Vesicostomy Information
We were really surprised when the urologist told us that Lizzie needed a vesicostomy. I had read that in rare cases, when there are complications to VUR, a child might need a urinary diversion, but I never expected Lizzie to fall in that category. I needed to know more about what cutaneous vesicostomy was, and how it could help my daughter.
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 into the bladder. The surgeon will take the edge of the bladder and 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 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 an obstruction in their urinary tract. This may include children with posterior urethral valves, vesicoureteral reflux, or neurogenic bladder. The vesicostomy will help prevent urinary tract infections, and kidney damage.
For Lizzie, the vesicostomy has reduced her UTIs, as well as the pressure that builds up in the bladder. We are really pleased at the success of the surgery. Lizzie went from having a kidney infection every single month, to not having one in the past 8 months. It means that she is finally healthy, which in turn means less hospital visits, less doctors, and less meds.
Studies have shown that a vesicostomy can help maintain renal function and prevent damage. Because it is easily reversed, it can be taken down when the child is older, 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 with 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.
Care for a vesicostomy is pretty basic. You may need to dilate the stoma to keep it from closing. This requires the insertion of a catheter into the stoma to stretch it out. This is often done 2 times a day. For the first week or so, you will keep an antibiotic ointment on the incision to prevent infection, and your child will be prescribed an oral antibiotic as well as pain medication. Your child’s diaper should be changed frequently to prevent skin abrasions from 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
Diapering a child with a vesicostomy can sometimes be tricky, and we have found it to be the most difficult part of the vesicostomy. For more tips on diapering, and keeping your child dry, please click here.
Deflux Injections – What it is and how it corrects VUR
Please visit our new site at www.kidneyreflux.info for updated information on this topic.
What is Endoscopic Treatment of Vesicoureteral Reflux, and how does it correct a child’s reflux?
Endoscopic treatment of VUR (commonly known as Deflux injection) is an outpatient surgery using a bulking agent to correct reflux. During the surgery, the doctor uses a cystoscope to look into the bladder. A cystoscope is a thin, lighted instrument that is used to view areas of the urethra and bladder that can not easily be seen on x-ray. The cystoscope is entered through the urethra and into the bladder. During this procedure, the surgeon will use very small instruments to inject a bulking agent (Deflux) into the lining of the bladder where the ureter enters into the bladder. By doing this, the surgeon creates a new valve that prevents the back flow of urine into the kidneys.
Deflux is a gel substance made from two types of sugar-based molecules (polysaccharides) called dextranomer and hyaluronic acid. These materials work well because they do not cause significant reactions to the body. Hyaluronic acid is actually produced naturally within the body. Because of this, the injected agent breaks down over time, leaving a permanent bulge of tissue which serves as the new valve. The urine can still pass from the ureter into the bladder, but because of the new valve, the urine cannot freely flow back into the ureters. It’s kind of like a door that only swings one way.
Deflux injection has shown the best results in children with grade II, III and in some cases of grade IV. The higher the grade of reflux, the less effective the injection will be. Most studies show the overall success rate of Deflux injection to be 80% or better after the first injection. Some children may require a second or third injection. With multiple injections, the success rate moves into the 90 th percentile.
Children may not be good candidates for Deflux if they have kidney failure, voiding dysfunction or other bladder or kidney abnormalities. Children with grade V are usually better candidates for ureteral reimplant. In some cases, like our little Lizzie, Deflux is done after a reimplantation has failed. Studies show high success rates, depending on the reason for the failure of the reimplantation. If the reflux is secondary to an underlying condition(which we are still investigating for Lizzie), surgery may not be effective until the underlying condition is corrected.
Deflux injection can be a good alternative to long term antibiotics and may be a good option for children with breakthrough infection. There are many advantages to having Deflux instead of open surgery. For one, it is much less invasive than reimplantation surgery. Endoscopic treatment with Deflux, does not require an incision, therefore recovery time and risk of complication are lessened. Deflux is done as an outpatient surgery, so your child can go home the same day, where reimplantation patients may have a 2-5 day hospital stay. Another plus is that having Deflux does not prevent the child from having surgery later if needed. Of course there is also a down side to Deflux. Deflux is less successful than the reimplantation (especially in the higher grades), and Deflux injections do not have a lot of long term studies available because it is a relatively new procedure. This procedure was approved by the FDA for use in the United States in 2001.
During the surgery, your child will undergo general anesthesia, so they will be completely asleep for the procedure. The doctor will perform the surgery as described above, and the time will depend on if the procedure is unilateral (one ureter) or bilateral (both ureters) but should generally take less than 30 minutes. When the surgery is complete, the child will go to recovery where you can be with them. As the child wakes up, they will monitor them for a short time, but your child should be able to go home that same day.
After going home, your child may have some bleeding in the urine which is normal for this procedure. General anesthesia and Deflux injection are generally low risk, but complications can occur. Complications can include blockage of the ureter (from too much injection), or infection from surgery.
