Ileostomy

An ileostomy is a surgery that lets stool pass from your body without going through your colon or anus. During ileostomy surgery, part of the small intestine, called the ileum, is brought through an opening in the belly, called a stoma. A pouch on the outside of the body is connected to the stoma, and stool goes into the pouch. This is called a pouching system. Some people call the pouch an ileostomy bag.

An ileostomy may be needed if parts of the small or large intestine are damaged, removed or affected by disease. It’s often done for conditions such as Crohn’s disease, ulcerative colitis, familial adenomatous polyposis, colon or rectal cancer, or bowel injuries.

Ileostomy types

There are a few types of ileostomies. Your healthcare team decides which type works best for you.

• End ileostomy. An end ileostomy brings one end of the ileum out through the abdominal wall to form a stoma. The other end is sewn or stapled shut and left in the abdominal cavity. This type of stoma has only one opening for stool to pass through.
• Loop ileostomy. A loop ileostomy brings part of the small intestine, called the ileum, outside the body through the opening in the abdominal wall. The ileum is partially cut to make two openings. Stool passes through one opening, called the proximal loop. Mucus passes through the other opening, called the distal loop. This procedure is sometimes called a diverting loop ileostomy.
• Continent ileostomy, also called a Kock pouch. This is an internal pouch created from part of the ileum. It has a valve that prevents waste from leaking out. You empty the pouch by inserting a catheter through the stoma several times a day. No external bag is needed. A continent ileostomy may offer an alternative for someone who doesn’t want a permanent external pouch. This procedure is less common due to surgical complexity and possible complications.

Temporary versus permanent ileostomy

You may need an ileostomy for a short time to allow the bowel to rest and heal. This is called a temporary ileostomy. It is often reversed once the bowel heals. Healing usually takes a few weeks or months, but it may take years.

You may need an ileostomy for the rest of your life if you have damage to the colon that won’t heal or surgery to remove the colon, rectum or anus. This is called a permanent ileostomy. After a permanent ileostomy, stool will always exit through a stoma.

Other ostomy procedures

An ostomy is any surgical procedure that creates an opening, called a stoma, in the belly to allow waste to exit the body. Ileostomy is one type of ostomy. But there are other types of ostomies. For example, a colostomy diverts waste from the large intestine, also called the colon. And a urostomy diverts urine through a stoma, bypassing the bladder.

An ileostomy is typically needed when the large intestine, also called the colon, or rectum cannot safely process waste due to disease, injury or other complications. Some common reasons for an ileostomy include:

• Inflammatory bowel disease, also called IBD. Conditions such as Crohn’s disease or ulcerative colitis can damage the colon.
• Colon or rectal cancer. When cancer affects the colon or rectum, all or part of the colon or rectum may need to be removed. This surgery, known as colectomy or resection, may be needed if cancer has grown through the colon or rectum, or if the cancer is causing a blockage in the intestine.
• Bowel blockage, also called obstruction. An ileostomy can help obstructions in the colon that happen due to cancer, scarring or other conditions.
• Familial adenomatous polyposis, also called FAP. This genetic condition causes numerous polyps in the colon that can turn cancerous. An ileostomy may follow colon removal to manage waste.
• Trauma or injury. Injury to the colon, such as from an accident or gunshot wound, may require an ileostomy.
• Diverticulitis complications. An ileostomy may be needed to manage serious infections or tears in the colon caused by diverticulitis. This condition causes swollen, bulging pouches in the wall of the colon.
• A condition present at birth, called congenital. Congenital conditions such as Hirschsprung disease or anal atresia may require a colostomy in infants or children.
• Recovery from surgery. To protect tissues after colon or rectal surgery, an ileostomy may be done to give the tissues time to heal.

All surgeries have risks. They include bleeding, infection, blood clots and pneumonia. They also include the risks that come with anesthesia.

