January 28, 2025 • 40 mins
Amber hands over hosting duties to Jamie Holland, a patient advocate with Crohn's disease. They discuss their personal experiences with inflammatory bowel disease (IBD). They focus on Amber's decision to have j-pouch surgery after being diagnosed with dysplasia and the effects it had on her fertility. Jamie asks Amber to share about the emotional and physical challenges of motherhood with IBD, including fatigue and guilt. They also touch on the possibility of passing IBD on to children and the importance of community and support.
Concepts discussed on this episode:
- Xue M, Leibovitzh H, Jingcheng S, et al. Environmental Factors Associated With Risk of Crohn's Disease Development in the Crohn's and Colitis Canada - Genetic, Environmental, Microbial Project. Clin Gastroenterol Hepatol. 2024;22(9):1889-1897.e12. doi:10.1016/j.cgh.2024.03.049.
- Singh N, Bernstein CN. Environmental risk factors for inflammatory bowel disease. United European Gastroenterol J. 2022;10(10):1047-1053. doi:10.1002/ueg2.12319.
- Oh SJ, Kim HJ, Lee CK; Big Data Research Group (BDRG) of the Korean Society of Gastroenterology. A dose-dependent increase in the risk of inflammatory bowel disease after exposure to broad-spectrum antibiotics: A national population study in Korea. Aliment Pharmacol Ther. 2023;58(2):191-206. doi:10.1111/apt.17542
Find Jaime Holland at:
- Facebook: @prettyrottenguts
- Instagram: @prettyrottenguts
- Tik Tok: @prettyrottenguts
- Bluesky: @prettyrottenguts.bsky.social
Find Amber J Tresca at:
- Verywell: Verywell Health
- Facebook: @aboutIBD
- Twitter: @aboutIBD
- Pinterest: @aboutibd
- Instagram: @about_IBD
- YouTube: @AboutIBD
- Threads: @about_IBD
Find Mac Cooney (mix, sound design, and theme music) at:
- Facebook: @maccooneycomposerMark as PlayedTranscript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Amber Tresca (00:05):
I'm Amber Tresca, and this is about IB D. I'm a
medical writer and patienteducator who lives with a J
pouch due to ulcerative colitis.It's my mission to educate
people living with Crohn'sdisease or ulcerative colitis
about their disease and to bringawareness to the patient
journey.
Welcome to Episode 167.
I welcome my friend JamieHolland back to the show. Jamie
(00:26):
is a writer, journalist andpatient advocate. She also lives
with Crohn's disease and severalother conditions. Jamie's going
to take over hosting duties andask me some questions for this
episode, though, I admit thatI'm a really poor guest, and I
default back into hosting modeas soon as I'm given a chance.
We explore the complexities ofparenthood while managing
(00:46):
chronic illness.
Some of the topics that we touchon include how I made the
decision to have J pouchsurgery, the impact that IBD can
have on the management ofpregnancy, and the feelings of
guilt that come up when thefatigue from IBD sets in.
Hearing from both of us ishelpful, because Jamie and I
have different diagnoses, and weeach had our own path to
(01:07):
parenthood. Jamie and I alsodiscussed the concern many
parents have about passing on achronic illness to their
children. We each give aperspective on how we navigate
these worries, and it's not whatyou might expect.
Jamie, welcome back to aboutIBD.
Jaime Holland (01:28):
Hi, thanks for having me.
Amber Tresca (01:30):
Oh, it's my pleasure. I wonder first, Jamie,
if you could briefly introduceyourself, absolutely.
Jaime Holland (01:38):
Hi everyone. My name is Jamie Holland, and on
social media, you can find me atpretty rotten guts. I'm a
Crohn's patient. I also havepsoriasis and psoriatic
arthritis and a host of otherfun medical conditions that come
along with having the IBDS.
Amber Tresca (01:56):
Yeah, they're, they're all a good time, aren't
they, and you're kind of likecollecting them all like you're,
you know,
Jaime Holland (02:02):
They're my little Pokemon.
Amber Tresca (02:05):
All right, Jamie, I first want to set up the
premise for this episode becauseI asked the community at large
for some questions that I couldanswer from my perspective. So
for once, making an episode,maybe a little bit more about me
than it normally is, and somereally great questions came
(02:26):
through that I would be soexcited to answer. And Jamie, I
know that you have been dying tobe the one asking me the
questions yourself as ajournalist, so I asked you to
host and feed me the questionsthat I could answer. So I'm just
going to hand it over to you andlet you be the host of about
IBD,
Jaime Holland (02:47):
Cue evil laughter. Let's dive right in.
