IBD, Medical Tests

Living With an Ostomy

At first, living with an ostomy can be overwhelming and scary for some people. However, most people adjust and lead active and productive lives. A wound, ostomy, and continence (WOC) nurse or an enterostomal therapist will provide education, support, and medical advice on topics that include the following:  

  • What to expect after ostomy surgery 
  • Caring for an ostomy 
  • Resuming normal activities after ostomy surgery 
  • Maintaining personal relationships after ostomy surgery 
  • Coping with practical, social, and emotional issues 

What to Expect after Ostomy Surgery 

Once the person is home from the hospital, the first week or two are considered an extension of the hospital stay. Most people will tire quite easily when they first come home. Getting enough rest is important. Gradually, stamina and strength will improve. Most people can return to work about 6 to 8 weeks after surgery. People may have certain GI issues—such as gas, diarrhea, and constipation—as the bowel heals, depending on the type of bowel diversion. 

Ileostomy and colostomy 

During the early weeks and months after surgery, people with an ileostomy or a colostomy may have excessive gas. This extra gas will decrease once the bowel has had time to heal and the person resumes a regular diet.  

Ileoanal reservoir 

People with an ileoanal reservoir initially have about 6 to 10 bowel movements a day. The newly formed ileoanal reservoir takes several months to stretch and adjust to its new function. After the adjustment period, bowel movements decrease to as few as four to six a day. Those with an ileoanal reservoir may have mild fecal incontinence and may have to get up during periods of sleep to pass stool. 

Continent ileostomy 

Similar to an ileostomy or a colostomy, people with a continent ileostomy may also produce excessive gas during the early weeks and months after surgery.  

Caring for an Ostomy 

During the recovery in the hospital and at home, a person will learn to care for the ostomy. The type of care required depends on the type of ostomy surgery. A WOC nurse or an enterostomal therapist will teach a person about special care after ostomy surgery.  

Ileostomy and colostomy 

People with an ileostomy or a colostomy will learn how to attach, drain, and change their ostomy pouch and care for the stoma and the surrounding skin. Ostomy pouches, or pouching systems, may be one piece or two pieces. They include a barrier, also called a wafer or flange, and a disposable plastic pouch. In a two-piece system, the pouch can be detached or replaced without removing the barrier. For both systems, the barrier attaches to the skin around the stoma and protects it from stool. The length of time the barrier stays sealed to the skin depends on many things, such as:  

  • How well the barrier fits 
  • The condition of the skin around the stoma 
  • The person’s level of physical activity 
  • The shape of the body around the stoma 

Most people can leave the barrier on for 3 to 7 days. However, a person should change the barrier as soon as stool starts to go underneath it and onto the skin.  

Most ostomy pouches empty through an opening in the bottom. Emptying the pouch several times a day reduces the chance of leakage and bulges underneath the person’s clothing. A person should empty the pouch when it is about one-third full. They should rinse the pouch in a two-piece system before reattaching it to the skin barrier.  

How often a person needs to change their pouching system depends on the type of system. Many pouching systems may be worn for 3 to 7 days. Some pouching systems are made to be changed every day. When changing a pouch system, the person should: 

  • Wipe away any mucus on the stoma 
  • Clean the skin around the stoma with warm water and a washcloth 
  • Rinse the skin thoroughly 
  • Dry the skin completely 

People may use mild soap to clean the skin. However, the soap should not have oils, perfumes, or deodorants, which may cause skin problems or keep the skin barrier from sticking. A WOC nurse or an enterostomal therapist can give advice if a person has problems attaching the skin barrier or keeping it attached.  

When changing the pouching system, people should inspect the stoma and contact a health care provider about any dramatic changes in stoma size, shape, or color. People should look for blood and signs of skin irritation around the stoma.  

Sensitivities or allergies to ostomy products such as adhesives, skin barriers, pastes, tape, or pouch materials can cause skin irritation. People with pouching systems can test different products to see if their skin reacts to them. People should use only ostomy products recommended by their health care provider.  

