If you have bladder cancer, or another type of cancer in your pelvic area, your doctor has likely talked with you about a cystectomy. This is a type of surgery to remove your bladder. The bladder’s job is to gather urine from your kidneys and ureters and control the passage of urine from your body.

Without a bladder, you’ll need another way to pass urine. A urostomy is the creation of a small hole in your abdomen that provides another way for urine to leave your body. The most common type of urostomy is called an ileal conduit.

A surgeon will perform the procedures to remove your bladder and create an ileal conduit at the same time. Here is more information about the surgery, what to expect, and some FAQs about life with an ileal conduit.

After your cystectomy, you need an alternate way for urine to leave your body. A urostomy is the creation of a hole in your abdomen to let urine out.

An ileal conduit is one type of urostomy. It uses a piece of your small intestine to create a new passage for urine.

The opening on the outside of your abdomen is called a stoma. You will wear a urostomy bag attached to your skin over the stoma to collect urine.

A surgeon will perform the ileal conduit procedure at the same time as a cystectomy. Along with the bladder, they may also remove other nearby organs. This is to take out all sites where cancer has spread or is highly likely to spread. Your surgeon will explain exactly what the plan is.

To create the ileal conduit, the surgeon removes a small piece from your ileum. The ileum is the lower part of your small intestine that connects to your colon. The length of the ileum used for the conduit is around 6 to 8 inches (15 to 20 centimeters). Once they remove this piece, they’ll reconnect the two ends of the ileum where the ileal conduit segment was removed.

The surgeon will attach your ureters to the ileal conduit. The open end of the ileal conduit will connect to a small hole cut into your abdomen, the outside of which is called the stoma. The other end of the ileum is closed up.

Urine will now come from the kidneys, through the ureters, and pass through the ileal conduit. From there, it exits the body through the stoma into a urostomy bag. The urostomy bag or pouch is attached to the skin that surrounds the stoma.

Note that the ileal conduit doesn’t store urine. Any urine you produce will move directly through to the conduit to your urostomy bag. You won’t have control over when to pass urine.

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Illustrated by Jason Hoffman

When you first come out of surgery, you will be in the post-anesthesia recovery area. Medical staff will monitor your body temperature, pain, and breathing. You may still need extra oxygen delivered through a tube into your nose.

You will have tubes coming out of your abdomen to help urine and other fluids drain out properly.

Your new stoma will be swollen at first. You will have a tube coming out of your stoma to ensure urine can get out into your urostomy bag. This drainage tube will stay in for 1 or 2 weeks, depending on how you are healing.

You will have several stitches in your pelvic area, both internal and external.

Your intake of food after surgery will be restricted at first. Because your bowel was part of the surgery, it will need time to heal. Nutrition for the first few days will be through intravenous (IV) fluids.

You will also be given pain medications in the hospital through an IV line. You will learn how to use medications to keep your pain under control while in the hospital and when you are back at home.

You will likely stay in the hospital for at least 3 or 4 days. This gives extra time to monitor your progress after surgery. Over the next few days, medical staff will encourage you to start moving around with support. You’ll start on a liquid diet and progress to a regular diet as tolerated.

In the hospital, you will learn more about how to take care of your ileal conduit. You will likely meet with an ostomy specialist several times. This person can answer all of your questions and teach you how to use a pouching system and care for your stoma.

Ideally, you would have met with an ostomy therapist before surgery. They can help identify the best location for the stoma, taking into account factors such as your body type. They’ll mark your abdomen so that the surgeon knows the best location for the stoma.

As with any surgery or procedure, there may be complications. Here are some complications that can occur after ileal conduit surgery.

  • Anastomotic leak: An anastomosis is where two parts are stitched together during surgery. Sometimes, the contents of the intestines can leak from these sites.
  • Obstruction: Your intestine may become partially or totally blocked. This can happen at the anastomosis or from scar tissue that develops later.
  • Ileus: This is when intestinal muscles are slow to return to regular function. One small study showed that 27% (36 of 136 patients) had ileus after a cystectomy. The majority of these patients had ileal conduit surgery.
  • Problems with the stoma: The stoma may bleed, narrow, or pull back into the body.
  • Urinary tract infection (UTI): A small study showed that 8% of patients had a UTI in the first 3 months after ileal conduit surgery.
  • Low B12 level: The part of the ileum used to create the ileal conduit is the main site of B12 absorption. Without it, you’re more likely to have low B12 levels. Experts recommend having your B12 levels checked every 6 to 12 months and to take supplements as needed.
When to contact a doctor

Contact your doctor right away if you have any of the following:

  • pain that is not well-managed
  • a fever of 100.4°F or higher
  • your incision site is red, warm, or leaking pus
  • feeling short of breath
  • vomiting
  • no bowel movement for 3 days or not passing any gas
  • your drainage tubes are no longer in place
  • there is very little urine coming out
  • you have blood in your urine

At first, it’s typical for the stoma to be swollen. For the first 1 to 2 weeks, you will have a tube through the conduit while it heals and the swelling goes down.

You will wear a urostomy bag at all times to catch the urine coming out. Without a bladder, you will no longer be able to control your urine. It’s typical for mucus to also come out. The ileum continues to create mucus, just like the rest of your intestines.

There are different types of pouches available. An ostomy nurse in the hospital can answer questions and help you find the one that works best for you.

There are two parts to a urostomy pouch. The wafer is the part that sticks to the skin around your stoma. The pouch collects the urine.

