Dr. Mike Smith (Host): This is Pediatric Insights: Advances and Innovations with Children's Health, where we explore the latest in pediatric care and research. I'm Dr. Mike. And with me is Sharon Kluger, a pediatric nurse practitioner in Pediatric Surgery at Children's Health. Today, we'll discuss the bowel management program. Sharon, welcome to the show.

Sharon Kluger, APRN: Thanks so much for having me. I'm really excited to be here.

Host: Now, I know Children's Health has a very unique bowel management program. Would you like to tell us what this program really is and who it serves?

Sharon Kluger, APRN: Yeah. So, the bowel management program here at Children's Health was created to help children who are suffering with severe constipation or having stool accidents after they've undergone colorectal surgery as babies. So, these children are born with either an anorectal malformation or they have Hirschsprung's disease. And even after a successful surgery, they can continue to have long-term bowel issues.

So, the typical treatments that most providers will do for just basic constipation in children just don't work the same for these types of kids. So, that's why they need a more structured bowel management program, which is what we offer in order to get them what we call socially continent or free of accidents.

So, our program, it's an eight-day outpatient program that starts on a Thursday. In the clinic, we meet the family, we create an individualized plan and have them follow that starting in the weekend. And then, we do daily check-ins with the family. They have x-rays every day, the following week And then through that next Thursday, we meet them one more time to kind of finalize that plan. So, it's really important that we do individualized care and that we do those day-to-day changes in order to get them to achieve their goals by the end of the week.

Host: You kind of touched on this a little bit when you mentioned the more conventional guidelines for bowel management and how that doesn't always work in this population of patients. So, what gaps in care inspired you to start this program? And what level of care are you able to provide because of this program?

Sharon Kluger, APRN: So when the colorectal and pelvic center, also known as the CPC, was created about five years ago, in addition to offering the coordinated care and bringing all of our specialists together, we also wanted to make sure to provide these children with improved bowel management care earlier on in their life, because we were seeing more and more kids that would come to us at eight, nine or ten years old and even teenagers and they had never been free from accident. So, not only were these kids just suffering medically, but also like socially and psychologically just being affected by being that kid, you know? So, we were just inspired to create our Bowel Management Week Program for these specific kids that were born with those congenital malformations, and then just never were able to potty train.

So now that we have all of these resources together and this program in place, we can start this bowel management program for kids sooner when they're three or four years old, before it becomes socially or psychologically really difficult for these families. So in the past, these families would travel outside of Texas, because there wasn't a program here for them. But now, I'm really happy that we can offer this for kids that are in the DFW area, they can get their care close to their home.

Host: What kind of outcomes are you seeing so far in these patients? And touch upon life after the program a little bit.

Sharon Kluger, APRN: So, we've actually seen really tremendous success. I would say about 90% of our kids will be free from accidents at the end of it, which is really kind of amazing being that we're taking kids that have never been free from accidents and then, in one week, their life has changed. And some of the quotes from families are, you know, "This is life-changing," or "I just never thought that this was possible," or "I wish I knew this sooner," you know. So, it's really life-changing for these families and I don't want to understate that enough that the whole family is affected when a child is incontinent and struggling socially in school and aren't able to do their normal day-to-day activities. So, it's really, really impactful. And I'm happy to say that we've had really good outcomes through our program.

Host: Ninety percent plus outcome in medicine, that's about as good as it gets, you know what I mean?

Sharon Kluger, APRN: I know. I know.

Host: You're not to see much better than that. That's fantastic.

Sharon Kluger, APRN: Yeah, yeah, absolutely.

Host: When should a primary care doctor get involved here refer to your program? Are there some guidelines you have for them?

Sharon Kluger, APRN: So, we accept direct referrals from PCPs. They don't need to go to another specialist first and then come to us. They just have to have that underlying diagnosis of an anorectal malformation or Hirschsprung's disease. So if a PCP has a patient of theirs that has this underlying malformation, has bowel problems, constipation, still having accidents, we would be the program for that patient.

Host: And so, when they come to you then from a referral, how do you collaborate with that referring provider? And I guess other specialties too, right, to coordinate care?

Sharon Kluger, APRN: Yeah. So, we definitely provide feedback to the PCP after we've seen the patient and we send them our notes. We've done outreach to PCP offices also letting them know that we're here and we just kind of have an open door policy. Just reach out to us. Give us a call. We have given out our emails. So if they have any questions, once they're seeing those patients back in their office, we're happy to collaborate.

We also have so many other specialists here in children's health that we have access to. So, we work super closely with our urology colleagues, our GI motility providers, because a lot of times these kids don't just have one thing going on. You know, if they have fecal incontinence, they probably also have urinary incontinence. And it's really nice because we have that close relationship with these specialists. You know, if we need to take that child for a procedure after their bowel management program is done, we can coordinate that so that we can save that patient anesthetic and provide that holistic care.

