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Melanie Cole (Host):  Welcome to UF Health Med Ed Cast, with UF Health Shands Hospital. I'm Melanie Cole and today we're examining the role of bowel management programs in pediatric patients with colorectal conditions. Joining me is Dr. Robin Petroze. She's an Assistant Professor in Pediatric Surgery at the University of Florida College of Medicine and Erin Murray. She's an Advanced Practice Registered Nurse in the University of Florida Division of Pediatric Surgery. Thank you both so much for being here and Dr. Petroze, I'd like to start with you. Tell us some of the common conditions that you treat for children with colorectal conditions.

Robin Petroze, MD, MPH (Guest): So, Melanie, thank you so much for the invitation. And I think that this is a unique topic, for reaching out to some of our referring providers. A lot of people understand that pediatric surgeons treat conditions like Hirschsprung disease and anorectal malformations, but what they don't know is that we're also involved in lifelong management of these children because they do have issues with bowel management and to start, I'll define a little bit about what bowel management is. The easy way to think of it is a spectrum from constipation to incontinence. And so what we do with our kids with potty training, but it becomes a little bit more complicated when we have kids that have anatomic issues. The most common anatomic issue that we see in our bowel management clinic are anorectal malformations. These are things like imperforate anus that may or may not have a fistula. These kids often undergo surgery at an early age, sometimes as a single stage procedure to create an anus, if they weren't born with one, or to move the position, if it wasn't within the muscle complex or the sphincter complex. Many of these kids have associated anomalies, including anomalies that are cardiac, genetic, associated with the urinary system, et cetera. And many of them undergo a staged procedure and have an ostomy and later get their final corrective procedure.

These kids always have issues with constipation or incontinence. And I think one of the important things when I meet with families initially is really helping them to understand that we're building a relationship, to help their child as they grow and to really integrate, but they are going to have a little bit more of a challenge in managing their bowel movements.

The next patient population are those with Hirschsprung's disease, and this is a congenital aganglionosis, or the nerve cells that help send the signal to stimulate stooling for a portion of the rectum are not there. These kids also undergo corrective surgery that more commonly is done in a neonatal or infant period as compared to years ago, but they also can have issues with constipation as well as with something called enterocolitis. All kids with Hirschsprung's have about a 10% risk of having enterocolitis. And so having that connection with a team that really understands them, and the subtleties of their diets and bowel management and, you know, adding medications or other interventions to help them along is really important. Many centers also treat kids that have spina bifida or myelomeningocele, and other anatomic reasons.

And then we do see a certain number of kids that have functional constipation or have kind of a late onset constipation that really has just alluded the ability of the pediatrician and some of our gastroenterology colleagues that, that see us for more aggressive management.

Host: Thank you for that. So, Erin, help us to understand the role of bowel management programs in pediatric colorectal conditions as Dr. Petroze has just described, and while you're telling us about the program itself, tell us about the importance of reviewing the entire clinical history and performing the tests that you need to determine the type of malformation that the patient might have been born with and the potential for bowel control that the patient does have, or will have.

Erin Murray, APRN (Guest): I'm happy to do so. Bowel management was purposely conceived for children born with imperforate anus as Dr. Petroze had mentioned, but it really can be applied to all children with degrees of fecal incontinence or constipation, but it's very patient specific. We tend to run an intensive bowel management program over five to seven days with radiographic surveillance. Typically around the child three to four years old, when they express an interest in potty training or when their peers are out of diapers and they want to be the same. Our program is usually laxative or enema based. And your method depends on, determining a child's potential for bowel control that goes along with their associated diagnosis.

Your potential for bowel control, is usually per a predictive matter on if there is an associated fistula, if there is a presence of a sacrum, or if there's a presence of a tethered cord, there is a predictor for bowel control, such as the sensation of the anal canal, the sphincter control and the ability of the sphincter and the motility of the colon.