Yeah, all right. So for ourfirst question, this one I've
always wondered about. Questioncame in about the decision to
have J pouch surgery. The readeris wondering about your journey
with that.
Amber Tresca (03:07):
Jaime, why did you you always wanted to ask this of
me, or of anybody?
Jaime Holland (03:11):
When I meet people with a J pouch and that
they have kids, I always want toknow, like, what their journey
was, and especially you know youand I have had our kids almost
two decades apart. So thingshave changed so much in that
time.
Amber Tresca (03:25):
Yeah, it's Yeah. It was very different, because
you have to remember that I hadJ pouch surgery in 1999 so the
surgery was being used for quitea while, but still, there was a
lot that was unknown.
So the reason why I had j-pouchsurgery is that in my last
(03:48):
colonoscopy, they founddysplasia. So that means that
there was pre cancerous changes.And that makes sense because I
had about 10 years of prettyactive disease. You'd have to
understand that between 1989 and1999 there were not any advanced
therapies, and by that I meanthings like biologics.
(04:10):
Okay, so I had a couple ofchoices at my disposal. One of
them you cannot use for the longterm, even though I was on and
off it a lot. The other oneworked for a while, and then
didn't work quite as well. So itwas a lot of inflammation over a
(04:30):
period of 10 years.
Now, after 10 years, maybearound eight with ulcerative
colitis, that your risk of coloncancer increases, starts to
increase, and it's because ofthat inflammation. So that's
what happened there. My gastrosaid, Yep, you know, there's
some dysplasia in there. There'spolyps everywhere. I think they
(04:53):
were not they called them pseudopolyps, I think, or inflammatory
polyps, not real ones, but therewere so many there, they were.
Not. They couldn't go in and,like, tell the difference, you
know. So it was a mess.
My colon was falling apart. Andhad to come out. I don't
remember ever talking about, doyou want an ileostomy or do you
want a J pouch? And I had threeconsults. So I went to three
(05:16):
different surgeons and got threedifferent answers. And the
surgeon I went with, he did thesurgery in two steps. That's
what he laid out for me, and itresonated with me at the time.
So I had an ileostomy betweensteps one and two.
The first step was colectomy, Jpouch creation, placement of
(05:36):
ileostomy. Second step isreversal of the ileostomy, and
then you're using a J pouch andgoing to the bathroom out of
your bottom again. So I don'tthink any of my consults ever
wanted to place an ileostomy onme. I don't think that was ever
really put forth as a choice,and I don't think I ever
seriously considered it.
We also didn't know a lot then,and not that it would have
(06:00):
changed my decision at all, butwe did not know what long term
effects would be. I was 26 I wasnot yet married. That shouldn't
make a difference, but maybe itdid with the surgeons that I was
talking to, about how it wouldaffect your future, and as far
(06:22):
as not just fertility, but alsopregnancy. So we didn't know a
lot, my surgeon told meeverything that he could.
And by the way, I did somethingthat I would tell people not to
do, but I did it anyway when Iwhen I saw the surgeon that I
decided to go with. It soundsvery weird, picking a surgeon,
(06:44):
but I did. I picked a surgeon,but it was, it was absolutely
the right choice, even though,when I asked him how many J
pouch surgeries he had done, itwas six. But he trained under Dr
Fazio, and I won't say a lotmore about him, but he was
(07:04):
absolutely the right choice. Wasan absolute rock star just so
happened to be living in thesame town that I lived in, so
kind of got, I don't like sayinglucky. I don't like that word
luck, but yeah, no, that's kindof what happened.
And when I had the ileostomy, myileostomy was perfect, and it
(07:26):
was perfect, beautiful littlestoma. It went really well, so
much so that when I went backfor my reversal, I remember
being prepped for surgery andlooking at now my husband, then
fiance, and saying, Why am Ihaving more surgery? I'm doing
great. But of course, I mean,they already made the J pouch.
(07:46):
It's kind of stupid to not goforward with it. And the
reversal was easy. That was aneasy surgery. So yeah, that's
what happened.
So it there wasn't a lot ofthings that went into my
decision making process otherthan the J-pouch surgery was
available to me, everyonethought I was a good candidate
(08:07):
for it, and at no point did anysurgical consult or even my
gastroenterology team suggestthat I stop at an ileostomy.
Jaime Holland (08:17):
Okay, so, yeah, that's fantastic, the fact that
Amber Tresca (08:18):
So I would say it was it was urgent, but it was
you know you were able to makethe decision to a choose your
surgeon, and that this wasn't anemergency situation, because
not an emergency, right? So timefrom last colonoscopy to surgery
there's so many of our peers whounfortunately don't get to have
those options before them,because sometimes things have
progressed too far, too quickly.
