There are two types of vesicostomies: leaking vesicostomies and continent vesicostomies (such as a Mitrofanoff). I will be discussing the basic leaking type of vesicostomy in this article.
What is a Vesicostomy?
Generally, a vesicostomy is done when a child has a condition in which she cannot pass urine on her own or retains urine, leading to infections. My daughter has a neurogenic bladder and retains urine. We were using a catheter to drain the urine, but it was a very traumatic experience for her each day, and so we opted for a leaking vesicostomy. This is where the stoma continuously leaks urine, and in the best case scenario, the bladder stays empty.
Because my daughter requires extra fluids before surgery and extra monitoring after, we did the vesicostomy as an inpatient procedure. Generally it is done outpatient. The surgery itself is quite straightforward. If your child has a G tube, it is the same idea. A hole is made in the skin right next to the bladder. Once the hole goes through into the bladder, the bladder wall is tacked to the abdominal skin. It creates what is called a stoma or tract. We call it her extra belly button because it looks like a belly button once it heals.
Immediately following surgery, your child will have a Foley catheter placed and it will stay in the stoma to drain urine for about two to three weeks until the site heals. It can be painful as the Foley can cause bladder spasms and irritation. Make sure to ask your doctor about pain medication before going home.
Once the Foley catheter comes out, then you have to figure out the best system to contain the urine. Regular diapers and pull ups (for us) have not come up high enough to cover the site. Since it is leaking continuously, I was doing a lot of clean up! Our eventual system ended up being to lay a newborn diaper across the site and then put a regular diaper on top. We tried urostomy bags, but instead of lasting 24-48 hours, they were leaking and falling off after about six hours. My daughter’s site is very close to her belly button and so the creases there made it easier to leak. Other children do very well with urostomy bags, so it is worth a try!
Generally the Foley is not left in as a drainage option because of the risk of infection. It is helpful to speak to a pediatric ostomy nurse or to a pediatric urology nurse. Sometimes they have tricks to pass along that other parents have tried.
The Vesicostomy Solution
We do still cath my daughter. The plan had been to just let the vesicostomy leak, but as I said above, that is the best case scenario. She still retains urine due to her neurogenic bladder. However, the cathing is far less traumatic as we can cath her through the vesicostomy.
If you are considering a vesicostomy for your child, please always remember to ask a lot of questions and to find a doctor that you trust. This is true for any procedure. Look into different options and weigh the benefits and risks. A vesicostomy is not an “easy” solution, but it certainly has made things a lot better on my daughter, and has enhanced her quality of life, which is always our number one priority.