How to Prepare for an Ileostomy

Ileostomy is surgery that makes an opening in the belly, or abdominal wall, for stool (poop) to leave the body. The end of the small intestine (the ileum) is brought through the abdominal wall, which is called a stoma. An appliance (called a bag or a pouch) is worn over the stoma to collect stool.

An ileostomy might be needed when there are problems with the large intestine (colon) or the anus. In some cases, an ileostomy is permanent, and in others, it is temporary.

This article will provide an overview of why an ileostomy might be used, how it is done, what recovery may look like, and the potential complications.

Who Might Need an Ileostomy?

Ileostomy may be done to treat several types of diseases or conditions, including:

• Colorectal cancer: If colon cancer affects certain parts of the intestines, an ileostomy may be a recommended treatment. The ileostomy may be temporary to allow the digestive tract to heal, or it may be permanent.
• Congenital (present at birth) disorders: A baby may have a bowel obstruction, a twisted intestine, or Hirschsprung disease. Necrotizing enterocolitis, a condition that causes the tissue of the intestine to die, is another reason for the procedure. This problem may be diagnosed in babies that are premature or born at a low birth weight.
• Crohn’s disease: This form of inflammatory bowel disease (IBD) may affect any section of the digestive tract. Sometimes, an ileostomy is used when parts of the intestines or the anal area are inflamed, scarred, or ulcerated.
• Familial adenomatous polyposis (FAP) or familial polyposis coli (FPC): This disorder causes polyps to grow in the large intestine. FAP is passed down through families, and the polyps may begin growing even when patients are young. Polyps can become numerous or turn cancerous, which may need to be treated with an ileostomy.
• Ulcerative colitis: This form of IBD affects mainly the large intestine. It’s thought that 30% of people with it will have surgery to remove the large intestine (colectomy). After a colectomy, people usually have an ileostomy or an ileoanal pouch, also called a J-pouch or an ileal pouch-anal anastomosis (IPAA).
• Other conditions: An ileostomy might be used for treating other forms of cancer (such as ovarian) or other health conditions (such as multiple sclerosis) that affect the colon or the spinal cord.

Types of Ileostomy

An ileostomy can be permanent,or it might be reversed after the condition for which it was needed has healed. In still another circumstance, the ileostomy is used as a step between other surgeries.

An ileostomy is not a colostomy. With a colostomy, part of the large intestine is used to make the stoma.

Permanent Ileostomy

In a permanent ileostomy, the end of the small intestine is brought through the abdomen to create a stoma. This might also be called an end ileostomy or a Brooke ileostomy.

After food is eaten, it travels down the esophagus, into the stomach, through the small intestine, and out of the body through the stoma. It is collected in a bag (sometimes also called a pouch) worn over the stoma. The stool tends to be looser than it was before the surgery. The stoma bag is emptied several times a day.

The ileostomy is permanent when there is no plan or ability to reverse it. The colon, rectum, and/or anus may have been removed or there may be a plan to remove them in the future. Or, there is no possibility of those areas healing.

Temporary Ileostomy

A temporary ileostomy is reversible. That means the stoma will be removed, and the person will eliminate waste the way they had presurgery.

A temporary ostomy may also be called a diverting ostomy. The stoma is not formed from the end of the small intestine. But rather, thinking of the small intestine like a tube, it is cut almost in half and bent back on itself.

There are two openings, one that allows stool to leave the body. The other opening allows for the drainage of any mucus created by the part of the digestive system not used for stool.

J-Pouch

A J-pouch is sometimes also called a pelvic pouch. This is not an ileostomy. Instead, the last part of the small intestine is folded back on itself to create a “rectum” for holding stool. It is attached to the anus to allow stool to leave the body through the bottom.

J-pouch surgery is usually done in stages, requiring two or three surgeries. A diverting ileostomy is created during one of the stages to allow for the J-pouch to heal. After a period of weeks or months, the ileostomy is reversed.

K-Pouch

A Kock pouch is sometimes called a K-pouch or a continent ostomy. This surgery was commonly used in the 1970s but was largely replaced by J-pouch surgery in the 1980s. With a K-pouch, there’s no need to wear an appliance on the abdomen to collect stool.

During the K-pouch procedure, an opening is created in the abdomen, which is called a nipple valve. This valve is at the end of the small intestine. A catheter (short tube) is inserted into the valve to open it and allow waste to leave the body. The pouch is emptied several times a day.

How to Prepare for an Ileostomy

Ileostomy will mean staying in the hospital for a few days or more, depending on many factors. It is a major surgery. Recovery time at home (away from work or school) may be about six weeks.

The surgical team and other healthcare providers will help you prepare for the surgery. You may have several appointments before surgery to take care of any presurgical needs and paperwork.

People having planned ileostomy (as opposed to emergency surgery) should meet with an enterostomal therapy nurse (ET nurse). This is a registered nurse who has specialized training in caring for people who live with a stoma.

The ET nurse will help in choosing a spot to place the stoma. This matters because, for instance, putting the stoma where a pants waistband normally hits can make clothing choices difficult. In some cases, there may not be a lot of room for choice, but the ET nurse can help go over what might be best for you and communicating this to the surgeon.

The ET nurse and other healthcare providers will also help teach about and answer questions on caring for an ileostomy. This process will include recommendations about ostomy appliances and where to order them after surgery.

Some people may need to try out various types of supplies from different companies to find the best fit for their stoma and their lifestyle. 

