'cures' an ileostomy, but there are many ways to prevent and treat problems like skin irritation, dehydration, or blockages.

Self-care at home

• Change your pouch and skin barrier regularly—usually every 1 to 3 days—and gently clean the skin with warm water and a soft cloth
• Dry the skin completely before applying a new skin barrier
• Use a pouch that fits the current size of your stoma, and cut the opening no larger than a few millimetres around the stoma
• Follow a regular emptying schedule—about every 4 to 6 hours—and empty when the pouch is about one-third to half full
• Drink plenty of fluids throughout the day to replace water lost through loose output
• Eat foods that may help thicken poo, like bananas, rice, applesauce, mashed potatoes, and toast—but always chew well
• Avoid foods that can cause blockage, such as nuts, popcorn, seeds, corn, raw vegetables, and very fibrous foods—especially early after surgery
• Carefully work with your stoma nurse to build a routine that works for your body type and lifestyle

Medical treatments

If you develop skin irritation, dehydration, or other problems, your healthcare team may recommend over-the-counter skin barriers or moisturizers, oral rehydration solutions (made from sachets you dissolve in water), or medicines to slow down the output. They may also adjust your diet or, occasionally, prescribe medications to manage conditions like Crohn's disease that led to the ileostomy. Always follow the exact advice from your doctor or pharmacist—never make changes on your own.

When is surgery considered?

If your ileostomy is temporary, you may have another operation later to reverse it and reconnect your bowel. Permanent ileostomies never need a repeat surgery for the stoma itself, but occasionally, further surgery is needed if the stoma narrows, causes a hernia, or if the bowel twists or blocks—your surgeon will explain if this is ever required.

Living with this condition

Life with an ileostomy is a journey—you will learn small tricks that make a big difference. Emptying your pouch is like using the toilet, but through a bag. Many people empty it about 5 to 8 times a day. You can sleep, work, swim, and have fun. You may want to wear loose clothing or a stoma guard for sport. Taking a 'stoma bag' with spare pouches and wipes when you go out helps you feel prepared. In time, managing your stoma becomes almost as routine as brushing your teeth.

Lifestyle tips

• You can travel, but always carry extra pouches, skin barriers, wipes, and a change of clothes in your hand luggage
• Swimming is possible—many people wear a small, covered pouch and waterproof tape—ask your stoma nurse for advice
• You can exercise; start gently with walking, swimming, or cycling, and then gradually build up strength
• Sex and intimacy are still possible after an ileostomy—talk to your partner and your healthcare team about concerns
• Fitting clothes: high-waisted trousers, skirts, or underwear can feel more secure and hide the pouch well

Diet and exercise

Your diet is the most powerful tool you have. Eat regular meals, chew food well, and drink lots of fluid (around 8 to 10 cups a day). Some foods make output thicker, while others like fruit and vegetables can make it looser. You may need to avoid foods that cause gas or blockages, like beans, onions, fizzy drinks, and raw cabbage—but you can test them one at a time. Exercise is safe and encouraged. Physical activity helps you feel better, strengthens your core, and can prevent weight gain. Start slowly and listen to your body.

Mental health and emotional wellbeing

Having an ileostomy is a major change, and it is completely normal to feel frustrated, sad, anxious, or embarrassed at times. You may worry about sound, smell, or leaking in public. These feelings can improve with time and practice. If you feel low for more than a few weeks, talk to your GP or stoma nurse—they can connect you with counselling or support groups. Your mental health matters just as much as your physical health.

Prevention

Having an ileostomy usually cannot be prevented because it is a necessary treatment for a serious condition. But you can prevent many problems that come later—especially skin damage, dehydration, and blockages. Good skin care, a well-fitting pouch, drinking enough fluids, and eating the right foods are the best ways to stay well.

Vaccines

Keep all routine vaccinations up to date. Some people with an ileostomy may not absorb certain oral vaccines as well, so your doctor can tell you if you need any extra, such as an injectable flu or COVID-19 vaccine. Always ask your healthcare provider about what is right for you.

Screening programmes

If you had your ileostomy because of bowel cancer or inflammatory bowel disease, you may need regular check-ups—like blood tests or a look at the inside of your bowel through a scope. Your specialist will give you a personal schedule. After a permanent ileostomy, you may also need monitoring for other health conditions like kidney problems or osteoporosis, so keep up with your routine GP appointments.

Complications

If left untreated

• Severe dehydration can damage your kidneys, which is dangerous—this happens when you lose too much fluid through liquid output
• An untreated bowel blockage can cause the bowel to tear, leading to a life-threatening infection called peritonitis
• Skin breakdown around the stoma can become raw, bleeding, and infected, which makes pouching harder and causes pain
• A stoma or hernia in the belly wall can become strangulated—meaning its blood supply is cut off—which needs emergency surgery
• Ongoing nutrient deficiencies, weight loss, or kidney stones can develop if you do not manage your diet and fluids well

Long-term outlook

The outlook for people with an ileostomy is very good. Most people adapt within a few months and go back to work, socializing, and enjoying hobbies. Managing your stoma becomes routine. With the right support, you can live a rich and fulfilling life—beyond the surgery. Many people say they feel healthier and more in control than they did before their illness, because the pain and urgency that led to the surgery are gone.

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