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The Challenges of Having an Ostomy on Your Cancer Journey

By Gwen Spector, RN, BSN, COCN, CCP October 5, 2017Pearls of Wisdom Blog

Ostomies are surgically created openings in the skin. Sometimes people with abdominal, bowel, or bladder cancers will have a temporary or permanent ostomy. Living with an ostomy can be challenging at times and even more so when you are undergoing cancer treatments. Most problems are manageable especially when you are educated and prepared for what can happen.

It’s important for you to know your baseline, meaning what is the normal for you. Unfortunately, not all healthcare professionals are familiar with ostomy problems and how to manage them so it makes it even more important for you to know what’s going on with your body.

The Challenges You May Face On Your Journey

There are different types of problems that can affect your stoma, the peristomal skin, the fit of the pouching system, and the bowel. Complications can stem from treatments such as chemotherapy, radiation, and surgery as well as malnutrition, poor wound healing, and weight changes.

Skin Problems occur most frequently. If your ostomy puts out a large volume of fluid, your pouch/barrier can break down quicker causing leakage and trapped moisture. Dermatitis, an irritation of the skin, can happen when your skin has frequent or long term contact with body fluids like stool or urine. Dermatitis caused by radiation can present as skin blistering, oozing, peeling, and/or dry and scaly skin.

Stoma complications are often caused by weak abdominal core muscles, malnutrition, and obesity. A parastomal hernia is the bulging of the bowel through a weakened area in the abdominal wall muscles. An increase in pressure in the abdomen from lifting heavy objects is an additional risk factor to those previously listed. Sores known as mucositis can develop on your stoma as well as the lining of other parts of your body if you are receiving chemo or radiation.

Problems with your pouch or barrier not fitting or adhering well can occur for a number of reasons including problems with the stoma such as parastomal hernia, stenosis (narrowing), and retraction (sinking below skin level). Weight changes and high urine or stool output can also lead to problems with your pouch staying on.

Changes in bowel habits can indicate or lead to more serious problems when you have an ostomy. Putting out too much or too little stool isn’t normal. Diet, hydration status, medications and cancer treatments can be the source of these changes.

  • Diarrhea can be caused by certain cancers, such as colon cancer and carcinoids, as well as chemotherapy, radiation, and intestinal infections. The increase in output, especially if you have an ileostomy, can result in dehydration. This type of ostomy normally puts out a lot of fluid, sometimes up to a liter a day and may be even greater right after surgery. Ileostomies are more likely to lose valuable electrolytes quicker than someone with a colostomy.
  • Constipation can occur in patients with a colostomy, especially if the stool is normally thicker or more formed. People with ileostomies don’t get constipation. A decrease in stool output means there is a bowel blockage, also known as an obstruction. Bowel blockages occur in the small and large bowel and prevent stool from passing. This can be a result of scar tissue from surgery as well as dehydration, obstructive foods and side effects from cancer treatments. It can also be the presenting sign for colorectal cancer. A bowel blockage can occur in anyone who has had abdominal surgery but can be more complicated if you have a bowel ostomy.

Managing Ostomy Problems

Management of these problems often requires a change in your pouch type or size and frequency of your pouch change. Accessory products may need to be added to your routine. This is when an ostomy specialist will be invaluable. Ask your surgeon to see an ostomy nurse to help you manage these problems. Monitor the fit of your pouch and how well the barrier sticks to the skin all around the stoma. Notify your surgeon or ostomy nurse if you feel your pouching system is not effective.

Keep the skin around your stoma clean and dry. Use water and a washcloth to clean the peristomal skin and be gentle when cleaning or removing products. Avoid using soaps, lotions and baby wipes which can leave a residue and cause the barrier not to stick to the skin. Also check with your oncologist because you will be limited on what you use if you are receiving chemo or radiation treatments. Contact your doctor or ostomy nurse if you are experiencing problematic skin changes.

Dehydration and bowel blockage can sometimes be avoided by making sure you drink enough fluids and don’t eat obstructive foods. A good rule of thumb is to drink a glass of fluids with every pouch change. Drinking electrolyte beverages, high in potassium and sodium, can help prevent dehydration but be careful with high sugar drinks which can have a laxative effect. Sometimes you just can’t get sufficiently hydrated on your own and you have to go to the hospital. Signs of dehydration include dry mouth and skin, decreased urine, fatigue, weakness, nausea and abdominal cramping. If your ileostomy isn’t active for 4-6 hours, longer for colostomies, and you have abdominal cramps, nausea and/or vomiting then you could have a bowel blockage. Contact your doctor for advice; you may need to go to the emergency room for evaluation and treatment. Never use a laxative if you have an ileostomy.

For more recommendations see the resource links listed below.


American Cancer Society: Ostomies

Cancer Connect: Living with a Colostomy

Colon Cancer Alliance

Ileostomy Blockage Card

New Ostomy Patient Guide

Ostomy Basics

Ostomy Information

Ostomy Issues and Complications

Ostomy Nutrition

Disclaimer: The information in this blog was compiled from the United Ostomy Association and American Cancer Society. This does not replace the instructions from your surgeon.

Gwen Spector, RN, BSN, COCN, CCP

Author Gwen Spector, RN, BSN, COCN, CCP

Complex GI Cancer Nurse Navigator with Sarah Cannon Institute at Medical City Healthcare Gwen Spector, RN, BSN, COCN, CCP is a nurse navigator specializing in complex GI health at Sarah Cannon at Medical City Plano in Plano, TX. She is also a certified chronic care professional health coach and enjoys educating patients and families.

More posts by Gwen Spector, RN, BSN, COCN, CCP

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