We also have, you know, dieticians and child life specialists here and our social work team. And we now have many pelvic floor physical therapists that work with us in Children's Health that can provide the care that these patients need, because a lot of times we need to address all the issues that are impacting this patient and family in order to make sure that they're as successful as possible.

Host: And when a PCP wants to refer patients, can they do this online or is there a number they call?

Sharon Kluger, APRN: Yes. So, they can definitely go to our website at childrens.com/colorectal. They can fax a referral to our general surgery clinic, that would be (214) 456-6320. Or they can call us directly, our program manager, her number is (214) 456-8546. If a PCP just wants to kind of run by a patient case to see if that would be appropriate, we're happy to discuss that over the phone.

Host: Now, taking the perspective of the patient and the family, can you kind of run through briefly what they expect during the—I think you said eight-day program?

Sharon Kluger, APRN: Yeah. So, it's a full eight-day outpatient program. So, it starts on a Thursday morning. We meet the family in clinic. Typically, we'll have them do a study like an X-ray or a contrast enema beforehand, either the day of clinic or the day before. And then, that visit, they'll meet with myself, our colorectal surgeon, Dr. Hong. And they'll meet our nurse as well. And we'll discuss what the best program is for that family. So, that's either starting a new medication with a diet change, or we may prescribe them an individualized large-volume enema. So, this is an enema that we give them the supplies to do at home. They start this program, whatever we give them, that evening. And then through the weekend, they're documenting in the diary that we give them. And then, on Monday would be the first check-in where they get an x-ray. The x-ray can be done either at children's health in any of our radiology centers or for families that are coming from farther out. We're able to coordinate that at a local imaging center so that they don't have to keep coming back to our facility. And then, we do that check-in with our nurse and we meet as a team. So, our surgeon, myself and our nurse discuss the patient, discuss the imaging results, and then we may or may not make a change depending on how the child did that day.

And then, we do those check-ins Monday through Wednesday. And then, on Thursday, if the patient lives close by, we have them come back into clinic for that final wrap-up visit. or if they live farther away, we could do a virtual visit to kind of close out the week and make sure that we've found some success.

And if you know in that 10% that we're still struggling, we keep going and we keep finding what other things we can do to add to that. And sometimes that maybe requires another week or two. And then, we'll continue to see these patients every few months as check-ins and making sure as they grow and they get older, their diet changes or lifestyle changes, that we're also changing their bowel program.

Host: You know, when I hear you describe the bowel management program, to me, it just, it seems obvious. It seems like these are things and steps that just make sense, Sharon. Why is it that these programs are so unique? Because I know this is really the only one in the DFW area. Do you anticipate programs like this will grow and increase throughout the country?

Sharon Kluger, APRN: So, I think part of it is that it requires so much resources. I think we have an amazing team that is super dedicated, but it just takes time and resources that a lot of programs just don't have the capability to. So, I'm fortunate that I'm part of a program that has so much dedicated personnel to be able to get these kids the care that they need.

So, I think it's a resource issue a lot. And this isn't a common problem. You know, one in 5,000 kids are born with a congenital colorectal issue. So, a lot of families feel like they're alone, and don't know where to turn to. So, I think that that's a major reason why these places are kind of few and far between.

Host: Yeah. Yeah, that makes sense. Do you see in the future maybe using virtual appointments to maybe reach some children who are in an area where there's just not these resources?

Sharon Kluger, APRN: Absolutely. No, we definitely have already done some of that as well. We do have patients from Oklahoma or Louisiana, East and West Texas that it's hard for them to get to appointments. So, we've created a really vast network in the surrounding areas and states to be able to provide that care and make it as easy as possible.

Dr. Mike Smith (Host): This is great. What wonderful information and, you know, what the bowel management program is doing, especially kind of on the emotional side, right, for these kids is really amazing. And it's been wonderful talking to you about all this. Sharon, is there anything else you'd like to add?

Sharon Kluger, APRN: Well, I'd like to just say that this type of program is just not possible without a really amazing team. So, I just want to give credit to the surgeon that I work with, Dr. Hong, who's especially committed to these patients, and our nurse and program manager, Michelle, who are just key players in making this program successful, and all the time and effort that they've put into it.

So, I want PCPs and patient families to know that it just takes a role team to bring this level of success. So, I really just appreciate having the time to showcase our program. And let everyone know that we're here and accepting referrals and happy to take care of these patients and, hopefully, provide some life-changing support for these families.

Host: Sharon, thanks for coming on the show today. This was fantastic. Thank you for listening to Pediatric Insights: Advances in Innovation with Children's Health. You can find more information about the Bowel Management Program at childrens.com. If you found this podcast helpful, please rate, review, or share the episode and follow Children's Health on your social channels. This is Pediatric Insights. I'm Dr. Mike. Thanks for listening.