(08:49):
was less, was a couple ofmonths, so we did move it along
pretty quickly, but yeah, but itwasn't an emergency.
Jaime Holland (08:55):
That's great. When you were going through this
process with interviewing yoursurgeons, was the topic of
fertility ever brought up whenthe J pouch was first discussed?
Amber Tresca (09:07):
Yeah, it was only one of the surgical consults,
and that was the one that I wentwith who brought it up, and I
had talked about fertility, notnecessarily fertility, okay?
Because with the J pouch, whatyou're concerned about, mostly
is fertility with IBD ingeneral.
What I was concerned about whenI was younger was not so much
(09:29):
fertility, but pregnancy andbeing able to carry to term. And
I had asked various my variousgastroenterologists over the
years about that. And as amatter of fact, I wrote, This is
what I wrote my college entranceessay on, believe it or not, I
interviewed like my healthcareteam about IBD and about
(09:52):
different things. And fertilitywas definitely and pregnancy was
definitely one of the thingsthat we talked about.
And at that time, mygastroenterologist gave me his
opinion on what, how he wouldmanage my care. Should I want to
become pregnant, which, ofcourse, is completely different.
Now would be completely what hesaid then would not be what we
would do now.
(10:13):
So anyway, so in 1999 we didn'treally know a lot about how
fertility, what fertility wouldlook like for me after J pouch
surgery, what my surgeon did sayis that it's possible that
there's going to be scarring.And he said scarring is really
the main issue here, because Jpouch surgery is so deep in your
pelvis, and so what they'reconcerned about is that your
(10:35):
fallopian tubes could get couldhave scarring on them.
So it is not that you can't getpregnant. It is that the eggs
cannot get to the uterus. Sothat's, that's the issue, you
know, the train can shut downthere as long as, as long as the
egg could get to the uterus, youknow, unless there's something
else going on, everything shouldbe fine. And so that's what he
(10:57):
told me, that's what we talkedabout.
He did something. I don't knowwhat it was. He did some stuff
while he was working on me totry to preserve my fertility. At
the time, I was kind of worriedabout, like, living. I mean, I
was concerned about fertility,but I was concerned more about
just making it through this and,yeah, just basically, like, I
(11:22):
don't know what I'll say, like,like, living and not having
cancer, you know.
So what he did worked. When Iwent through fertility testing,
everything was fine. Myfallopian tubes was, you know,
great highways. So, yeah, whathappens with the scarring
doesn't happen to everyone,right, you know. And now I know
(11:44):
that some people are advisedmaybe stop at ileostomy, have
your babies and then go on andget a J pouch if you want to.
That was also never somethingthat was on the table. We never
talked about that.
I don't know that people thoughtthat way. It was just never
brought up or posed to me, maybeperhaps because I was not
(12:06):
married at the time, althoughthe date was set. But, yeah,
that was we never went throughthat. And now that's something
that I think is a topic ofdiscussion. I didn't have a lot
of I mean, choices wereavailable, of course, but we
didn't really think of them inthe same way.
So people having these surgeriestoday will have a lot more
(12:27):
decisions to make. For me, itwas kind of like, okay, this is
what we're going to do next, youknow. And it wasn't like you
could do this or you could dothat, you know. It was kind of
like, this is the naturalprogression, and that was the
way that it was, it was posed.But in any case, I have two
kids, which I think you alreadymentioned, Jamie, I do have two
kids. They're 14 and 17 now. Andyou know, everything, everything
(12:49):
went well from that perspective.
Jaime Holland (12:52):
Check, well done.
All right, so let's dive intothe second question. Are you
ready? Okay, were you considereda high risk pregnancy due to
having IBD or the fact that youhad abdominal surgeries leading
up to your J pouch.
Amber Tresca (13:08):
No, I was not, I think, what they were looking
for, and I was well cared for. Idon't want anyone to get the
impression that, like there wasanybody who dropped a ball here.
I was 34 and 37 when I had mykids, when you are that age,
that does enter into the pictureand they want to do things, and
(13:28):
I will tell you that there werecertain tests that they wanted
to do on me, especially when Iwas 37 that I refused because,
like an amniocentesis, I thinkmost people know what that is,
because there was nothing thatthey were going to tell me that
would change my mind aboutcarrying to term.
(13:49):
Okay, so here's my thing. Withtesting, if you're going to do a
test, is it going to give you aresult that's actionable in some
way. That's my question. Okay,so, and this is, like the base
what I go back to for myself andfor my kids, you know, right or
wrong is just my philosophy andhow I do things.
So they want to do anamniocentesis. What are you
going to tell me from that? Butwhat would our decision making
(14:11):
process be for that? And giventhat we did go to genetic
counseling, then the geneticcounselor called us boring.
