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Living with a Colostomy: Tips for Maintenance and Daily Living

Some people with colorectal cancer (or other problems) may need to have a type of surgery called a colostomy, which changes the way wastes leave the body. Living with a colostomy can be a major change, but knowing what to expect and how to deal with it can help you adjust to it.

Facts first: basic terms

What is the colon?

The colon is the part of the large intestine that goes from the small intestine to the rectum. Food enters the colon from the small intestine. The remaining nutrients and water are absorbed by the colon as the food passes through it. Then the waste is stored as stool in the rectum until it can be passed out of the body.

The colon has three distinct portions. The ascending colon goes up the right side of your abdomen. It’s the part of the colon where the food enters from the small intestine. The transverse colon runs across the upper part of your abdomen. The descending colon runs down the left side of your abdomen and ends at the sigmoid colon, which connects to your rectum. As waste moves through the large intestine, water is absorbed.

What is an ostomy?

This is a type of surgery required when a person has lost the normal function of the bladder or bowel. It could be due to birth defects, disease, injury, or other disorders. Such operations include colostomy, ileostomy, and urostomy. The surgery allows for normal bodily wastes to leave through a new surgical opening, called a stoma, on the abdominal wall. An ostomy may be either temporary or permanent. People with ostomies must wear special appliances (pouches) over the stoma to collect the waste. A colostomy may be placed at any point along the colon.

Depending on where the ostomy is located, a person with a colostomy may see a difference in the type of stool:

  • If the surgical opening is created toward the lower end of the colon, more liquid is absorbed and the stools will be more solid.

  • When the ostomy is very low along the descending colon, near the rectum, stools are very well-formed. They are very similar to the kind of stool someone with an intact colon would have.

  • With a colostomy that is on the ascending or transverse portion of the colon, less water is absorbed. The stools then appear much looser and pass through the stoma more quickly and easily. Depending on where the opening is, a stool thickener may be necessary.

Treatment and management associated with a colostomy

Diagnosis

Finding out you have cancer is undoubtedly difficult news to hear and accept. Finding out that you will also require an ostomy can be devastating as well. For many, the notion of living with a bag on their stomach is a lot to bear, but it may be the best option when the location and size of the tumor prevents simply cutting out the tumor and reattaching the parts of the colon.

Finding out about the ostomy

After being educated about an ostomy, many learn that it is not as bad as they thought. It is common for the ostomy and the bag to go undetected--no one will know that you have one unless you tell them. Most importantly, having an ostomy can dramatically increase your survival, especially if the cancer is found early and treatment is provided.

Sharing the news

It can be hard to tell your friends, coworkers and loved ones that you are going to have surgery for colorectal cancer and will have to wear an ostomy bag. However, this is often approached on a need-to-know basis. For instance, there may be those who need an explanation for why you may not be able to lift heavy items anymore, or that it may be necessary to have frequent bathroom breaks for toileting needs and to manage the ostomy bag (letting air out to release trapped gas).

Surgery

In some cases, surgery is performed within a few days of the diagnosis. In preparation for the surgery, the bowels will need to be cleaned out. An enterostomal therapy (ET) nurse will speak with you and your family to provide information and training about the ostomy. The ET nurse will be a valuable resource to answer questions and address any concerns about ostomy care.

The surgical course may take you from requiring pain management postoperatively, staying in bed for several days, sitting up and advancing to walking short distances, and taking a shower.

Seeing the stoma for the first time

Your stoma’s healing progress will be checked by the ET nurse. It may take a few days before you are ready to look at the stoma. But, once you do, the ET nurse will be there to answer any questions.

Learning to care for the stoma

When you go home, a home health care nurse may be initially needed to provide instructions on stoma care and to provide wound care to ensure proper healing. The instructions usually include cleaning, changing the appliance, and learning what supplies to purchase and where to purchase them. Other issues, such as showering while wearing the appliance, preventing infection, and the importance of thoroughly cleaning the skin to remove all residues, are also addressed.

Daily life

Most colostomy appliances are a two-piece pouch system consisting of a flange, the portion that attaches directly to the skin, and the pouch, the portion that attaches to the flange and serves as the collecting reservoir. There are several brands to choose from on the market. Trying more than one may be necessary to find the one that works best for you.

Tips for good adherence

Preparation of the skin for good adherence of the flange is crucial to long wear time. Your skin must be clean and dried thoroughly before placing the flange. Some people have found that using a hair dryer on the lowest heat setting, or just air, dries their skin adequately. High-humidity climates and high temperatures may decrease the amount of time you can expect to wear your flange before needing to change it. A very active lifestyle and perspiration may also decrease your wear time.

Right after your surgery, you may experience problems with getting a good seal between the pouch and the flange, causing the pouch to come loose. But, in most cases after the wound around the stoma heals, it becomes easier to get a good seal.

Tips about living with the pouch

Consider always carrying an emergency kit with extra supplies such as pouches, an extra precut flange, a roll of tape, mirror, diaper wipes, and Q-tips. Wearing loose fitting tops and bottoms can help conceal your pouch in cases where you may feel self-conscious about having it hanging from your abdomen. Exercise caution when allowing your pets or young children to jump into your lap where the pouch is located. Also, be cautious when putting on your seat belt and allowing the lap belt to stretch across the area where the stoma is located.

Learning about food and digestion

Diet can be somewhat of a concern. A person with an ostomy should be especially aware of foods that cause flatulence. Of course, passing excess gas is a normal part of the digestive process, and most people typically pass gas more than 10 times a day to rid the colon of unwanted gases and pressure. The gas (a mixture of hydrogen, methane, and carbon dioxide) results from the chemical breakdown of undigested sugars in the lower intestine. Some complex carbohydrates cannot be completely broken down by normal digestive processes, and gas is the result. Altering your diet to limit these products may help. Offending foods, which vary from person to person, can include:

  • Asparagus

  • Bananas

  • Beans

  • Broccoli

  • Cabbage

  • Carbonated beverages

  • Carrots

  • Cauliflower

  • Dairy products (cheeses included)

  • Onions

Excessive amounts of fruit or fruit juice, bran, or whole-grain foods can also trigger gas. If you drink milk, try a lactose-reduced type.

Traveling tips

Pack extra ostomy supplies and, if you are flying, never pack all your supplies in the checked baggage. Limit and be aware of what you ingest before you travel.

Tips about odor

Liquid and solid products are available to help control odor. Some are placed into the pouch, while others can be taken internally. It may help to empty your pouch often as well. As for embarrassing moments, they say that anything that doesn’t kill you makes you stronger. There may be times when all is quiet and your stoma decides to let out some gas.

Effect on stool

Depending on the type of surgery you have, passing of stools may occur at any time. Most often this is advantageous, seldom a detriment. Drinking plenty of water is a necessity to keep water in the stools for as long as possible while it passes through the colon. An occasional dose of a laxative may also be warranted to keep the waste softer, but check with your health care provider first before taking them. Increasing vegetables, fruits, and juices may also help. Blockage (constipation) can be a problem for someone with a colostomy. Therefore, you have to keep track of bowel movements, including their consistency and frequency.

Spreading the word

Consider becoming a member of a local chapter of the United Ostomy Associations (UOAA) of America. The UOAA is dedicated to providing education, information, support, and advocacy for people who have had or will have intestinal or urinary diversions.

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