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- Lizzie's Journey (1)
- What is Kidney Reflux? (11)
- Conditions Related to VUR (2)
- Constipation (1)
- Vesicostomy (1)
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Constipation and Reflux, What’s the Connection?
We were well into Lizzie’s journey before discovered there was a connection between constipation, voiding dysfunction and vesicoureteral reflux. It was first mentioned by the urologist that we saw for a second opinion. I was surprised when one of the first questions he asked was if she had any problems with constipation? Too be honest, it left me scratching my head for a minute. Does she have problems with constipation? I didn’t really know She was constipated at times, but no more than any other kid I guess, why did it matter?
After discussing some of the issues related to constipation and reflux, I began to realize that the answer to that question was pretty important. Even mild, sporadic constipation could have negative effects on Lizzie’s urinary system. I went home and started doing some research. I needed to understand why it caused problems and what I should be doing to prevent it. I was surprised at the amount of information out there. How had I never seen any of this, and why had no one mentioned it before? What I discovered is that parents of children with kidney reflux need to be especially diligent when it comes to constipation. Not only is constipation uncomfortable for the child, but it can lead to recurrent urinary tract infection, and may actually delay the resolution of reflux among other complications.
Constipation is defined as a very hard stool, pain that is associated with passing stool, or failure for a child to pass three stools in a seven day period. So what is it about constipation that makes it so dangerous for children with reflux? When a child is constipated, the stool that is impacted in the rectum compresses the bladder, which can reduce the capacity of the bladder and give the child an earlier sensation to void. This can in turn prevent relaxation during voiding which can cause urine to remain in the bladder after voiding, which basically means that the bladder does not empty completely. The danger is that the longer urine sits in the bladder, the greater chance bacteria has to colonize in the urine, which can lead to urinary tract infection.
Another theory is that once a child has had a painful experience passing stool, they are more likely to withhold stool in order to avoid another painful experience. This starts a vicious cycle of further constipation, and other complications. When a child withholds stool, they will usually withhold urine as well. Again, this leads to pressure on the bladder, and urine being left in the bladder. Voiding dysfunction is cyclic and can be hard to treat once habits have set in.
I began reading about how voiding dysfunction and constipation are closely linked, and when seen together, they are referred to as Dysfunctional Elimination Syndrome (DES). This is one of the articles that I found very interesting. It discusses the impact of constipation, dysfunctional elimination syndrome (DES) and Vesicoureteral Reflux specifically. It talks about a study that showed for patients that did NOT have DES, only 18% experienced breakthrough UTI’s and eventually needed surgery. Kids with breakthrough UTI also had a much higher rate of DES, 77%. Many of the children that were able to control their DES, also helped in resolution of reflux. Even though this was a small study, I found these statistics pretty significant. I immediately saw the importance of treating constipation and voiding dysfunction. The article went on to talk about how the resolution rates of reflux are delayed in children with DES. Resolution rates are lower and slower, and may take an average of 1.6 years longer for reflux to resolve. That’s a long time when you think of the chances of recurrent infection, as well as all of the testing and antibiotics required to manage VUR.
Now that we understood the importance of eliminating constipation, our next step was trying to figure out what steps were needed to manage it and prevent it. We quickly realized that this was sometimes much easier said than done.
The first thing we did is increase Lizzie’s fiber intake by adding more fruits, whole grains and vegetables to her diet. We also decreased some of the more binding foods, like bananas and cheese. We increased her fluid intake which is a big key to treating and preventing constipation. For a lot of children, changing diet may be enough to keep the bowels moving well. For others, a supplement may need to be given in order to keep the stool soft. Our doctor recommended Miralax, which is given daily.
For severe constipation, or impaction, a child may need multiple high doses of Miralax or stronger methods in order to clean out any impaction before starting a daily routine. You should discuss dosages with your doctor, and may also want to discuss doing an x-ray to diagnose impaction.
Lizzie still sometimes struggles with occassional constipation, but by changing her diet, increasing her fluid intake, and using Miralax daily, we have eliminated a lot of her constipation issues. I believe that in our daughter’s case, this has also helped relieve some of her bladder spasms which can also be caused by constipation. When I first started reading about all of this, I didn’t even realize that my daughter was having any constipation issues. Now I feel like we are taking one more step toward helping her body heal, and giving her a greater chance of resolution.
What is a Vesicostomy?
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.