When we work up a new patient for bowel management program, we review their associated diagnosis and if they have a fistula associated. We start with a basic abdominal x-ray and then depending on their diagnosis, we may move to a contrast enema or other methods of imaging, such as a Sitz marker study or an anorectal manometry or even colonic motility testing. When we pick our program for a particular patient, once we determine if there is a presence of fistula and if this is true incontinence versus pseudo incontinence, then we consider the patient's potential for bowel control. And consider their predictor for bowel control as well. That guides us in terms of which imaging we're going to order and which therapy we're going to pursue, dwell enema therapy versus laxative therapy.

Host: What an interesting program that you are both doing there. So, Dr. Petroze, tell us about the various options, as Erin's just mentioned, a little bit about the medicational management. I'd like you to expand just briefly and then explore some of the surgical options that are available for pediatric patients with longstanding bowel management needs.

Dr. Petroze: Thank you, Melanie and I think it what Erin highlighted very well, is that, you know, this is really developing a relationship with the family and with the child. And it takes some time for us to get to know them and to really tailor the program to that individual child. And this is really important when we have new patients come to see us. Some of the patients that we see where we performed their initial infant or neonatal procedure, and we've been able to follow, we have some of that information. We've been able to counsel the family and get to know them and really explain the role of bowel management. For a lot of the kids that we see who come to us either a little bit later, or from another center, it really takes that initial exploration that Erin talked about to get to know them and what they had done.

A lot of these families are very frustrated when they come because their kids, you know, have had issues and seen multiple specialists and things that are working or not working. And so the most important diagnostic test as Erin kind of hinted that really is a good history and physical and finding out the details about what the family has been using in the past and what works. And there's a lot of subtle changes to tailor that to a child. And I do think that kind of starting from step one is some of the most important things that we do with these kids. But if they get to the point where that's not working, or they had a repair, they had surgical intervention elsewhere, there is a role for surgery in that initial intervention, just in doing an examination under anesthesia, in terms of looking at the tightness of the sphincter, where is the muscle complex of the anal sphincter located, are there other anatomic abnormalities? Is it a patient that never had a biopsy done to rule out Hirschsprung disease?

All of that is very valid. And I end up doing that in some of the initial kids, as kind of their first surgical exploration or even in some of the children who had repairs previously to make sure that there's not an anatomic reason and to help give us some diagnostic accuracy there. Then we get to the management stage. There were a couple things in the operating room, for Hirschsprung disease and some functional constipation that is useful. One of those is anal sphincter Botox which I tend to use both as a diagnostic modality, as well as a treatment modality to help with our bowel management program.

And this helps to relax the anal sphincter so that kids can really start from scratch when they're starting a bowel management program, if they have an impaired anal inhibitory reflex, or some tight anal sphincter, it helps that relaxation being there's also a social and psychosocial component to it. The next area where surgical management comes in, is really working with people like Erin, who are doing the day-to-day management with the parents on patients that have had a successful enema program, for example, to consider if they don't have the ability to control stooling on their own, do they need a way to do antegrade flushing, meaning to flush the colon from the other side, by creating an appendocostomy to me or a C-costomy.

And this really involves a lot of teaching with the families, and making sure that they have had a successful enama program to make sure that this will work. The goal for kids that don't have function on their own is to keep them clean during the day so that they can go to school, so that they can play, so that they can be as normal as they can be and find something that works for the parents.

Those are the most common things that we're doing from a surgical standpoint. When we get down to the kids that really don't have much tone at all, there are some that are eligible for sacral nerve stimulation and neuromodulation. If the nerves aren't quite firing, occasionally, you know, you can help that along. And these kids, it's really exciting to see a kid that doesn't have control that then does have control. That's a little bit more of a process in terms of really understanding what their past history of control or lack of was and kind of moving down the road for neuromodulation.