If your child has any of the following symptoms after surgery, you should contact your doctor immediately:
- Temperature over 101.4 degrees F
- Excessive Vomiting
- Severe pain
Ureteral Reimplantation Surgery
We were surprised to find out that Lizzie needed a ureteral reimplantation surgery at the age of only 5 months. We had known from the beginning that surgery would be needed, but we were expecting it to be at the age of 5 years, not 5 months. So how do you decide when it is time for surgery, and what should you expect once you have scheduled it?
For us, the decision was easy. Lizzie had grade 5 reflux in a duplicated system, and had 4 kidney infections (one of which was a resistant bacteria) while on antibiotics, all before the age of 5 months. We needed to do something, and do it quickly. Most doctors will try and wait until the child is 18 months old if possible. There have been studies showing that the surgery has a higher success rate after the age of 12 months, but if there are multiple recurrent infections, aggressive measures may be needed. The general guidelines for surgery are the following:
- high grade reflux (grades 4 & 5)
- recurrent infection despite antibiotics
- your child is unable to take antibiotics (for whatever reason)
- the reflux has continued over a period of years and is not improving
If your child meets the criteria for surgery, how does the surgery correct the reflux? Children with Primary Reflux are born with a defect in the ureter(s) that allows the backflow of urine into the kidneys. Ureteral Reimplantation Surgery is a surgery performed to change the way that the ureter(s) enter the bladder. The surgeon will make an incision in the lower abdomen, and into the bladder, where they will basically sew the ureter(s) into the proper place. This corrects the valve that was allowing urine to reflux. This surgery is very successful with a 95-98% success rate.
So you have decided to do the surgery. Now what? What should you expect, and what do you need to know?
This surgery is done under general anesthesia, which means the child is completely out for the entire surgery. Many children will also have an epidural so that there is no pain for a few hours after they awaken. The surgery generally takes between 2-3 hours, but may take longer if there are duplicated ureters, or if tapering of the ureter is needed. A ureter may need to be tapered (made smaller where it enters the bladder) if it is a megaureter. This may help prevent further reflux. We expected a 2-3 hour surgery with possible tapering, and were surprised when it became 5 hours. Luckily, most hospitals are well equipped keep you updated, and we were warned mid-surgery that things would take a little longer. Apparently, while they were performing the surgery, they discovered that instead of 3 ureters, Lizzie actually had 4, which meant there was another ureter that needed to be reimplanted.
It’s hard to be prepared for what will happen after surgery. Most children do well with anesthesia, however some children may wake up very upset.Unfortunately you can’t know which direction your child will go until they wake up. Your child will have a catheter that may need to stay in place for 1-3 days. In our case, it was removed after 24 hours. Some children may require stents if any type of reconstruction has taken place, and some children may require catheterization for a longer period. Both of these are normal occurances after surgery.
You should discuss your child’s pain management with your doctor and nursing staff before the surgery. You should know what the drug will be, how much will be given and how often your child will/can receive it. On a more personal note here, we had wonderful nurses that made sure Lizzie was comfortable and getting the medicine that she needed, but I have spoken to other parents that have had a very difficult time. You may also want to discuss any other medications your child might need, such as medication for bladder spasms. It is common for children to experience bladder spasms after surgery. Lizzie had frequent bladder spasms and was given Ditropan to help control them. She also struggled with dehydration. Keeping your child hydrated is very important after the surgery. It not only helps recovery, but also helps keep the bladder flushed and for us, helped minimize the bladder spasms. There may also be blood in the urine for a few days up to many weeks. As long as it is not getting worse, it is normal in most children.
When your child gets out of surgery, you can expect them to be very tired and a little out of it for a while. He/she will have a small incision in the lower abdomen which is closed with steri-strips that will either dissolve or fall off over time (in Lizzie’s case, we eventually peeled them off). As another side note, you can no longer see Lizzie’s scar unless you know exactly where to look.Your child will remain on a course of antibiotics for 7-10 days, at which time they will remain on a prophylactic antibiotic until it is verified that the reflux has resolved. Children can still get a UTI after the surgery, however it should remain in the bladder, and not move into the kidneys. UTI is much less common after surgery, however some children are simply more prone to UTI than others. Children are usually released from the hospital 1-3 days after surgery. They will most often be prescribed a pain medication as well as a medicine for bladder spasms (such as Ditropan).
If you feel like your child is having difficulty after the surgery, do not hesitate to call your doctor immediately. If the following symptoms occur, you should call your doctor right away:
- If the child’s temperature goes above 101.4 degrees F
- Excessive bleeding from the abdomen where the incision was made
- Dehydration or inability to tolerated liquids
- Vomiting excessively
- If the child is unable to urinate
About 4-6 weeks after surgery, the child should have an ultrasound to verify that there is not obstruction. After 4-6 months, the child should have a VCUG to verify that the reflux has resolved. Children should have an ultrasound yearly to check the kidneys, and if scarring is present, blood pressure should also be checked yearly to monitor for hypertension.
Some studies have shown reimplantation to be up to 98% successful, but as with any surgery, there can be complications. General anesthesia is low risk in children but can cause complications. In rare occassions, obstruction and persistant reflux can occur after surgery. When obstruction occurs, it may be temporary, but the child may need to have the fluid drained from the kidney (this is often done with a nephrostomy). In some rare cases, a child may need surgery to remove the blockage, or to repeat the reimplantation. Deflux has also been found to be effective in some cases of persistent reflux. If the surgery has failed, further investigation is needed. This might include VCUG, Urodynamics (or Video-Urodynamics) and an MRI.