Some pouches have the wafer attached. Other systems have separate wafers and bags. It’s best to change the pouch every 3 to 4 days. If you notice any leaking, change the system right away.

It’s best to empty your urostomy bag once it is a third to half full. This reduces your risk of a UTI.

There are special bands you can buy to tuck the urostomy pouch into. The pouch can also be tucked into your underwear or pants to keep it close to your body.

It’s important to check the skin around your stoma. Exposure to urine or an allergy to the wafer can cause skin irritation. If this is happening, talk with a healthcare professional for advice.

An ileal conduit is not the only surgery that creates an alternate way to pass urine. Any surgery to replace the bladder is called a urinary diversion surgery. The ileal conduit is the most common type of urinary diversion surgery, and experts consider it the gold standard.

An ileal conduit is a type of incontinent urinary diversion. That means you can’t control when the urine comes out. Two other common procedures, the Indiana Pouch and the neobladder, are examples of continent diversion.

Indiana Pouch

Indiana Pouch surgery creates a bladder from a part of the large intestine. It can hold urine, just like a bladder. A stoma on the outside of your belly is connected to the pouch inside your abdomen.

You won’t ever get the sensation that you have to urinate. You will need to insert a catheter into the stoma to empty your Indiana Pouch at regular times throughout the day. It does not require an external urostomy bag.

Neobladder

A neobladder is designed to be as close to having a bladder as possible. A surgeon creates a new bladder from part of your small intestine. They connect the new bladder to the ureters on one end and the urethra on the other, just as a bladder would be.

You do get the urge to urinate with a neobladder. Instead of using the bladder muscles, you use your abdominal muscles to push the urine out. You can use a catheter if it’s difficult to completely empty the neobladder.

A neobladder does have a higher rate of UTIs within the first 3 months after surgery.

There are many reasons for choosing one type over another. It’s an important discussion to have with your doctor.

It’s typical to have lots of questions about your new ileal conduit. Here are some common questions about life after cystectomy and ileal conduit surgery. Remember that your doctor or urostomy specialist will be able to answer any additional questions you have.

How long does an ileal conduit last?

An ileal conduit is designed to be permanent. Long-term follow-up is important for anyone with an ileal conduit. The longer someone has an ileal conduit, the more likely there will be complications.

Be sure to watch for changes in the stoma, the skin around the stoma, and the amount of urinary drainage. Let your doctor know if you notice any changes. Advances to improve surgical techniques are helping to reduce long-term complications.

Does an ileal conduit affect life expectancy?

There is no evidence that having an ileal conduit reduces life expectancy. Removing the bladder is an important part of treating bladder cancer.

The 5-year survival rate for bladder cancer is 96% if cancer has not spread beyond the bladder. If bladder cancer has spread locally in the body, the five-year survival rate is 70%.

Can you still get a UTI with an ileal conduit?

Yes. It’s still possible to get a UTI with an ileal conduit. A small study showed that 8% of people with an ileal conduit develop a UTI in the first 3 months.

There are steps you can take to reduce the risk of a UTI. Drink lots of water, cut down on caffeine and alcohol, and empty your urostomy bag before it gets half full to help prevent UTIs.

Signs of a UTI

It’s important to contact your doctor if you notice any signs of a UTI. They include:

  • cloudy urine
  • urine with a stronger smell than usual
  • back pain
  • loss of appetite, nausea, or vomiting
  • fever above 100.4°F

Does a urostomy bag have an odor?

A well-fitting bag is designed to prevent any smells from coming out. There may be a slight smell from the bag itself or the adhesives. It’s typical to worry about any smells you detect, but the reality is that other people likely won’t even notice.

Empty your bag frequently and change the pouching system every 3 to 4 days to help reduce any buildup of odor.

How do you sleep with a urostomy bag?

Urine continually flows into your urostomy bag, so it’s possible it could overflow at night. For sleeping, you can get an extra pouch that attaches to the base of your urostomy bag via extra tubing. It directs urine into a separate pouch away from your stoma. You can set this additional pouch in a container beside the bed.

You can try different sleeping positions until you find one that feels best for you. You can use pillows to prop yourself up and avoid putting pressure on your urostomy bag. If you’ve found a pouching system that is the right fit and attaches well, it will stay in place overnight.

Will an ileal conduit affect my ability to have sex?

A cystectomy often involves removing other organs and parts in your pelvis, as cancer spreads easily in this area. The exact surgery will depend on your type of cancer and where it has spread. A surgeon may also need to remove the prostate, seminal vesicles, ovaries, uterus, or part of the vagina.

This may cause many changes, including:

  • difficulty getting an erection
  • dry ejaculation (no seminal fluid)
  • vaginal dryness
  • narrowing or shortening of the vagina

Your surgeon will explain exactly what will happen during your surgery. They will also tell you what changes you may expect in your sexual function.

Many people also feel a shift in their body image when they start wearing a urostomy bag. It’s important to communicate with your partner about the physical and emotional changes you are dealing with.

If you require bladder removal, you’ll also need a new way to pass urine from your body. An ileal conduit is the most common urinary diversion procedure. It uses a piece of your ileum from your small intestine.

This creates a new pathway for urine to pass through, called a urostomy. The stoma is the opening on the outside of your abdomen. You will wear a bag attached to the skin around your stoma to collect urine.

There’s a lot to learn as you get used to your new ileal conduit. You will have support from your doctor and an ostomy specialist. They can answer any of your questions and help you learn to take care of your new urostomy.