Living with an Ileal Conduit
A type of surgery called a radical cystectomy may be needed for patients with bladder cancer tumors that are large, or that are located in more than one area of the bladder.1,2 During a radical cystectomy, the surgeon typically removes the patient’s entire bladder, part of the ureters (the thin tubes that connect the bladder to the kidneys), and the lymph nodes that surround the bladder. In male patients, the surgeon usually removes the prostate and seminal vesicles in addition to the bladder, parts of the ureters, and lymph nodes. In female patients, the surgeon may also remove the uterus, ovaries, fallopian tubes, cervix, and sometimes part of the vagina.
After the surgery, the surgeon typically uses reconstructive surgery to create another way for the patient’s body to store and pass urine from the body. There are several different options for this kind of reconstructive surgery, one of which is called an ileal conduit or an incontinent diversion.
What is an ileal conduit?
An ileal conduit is a passageway that allows urine to pass from the kidneys through the ureters and out of the body.1,2 The surgeon creates the ileal conduit out of a short piece of the patient’s intestine.
How does it work?
One end of the ileal conduit is connected to the ureters, which are tube-like organs that deliver urine out of the kidneys. The other end of the ileal conduit is connected to the skin on the front of the patient’s abdomen through a small opening called a stoma or urostomy. A small bag (also called a urostomy pouch) is placed over the stoma to collect urine that passes out of the body in continuously in small amounts. The patient empties the bag regularly as needed.
Some patients choose the option of an ileal conduit because the surgery is relatively simple compared to other options for reconstructive surgery. Patients also do not require a catheter to allow urine to pass out of the body. A catheter is a thin, flexible tube that is used to drain urine after other types of reconstructive surgery.
Emptying and maintaining a urostomy bag and seal
It is important for patients to empty the urostomy bag regularly and frequently to prevent bacteria from growing in the urine.4 This can also reduce the chance of creating a leak in the pouch seal. Patients are generally advised to empty the pouch when it is between one-third and one-half full. During the night, some patients prefer to attach a catheter from the drain valve on the bag to a larger bedside bag or drainage bottle to collect urine, rather than having to get up at night to empty the bag.
The seal that connects the pouch to a patient’s skin also needs to be changed on a regular basis, to make sure that it does not loosen or develop a leak. Your healthcare providers will talk with you about how often yours should be changed. The length of time between changes is different for every patient, and depends upon factors such as the condition of your skin, the weather, your weight, and your level of physical activity.
What is an ostomy belt?
Some patients find it helpful to use an ostomy belt to make them feel more comfortable and secure.4 The belt connects to the ostomy bag and wraps around the patient’s waist to help support the bag. It is important not to wrap the belt too tightly around your waist—be sure that you can put two fingers between the belt and your skin.
Adjusting to life with an urostomy bag
It takes time for patients to adjust to life with an ileal conduit or urostomy.1-3 Patients need to get used to changing the external bag on the abdomen that collects urine. They may worry that that the bag may leak or give off an odor.
Patients experience a change in body image and might worry about how the ileal conduit will affect:
- Their relationships with other people
- Their ability to work
- Their ability to take part in everyday activities, hobbies, or exercising
- Their ability to have sex
However, many patients find that after a time of adjustment, they can still do almost everything they could before they had their ileal conduit. Unless a patient’s job involves heavy physical work, most people find that it does not affect their ability to work. Most people living with a urostomy bag can also still exercise and swim, for example. Your healthcare providers will talk with you about ways to do this safely and confidently.
Self consciousness and impact on relationships
It is natural for patients to feel self-conscious when they first receive their ileal conduit, but the urostomy bag is designed to be well hidden by normal clothing. If you are not happy with the way that your urostomy bag fits, talk with your healthcare providers about trying out another type of bag with a different design that makes you more comfortable.
In terms of personal relationships, many patients feel more comfortable and confident if they talk with their close friends and families about what they are going through and about concerns that they have. Other patients find it helpful to connect with other people living with a urostomy, through support groups online or in person.
Many patients are able to have a comfortable and enjoyable sex life after they have a urostomy. It is important to make sure that the bag fits properly and to avoid sexual positions that rub against or put pressure on the pouch. Some people prefer to use a sash or snugly fitting shirt to help keep the pouch out of the way during sex.