Living with an Ostomy

If you have had surgery for IBD, you may be left with an ostomy and accompanying ostomy bag. An ostomy is an opening that is surgically created where a portion of the small or large bowel may protrude through the stomach in order to pass waste. This opening is called a stoma. The waste is collected into an appliance adhered to the stomach known as an ostomy bag.1

When you receive an ostomy and ostomy bag, your doctor or healthcare team will provide you with instructions on how to care for the ostomy, care for your skin, prevent infection, and change the pouch and flange (the part of the appliance that surrounds the stoma and attaches to your skin).1 They may also connect you with a Wound Ostomy Continence Nurse (WOCN) who has been trained in ostomy care and should be available to answer questions and help patients adjust after surgery. Aside from learning regular maintenance of your ostomy, you may also need to learn how to navigate daily life, relationships, diet, and more. Below are some common misconceptions and tips for learning to live your life with an ostomy.

Your diet does not have to change completely

It’s important to follow your doctor’s advice on your diet, especially immediately following surgery. They may recommend that you eat specific foods and follow a particular schedule for eating. The concern with certain foods stems from the possibility of an intestinal blockage where food gets stuck in the intestines. This could happen because of scar tissue from surgery or simply because of the shifting around of your digestive tract. Foods that are not easily digested, such as corn, beans, mushrooms, and raw vegetables should be tried with care, in small quantities, and along with an increased water intake. The primary job of the large intestine is to absorb water back into the body, so those who have had their large intestine removed may have difficulty staying hydrated and, therefore, need to consume more water than those with a large intestine.

When your doctor gives you the all-clear to resume a regular diet, begin adding new foods in slowly. Learning what foods impact your ostomy in different ways will be a learning curve, however, it does not mean that you can’t have options. You may consider avoiding certain foods that cause gas, including asparagus, broccoli, beans, beer, onions, and carbonated beverages, or foods that cause your waste to have a stronger odor including eggs, fish, and garlic. However, this doesn’t mean that these foods have to be eliminated forever.2 Taking the time to learn how certain foods impact you, making a plan for when you do or don’t want to eat these foods, and sticking to your plan may help eliminate embarrassing situations when you want them the least, and allow you to eat your favorite foods at times when you know you can handle the after-effects.

You can still carry out your normal, daily activities

Individuals who have an ostomy can go back to their normal daily activities, including exercising, going to work, participating in hobbies, and even having sex. It is possible to keep your ostomy discrete and to carry out most daily activities without anyone knowing. This may be difficult in situations where you can’t hide the bag under clothing, such as when being intimate, but in most aspects of daily life, no one has to know you’re wearing an ostomy bag. There are even ostomy-hiding swimsuits on the market.1-2

To prevent any leakage during your daily life, it may be a good idea to empty the bag when it’s not completely full and to carry around a set of extra supplies just in case.1 You may also need to plan ahead when going on long trips, but traveling with an ostomy is possible and manageable. Getting back to your normal activities will help boost your mood and self-esteem, as well as help you continue to foster relationships with your loved ones and friends. Navigating intimate relationships may prove to be challenging at times, but enlisting the help of your support system and seeking advice from support groups or communities like ours may help provide you with some ideas and tips.

There is strength in numbers

Choosing whom to tell about your ostomy and how much you want to tell them is a personal decision that only you can make. Some people are completely open about their ostomies with most everyone they know, while others prefer to keep its existence more quiet. Many do find that having at least one other individual in whom they can confide to be helpful and provide additional support. Individuals whom you choose to tell don’t even have to be your closest friends, co-workers, or anyone you would see in your daily life. Depending on the resources you use to navigate life with IBD, these extra supporters may be members of a support group you belong to or an online community. They may even be others you know who also have an ostomy and can provide you with additional advice and encouragement.

Life with an ostomy does not mean that everything you used to do, eat, wear, or enjoy needs to change. With the right planning, support sources, and mindset, life with an ostomy can be enjoyable and fulfilling.