Urostomy Care & How to Care for an Indiana Pouch, Ileal Conduit, or Neobladder
This article will go over the every-day practices of urostomy care. It will explain what is urostomy, what is a stoma, and what are the different types of urinary diversions. You can expect to learn about stoma care, as well as the different things to expect from, and the different ways to care for an Indiana pouch, an ileal conduit, or a neobladder.
What is Urostomy?
A urostomy (urinary ostomy) is an opening on the belly created by a urinary diversion surgery that acts as the new exit point for urine. A urinary diversion surgery is needed when the bladder malfunctions due to disease or damage. The surgery redirects the flow of urine to bypass the bladder and exit through the urostomy.
Before the surgery, urine would flow from the kidneys through the ureters to the bladder; from there it would flow through the urethra and exit the body at the urethral opening.
After the surgery, urine flows from the ureters to the urostomy, passing through a pouch surgically made from the person’s intestines. The diseased bladder is removed or by-passed.
Urostomy is not to be confused with a colostomy or ileostomy, both of which diverts the fecal flow, not the urine flow. All of them are subcategories of ostomy, which refers to the opening on the belly where either stool or urine leaves the body.
What is a stoma?
All kinds of ostomy will have a stoma. While ostomy refers to the opening on the belly, stoma refers to the bit of intestine that is pulled through the ostomy and sewn onto the outside of the belly. You can see it as the pink fleshy tissue that surrounds your ostomy.
For colostomy, a part of the colon is made into the stoma, but for ileostomy and urostomy, a part of the ileum is made into the stoma.
Urinary Diversion Types:
There are three main ways to divert the flow of urine away from the bladder: creating a continent catheterizable pouch, an ileal conduit, or a neobladder. The biggest difference between them is whether or not they are continent, and whether or not they have a stoma.
The Indiana pouch: a type of Continent Catheterizable Urine Pouch
A continent catheterizable urine pouch refers to a pouch made out of part of the person’s intestines, which holds urine inside the body much like a bladder, but differing from a bladder, it cannot sense when it’s full to contract and push the urine out.
An intermittent catheter must be passed through the stoma and into the pouch to drain it several times a day.
A very common type of continent catheterizable pouch is called the Indiana pouch, which is made of roughly ⅓ of the person’s big intestines—the ascending colon and the cecum, and a small section of the small intestines—the ileum.
During an Indiana pouch surgery, the ascending colon and cecum are made into the pouch, while the ileum is pulled through the urostomy and sewn onto the outside of the belly, forming the stoma. The ureters, the two tubes that carry urine from the kidneys to the bladder are cut off from the bladder and re-sewn onto the Indiana pouch.
The Indiana pouch is continent, meaning urine will not leak out involuntarily. The ileocaecal valve holds the urine in. However, one cannot voluntarily pass urine by contracting the Indiana pouch, and thus needs intermittent catheters.
The ileal conduit
The ileal conduit is made up of a section of the ileum, which is a part of the small intestine.
During an ileal conduit surgery, a segment of the ileum is removed from the bowl and one end of it is closed off while the other end is pulled through the urostomy and made into a stoma. The two ureters are sewn onto the ileum, which forms a little pouch that diverts the urine out through the urostomy.
Unlike the Indiana pouch, the ileal conduit is not continent because of its small size. Urine is not collected and held in the pouch but continuously flow out of the stoma. An ileal conduit requires you to wear an external urostomy bag that adheres to the skin around the stoma and collects urine.
When the bladder is removed (cystectomy), a neobladder (new bladder) can be surgically created to take its place. The neobladder is also created from parts of the intestines, but what’s different about the neobladder is it does not require a stoma to drain. No urostomy is created during a neobladder construction surgery.
The neobladder takes the same place that your old bladder did. The ureters and urethra are sewn onto the neobladder, so the urine flows from the kidneys to the neobladder, then into the urethra and out of the body. There is no need for a stoma. With training, you can urinate like usual.
However, urinary retention and leakage are often complications of the neobladder, especially at first. Therefore it’s likely that your doctor would instruct you to use intermittent catheters for a while.
Urostomy Care and Stoma Care
Urostomy care is very important. Different types of urostomy requires different types of care. Caring for your urostomy first requires caring for your stoma.