Some risks specific to ileostomy include:

Stoma-related complications

These risks are specific to the creation and maintenance of the artificial opening in the belly, called the stoma:

• Prolapse. Part of the intestine may push through the stoma, a condition called prolapse.
• Retraction. The stoma may sink below the skin level, leading to leakage or difficulty attaching the ileostomy pouch.
• Bleeding. This is more common within the first 30 days after surgery.
• Narrowing, also called stenosis. The stoma opening may narrow, blocking the passage of stool. If this happens, the stoma may need to be dilated or fixed with surgery.
• Hernia. A hernia can form around the stoma, causing a bulge under the skin.
• Tissue death, also called necrosis. Blood supply to the stoma can get restricted, called tissue death. This requires urgent medical attention.
• Skin irritation. The skin around the stoma can become irritated or infected due to leakage or the pouching system not fitting properly.
• Leakage. Leaking from the stoma is more common right after surgery, but it can develop later due to weight loss or gain and pregnancy.
• Separation of the stoma from the skin. The stoma is attached to the skin with sutures. Sometimes, the sutures detach, creating an open wound.

Bowel-related complications

These risks involve the intestines and their function following ileostomy surgery:

• High stool output or diarrhea. Most people empty the pouching system 4 to 6 times a day. If you’re emptying the pouch more often, contact your care team about how to manage it.
• Blockage. The stoma or intestines can become blocked, called obstruction. This can lead to pain and digestive issues.
• Scar tissue that forms after surgery, called adhesions. Scar tissue may form after surgery, binding organs and tissues together. This may possibly cause blockages or limit blood flow.

Other complications

Other risks associated with ileostomy include:

• Dehydration. Increased fluid loss through the stoma can lead to dehydration, especially in the early stages of healing after surgery.
• Problems absorbing nutrients. If the surgery bypasses or removes large segments of the bowel, it may affect nutrient absorption.

In addition to these physical risks, an ileostomy can have a psychological impact. Adjusting to life with an ileostomy can be challenging and may affect mental health and quality of life. If you’re having a difficult time adjusting to living with an ileostomy, reach out to your healthcare team. The team can offer resources to help or connect you with a support group.

Whether your ileostomy is temporary or permanent, proper preparation can ease the transition and help you adapt to your new routine. Preparing for ileostomy surgery typically involves these steps:

Preoperative assessment

An assessment is commonly done before the operation. The assessment may include these topics:

• Caffeine, alcohol, tobacco and e-cigarette use. These products may affect how you heal and recover.
• Medicines or supplements that you take. You may need to stop taking certain medicines or supplements before surgery. Some medicines also may affect healing afterward.
• Buildup of physical strength. If you’re able and your healthcare team approves, engage in light exercise such as walking or stretching. Stronger overall health can speed up healing after surgery.
• Marking the stoma, also called ostomy, site. A member of the care team marks the stoma site. The stoma is typically placed near the surgery location. Your natural skin folds, muscles in your belly or scars you may have can affect the choice of the site. The location of your belly button, waistline and hipbone also may be factors. Your care team can help choose a spot that you can easily reach and see when you sit and stand. However, final site selection happens during surgery, when the surgeon can see the colon.
• Diet and fasting. You may need to follow a special diet or use a bowel-cleansing solution before surgery. Talk with your care team about your instructions.

Plan for your hospital stay

You’ll spend at least a few days in the hospital after your ileostomy. How long you stay depends on your situation. Plan for someone else to take care of your responsibilities at home and at work.

Think ahead about what you might like to have with you while you’re recovering in the hospital. Things you might pack include:

• A robe and slippers.
• Toiletries, such as your toothbrush and toothpaste and, if needed, your shaving supplies.
• Comfortable clothes to wear home. Loose-fitting clothes are best after surgery to avoid pressure on the stoma.
• Activities to pass the time, such as books, magazines or games.

During your ileostomy

Ileostomy surgery can be done using either an open or a laparoscopic approach. The choice depends on factors such as your overall health and the reason for the ileostomy. The choice also depends on the surgeon’s recommendation.

• Open ileostomy. Open surgery involves making a longer incision in the belly to access the small intestine. The surgeon repositions or removes the affected part of the intestine by hand. Open surgery typically requires a longer hospital stay and recovery time but may be necessary for complex conditions. This approach is more common in emergency situations that need quick intervention.

• Minimally invasive ileostomy. Minimally invasive ileostomy includes laparoscopic or robotic ileostomy. Both laparoscopic and robotic surgeries use a few small incisions in the belly. A laparoscope is a thin tube with a tiny camera at the end. The camera lets the surgeon see inside the body during surgery.

  A robotic surgery system includes a camera arm and other arms that hold surgical tools. Several members of your care team are in the surgical room during robotic surgery. They use a monitor to guide the camera and tools.

The type of operation you have depends on your situation and your surgeon’s expertise. Laparoscopic and robotic ileostomy may reduce pain and recovery time after surgery. But not everyone is a candidate for these procedures.

