Bowel Management

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Melanie Cole, MS (Host): Welcome to Long Live Childhood, a pediatric health and wellness podcast presented by Rady Children’s Health. I’m Melanie Cole. And today, we’re talking about bowel management. We have a panel today, with Dr. Hira Ahmad, board-certified pediatric surgeon at Rady Children’s Hospital, Orange County, specializing in complex colorectal and urogenital reconstruction; and Ashley Bone, she’s a pediatric nurse practitioner with specialized expertise in bowel management and colorectal care at Rady Children’s Hospital, Orange County.

Thank you both so much for being with us today. And Ashley, I’d like to start with you. Can you just tell the listeners here what is bowel management and what are some of the reasons that a child might even need help with it?

Ashley Bone, NP: So when we talk about bowel management for our families here in our colorectal and urogenital center, we’re talking about helping our patients and families find a sense of normalcy and confidence.

A lot of families who come to us have been struggling through years. Their child may have had surgery as a baby, like for an anorectal malformation or Hirschsprung disease, or they may have been dealing with just really tough chronic constipation that just won’t get better no matter what they try.

Maybe they’re school aged and parents aren’t really sure if there’s many options at this point for them. They’re kind of at this point of dealing with multiple loads of laundry a day due to soiled clothes. The kids may not want to join sports or other clubs, because they’re worried about stool leakage. By the time families reach us, parents are often exhausted and unsure what to do next. They’ve tried diets, medications, enemas, and other therapies, yet their child still has accidents or wears diapers. These challenges affect school, sports, friendships, and life at home.

When we approach bowel management for our patients, it consists of a personalized plan. The plan helps a child empty their bowels every day and stay clean in between. Our main goals are to prevent constipation, stop accidents, give kids predictability and control over their own bodies. It’s definitely not a one-size-fits-all approach. Every child is very different. Some children manage bowel care with oral medications, such as stool softeners or stimulant laxatives. Others may require enemas to flush the colon once a day and stay clean. In certain cases, bowel management may involve a surgical option, which Dr. Ahmad can explain further.

But no matter what each individual plan looks like, the goal for us is always the same. We want our patients to be able to do the things they love without worrying about accidents or discomfort. And when it works, it’s truly life-changing. We’ve had kids tell us they were able to go to overnight camp at school or join certain sports because they finally have a bowel management plan that works really well for them.

Melanie Cole, MS: Thank you for telling us, Ashley. Really, it has such a significant impact on a child’s quality of life and the family as well. Because I mean, we all know as parents and we’re all involved in this. And so, it can really be devastating and debilitating for a child. And Dr. Ahmad, tell us a little bit about the conditions that you treat with bowel management. I know Ashley mentioned just a few. Can you expand just a little bit on that?

Hira Ahmad, MD: Yeah, absolutely. We see a wide variety of conditions in our clinic, starting from congenital colorectal conditions. These include anorectal malformations in patients who are born with Hirschsprung disease. Again, these are complex congenital conditions that require surgery usually in the newborn period. A lot of these patients are lost to follow-up after their newborn surgery, so the parents come and seek help from us when their child is older and not able to potty train or having accidents and not being able to participate in sports.

We also see children with neurological conditions, such as spina bifida, that affect bowel control or cause fecal incontinence. Other patients have no anatomical condition but struggle with chronic, functional constipation from an early age. Some are referred during potty training, while others seek care in their teenage years after lifelong constipation.

Melanie Cole, MS: Wow. So Ashley, if you were to think of the most common age that you would typically see these children, tell us what that is and the signs that parents should be on the lookout. Because kids get constipated, right? And unless it’s one of the malformations or a genetic issue, as Dr. Ahmad was just saying, there are other reasons. So, what are we looking out for and at what age? Because as we know with milestones, kids develop at all different kinds of ages.