The stoma is made from a part of your small intestine, ileum, which has no nerve-ending but is still very delicate. If it’s scrapped or cut you would see white or yellow lines on it. The stoma is vulnerable to irritations and infections, here are some tips to take good care of it (tips mentioning pouch are for ileal conduits):
- Right after the surgery, don’t do anything strenuous. Don’t lift anything more than 10 pounds for four weeks.
- Always wash your hands before touching the stoma or areas around the stoma.
- Washing around the stoma with water is enough, but you can use mild unscented soap if you want. If you wear a pouch, rinse well because soap can affect the adhesiveness of the skin barrier.
- Before you decide on a pouch, patch test the area around your stoma for different types of adhesive to see if you have any allergic reactions.
- Find the right-fitting pouch system for yourself, ask for help from the ostomy nurse if you have trouble doing so.
- Closely monitor your stoma’s color, size, discharge, and the skin around it. Know what is normal and what is not. You should’ve been thoroughly educated by your ostomy nurse (also see below to remind yourself).
A healthy stoma is shiny, moist, and looks pink or red. The shape of your stoma should be round to oval, and it may protrude a little or is flushed against the skin.
After surgery, it’s normal for a stoma to shrink over time, and it’s normal for a small amount of mucus and blood to come out of it.
Here are some signs of an unhealthy stoma. Visit your doctor if your stoma:
- Turns purple, gray, or black
- Becomes dry
- Changes shape
- Changes size significant—more than half an inch in a day
- Protrudes too much from the skin, you can see intestines coming out
- Shrinks into the belly
- Gives off a bad odor
- Feels painful
- Bleeds for 5-10 minutes, with blood coming from inside the opening
Contact your urostomy surgeon immediately if your stoma turns pale gray or turns dark purple/black. This is a sign that blood circulation to the stoma is cut off. If your surgeon is not available, go to the emergency room.
The skin around the urinary stoma can also become irritated or infected, the skin problems around the stoma are usually due to irritation from urine, ill-fitting pouch systems, or allergies. Contact your ostomy nurse for help If you peristomal skin:
- Is red, chapped, scaled, flaky itchy, wet, weepy (draining fluids), and/or bumpy
- Hurts, burns, swells and/or bleeds
- Turns pale, bluish-purple, or black
- Has white, gray, brown, or dark red bumps on it
- Has bumps that are filled with pus
- Bulges around the stoma
- Has sores around the stoma or where the skin contacts the pouch system
You should also alert your healthcare provider if you notice less urine output than usual.
Caring for an Indiana Pouch
For several weeks or even months after the surgery, you may experience problems with
- Leaking: this is normal as your pouch is still learning to hold urine
- Leaking at night: if your pouch is not leaking during the day but leaking at night, try to cut back on consumption of liquids right before sleep, or catheterize right before sleep.
- Frequent catheterization: you may find yourself catheterizing frequently in the first few weeks. This is normal as the pouch is still adjusting to hold more liquid.
- Difficult catheterization: the stoma and the channel leading up to your pouch can be irritated by frequent catheterization, leading to the swelling and obstruction of the catheter’s passage. This problem should resolve on its own after your body is more used to catheterization.
- Difficult catheterization (continued): sometimes the catheter cannot pass because your abdomen muscles are tense due to nervousness or a tense body position. Experiment with different positions and try to relax as much as possible.
- Blood in urine: a small amount of blood from time to time is normal and is likely due to irritation from the catheter. However, if the amount becomes concerning (dark urine), please notify your physician.
- Incomplete drainage: the urine is chronically incompletely drained, it can form crystals and eventually stones. The retained urine can also increase your chance of getting an infection.
- Thick mucus discharge: you may notice a lot of mucus coming out of the stoma, sometimes even blocking the catheter from draining. This is normal, but to avoid it, you can drink plenty of water and irrigate your pouch to prevent mucus built-up. It is generally recommended that you irrigate your pouch one a day. Check with your doctor for what’s right for you.
- Infections: infections can occur when urine is not drained frequently or completely. They can also occur when the catheter is contaminated by the user’s hands. Watch out for foul-smelling, cloudy, or dark urine as this is a common symptom.
- Notify your doctor or ostomy nurse if anything concerns you. Don’t be shy about talking to them. Although online sources can offer advice, only they know your particular situation well.
