Bladder and Bowel Dysfunction and how they affect VUR
Dysfunctional Elimination Syndrome (DES). What does it mean, and how does it affect VUR?
We had never heard the term Dysfunctional Elimination Syndrome before Lizzie had surgery in September of 2007, but they say hindsight is 20/20. I believe that if we had known about the dysfunction of Lizzie’s bladder (and possibly her bowel) we might have made different choices along the way. We believe that DES is what caused the failure of Lizzie’s reimplantation.
DES is a term used to describe bowel and/or bladder disorders, including bladder instability, constipation and infrequent voiding. DES is often overlooked in children with VUR, but can play a major role in the rate of resolution as well as the effectiveness of surgery. One study shows that DES can actually cause recurrent UTI, as well as slow down resolution rates. For this study, all of the patients with failed reimplantations were found to have DES. This has certainly been the case with our little Lizzie.
It was not until after Lizzie’s reimplant that we discovered her grossly enlarged bladder. It is now believed that her bladder was retaining urine, which may have contributed to her constant infections. Because of the urine retention, her bladder pressures built up, actually causing her VUR. With all of that pressure, the urine needed to go somewhere, so it traveled back into the kidneys. The surgery corrected the anatomical part of the ureters, however it did not address the bladder dysfunction, so the VUR (which is now considered secondary) was still being caused, just by a different mean.
There are many types of bladder anomalies and dysfunction that can play a role in VUR. A neurogenic bladder, or non-neurogenic neurogenic bladder (Hinman-Allen syndrome) can also play a part in VUR. In a neurogenic bladder, the nerves are damaged, and can cause VUR (secondary). We believe that it is possible that Lizzie has this condition. After a urodynamics study and an MRI, we now know that it is not the nerves in her spine causing the problems (which is a wonderful blessing) but we believe there may be damage to the peripheral nerves leading to the bladder. A non-neurogenic neurogenic bladder is exactly that. It’s a bladder that presents as a neurogenic bladder, with no nerve damage. This generally happens when a child holds in their urine, and refuses to release the bladder, causing built up pressures, and you guessed it, VUR. I will write more on these two conditions later.
Constipation is another dysfunction that doesn’t get enough air time in my opinion. It’s the same general idea. Feces accumulate in the colon causing constipation. Because there is a mass in the colon, there is extra pressure put on the bladder. It is VERY important to manage constipation in children with VUR. It can actually reduce the time it takes for VUR to resolve. Since putting Lizzie on a high fiber diet, her constipation has gotten much better. If she goes more than 48 hours without a bowel movement we break out the miralax.
It is very important to discuss with your doctor, how your child’s bladder and bowel are functioning. Some of the tests are non-invasive, such as an ultrasound, or in older children, an input/output journal can be very useful. The ultrasound can show any obvious defects to the bladder, and also if there are compaction issues in the bowel. If there are some elimination issues present, I would suggest doing a urodynamics test before having any type of surgery. Studies have shown that if you can manage the dysfunction, it can lead to much better results. I can also say from experience, that DES can be a contributing factor to the failed treatment of VUR. Had we known about Lizzie’s bladder and possible bowel dysfunction, we might have opted for the vesicostomy at a much younger age, and put off the reimplantation until a later time.
For more info check out these links, and check out our VUR resources page.
Dysfunctional Elimination Syndrome
- This is a great article on how DES can slow resolution time and cause failed reimplantation http://www.medscape.com/medline/abstract/9719268?src=emed_ckb_ref_0
- Very good (very technical) article on Voiding disorders http://www.emedicine.com/ped/topic2414.htm
- An abstract discussing VUR and elimination disorders http://www.ncbi.nlm.nih.gov/pubmed/18491738?ordinalpos=10&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum
- A good article on bladder and bowel dysfunction in relation to VUR http://bcbsma.medscape.com/viewarticle/562914_6
Deflux Injection – Why it may be a good option
Not all children are good candidates for Deflux, but for those that are, Deflux can be a good alternative to ureteral reimplantation for the treatment of VUR. Deflux is a bulking agent that is injected around the ureter opening to prevent urine from backing up into the kidneys. The success rate after the first injection is about 85%. That number increases with multiple injections.
Studies have shown that having a Deflux injection lowers incidence of UTI and has an 85-90% resolution rate of VUR. If it is used as a first line treatment, Deflux is more effective than prophylactic antibiotics in reducing recurrent UTI. According to one study, patients on prophylaxis were 79% more likely to develop a breakthrough infection than those who had Deflux. That’s a pretty good argument for using Deflux as a first line of treatment in lower grades of VUR.
Another benefit to Deflux is recovery time. The injection itself takes only about 10-20 minutes, and is usually done as an outpatient surgery. The child can usually go back to normal activities the next day. That’s a pretty big difference from the surgery. Reimplantation surgery is usually 2-3 hours and recovery takes a while because of the incision, catheter and bladder spasms. Another positive is that by doing Deflux first, you are not ruling out any treatments later. Some open surgeries can prevent later treatment options.