What Happens During the Procedure?

You will be admitted to the hospital for ileostomy . The surgery will last several hours.

In some cases, the surgery may be done laparoscopically. Several small incisions are made, and tools are inserted through those incisions to complete the surgery. This may mean a shorter recovery time than an open surgery.

In an open surgery, a longer incision will be made in the abdomen. This might be done in cases in which laparoscopic surgery can’t be used. The surgical team should discuss which type of surgery will be used and why.

The parts of the digestive system affected by damage, scar tissue, or disease will be removed or repaired. This may mean removing part or all of the large intestine, rectum, or anus.

After the surgery is over, you may awaken in a recovery area. The stoma on the abdomen will have an appliance over it. There may also be surgical drains and/or a nasogastric (NG) tube in place. Other medical equipment that will aid recovery, such as a pain medicine pump or pneumatic compression cuffs on the legs, may be used.

Healthcare providers will give help and advice on changing the ostomy appliance. It is a learning process. It will take some time to settle on a routine.

Ileostomy Recovery

Recovery from an ileostomy will continue after coming home from the hospital. Pain medication (prescription and/or over-the-counter drugs) will be continued at home as directed by the surgical team. Some people may have a healthcare provider visit at home to help with bag changes and other recovery needs.

Follow-ups with the surgeon and possibly the ET nurse will occur regularly after being released from the hospital. Taking a family member or trusted friend to appointments may help in getting questions answered.

Activity levels and eating plans should be gradually expanded over days or weeks. This should be done under the supervision of the healthcare team. You will want to understand when you can resume the following activities:

• Drive
• Eat a regular diet
• Go back to work or school
• Have sex
• Resume regular day-to-day activities and chores
• Start exercising or lifting weights

If the ileostomy is temporary, you will discuss the timing for reversal with the healthcare team.

Ileostomy Risks and Complications

Having surgery will come with some risks. The surgical team will review these risks during the pre-op appointments and answer any questions. Some general risks of most surgeries include anesthetic complications, bleeding, blood clots, delayed healing, difficulty breathing, infection, injury, or poor results.

Certain complications are specific to ileostomy procedures. Some of the potential problems that can occur after getting a stoma include:

• Peristomal dermatitis: The area around the stoma is called the peristomal skin. The ileostomy output, which can be watery and contain irritating substances, may cause the skin to break down.
• Ischemia/necrosis: It is not common, but the tissue can start to die when the blood flow to the stoma is cut off for some reason. The stoma may become dark and swollen. Depending on the situation’s seriousness, emergency surgery may be needed to reconstruct the stoma. 
• Retraction: A stoma could potentially go back under the skin and sit flush with the abdominal wall. This can make fitting an ostomy pouch difficult. Products called convex appliances may help. However, some people may need to find another solution, which could mean revision surgery.
• Small bowel obstruction: Surgery on the bowels has a risk of causing an obstruction (blockage). Depending on the severity of the blockage, home remedies may clear it, but it could also be treated in the hospital with decompression. Uncommonly, more surgery might be needed. 
• High-output stoma: Some people find that their stoma has a lot of output (the term for stool from an ostomy). This can lead to fatigue and dehydration. Sometimes, antidiarrheal drugs may be used to slow it down. People with a high-output stoma will also want to talk about replacing fluids with their healthcare team, either by drinking or with an intravenous (IV) line.
• Stomal prolapse: A prolapse is when the stoma extends outward too far. It can be painful. Sometimes, the stoma can be pushed back in (reduced) by hand by a healthcare provider or by applying a sugar solution to it.
• Parastomal hernia: A hernia can form near the stoma. A hernia is when the intestines protrude into a weak spot in the abdominal wall. It can be painful and make it difficult to attach the pouching system to the abdomen.

Long-Term Outlook

Having an ileostomy is going to be an adjustment. Taking care of the stoma will become part of a routine. Emotionally, some people may need more help in learning how their body now functions.

Ask about mental health support from your healthcare providers. You may want professional support and/or support from others in the ostomy community. Patient advocacy groups offer support groups and peer support. Ostomy suppliers also offer support through helpful written or video guides and in problem-solving with pouching issues.

With many different reasons for receiving an ileostomy, the potential risks and outcomes will differ for everyone. Talk with your healthcare team about what is expected in the long term.

However, people who live with a stoma lead full lives. The ileostomy was placed to treat a condition, and it may provide an opportunity to feel better and to get back to hobbies, travel, work, school, and other activities.

An ileostomy should not smell, and most other people will not know you have one unless you choose to tell them. 

People with an ostomy date, have sex, have children, go swimming, travel, run marathons, and do many other physical things. Finding support in the ostomy community can help in learning how to incorporate stoma care into a full life.

Summary

Ileostomy is a surgical procedure in which an opening is made in the abdominal wall for stool to leave the body through a stoma. An appliance is worn over the stoma to collect stool. It may be permanent or temporary.

Ileostomy may be necessary with several health conditions affecting the colon or anus, including colorectal cancer and inflammatory bowel disease. It is a major surgery requiring a hospital stay and weeks of recovery at home.

Different pouching systems and solutions for issues such as high-output stomas or peristomal hernias are available. Working with the surgical team and an ET nurse will help ensure the stoma is placed in the best possible location and in caring for peristomal skin.

When adjusting to a new stoma, it’s important to ask questions and get support from your healthcare team and the ostomy community.