Which is great, yeah, called usboring, and, you know, sent us
on our way. And the fact that Ididn't have any reason to
believe that anything would becoming up for these, for the
(14:34):
tests that they wanted to do,they carry those tests carry
risks, so I refuse them, and myteam was fine with it. Nobody
had a problem with it.
I never saw a maternal fetalmedicine specialist other than
the IBD. This is hilarious. Thisis something that comes up.
You're healthy other than theIBD, like, that's what they say,
(14:55):
right? But meaning no diabetes,no hypertension. No
cardiovascular disease, nothinglike that.
I saw probably every OB/GYN inthe practice while I was
pregnant, so they were allfamiliar with me. Um, they
talked about me when I wasn'tthere, which I thought was
awesome, because they, I don'tknow that they had any patients
(15:18):
like me. There was an extraultrasound here and there,
especially in the beginning, butthat was it.
You know, there was nothing elsethat we needed, that we needed
to do that was in 2007 and 2010.1990 still seems like 10 years
ago to me. So I might, you know,my perception is a little off.
(15:39):
But Jamie, I know for you, youhad your daughter. Your daughter
is a preschooler, so what didthey say to you when you were
pregnant?
Jaime Holland (15:49):
It was really interesting. I mean, being
diagnosed in my early 20s, butalso basically having this
disease since early childhood,I'm a unicorn because I've never
had surgery, and knock on wood,we can continue that trend.
But my comorbidities with havingCrohn's disease for so long that
(16:10):
went untreated, aside fromhaving some little tiny helpers
to try and quell theinflammation from time to time,
it was it was iffy, so I hadsome doctors who were like, yes,
go for it, and I had somedoctors who said, No, don't. But
once I hit the remission phasein 2016 a lot more green lights
(16:31):
started going up. So when myhusband and I were seriously
considering my doctor said,let's wait until your next
colonoscopy. Let's take a lookaround, and we'll discuss after
that.
And we did, and she's like, Idon't see any reason why you
should not consider if you guyswant to. So we took that step
(16:51):
and we waited and we waited, andsomething happened between 2020
and 2021 that kind of put theworld on its side, and nothing
was happening for us, and we'reI'm pretty sure that I had a
very, very early miscarriage,and I was actually at a medical
conference with you when thathappened, and I just said, Well,
(17:14):
I guess I'll call the specialistin January. This was december
2019 and so January of 2020, I'msitting there going, do we try
again? I'm like, I'm gonna waitanother month and I'm gonna call
the specialist.
And then there was some likethings in the news saying that
hospitals are filling up withsome sick people. I could not
(17:35):
see a specialist to have myselfor my husband checked out for
almost another six months. Sojust before my birthday, went in
and did all the fertilitytesting, because my GI symptoms
were great. I felt great, butsomething was not working, and
we discovered that most likely,and nobody can say this 100% for
(17:57):
sure, because bodies arestrange. Look like inflammation
had invaded my uterus, and so weneeded to fix that. And we did.
And eight weeks later, stuffaligned and from there, it was
very interesting, because theyhad said, from the very
beginning, once I get handed offfrom the fertility specialist to
(18:19):
the OB team, I would need to seea maternal fetal specialist.
They wanted me to my primaryphysician who has been with me
since 2012 she wanted me to,ironically, the OB team I first
started with did not and thatmade me very uncomfortable,
especially, I think, working inthe advocacy space, and knowing
(18:39):
what I know, I felt very uneasywith this team, and I fired
them.
Amber Tresca (18:43):
Yeah, yeah.
Jaime Holland (18:44):
And thankfully, my doctor got me in with the
high risk team at the localuniversity center, and they also
had their own MFM. So literally,I had two sets of highly trained
specialists for delivery aspectsand for just monitoring of my
health comorbidities. And I wasgeriatric pregnancy at 39 and so
(19:08):
they were also watching forthat. It wasn't just the IBDS,
so I did develop somecomplications, like
preeclampsia, but they werewatching it in the second that
they felt she's cooked, she'sready to come out. And they were
uneasy.
It just it moves smooth, sosmoothly, despite there being
some weird stuff going on inhospitals during that era, in
(19:31):
2020, and 2021, Lucky overall.And I'm very grateful to science
and medicine for being wherewe're at right now.
Amber Tresca (19:40):
Yeah, and your little preschooler. She's so
amazing. She is. She's the childof my heart. She's so into
Nightmare Before Christmas. Andmy daughter was at that age,
Jaime Holland (19:53):
Yeah, Nightmare Before Christmas and frozen. And
then the character isintermingling, and it's very.
Interesting to see her moving,playing out.