Ashley Bone, NP: Yes. We definitely see ages of all kind as far as pediatric ages in our clinic. For our kids who are born with some sort of malformation, we typically can see them either in the NICU or they’ve been referred to us later on if they had surgery elsewhere.

If we know they had some sort of anorectal malformation or Hirschsprung, we do kind of anticipate that they may have certain issues with either incontinence or constipation, as they get older and closer to potty training age. Otherwise, it’s more school age and older when they’ve kind of had this long history of trying oral medications, trying other therapies and just nothing will work. Maybe they’ve already been referred to GI, and they’ve kind of gone that avenue, and they’ve had a workup for different motility disorders or other surgical disorders. And then, eventually, they come to us because we’re kind of that thought, end of the road, that they end up being referred to us.

Hira Ahmad, MD: I may add to what Ashley has already said, the patients that we’re seeing sometimes, they have struggled for constipation for their entire life. But parents think that it’s the baseline for their child and they really don’t know, which is why I think talking about this and doing this is so important because parents should know that it’s not normal for their child to not have a bowel movement for a week at a time. But sometimes they’re told that it’s normal, and it’s fine. And I think there’s a lot of, misconceptions and ideas that are perhaps not accurate, and we want to tell families and patients that we’re here to help them if they have been struggling with constipation.

Just to give you an example, some of the patients that we see in our clinic have been so chronically constipated that they’re in fact malnourished, meaning they’re not eating well, they’re losing weight. They haven’t been able to gain muscle and not meeting those milestones. And we want us to tell you guys that that’s not normal. So, there is help available for conditions like these, and that’s why we exist.

Melanie Cole, MS: Well, I agree with you and, as a mother, who when my son was little, he was constipated. And we did think for a little while it was normal and he would not go for a week or a week and a half. And I mean, I was frantic and my parents at the time were like, you know, “We never bothered with knowing whether you kids went to the bathroom or not.” But it is different now because we know so much more about it. So while parents are thinking this is normal, it’s really not. So, thank you for making sure to clarify that for us.

Now, Ashley, tell us what a bowel management program looks like on a day-to-day basis for the families and for the child. How do we know, if you start with MiraLax or one of the oral medications, how do we know if it’s working? What are we looking for as far as success?

Ashley Bone, NP: So, our first step would be typically oral medications, such as stool softeners or laxatives. We’re really looking for daily complete emptying of their bowels. No accidents in between bowel movements. If that’s happening, that’s great. That means that the plan that we’ve come up with for them is working.

Typically, we’ll use a few different types of oral medications, depending on what the child needs. There’s stool softeners like MiraLax or Lactulose that help keep the stool soft so it can move through the colon more easily. And then, we have stimulant laxatives like Senna or X-Lax, which helped the colon actually push things out. Senna is actually an active ingredient in the X-Lax chocolate squares that you may have seen at your local pharmacy. it’s actually a natural substance that comes from a plant. So, it’s really a safe and effective medication that we like to use in many of our patients. But if the patient is still having accidents, struggling with constipation or just not emptying fully, then that’s our cue to try something else such as a different medication or just adjusting dosages.

The good part is families don’t need to be figuring this out on their own. We keep a really close eye with frequent follow-ups. I have my own bowel management clinic, so I can see patients more often. We’re continuing to grow and expand our clinic time, because the need is just so big in our population. And for families who live far away, we can also do telehealth appointments, that way kids don’t have to be missing school or families, you know, don’t have to make a long drive as often.

 Oral medications are typically our first step. Oftentimes, our next step is what’s called retrograde enemas, which is basically putting fluid into the rectum from their bottom or anus via a catheter. The liquid washes up into the rectum and the left side of the colon. It loosens the stool and then everything flushes out into the toilet. It’s meant to serve as a way for a patient to have a bowel movement at least once a day. But because it’s not cleaning out the entire colon, they may still have a stool within the next day.