As an overview, here are the things you should be doing to take care of your Indiana pouch:
- Drink plenty of water to avoid infections and mucus built-up
- Never force a catheter in! If a catheter is not going in, take a few deep breaths, relax, and change position if necessary. Forcing a catheter can damage the pouch channel.
- Lubricate the catheter before insertion or use a pre-lubricated catheter to avoid irritating the pouch channel.
- Wash your hands before handling the stoma or a catheter. Use a no-touch catheter to decrease the risk of contamination.
- Irrigate the pouch according to the doctor’s instructions.
- Try to achieve complete drainage. To do this, first ensure that mucus will not block the catheter. Once you’ve inserted the catheter a few inches into the pouch, pull out inch by inch, and each time you pull out an inch, wait till all fluids have drained to pull out another inch. Rotate the catheter slightly as you pull out. Do not rotate if you are using a coudé catheter.
- Watch out for signs of infections: cloudy, dark, foul-smelling urine, lower back pain, fever, vomiting, and chills.
If you are struggling with catheter insertion and frequent infections, check out this catheter that is non-touch and pre-lubricated with anti-bacterial silicone oil. Pre-lubrication makes insertion hassle-free, and not touching the catheter tube can decrease the chance of catheter contamination.
Ileal Conduit Care
An ileal conduit requires a different way of caring than the Indiana pouch because urine is emptied into an ostomy pouch rather than drained by a catheter.
Most problems associated with ileal conduit come with an ill-fitting pouch system which can result in irritated stoma and skin.
Here are some tips to avoid skin and stoma irritations:
- Use a correct-fitting pouch system for your stoma:
This might be especially difficult at first when you are still learning, and the newly-made stoma is in the progress of shrinking down after the surgery. Some people’s stomas fluctuate in size long after their surgery. Notify your doctor or ostomy nurse when your stoma changes over half an inch in size over a single day, as that might indicate a problem. Here is a more detailed guide on how to measure your stoma. A pouch opening that is too large can cause urine to leak and irritate the skin, an opening that is too small can cut or injure the stoma causing it to swell.
- Change the pouching system once a week or more to avoid leaks and skin irritation. If there is itching and burning around your stoma, it is a sign for you to change the pouching system and clean your skin.
- Be gentle when removing the pouch system. Do not rip the skin carrier off but peel it away gently. Don’t remove the pouching system more than once a day unless there is an issue.
- Cleaning the stoma and skin with water is enough. If you wish to use soap, rinse well as soap might affect the adhesiveness of the skin barrier. Pat the skin dry before putting on the skin barrier and pouch.
- Look out for allergic reactions or sensitivities. Even if you’ve used the same products for years, sensitivities and allergies can develop spontaneously. If this happens, you can use a pouch of different material, or use a pouch cover.
A neobladder is made of your intestines and functions differently than a normal bladder. You would need a foley catheter during your stay in the hospital and for a while after you go home. Afterward, you will switch to urinating on your own, sometimes with the aid of intermittent catheters. You may experience urinary retention and urinary leakage during the time your neobladder is adjusting. Eventually, you can urinate like usual.
To care for your neobladder, drink plenty of fluids to avoid mucus built-up and UTIs and irrigate the catheter per doctor’s instructions.
Wear pads and absorbent clothing as your neobladder may leak.
Because a neobladder does not contract like a normal bladder, you need to push down on it to help squeeze the urine out and simultaneously relax your abdominal and sphincter muscle to allow urine to exit.
At first, you would have trouble emptying the neobladder completely, so your doctor may ask you to drain residual urine with a catheter and to keep track of the volume of residual urine. Your physician may instruct you to stop using a catheter when you have demonstrated a consistent low level of residual volume.
If you drain more than 150 cc’s of residual urine, you should contact your physician as this might be a problem.
If you use intermittent catheters, check out CompactCath!
CompactCath’s catheters are super-compact, touch-free, and pre-lubricated with anti-bacterial silicone oil.
CompactCath emerged out of Stanford d.school, created by a team of physicians, mechanical engineers, and MBAs. It was FDA-cleared in 2014, holds six patents, was covered by CNN Money, won two grants (BioDesign Spectrum grant, LPCH Pediatric Innovation grant) and two iF product design awards (2016, 2017).