Kidney Reflux Information and Articles

We were completely blindsided when the urologist told us that Lizzie would need a vesicostomy. Throughout my research I had seen the rare cases when urinary diversion was required, but you never expect that your child will fall into that category. Looking back, maybe I should have expected it .  I should have realized we were going down this slippery slope, but instead I was just standing there with no idea what I should say. What do you even ask the doctors?  He just told me what it was, sort of.  Didn’t he?  I realized that I needed to know more about what a cutaneous vesicostomy was, and why they thought it might help my daughter. This is what I learned.

A cutaneous vesicostomy is an opening in the lower abdomen which allows urine to continuously drain from the bladder. A small incision is made into the abdomen and then into the bladder. The surgeon will take the edge of the bladder, turn it inside out, and then sew it to the skin of the abdomen. It is a small incision, about an inch or so below the belly button, and the opening is called a stoma.

A vesicostomy is a procedure that is usually done in infants and young children (usually under 5 yrs), but can sometimes be an option for older children and teens. This type of stoma does not require any type of equipment like tubes or bags. The urine will drain directly from the stoma into the child’s diaper. A vesicostomy is a temporary urinary diversion, which means that is easily reversed in the future, which makes it a good option for children.

So why would a child need a vesicostomy? Some children are born with or develop problems in their urinary tract. This may include children with posterior urethral valves, vesicoureteral reflux, or neurogenic bladder. A vesicostomy keeps the bladder constantly emptying which helps prevent urine from sitting in the bladder. This can help reduce urinary tract infections, and kidney damage. If there is no urine sitting in the bladder, it may be more difficult for bacteria to colonize. In the case of VUR, urine that is eliminated quickly will also be less likely to move into the kidneys. It also allows time for growth, development and healing.

For Lizzie, the vesicostomy has stopped her UTIs completely. We are really pleased at the success of her surgery. Lizzie went from having a kidney infection every single month, to being infection free for 12 months.  When I originally wrote this article, it had been 12 months, it has now been almost 3 years of being infection free! It has meant the difference between a life filled with infections and hospital stays, and a life that’s pretty darn close to normal.

Studies have shown that a vesicostomy is very successful in maintaining renal function and preventing kidney damage in children. Because it is easily reversed, it can be taken down when the child is older, healthier, or in a better position to receive other treatments. It has proven very effective in preventing UTI and preserving the bladder.

The surgery is done under general anesthesia, which means your child will be completely asleep during the procedure. The surgery will generally last about an hour, at which time your child will be taken to recovery where you can be with them. Your hospital stay is usually 1-2 days. A catheter may be placed in the new stoma, or the urethra (or sometimes in both, which was the case for Lizzie). The catheter can usually be removed in the first day, but may need to stay in place 2-3 days or more.

Care for a vesicostomy is pretty basic. The stoma may need to be dilated at some time, but you will want to discuss it with your doctor. We have never had to dilate Lizzie’s, and our uro says that as long as it is still draining well, it is fine. He told us that the stoma was made large to anticipate growth, so we should expect some shrinkage. The first picture was taken a few days after Lizzie’s surgery and the second is what it looks like now.

For the first week or so, we were told to keep an antibiotic ointment on the opening to prevent infection, and your child will be prescribed an oral antibiotic and possibly pain medication. Lizzie was also given Ditropan to help control bladder spasms, which are generally mild, after surgery. Your child’s diaper should be changed frequently to prevent skin abrasions from the constant wetness. You may want to use Vaseline as a barrier to protect the skin if needed. We have also found that because of Lizzie’s daily antibiotics, yeast infections have been a struggle with the vesicostomy, and at times a barrier cream has helped with the rash.

After the surgery, you should call your doctor immediately if any of the following occur:

If no urine has passed through the stoma in 2-3 hours
Foul smelling or discolored urine
Tearing or significant bleeding of the stoma
Fever over 101.4 degrees F
Excessive vomiting

You may also want to contact your doctor if you notice that the skin around the stoma is breaking down. Diapering a child with a vesicostomy can sometimes be tricky, and we have found it to be the most difficult part of the vesicostomy so far. Sometimes keeping Lizzie dry can be quite challenging. What we have found to be most effective is using a large size pull-up and then taking a small diaper (size 1 by day, size 2 at night) and turning it inside out and then tucking it in the front of the pull-up.  That way we can change the small diaper every hour or so, and not have to change the large pull-up quite so often.  It’s not ideal, but it has worked pretty well for us.