In my years of practicing medicine, one of the things that patients have always seemed most anxious about is ostomies. An ostomy is what you call the place where a tube from inside the abdomen (part of the intestine or urinary tract) is brought up to the skin of the abdominal wall to empty body waste into a bag. Below, I’ll explain some of the reasons that people get an ostomy.

The prospect of having an ostomy and caring for it can be scary and daunting. But in my experience, almost every one of my patients with an ostomy has learned to manage it well. Most patients have told me that having an ostomy wasn’t as bad as they expected and they were able to adjust to it. In this post, I’ll answer the questions I am asked most about ostomies and how to care for them.

1. Why do patients need ostomies?

Ostomies are done when part of the intestine is damaged or missing, or cannot work properly.  Some examples of conditions that might require an ostomy are traumatic injuries to the colon, intestinal cancers, and inflammatory bowel disease. When surgeons do an ostomy, their goal is to leave the patient with as much working intestine as possible. The higher up the intestine the ostomy is, the higher the output of body waste, since the colon is responsible for drawing water out of the intestinal contents.

2. What are the different kinds of ostomies?

Types of ostomies have different names that tell you what part of the body is emptying. For example, a colostomy is an ostomy made from colon (the large intestine), an ileostomy is an ostomy made from ileum (the last part of the small intestine), and a urostomy drains urine from the urinary tract. Ostomies from the intestines (ileostomies and colostomies) are the most common, and I’ll focus on them in this post, but the same principles apply to other kinds of ostomies as well.

3. Are ostomies permanent?

Ostomies can be temporary or permanent. Temporary ostomies are placed to allow an injury or reconstructive operation on the intestine to heal. Permanent ostomies are rare and generally done for very specific conditions. Most ostomies are reversed after a few months.

4. How do you learn to manage an ostomy?

The part of the ostomy that comes out of the skin is called the stoma. Patients need to learn how to care for their stoma and how to “pouch” it by putting on the ostomy appliance (the “bag”). Although this can seem scary or gross at first, it’s basically the same as changing a diaper, and patients generally get used to the process fast. Basically, the bag will have to be emptied a few times a day, and the whole appliance will have to be changed every few days.

• Before your operation: Learning about ostomy care often starts before the operation, with the clinic staff teaching patients about what to expect and showing them the basic equipment that they’ll need. There are also training programs and practice kits available — the American College of Surgeons provides them for free, and has several kinds available for different types of ostomies.
• In the hospital: After the operation, the surgical team will give patients hands-on training in how to care for their own ostomy. Every stoma is different, so even if a patient has practiced with a training kit, it’s vital that they take advantage of the chance to practice caring for their own ostomy under the supervision of a trained professional. Patients generally stay in the hospital for several days after the ostomy operation, so there will be plenty of opportunity to practice.

  I recommend that patients watch their nurse do the first bag change, but after that first change, they should ask the nurse to watch them do it. It’s critical that patients and their caregivers be comfortable caring for their ostomy before they go home, and that means that they have to start caring for it themselves as soon as possible.

• At home: Before leaving the hospital, patients should be sure that they have all the supplies needed to care for their ostomies. Besides the bag itself, there are accessories that may be necessary, such as pastes and powders to help the bag stick, belts to support the ostomy, etc. There are also many different kinds of bags for different shapes and sizes of stoma, so it’s very important that you leave the hospital with the right device, and that you know where to get more supplies. Your surgical care team will help you with all of that.

5. What do I do if I am having problems with my ostomy?

Ostomies can be finicky and sometimes require troubleshooting. The most common problems are leaking of the bag and irritation of the skin around the stoma. Usually your surgical team will be able to help you figure out a solution, either over the phone or in a visit to the clinic. Most surgery teams include a nurse who has been specially trained in ostomy care. Ask your surgeon about the best way to get in touch with that person for any problems that come up.

Resources:

• American College of Surgeons ostomy training kits
• Children’s Hospital Boston information for parents, children, and teens with ostomies  (disclaimer: I wrote and produced these videos)

This story originally appeared in the  Health Dialog Care Compass Blog.