While Deflux is a great option, for some children reimplantation surgery is a much better option. This was the case for us. Lizzie had grade 5 VUR, with multiple recurrent infections, and that meant open surgery. When we later discovered that her reimplant failed, Deflux became an option for us, and she had a Deflux injection at the age of 11 months, along with a vesicostomy. Because we did the vesicostomy surgery at the same time, I can’t say what having outpatient Deflux is like. I can say that even with the other surgery, Lizzie recovered very quickly.
We won’t know for sure if Lizzie’s Deflux was successful until we can do another VCUG. It may be another year or so until we know, because of the difficulty of doing a VCUG with an ostomy. We are hopeful that the Deflux has at least helped the VUR, but we realize that another injection or two may be necessary because the grade of her reflux is so high.
If you think your child might be a good candidate for Deflux, you should talk to your doctor. You may also want to look at the links on this page for more information on Deflux.
Details on Lizzie’s Reimplantation
Please visit our new site at www.kidneyreflux.info for updated articles and information about ureteral reimplantation.
So here is a more personal account of Lizzie’s reimplantation surgery. We decided that our best option for Lizzie was a bilateral sheath reimplantation at the age of 5 months. We were hopeful that this would stop her infections.
We were scheduled for the procedure on November 26, 2008. On November 16th, she woke up with a fever of 103.2. Lizzie had another kidney infection. We were so afraid that they would postpone her surgery. It was decided that we should go ahead with the surgery, because waiting was putting her kidneys at risk. We were put on a high dose antibiotic for 9 days, and admitted to the hospital on November 25th.
She would have 24 hours of IV antibiotics to ensure that there was no infection, and they would proceed with the surgery. This was one of the most frightening times in my life, and I was so afraid of her having this surgery. They explained to us the procedure, and we were able to talk to the doctor before they took her back. I think that was the hardest part, handing her off to a nurse, and watching them walk down the hall to surgery.
We were told that the surgery would take about 2 hours, and maybe a little longer if they needed to taper her ureters (which were dilated). In reality, the surgery took much longer. During the surgery, they discovered that Lizzie had 4 ureters instead of the 3 we had originally seen on VCUG. Because of this they had to reimplant all of her ureters, and were unable to taper any of them. They did not want to keep her under sedation for that long.
After what seemed like forever (over 5 hours) the doctor came out and talked to us. He told us about the extra ureter, but assured us that everything had gone well. He was very optimistic. I can’t even put into words the relief that I felt. We were able to go back into recovery and hold our little girl. She looked so tiny and fragile. I couldn’t believe it was finally over.
She had 2 catheters in for about 24 hours, and we remained in the hospital for a few more days. Recovery was difficult, but as always, Lizzie was a trooper. She struggled with dehydration, and we almost had to re-admit her to the hospital 2 days later. Luckily, with a lot of diligence and patience, she began eating again. I had been nursing until then, but because of her dehydration, we began supplementing her with formula, which seemed to help.
One of the hardest things after the surgery was the bladder spasms. She would periodically have spasms that caused her a lot of pain, even while on the oxybutin. Luckily, the spasms got better when we were able to get her hydrated. Once we were able to get the hydration and spasms under control, she healed very quickly.
It amazes me how tough kids are. By the third day after her surgery, she was already rolling over onto her belly where her incision was. I was surprised at how big the incision was, it was about 3 inches across her belly, which in a 5 month old is huge! She seemed to have very little pain from the incision itself, and now, 13 months later, you can barely see it. If you didn’t know what to look for, you wouldn’t even notice it.
The debate about Prophylactic Antibiotics…
A lot of people have asked my opinion about prophylactic antibiotics. Are they safe? Are they effective? What kind of side effects do they cause? My first recommendation is always to do some research. Some kids do great with antibiotics, others don’t do well at all. You also need to weigh the risks versus benefits.
I’m not a fan of daily antibiotic therapy. I personally (and this is my personal opinion based on experience and research – not medical advice) feel like antibiotics are ineffective in preventing recurrent infections, and come with a lot of complications. Our Lizzie had 8, yep count them, 8 kidney infections before her first birthday. She was on prophylactic antibiotics for 7 of those infections.
After the first breakthrough infection (6 weeks after her first), we decided to change her antibiotic. We hoped that this time we had it right, and it would prevent further UTI’s. We did this after each infection. She had infections while on amoxicillin, bactrim, suprax, and furadantin. We even spent a few months alternating her antibiotics every week, in hopes that we could “confuse” the bacteria and keep them from colonizing. No such luck.
I suppose my biggest fear with daily antibiotics is the chance of resistant bacteria. On two separate occasions, Lizzie got a resistant strain of bacteria (psuedomonas). I will always believe that this was because of the daily low dose antibiotics along with monthly high doses from recurrent infection. Both times she had to be admitted to the hospital for 3/4 days, and both times she had to have a pic line. A pic line is basically a longer term IV, that allows you to give IV antibiotics from home instead of remaining in the hospital.
Antibiotics are very hard on the body. They disrupt the flora in the gut, and can cause major issues. This is a big concern for us, because of Lizzie’s constipation and yeast problems. Lizzie goes through cycles of being constipated and having a really loose stool. We can’t know if that is due to her condition or because of her daily antibiotic use. Because of that, it is very hard to diagnose and treat her bowel issues.