The most common types of ileostomy are end ileostomy and loop ileostomy. Both types typically involve the following steps:

• Anesthesia and preparation. After you arrive for your surgery, your healthcare team takes you to a preparation room. Members of the team monitor your blood pressure and breathing. You may receive an antibiotic medicine through a vein in your arm.

  Then you are taken to an operating room and positioned on a table. You receive a medicine that puts you in a sleep-like state called general anesthesia. You won’t be aware of what’s happening during your operation.

• Surgical incisions. If you’re having open surgery, the surgeon makes a large incision in your belly. For laparoscopic surgery, several small incisions are made, just large enough for a camera and surgical tools.
• Locating the ileum. The surgeon identifies the ileum and carefully separates it from surrounding tissues while preserving its blood supply.
• Creation of the stoma. The surgeon creates an opening in the abdominal wall. The ileum is cut, then brought through the abdominal wall to form the stoma. The ileum is sewn to the skin at the opening to secure the stoma. The stoma now serves as the new exit point for stool, which will be collected in an ileostomy pouch.
• Closure of incisions and ileostomy pouch placement. If you have a temporary ileostomy, the surgeon makes sure that the ileum can be attached again in a future reversal surgery. The surgeon closes the surgical site with stitches or staples. An ileostomy pouch attaches to the stoma to collect waste.

After your ileostomy

Depending on whether you have open or laparoscopic surgery, you may stay in the hospital for a few days to a week. Healing after surgery can take time, usually around 6 to 8 weeks. It’s important to rest and recover. People who have laparoscopic surgery may recover faster than those who have open surgery.

While you’re recovering in the hospital, your healthcare team can teach you how to care for your ileostomy. Your team may include a nurse who specializes in ostomy care, called a wound ostomy continence or WOC nurse. Your care team also can answer questions you may have about your new pouching system and about adjusting to daily life while wearing it.

Here are a few ileostomy basics to know:

The pouching system

In the hospital, you change your ileostomy pouching system every 1 to 4 days. At home, you change your system about two times a week. Your healthcare team can help you decide which type of pouching system is best for you.

Your pouching system includes both a pouch to hold stool and a sticky barrier called a wafer. The wafer attaches the pouch to your skin and protects the skin. The opening in the wafer should fit closely around the edge of your stoma to protect your skin as much as possible.

Stool should not touch the skin for long periods of time. If it does, it can cause healthy skin to break down. If the pouching system lifts off your skin, you must change it to protect your skin.

Some people with ileostomies prefer to wear a belt or tape to hold the pouch in place. Others don’t wear it. If you would like to use a belt, talk with an ostomy nurse about finding one with a proper fit.

Stoma care

The stoma usually looks red, swollen and moist. It may stick out up to 1 inch above the skin of your abdomen. The swelling gets better with time. Your stoma slowly may become smaller during the first 4 to 8 weeks after surgery.

Knowing how to care for your stoma, often called an ostomy, is an important part of preparing for an ileostomy. Your healthcare team may offer you information on:

• Stoma care. A WOC nurse or a healthcare team member who specializes in ostomy care may meet with you to teach you what to expect with your ileostomy. Your care team can show you proper techniques for cleaning and maintaining your pouch and caring for your stoma.
• Stoma supplies. Your care team can help you choose the ostomy supplies that suit you best. Some companies offer samples that help you explore different products. As you recover and become more familiar with your ostomy and its supplies, you may want to experiment with different products to better meet your preferences.

Emptying the pouch

Your healthcare team can teach you how to empty your ileostomy pouch from the bottom. You do this while you sit on the toilet or stand in front of the toilet. You empty your pouch often, usually 4 to 8 times a day. To keep the pouch from showing under clothing, empty it once it reaches one-third to one-half full. This also avoids excess weight in the pouching system, which may loosen the seal.

Stool output

Right after surgery your stool is liquid. The stool usually thickens within a few weeks as the small intestine begins to absorb more water. Before surgery, the large intestine absorbed some of this water. Diet, emotional state and medicines may affect the consistency of your stool.

When bowel function first returns, the amount of stool that passes from the ileostomy may be hard to predict. Shortly after surgery, you may need to empty the pouch more often. As your body recovers from surgery, your small intestine adapts. The amount of stool your body passes will likely lessen. But if the length of the small intestine left inside your body is short, you may need to empty the pouch more often.

