Melanie Cole, MS (Host): Welcome to Long Lived 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 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 at 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 neuro genital 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 anal rectal malformation
or rung 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 their 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 wanna join sports or other clubs because they're worried about
stool leakage, by the time they reach us.
Parents are usually exhausted and don't know what else to do.
They've tried diet changes, medications, enemas or other therapies, but their
child is still having accidents or still in diapers, and that really
affects so many parts of their life.
Of course, school, sports, friends, their home life.
so when we approach bowel management for our patients, it
consists of a personalized plan.
To help 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.
For some, their bowel management may consist of oral medications, like
stool softeners or stimulant laxatives.
for others it might be enemas where we flush the colon once
a day so they stay clean.
for some kids it may involve a surgical option with which doctor Ahad can.
Um.
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 (Host): 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.
Ahad, 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 wide variety of conditions in our clinic, starting from
congenital colorectal conditions.
These include anorectal malformations in patients who are born with
Hirsch springing disease.
again, these are complex congenital conditions that require surgery
usually in the newborn period.
And, a lot of these patients are lost to follow up after their newborn surgery.
So, the parents come and seek help from us, when they're.
Child is older and not able to body train or having accidents and not
being able to participate in sports.
And then other things that we also see are, some of those spinal neurological
conditions like spina bifida that affects your spinal cord and patients not being
able to, either stool or they have fecal incontinence due to that condition.
And then other things that we see are patients who don't have a
defined anatomical or congenital condition, but they are just.
Born, or they, have chronic constipation, something called a
functional constipation, and they've been struggling since childhood.
and they either come to us again at the time of potty training or
some of these conditions, or kids have been struggling with, chronic
constipation their entire life and come to us in their teenage years.
Melanie Cole, MS (Host): 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.
it could be.
We've, 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.
In the nicu or they've been referred to us later on if they had surgery elsewhere.
But if we know they had some sort of anal malformation or
hers, 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, because end the.
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.
Parents think that it's the baseline for their child and they really don't
know, and 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 wanna 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 (Host): 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.
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 Sena or X.
Selects, which helped the colon actually push things out.
Sena is actually an active ingredient in the x chocolate squares that you
may have seen, at your local pharmacy.
it's actually a natural sub 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 don't, have to make a long drive as often.
but so oral medications is typically our first.
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, 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.
But, our goal is to be keeping them regular.
with retrograde enemas, we typically use a soft catheter to deliver the fluid.
we can order certain branded systems such as, the Perine or the n.
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 MS 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, the recipe to them, until we have the right spot for each patient,
and typically the recipes consist of normal seal 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 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,
and if at all else fails, then we, start the transrectal route.
and sometimes they just need a little reset with the transrectal route and.
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 we're struggling.
Melanie Cole, MS (Host): 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 their.
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 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 should
definitely go to emergency room.
But for these chronically constipated kids, they should
come and see us in the clinic.
Melanie Cole, MS (Host): 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.
So, if patients are born with these conditions, if they're con something
called congenital, if they're born with them, that 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 while 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 there's, 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 they mechanism to actually empty their colon or rectum is appropriate?
Do they have something called pelvic floor dys, synergia?
Do they need pelvic floor physical therapy?
So we have a dedicated pelvic floor center.
physical therapy center where patients can be referred once
they're able to follow command.
So we can work on breathing exercises and strengthening exercises that
helps with that mechanics of both your abdominal as well as your pelvic floor.
and we've found that in, a lot of our patients.
that, that's been very, very 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 trans rectal
route and they just don't tolerate it.
they either have.
Some PTSD from their prior interventions, and they just don't wanna 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.
So 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, and 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 (Host): 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.
for us, 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.
and a large part of that is because of their possible stool incontinence.
And so 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, we have a psychologist that comes with us to
clinic because we see the value in that.
We really put mental health as a, one of the highest priorities for our program.
And, so just, yeah, having a sense of, normalcy and a happy childhood
for them is our biggest goal.
Melanie Cole, MS (Host): So important.
Dr.
Ahad, 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, that's It is.
You're not alone.
We see a lots and lots of parents and lots and lots of children with very similar
condition, and we are here to help.
There's a, 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.
just to give them.
one of my parent patients 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 there, 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 (Host): 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 lived childhood, a pediatric health
and wellness podcast, brought to you by Rady Children's Health.
Together we can keep kids happy, healthy, and thriving.
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I'm Melanie Cole.
Thanks so much for joining us today.