Ileoanal reservoir 

People with an ileoanal reservoir will learn how to care for irritated skin around the anus resulting from frequent stools or fecal incontinence. A WOC nurse or an enterostomal therapist may recommend pelvic floor exercises to help strengthen the muscles around the anus.  

Continent ileostomy 

People with a continent ileostomy will learn how to insert a catheter through the stoma to drain the internal pouch. They can drain the pouch by standing in front of the toilet or by sitting on the toilet and then emptying the catheter. During the first few weeks after a continent ileostomy, the person needs to drain the internal pouch about every 2 hours.  

After a few weeks, the person can go 4 to 6 hours between pouch draining’s. The person should wash his or her hands with soap and water after using a catheter. The person should clean the skin around the stoma with warm water and a washcloth and let the skin dry completely.  

Resuming Normal Activities after Ostomy Surgery 

After ostomy surgery, people should be able to resume their normal activities after healing completes and their strength returns. However, they may need to restrict activities, including driving and heavy lifting, during the first 2 to 3 weeks after surgery. Strenuous activities, such as heavy lifting, increase the chance of a stoma hernia.  

A person who has recovered from the ostomy surgery should be able to do most of the activities he or she enjoyed before the ostomy surgery, even swimming and other water sports. The only exceptions may be contact sports such as football or karate. People whose jobs include strenuous physical activities should talk with their health care provider and employer about making adjustments to job responsibilities.  

People should avoid extreme physical exercise and sports activities for the first 3 months. Walking, biking, and swimming are fine and should be encouraged as long as they are not overly strenuous.  

People with an ostomy should talk with their health care provider or Care Team about when they can resume normal activities.  

Maintaining Personal Relationships after Ostomy Surgery 

People with an ostomy should be able to maintain personal relationships just as before their surgery. Some people may worry that friends and relatives will have negative reactions to their ostomy and stoma. Only a spouse, sexual partner, or primary caretaker needs to know the details of the ostomy surgery. You can choose how much you share with others about your health condition, including the ostomy.  

People can still maintain a satisfying sexual relationship after ostomy surgery and may resume sexual activity as soon as the health care provider says it is safe to do so. You should talk with their health care provider about any concerns you have with maintaining sexual relations. The health care provider can also give information about ways to protect the stoma during sexual activity. You may want to ask about specially designed apparel to enhance intimacy. Communicating with a sexual partner is essential.  

Coping with Practical, Social, and Emotional Issues 

Although ostomy surgery can bring great relief, many people have problems coping with the practical, social, and emotional issues related to having this type of surgery. Every person reacts differently. A person’s emotions may change frequently during recovery.  

People with an ostomy adjust faster and experience fewer problems when they have help from their family members, partners, and health care providers. Community and online resources for support and education are available to help people with an ostomy cope with practical, social, and emotional issues. A WOC nurse and an enterostomal therapist can provide a list of resources and support groups.  

Eating, Diet, and Nutrition 

For the first 6 to 8 weeks after ostomy surgery, the health care provider may recommend a low-fiber diet to give the bowel time to heal. The health care provider will tell a person when to add high-fiber foods to the diet. People should introduce fiber into the diet gradually, as high-fiber foods may cause blockage.  

Most people are eventually able to resume their regular diet and eat what they like. However, various foods may affect the GI tract differently. Just as before ostomy surgery, certain foods are more likely to cause gas, diarrhea, constipation, or incomplete digestion.  

Foods such as cucumbers, cabbage, broccoli, onions, fish, eggs, and beans may cause more gas and odor than others. People should consume carbonated drinks and chew gum with moderation, as they may also cause gas. Constipation is often the result of an unbalanced diet or eating and drinking too little. After ostomy surgery, people should: 

  • Avoid large amounts of liquids with meals 
  • Drink plenty of liquids between meals 
  • Eat regularly 
  • Avoid high-fiber foods on an empty stomach 
  • Introduce new foods gradually 
  • Chew foods thoroughly 

People should talk with their health care provider or dietitian about what diet is right for them. 

Source: National Institute of Diabetes and Digestive and Kidney Diseases