Odor control

Odor is a common concern for people with ileostomies. Although the pouch is odor-proof, there will likely be some odor when you empty it. You may find that certain foods cause more odor in your stool.

You may use an odor eliminator or deodorant in the pouch if the odor bothers you. There also are different deodorants available that you can take by mouth. A member of your care team can talk with you about these products.

Skin care

People with ileostomies have a higher risk of skin irritation due to the pH balance of the fluid in the small intestine. Your healthcare team can give you tips on keeping your skin healthy. Tips may include helping you find the right pouch supplies and techniques for changing the pouching system that are easier on the skin.

Living with a colostomy

It takes time to become comfortable with an ileostomy. You may have many questions as you get used to living with an ileostomy and plan your first ventures outside of your home. Can I still travel after an ileostomy? Can I swim? How do I shower? Do I need to buy different clothes? How will it affect my intimate life? Once you adjust, you’ll likely find that it’s possible to do many of the same activities you enjoyed before your ileostomy.

Bathing and swimming

You can shower with or without your ileostomy pouching system. Water will not go into the stoma. However, keep shower spray from hitting directly on your stoma or pouching system. This helps prevent injury to the stoma. And it helps prevent the pouching system from becoming loose.

Shower or bathe when the stoma is less active. For example, do so first thing in the morning. Soap does not harm your stoma. But you need to rinse off any soap film from the skin around the stoma. Soap that gets under the pouching system may cause skin irritation.

You may swim with an ileostomy. Swimsuits with a pattern or design in the fabric may be more concealing. Dry the tape and pouching system well after you bathe, shower or swim. A hair dryer placed on a cool setting can help with drying.

Clothing

The clothes you wore before surgery may not need to change after surgery. However, the stoma has a different placement in each person. Sometimes clothing adjustments may be necessary. Most people avoid restrictive clothes or accessories, such as belts. Restrictive clothes below the ileostomy can prevent stool from flowing into the pouch.

Intimacy

Intimacy after an ileostomy can still be fulfilling, though it might take some adjustment due to changes in body image and the presence of a stoma and pouch. Many people worry about leaks or odor, but using a smaller pouch, emptying it beforehand, or covering it with clothing or a special wrap can help ease those concerns. Open communication with a partner about feelings and preferences, along with time to build confidence, can make physical closeness feel natural again.

Diet and nutrition

An ileostomy does not affect the ability of your body to digest food. Over time, you learn about your response to food. The following information may be helpful in managing your ileostomy:

• Eat on a schedule. Eat meals at regular times and try to eat three or more small meals a day. This helps digestion and controls stool output.
• Eat slowly and chew food well. Chewing helps digestion.
• Stay hydrated. Drink 8 to 10 cups of fluid each day. A cup is 8 fluid ounces. This helps prevent constipation and dehydration.
• Try new foods one at a time. This helps you find out what foods agree with you.
• Keep track of how different foods affect your stool. This helps you choose foods to improve stool consistency.

For the first two weeks after surgery, limit foods that may cause gas or loose stools. These include beans, beer, broccoli, cabbage, cauliflower, onions and carbonated drinks. Also limit foods that you may not digest fully. These include fresh fruits and raw vegetables. Avoiding these foods helps lessen the amount of gas and stool you have.

Ejercicio

Your ileostomy usually does not limit your physical activity. Light exercise helps firm muscles, and it keeps the digestive tract working properly. The level and type of exercise you choose often depends on the exercises you were comfortable with before surgery.

Walk inside or outside. It is one of the best physical activities you can do after surgery. In the first weeks after surgery, you only may be able to take short walks. As you feel comfortable, slowly increase the distance you walk.

Travel

Traveling with an ileostomy is very doable with some planning. If you’re flying, pack extra supplies in your carry-on bag, such as pouches, wafers and cleaning gear. You might need them when you’re on the go, and checked luggage can get lost.

Stay hydrated, watch what you eat to avoid gas or loose stool, and know where bathrooms are, especially on planes and long drives, so you can empty your pouch comfortably.

After ileostomy surgery, expect a few weeks of recovery at home. You may feel weak at first, but eventually your strength returns.

If your ileostomy was temporary, your surgery may be reversed once tests show that everything is healed, often in a few months. Your healthcare team can monitor your recovery during follow-up visits, then decide on the next steps.