Our goal is to keep them regular. With retrograde enemas, we typically use a soft catheter to deliver the fluid. We can order certain branded systems such as the Peristeen or the Navina. And these systems have different product options that can help with making the experience as comfortable as possible for them. We also have nurses in our clinic who will teach families how to use these systems. And then, we send them home with videos so that they can refer back at home.

For many of our kids, these types of enemas work really well. And they can eventually learn to do them independently, which is great as they get older, go into adulthood, college. And we adjust their enema recipe similarly to how we adjust oral therapy. So, we’ll tailor the recipe to them until we have the right spot for each patient. And typically, the recipes consist of normal saline and other additives, which can help kind of soften the stool, make it easier to move along and help the colon kind of push things out.

Hira Ahmad, MD: Yeah. And if I may add to what Ashley already said, we kind of use the rectal therapies as a last resort. A lot of times, we’re able to adjust the medications, we’re able to add additional medications to their oral regimen. And we really try hard because it is a challenging condition. We try really hard for patients to try the oral therapies first.

If at all else fails, then we start the transrectal route. And sometimes they just need a little reset with the transrectal route, and then some of our patients can transition back to oral therapies. So, there’s a lot of different things that we have in our back pocket that we can adjust as we move along and as we go. So, that’s not the only option that we offer. It’s just one of the many options that we are able to offer the children who are struggling.

Melanie Cole, MS: Dr. Ahmad, I think one of the things that parents are always wondering is: can this lead to something more serious like a bowel obstruction? Are we looking for anything like that? Can this happen if a child is severely constipated? Can something like that happen? What are we looking for at home to signal that, “Hey, this is, really a serious situation right now”?

Hira Ahmad, MD: Yeah, absolutely. So, there’s a lot of worrying signs that parents can look out for. One thing is, is the child acting out of the ordinary? Is this their baseline behavior or is this something that’s out of their ordinary baseline behavior? Some of the things to specifically look out for is when children stop eating, when their abdomen gets big or distended, or if they start throwing up at home, that’s a worrisome sign.

Some of these chronically constipated kids, they can kind of just trek along until, as I mentioned earlier, they actually get malnourished. So, they eat, but they just don’t eat enough. And then, they’re slowly starting to decrease the amount of food that they can intake and also absorb so they become chronically malnourished. So, all of these conditions should be something that we could constantly tell our families to keep an eye on, and then present to the urgent care or come to see our clinic if there’s any of these warning signs. Warning signs, they should definitely go to emergency room. But for these chronically constipated kids, they should come and see us in the clinic.

Melanie Cole, MS: Are there surgical options, I mean, if it’s genetic or a malformation? Tell us a little bit, just briefly about what you do with these children, Doctor, as far as helping them to continue with that quality of life.

Hira Ahmad, MD: Yeah, absolutely. When patients are born with congenital conditions, they usually undergo surgery within the first few months of life. The things that we’re constantly checking for, even after they have a successful operation is: has there been any complications from the surgery? For example, that opening that we created, has it narrowed down and is perhaps that’s why children are struggling? Or is there too much stretch that has happened over time and do we need to reevaluate that and do some contrast studies? So, we’re constantly asking, is there any anatomical reason why this patient is having problems?

And then, over time, what we see is anatomically the surgical anatomy is okay, but there’s still continued to struggle. And then, we ask our selves a question like, is the motility, meaning the strength with which the colon and rectum is moving, is that okay in the child? So then, we evaluate for that and that’s when our gastroenterology colleagues are very, very helpful in evaluating the motility of the colon to make sure that the colon is moving in a right strength.

And then, we can also tailor our medications based on the strength of the colon. We also have really focused a lot on the pelvic floor of these patients. So, we routinely check for the pelvic floor function. Like, are their mechanisms to actually empty their colon or rectum appropriate? Do they have something called pelvic floor dyssynergia? Do they need pelvic floor physical therapy? We refer patients to our dedicated pelvic floor physical therapy center once they can follow instructions. There, therapists teach breathing and strengthening exercises to improve abdominal and pelvic floor function. We’ve found that, in a lot of our patients, that’s been successful in helping them empty their colon and rectum.