Yeast is also something that we deal with a lot due to antibiotics. The antibiotics don’t just attack the bad bacteria, they attack the good bacteria that you need to be healthy. Lizzie has had multiple yeast infections and we just got over a bad case of thrush.
Don’t get me wrong with all of this, I don’t think antibiotics are evil and I’m not against them in general. Antibiotics have literally saved our daughter’s life, so I know first hand how amazing they can be. I also understand that there are children who are more prone to UTI, and less responsive to antibiotics. But I do feel like antibiotics are over-prescribed, and can be dangerous for young children. There are studies showing that children on antibiotics at a young age are more prone to health problems such as asthma later in life.
So how do you balance it all and make the decision? Again, this is MY opinion, with no medical expertise. I would avoid antibiotics if I were able to do so. I might try heavy doses of probiotics along with more natural ways of avoiding UTI’s (cranberry juice, showers rather than baths, etc) before trying antibiotics. There has been some study on the effectiveness of treating VUR with probiotics, with positive results. This article has some good info. If there was a breakthrough infection, I might start prophylaxis, but I would consider going ahead with Deflux injection or reimplantation. There have been studies supporting Deflux injection before using prophylaxis.
All that being said… I’m a hypocrite, and Lizzie remains on antibiotics to this day. Because Lizzie’s case is so complicated, all of the specialists we have talked to have insisted that she stay on them. As much as we hate it, we don’t feel comfortable going against medical advice. It made the decision a lot easier when they threatened to quit treating her if we went against their advice.
So if your stuck with antibiotics, what do you do? My suggestion are:
- Probiotics – Florastor is one of the best to take while on antibiotics. It has a better chance of colonizing in spite of the antibiotics. It should be taken at least 2 hours before abx, but I try to give it half-way between doses.
- Watch your child’s sugar intake. This has really helped us in the yeast department.
- A healthy diet is imperative for helping to control the gut. Adding fiber to prevent constipation and making sure they are getting plenty of fruits and veggies.
- We also try to limit foods that have had exposure to antibiotics. This includes milk,cheese, beef, and chicken. Your best option is to buy foods that state on the label that they are antibiotic free (many companies are doing this now, Tysons, Kraft), or buy organic. If she is already taking daily antibiotics, I don’t want her to ingest extra doses, ya know?
- Lots of unsweetened Cranberry juice and water. Some studies show that cranberry juice can help reduce incidence of UTI and resistant bacteria. It can also be given capsules. Great to add to a smoothie, then your little one never knows it’s there!
Be sure and check out our links page under antibiotics, for some great info of prophylactic antibiotics.
Finally, a great uro visit….
Thursday Lizzie had an appointment with urology. I always dread them, and was expecting another appt where I would walk away with more questions than answers, feeling frustrated and sad. Much to my pleasant surprise, I walked away feeling encouraged and strong. For the first time, I feel like we sort of have this under control. Lizzie has been infection free for 6 months, and I feel like we are finally getting a handle on this thing. We still don’t know what this “thing” is, but I’m beginning to understand that we may never know, and that is finally starting to be ok for me.
So here is the progress report:
Kidneys still look good on ultrasound. There is still some swelling in the left kidney (hydronephrosis), but uro is not concerned about it at this time. Blood work looks good, she’s already on antibiotics, and the vesicostomy is keeping the kidneys safe, so for now, no worries, which is good news.
As for the antibiotics, she is still having to take them daily, despite gut and yeast issues, but we have realized this isn’t a fight we will win easily. Too be honest, since she’s been healthy for almost 6 months, I might be afraid to change anything anyway… despite how much I hate the antibiotics.
So now what? Now we wait. Assuming there are no other problems or infections, the plan is to wait 2 years and then take down the Vesicostomy. In order to take it down, we will have to make sure that the Deflux has corrected the VUR (or at least Greatly reduced it), and that the bladder is/can function properly. We will do a VCUG to determine the VUR status, and may have to repeat the Deflux surgery before reversal. We will also do another urodynamics to test the bladder, as well as blood tests, and a DMSA scan.
Once we’ve gotten through all of that, we take down the vesicostomy, cross our fingers, and jump straight into potty training. It will be a rigorous schedule of physically training the bladder, so she needs to be old enough to understand the concept, and get it quickly, which is why we are choosing to keep the vesicostomy so long. Once the vesicostomy is down, she will go from urinating through her belly, to being a “normal” little girl. I can’t imagine how strange that will be for a 3-4 year old. We are hoping to be potty masters so quickly and efficiently that we don’t have to catheterize, but we realize that when you have a ginormous (it needs it’s own word! lol) bladder that you might not feel, and you’ve never really used your hoo-ha, there might be some issues.
If all else fails, and she continues to get infections, we can always put the vesicostomy back in, so we have options. They are not our favorite options, and we feel confident that if anyone can do it, it will be Lizzie. I’ve learned that no matter what, Lizzie will be fine… better than fine. She is a fighter, and a truly amazing little girl. She has surpassed everyone’s expectations in growth and development, and she continues amaze us everyday.