Amber Tresca (20:01):
Yes, yeah.
Up next, how we think about theidea that we might pass on IBD
to our children.
Jaime Holland (20:23):
So this, I think it brings us into like, a really
good question for the nexttopic, especially since I have a
toddler, how do you manage thefeelings of guilt when fatigue
gets in the way, especiallybeing mother, and I know some
people are like, I'm theprimary, you know, parent, but
(20:44):
our kids really do default tomom a lot of the time. And being
a mom with a chronic illness ishard.
Amber Tresca (20:50):
Yeah, you know it is. And it's like, I don't, I
mean, I don't know what it'slike to not be so I don't know
how to compare and contrastthat. And I try not to to do
that because, I don't know,brings out some big feelings of
me, but, but, yeah, the fatigueis real.
I remember in the beginninggoing to my OB GYN, and like,
(21:12):
being like, you have to test mythyroid, like, over and over.
And she was like, Amber, you'rea mother. You're gonna be tired.
Nothing's wrong with you. Youknow, moving along because I was
looking for somethingactionable. I was looking for
something to do.
I will say that the fatigue,it's a big topic. I think there
(21:33):
are ways to deal with it, butit's, it's, it's not always an
easy solution. It'smultifactorial. You can get your
team on board and talk to themand see what they have to say,
so you could try to deal withit, you know, get get your, you
know, vitamin levels tested andstuff like that.
But if you're like me, and theytest all that stuff, and you're
not anemic, well, you know,you're just, you're just tired,
(21:56):
you're just fatigued. And I'msaying tired, I know it's not
like being tired is completelydifferent than that. But if, if
there is something and you cansolve it, solve it, if you can
get somebody to help you withthis, and, you know, try to put
some things in place, and theymight be lifestyle changes, more
than medication or supplements,to be perfectly honest, like
putting down the phone an hourbefore a bedtime, look, that
(22:19):
shit ain't gonna happen in myhouse.
So anyway, um, you know, andthen also make sure that you're
not at the beginning of a flare.If you're really tired.
I plan, I plan fatigue into myday. It's there. It's always
going to be there. It could takeme longer to do certain things.
It also might mean that if Iwant to do fun things with the
kids on the weekend becausethey're out of school and they
(22:39):
don't have activities orwhatever. I may have to
prioritize Friday's a rest day,Monday's a rest day, that type
of thing.
And it's not fair. I don't liketo compare. I see other parents
that are like, go, go, go, allthe time and doing all of this
stuff. I try not to compare,because I know I'm the right mom
for my kids, and I know that I'mdoing the best that I can. So
let me just put that, put thatout there.
(23:01):
All right, so I'm working onreframing Jaime. It's something
that I think you really have tofocus on. If you're not used to
it. There are some people itjust comes really naturally. It
does not come naturally to me.
So when the fatigue hits,something that I try to reframe
(23:21):
is that I think of it, we're nothaving a time out. We're having
a time in. You're working allweek, you need the weekend to
rest. Look at that as okay. I'mresting, but I can also
reconnect with my kids and someof the things that I've done,
and every family is going to bedifferent as I try to make that
time special.
My kids are not allowed in mybedroom, okay, but on a weekend,
special time come and notanymore. They're teenagers now,
(23:44):
right? But when they werelittle, you know, come into
mom's bed. We'll watch a movietogether, that type of thing.
Also, you're not allowed to eatin the living room. We eat
dinner at the table as a family.I know I sound like such an
authoritarian parent. I'm reallynot. I just have some rules. But
you know, maybe when I'mfatigued, we have a picnic in
the living room, and it's like,easy, you know, something like
(24:07):
chicken nuggets or whatever. Andfor them amazing, they love that
kind of thing. So it's justlike, that's what made sense for
my family.
And as my kids got older, thisis another thing that gets a
little, I think controversial isthat I've taught my kids how to
take on household chores.
Jaime Holland (24:24):
I love that.
Amber Tresca (24:26):
So it's a little tricky, but at every stage, they
can do something, even littlekids can put away their own
toys. School age kids can cleantheir room, change their sheets.
My teenagers know how to cook.They know how to do their own
laundry, they can do otherlaundry. My son, who's 17, is
out running errands for us rightnow, as we speak, I've taught
(24:48):
him how to do that. It just it'swhat makes sense for your
family.
And it sounds a little weird topass off household chores to a
kid, but do it our job asparents is to help them learn to
live without us anyway. Soyou're doing them, you're doing
yourself a favor, and you'realso doing them a favor by
teaching them these things, allright?
(25:09):
And then the last part of itwould be the guilt, and I'm not
maybe the best to help anybodywith this, but here's what I'm
gonna say, just let it go. Yougotta let it go. I know I'm
always working towards being thebest mom that I can be. I know
that in my heart and I providemy kids with everything that I
can.