Nonneurogenic Neurogenic Bladder
Nonneurogenic Neurogenic Bladder (Hinman-Allen syndrome) is the most severe form of Dysfunctional Elimination Syndrome, and if left untreated can lead to renal failure in children. This syndrome usually effects children past the age of potty training, but on rare occasion has been seen in in infants.
Children with a nonneurogenic neurogenic bladder, have the symptoms found in a neurogenic bladder, only there are no neurological defects, or upper urinary tract anomalies causing the condition. In many cases it is caused by the child holding their urine and not releasing it when needed. This may be caused by a number of reasons and is believed to usually be psychological. It is believed that this syndrome is a learned behavior. This condition is sometimes seen in children who have been victims of abuse.
When a child holds their urine, the bladder becomes full, and expands. Over time, this can cause the bladder to enlarge and retain more urine. This can lead to a number of problems including increased bladder pressure and higher incidence of urinary tract infection. Many children with this syndrome develop Vesicoureteral Reflux (VUR) due to the high pressures in the bladder. If the syndrome can be managed, the VUR is more likely to resolve on its’ own. If it is left untreated, it can cause irreversible scarring and damage to the kidneys.
Treatment for this condition varies depending on age, the severity of the dysfunction, and any damage done to the kidneys. Some children may undergo drug therapy, behavioral modification, or Biofeedback. In most cases, it is treated in the same way as a neurogenic bladder, and may include intermittent catheterization.
In very rare cases, Hinman-Allen Syndrome has been found in infants. In these rare cases, babies have shown signs of a neurogenic bladder, but with no neurological abnormalities. In these cases, renal failure was likely if aggressive, early intervention was not taken. In some cases early intervention included a vesicostomy, which in many cases preserved renal function. It is not known how or why infants develop this condition, but proves that it is not always caused by a psychological need to hold urine.
On a more personal note, the nonneurogenic neurogenic bladder is something that I have been very interested in, and there is not a lot of info out there. Since no doctor has been able to tell us what Lizzie’s actual diagnosis is, I have done tons of research on rare or unusual conditions. Hinman-Allen syndrome would actually fit quite well with most of Lizzie’s symptoms including, constipation, enlarged bladder, recurrent uti, high grade reflux, failed reimplantion, and the success of the vesicostomy. There is however, one huge missing link. That link is the synergic sphincter activity that was noted on her EMG. One would expect to find dyssergenic sphincter activity in a neurogenic bladder (or nonneurogenic). This might close the case for us except that the actual results of her urodynamics study have been “lost”, making it impossible to verify that information, plus I can’t find any research that states that there MUST be dyssergenia. I’ve also learned that her medical records are often wrong, so I’ve put this condition in the unlikely pile, but I’m not ready to rule it out just yet. We will be talking to our uro more about it next month.
For more links on Hinman-Allen syndrome, check out our links page.
We have a DMSA scan scheduled!
Lizzie finally has her DMSA scan scheduled for next month. It’s been a long process….. really long, and we are excited to finally have it scheduled. The DMSA scan will give us a better look at her kidneys, the amount of scarring that is present, and how they are functioning.
We will go in that morning and she will have an IV put in which will distribute an agent through her body that we can see with the test. After 2 hours, she will be strapped to a table and the test itself should only take about a half hour. We will be doing the test without sedation.
When the test results come in (later that day), we will hopefully have some useful info about how Lizzie’s kidneys are working. We will know if there is any enlargement, how significant the scarring is, and how well each kidney is actually functioning.
The great thing about the kidneys, is that if one is not functioning well, the other will usually pick up the slack. In an ideal world, both kidneys will be functioning at 50%, which added together will make 100%. In a lot of kids with kidney damage, one kidney may only function at say 30%. However the other kidney, if working properly, should work harder at 70% to balance out the kidney that is not functioning at full capacity. Together they still equal 100%, which is the main goal.
I am very interested to see what the extent of scarring is to her kidneys. Based on her history, you would expect to see significant scarring due to the multiple infections. Her ultrasounds, and blood tests have come back good, so we are still hopeful that this is not the case. Once scars are present, they are there to stay. One of the dangers of scarring is hypertension, and since Lizzie’s blood pressure is much higher than we would like it to be, I’m anxious to see if scarring is to blame. This test will help us determine how concerned we need to be about hypertension later on.
Unless there is significant scarring, this test will not change her treatment, and we will continue with the vesicostomy for at least another year or two. We will also continue to monitor for hypertension for many years to come. If there is significant scarring, we may be inclined to keep the vesicostomy a little longer to help prevent any further scarring. Most studies show that the majority of scarring occurs before the age of 5, so if her scarring is considerable, we might wait until past that age to take down the vesicostomy. This will be especially important if the Deflux has not resolved her VUR.
We have the test done next month, on January 22nd. I will be sure and update our test results and what they will mean for Lizzie’s future.