Host: So, before we wrap up, I'd like to give you each a chance for a final thought. But Erin, before we do that, as Dr. Petroze mentioned, the rectal flush and teaching families, I imagine this is really a very important part of your job, what are some of the things that you recommend to families that can be done to make it more comfortable? Because it can cause a lot of anxiety for both children and the families. And also while you're telling us some of the things your team does to go above and beyond, what about changes in diet? Have they been useful to these issues or in some cases counterproductive?

Erin: Great question, Melanie. Dwel enema therapy is a little scary. It's scary for the families. It's scary for the patients, if they've never done this before. Sometimes if we have new patients that are a bit older, and have had some sort of enema therapy in the past, they're not exactly excited to partake in another enema therapy program.

What makes dwell enema therapy different from you know, over the counter enema therapy is that it reaches higher in the colon and it's designed to empty the colon and produce a predictable bowel movement for the patient every day. Choosing an enema program versus a laxative program depends on those features that I mentioned earlier, what their potential for bowel control is. If a patient does not have any potential for bowel control and they are incontinent of feces, then they will most definitely require an enema therapy program.

If they have a good potential for bowel control, then they would be a good candidate for a laxative program. When a patient comes to see me to initiate dwell enema therapy program, in person I do this two ways. One way is we can do an in-person visit and I have some therapy model dolls that I let the kids play with and the parents as well. If they are from a distance and can't travel, oftentimes we will mail the supplies and have a Telemedicine visit to discuss how we're going to do this, to help relay some anxieties, and talking to the children and letting them put their hands on the equipment is very important for them to get comfortable and know that this is not going to hurt them.

Diet, incorporation of diet control is also important. We can use a combination of fiber and pectin supplementation for hypermotal colons to help slow things down. For kids with slow moving colons, there's really no special diet, but in anybody that has issues with constipation, we try to avoid constipating foods. We do have a registered dietician that works with us and is willing to discuss with patients and families, dietary measures to prevent constipation, foods that they can choose that would help the elimination process goes smoother for them.

Host: Dr. Petroze why don't you give us some final thoughts on what you see in the future for these patients, the importance of early referral and why you would like providers to refer to the program at UF Health Shands Hospital.

Dr. Petroze: So, I think that's one of the keys with bowel management and particularly in patients who have anatomic abnormalities, anorectal malformations, Hirschsprung disease, myelomeningoceles and spina bifida, is understanding and counseling those families early, that this is a lifelong commitment with their child to a bowel management program.

And that sounds scary initially, but I think what's important is the kids that we know early on and that we have ties to, is we think a little bit outside the box in terms of what is the anatomy, what are the associated malformations? I have the advantage of being able to see that anatomy on the kids that I operate on, that a pediatrician may not have, that adds something special to what we can offer as well as moving towards more aggressive therapies when needed including things like antegrade flushes and sacral nerve stimulation. I think that the key is that a lot of these kids have significant psycho-social trauma from stooling and elimination.

And the families do too. And so, it is a process and a relationship and really getting to know them and to build that trust. And so, the earlier we get to know them, the better it is for the family and for the kids. And we do have, as Erin mentioned, a lot of opportunities to do this through Telemedicine, since a lot of it is you know, related to conversation and that so, I think that dealing with stooling and elimination can be a challenge. And when we read the textbooks about some of these anatomic issues, we don't recognize the need for the lifelong management that these kids and these families have. And I find that the parents that are tied in early do have, they have an extra safety net and being able to reach out to us and especially to reach out to somebody like Erin, who has some of these tricks in her back pocket.

Host: Thank you both so much for joining us. What an informative episode that was. To refer your patient to the bowel management program at UF Health Shands Hospital, please visit UFhealth.org/pediatricsurgery for more information. You can also listen to more podcasts from our experts by visiting ufhealth.org/medmatters. That wraps up today's episode of UF Health Med Ed Cast with UF Health Shands Hospital. Please remember to download, subscribe, rate, and review this podcast and all the other UF Health Shands Hospital podcasts. I'm Melanie Cole.