I've enjoyed every age, everystage, even when they're doing
(25:35):
crappy things, which was notthat often, really, my kids have
been amazing. I have let go ofthe guilt because I'm the right
mom for them.
And sometimes I take a day tomyself. Yeah, I do, and then I
hand off the parenting tosomeone else. And I have a
supportive spouse, and I haveamazing friends who have also
(25:57):
taken my kids for a day here andthere. And you know, that has
made, that has made all thedifference. So, I mean, that's
how I handle it.
How do you think about thesethings, Jamie, how do you think
about the about the guilt?
Jaime Holland (26:08):
Yeah, it's it's interesting, because at the
height of my sickness, beforehitting remission, I was taking
care of my cousin's kids, andthey were four and six years
old, and they were very, veryactive and very emotional, and
so full of everything, and thatreally, thankfully gave me a
foundation now for as mydaughter has been growing and
(26:33):
going through her her phasesfrom infant to not infant, not
toddler.
But somewhere in between, andnow full toddler mode, and the
guilt is definitely there whenI'm tired, but I think, because
she has grown up with me havingthis fatigue, it's a different
kind of guilt, because with thelittles 10 years ago, they Yes,
(26:58):
only knew me as having acondition that makes me tired
and also sometimes I have to bein the bathroom. I internalized
that guilt, you know, for notbeing able to maybe take them
out and go for a walk around theblock, just in case I needed to
be closer to home. Or, you know,I'm getting hangry because I'm
letting them eat, but I'm noteating with them until we get
(27:19):
home, kind of thing, because Iwas always worried about, okay,
I can't take them both into thebathroom with me, because they
don't want to be in the bathroomwith me if I need to.
So I was always game planninglike that. But it's totally
different when it's a smallerhuman, because they're so
portable and you can bring theminto the bathroom with you. But
(27:39):
going back to that fatigue part.She loves to Lounge, which is
great, and she also we've madeplaystations in each of the
rooms, so she has toys in eachof the rooms, and we try to keep
those toys in those rooms andmaybe swap them out so it feels
fresh in that room.
But we always have stuff tooccupy her, and even though I
(28:01):
know they're like, don't doscreen time, screen time has
been what has helped hercommunicate the most with us and
learn language. So we monitorit, and so sometimes maybe we'll
all be on screens at the sametime, but from time to time,
either me or my husband willlook at what she's watching and
interact and ask questions. Sowe're still trying to make it
educational. Yet one of us isresting that kind of thing.
(28:23):
And even in the bathroom, if I'min there, I have little
playstations. Or I'm like, goahead, climb into the bathtub.
The water is not on, but yourtoys are there. You can still
play with them. Do you want toget bubbles and play in the
shower while mommy's in here?Let's do that so I try to make
it fun for her and not boringwhen I need to be boring sick,
Mommy.
Amber Tresca (28:46):
But I think that they don't think of it as
boring, sick.
Jaime Holland (28:48):
No, it's internalized, yeah, guilt, yeah,
it's internalized. I thinkthat's it.
Amber Tresca (28:53):
That's important, yeah, remember, all right,
Jamie, I think, I think there'swe have one last question. It's
a doozy.
Jaime Holland (28:58):
It is, it is, are you ready?
Amber Tresca (29:01):
I'm ready.
Jaime Holland (29:02):
All right. Okay. So our third question is, before
you got pregnant, Did you worryyou would transfer IBD to your
kids?
Amber Tresca (29:11):
Nope. Is that such a weird you know? I mean, it's
so it's so funny, because it'sjust like just being in a
different era, diagnosed in adifferent era, probably just,
frankly, a result of having lessinformation at the time. And I'm
(29:31):
so big on information andeducation, so it's really weird
for me to say it, but I knewignorance maybe was a little bit
of bliss.
So yeah, no, um, I didn't worryabout that before I got
pregnant. When I was diagnosed,we didn't know a lot about the
genetics. There are other peoplein my extended family who live
with an IBD. It just it doesn'tmake sense. It's not like
(29:55):
something that's handed downfrom parent to child. It's not
that linear. That was alwaysknown.
Now we know more about genetics,but also we have to understand
that it is not just thegenetics, it is the genetics,
and then it is an environmentaltrigger, probably more than one
at a time, and then and thingslike a dysbiosis in your
(30:20):
microbiome, in the in thefriendly, helpful bugs that live
in your gut. So it's a lot ofthings going on there before IBD
develops.
Okay, so we, we now know if oneparent has IBD. Yes, children
have an increased risk, but itis low. How do I say this? The
(30:41):
chances are higher that yourkids are not going to get IBD...