And then, other options we have is for patients who we’ve tried and tried oral therapies and they’re still struggling and we’ve tried the transrectal route and they just don’t tolerate it, they either have some PTSD from their prior interventions, and they just don’t want to do the transanal therapy, which is very understandable, then we actually have the option to give them something called an antegrade route, which is a really cool procedure because you take an appendix, which attached to the colon normally, and you use it as a conduit to administer their flush.

Instead of inserting a catheter from the bottom, now you’re using their appendix as a conduit to insert their flush from the top. It makes patients very independent. It gives them a lot of control over their bodies. A lot of our patients are very satisfied with this antegrade option. Again, with the option, we are constantly talking to them that this is not their only option. Once they’re very well settled in that routine, we can always try the oral therapy again to see if it would be successful in another two or three years.

Melanie Cole, MS: This is such interesting information and such a comprehensive approach that you’re both offering us here. I’d like to give you each a chance for a final thought. So, Ashley, I’d like you to speak about what success in bowel management program looks like. And for parents that are wondering, do kids that are constipated for various reasons grow out of it sometimes? Is it something that as their colon grows, as their body grows, motility increases, these things, that they do grow out of it? Tell us a little bit about what success looks like and what you want parents to know about the program at Rady Children’s Health.

Ashley Bone, NP: I think, for all of us, success looks different for each patient. For some, it might be graduating from enemas to oral therapy, from oral therapy and off, maybe just maintained on diet. For others, it might be staying on enemas for the rest of their lives. I think our main goal for all of our patients is just to help them have as normal and as wonderful a childhood as they can.

A lot of our patients become very depressed and maybe they’ve experienced bullying at school. A large part of that is because of their possible stool incontinence. For us, if we can just get them to have a sense of normalcy and be as close to their peers as possible as they see fit, that’s definitely a win for us. And we actually also have a psychologist that comes with us to clinic because we see the value in that. We really put mental health as one of the highest priorities for our program. And so, yeah, having a sense of normalcy and a happy childhood for them is our biggest goal.

Melanie Cole, MS: So important. Dr. Ahmad, last word to you. What advice would you give parents who are feeling overwhelmed or discouraged by their child’s condition and what you can offer them at Rady Children’s Health in Orange County?

Hira Ahmad, MD: Absolutely. I would say that if you’re feeling overwhelmed, you’re not alone. We see a lot of parents and children with very similar condition. We are here to help. There’s lots of options. I know they’ve been told that this is their child’s normal and it would never get better, but I want to tell them that there is options available for them.

 One of my patient’s parents told me that they were doing several loads of laundry a day. The patient wasn’t able to participate in sports and they were considering homeschooling because they were constantly getting called from the nursing staff. And nursing staff didn’t at the school, didn’t feel comfortable changing a grown child’s diaper. And they spent a lot of time with us in their bowel management program.

We came up with strategies together. We understood what they wanted, or what the success for their child looks like. And now, their child is in underwear. They’re participating in sports. In fact, I got a video recently of them doing flips at gymnastics. And parents are happy. They’re not doing laundry several times a day. They’re just doing it once a week like any other home. So if you think something is not right, come and see us. We’re here to help and we’ll come up with a strategy together.

Melanie Cole, MS: So, there’s plenty of hope available. Thank you both so much for such an uplifting and encouraging episode today. Thank you for joining us and sharing your incredible expertise. And thank you for tuning into Long Live childhood, a pediatric health and wellness podcast, brought to you by Rady Children’s Health. Together, we can keep kids happy, healthy, and thriving. If you enjoyed today’s episode, please consider downloading, subscribing, rating, and reviewing Long Live childhood on Apple Podcasts, iHeartRadio, Spotify, or Pandora. Your support truly means a lot. I’m Melanie Cole. Thanks so much for joining us today.

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