Jaime Holland (30:45):
Yes.
Amber Tresca (30:45):
...then there is a chance that they are going to
get IBD, right? I hesitate togive numbers, because studies
give different numbers on thesethings, but I feel confident in
saying that it is very low.Okay, so now, if you have two
parents with IBD, the risk doesgo up, but still, your kids are
more likely to not have IBD thanthey are to have it.
(31:10):
Okay. It does cross my mind,though, okay, you know the kids
they you know toddlers. They getthat toddler diarrhea,
especially when they're addingnew foods to their diet, or
they're all like drinking toomuch juice, school, norovirus,
whatever. You know, they getdiarrhea.
Jaime Holland (31:27):
Yeah.
Amber Tresca (31:27):
I mean, I'm not freaking out, but I'm also
making sure that something thatthings are getting better. And
this is another thing that I usefor myself and also for my
family. I will give it 24 to 48hours. If it is not improving,
then we need to take action,okay, but if it is improving,
(31:50):
then I'm not going to I'm notgoing to worry about it, and
we're just going to moveforward, and I'm not taking them
to the pediatrician or anythinglike that.
Now, if you do feel verystressed about it, absolutely,
have conversations, tell thepediatrician, so that when you
call them, they understand whatyour concerns are, you know, so
on and so forth. But that hasn'tbeen my experience. I just try
(32:13):
not to worry about it too much.There's very little that's under
my control.
As far as that's concerned, oneof the things that I do, and
somebody might fact check me andnot like that, I say this, but I
keep my kids away fromantibiotics as much as I
possibly can. I try to make surethat they are eating a whole
food diet as much as I can. Butthese things are not completely
(32:36):
under my control, so I also hadto let it go.
One of the kids got bronchitis,yeah, had to do the antibiotics.
You had to do it. What are yougoing to do? Super sick for
three days. Gotta give them theantibiotics. But I'm very
careful to try to monitor thosethings and keep them low.
And then, you know, I let themeat dirt when they were when
they were little. They a lottrying to build that microbiome,
(33:00):
because it is between zero andthree that it is developed.
Jaime Holland (33:03):
Yeah.
Amber Tresca (33:03):
So you want to make sure that you're giving
them the best, the best chanceat that, and then if I had to do
it over again, I would probablyget a dog, and I can put some
research in the notes so thatpeople can look into that for
them. Yeah. That came outrecently. We've always had cats.
(33:23):
But Jamie, how about you was,was this a big concern because
you were pregnant so many yearsafter?
Jaime Holland (33:36):
Really, no, but I think also, because I working in
advocacy in this space. For thelast 10 years, I was privy to so
much data presentation thanks toa few studies on motherhood that
were available to us, that I wasarmed with good information that
put that at ease for me.
(33:56):
But even back when I wasdiagnosed, when I was 23 it's
still it was never a passable,down type of concern for me.
That was not one of those thingsthat I thought, oh for sure. You
know, breast cancer runs in myfamily, so braca. I thought I
was going to have that. Ithought that was going to be the
thing I needed to worry about. Idon't have it. I did the genetic
(34:17):
testing, yeah, but that was myconcern about passing down to a
future child, really, even afterthe Crohn's diagnosis, and I
really My diagnosis wasconfirmation. It was always
thought, but confirmed finally.
So you know, when familyplanning time came and we did
the genetic testing, I'm like,there's still no way to show if
(34:37):
you could pass anything relatedto our disease down to the
child. We're not at that pointyet in the genetic testing prior
to getting pregnant, but we weregood. We got the green light. We
were called boring as well. Wewere what they loved to see on
the reports, and we did thegenetic profiling. I thankfully
did not have to even think aboutdoing an amnio when I was
(34:58):
pregnant.
So. Um, just because they'reable to do a smattering of blood
work now, and we were good thereas well. So realistically, we
met her current pediatricianwhen she was only a few hours
old. So she's been with ourdaughter since day one, and she
knows my profile. She knows thatif I see mucus in the stool,
(35:22):
like, I'll send her a littlemessage and be like, hey, so
this is going on. I'm notworried, but I'm just putting
this on your radar to go intothe chart that this was, you
know, what I saw, or there wasone day where I saw something,
and I'm like, Oh, that's notgreat.
And then I'm backtracking, andshe had blueberries and guys
foods that are heavy and darkcolors are going to come out in
(35:46):
ways that will scare us when youhave Crohn's ulcerative colitis
or anything in our spectrum ofIV D. So yeah, there are those
moments, and I always try tolead with no, it's not before I
jump to Yes, it is. So that'simportant.
And now she's a toddler, andshe's speaking, and she's
(36:07):
learning body parts, and herfavorite thing to say it is, my
tummy hurts, and my husband andI look at each other every
single time she does her like,does it really? And then she
goes back to doing what she'sdoing. We know it's not, because
if it really was, she would bein tears. And so those are the
things that we have to keep fora friend in our minds before
(36:28):
panic can set in. And I'mfollowing the same thing with
the antibiotics. If it's notnecessary, let's try to kick it
before we go that route.
Because look as a kid. If youasked me what my favorite flavor
was of something, I would saybubble gum or orange. And if
you're from, if you grew up inthe 70s or 80s, I'm pretty sure
(36:50):
you know what the bubble gum orthe orange flavor antibiotics
were.
Amber Tresca (36:54):
Yeah.
Jaime Holland (36:54):
So yeah, that should not be a favorite flavor
profile for a kid. Ever, ever.Maybe an ice cream, but not in
an antibiotics. So, yeah.
Amber Tresca (37:06):
I mean, I think I was also really fortunate, like
my kids didn't go through, theydidn't have, like, a lot of ear
infections or anything likethat. So it was just, I don't
know, maybe it's just kind ofworked out in my favor. There's
been times when I have filledthe antibiotics, yep, and not
given, given it to them. Yes,I'm the worst. I'm the worst.
Jaime Holland (37:23):
Your kids too. And you know, when it's needed,
yes and that, that I think isthe most important role. And my
doctor's done that for me too.She's called it in, and she's
like, use if necessary. Ibecause we being my primary
since 2012 she always tries tomake sure that if she's giving
me antibiotics. It'sintentional, and we know that
(37:44):
there could be some added risksand some things that we need to
mitigate after introducing anantibiotic into my lovely,
lovely fun system, as she likesto call it. So yeah.
Amber Tresca (37:55):
I've had way too many antibiotics in my lifetime.
Uh, yeah. So anyway, I will, andwhy are we talking about
antibiotics? I will put someresearch in the show notes. Oh,
I'm not supposed to be hosting.Jamie's supposed to be there.
(38:15):
It's mid end.
Jamie, thank you so much forstepping in, for hosting, for
agreeing to do this with me. Ireally appreciate your
perspective. Thank you so muchfor sharing all of that. And I
think I just, I think I justtook the reins back from you,
tell the folks, tell the folkswhere they can find you across
social media.
Jaime Holland (38:35):
So with current things going on in social media,
I'm still on Facebook. I'm stillon Instagram, at pretty rotten
guts, and if I do open up anysocial media on any of the new
burgeoning systems, I will trymy best to also be there with
pretty rotten guts, right?
Amber Tresca (38:51):
Yeah, I'm still everywhere all the time. Okay,
thank you so so much, and I hopethis was helpful for everyone to
hear two moms just talking aboutIBD and how we are not worried
about passing it on to our kids.All right, Jamie, thanks so
(39:11):
much.
Jaime Holland (39:12):
Thank you for trusting me.
Amber Tresca (39:18):
Hey, super listener
Thanks to Jamie Holland, ofPretty Rotten Guts, for making
the time to create this episodewith me on a week when her
family was dealing with loss.
And I think at the end of theday, this is the thing that
defines parenthood with IBD themost. Life doesn't slow down or
take a break while we're in thebathroom, and we have to find a
(39:38):
way to roll with what comes andbe at peace with our decisions.
As always, links to a writtentranscript, everyone's social
media handles and moreinformation on the topics we
discussed is in the show notesand on my episode 167 page on
aboutIBD.com
Thanks for listening andremember, until next time, I
(40:01):
want you to know more about IBD.
About IBD is a production of Maland Tal enterprises.
It is edited, written, producedand directed by me, Amber
Tresca.
Mix and sound design is by MacCooney.
Theme music is from CooneyStudio.
I'm Amber Tresca, and this is about IB D. I'm a
medical writer and patienteducator who lives with a J
pouch due to ulcerative colitis.It's my mission to educate
people living with Crohn'sdisease or ulcerative colitis
about their disease and to bringawareness to the patient
journey.
Welcome to Episode 167.
I welcome my friend JamieHolland back to the show. Jamie
(00:26):
is a writer, journalist andpatient advocate. She also lives
with Crohn's disease and severalother conditions. Jamie's going
to take over hosting duties andask me some questions for this
episode, though, I admit thatI'm a really poor guest, and I
default back into hosting modeas soon as I'm given a chance.
We explore the complexities ofparenthood while managing
(00:46):
chronic illness.
Some of the topics that we touchon include how I made the
decision to have J pouchsurgery, the impact that IBD can
have on the management ofpregnancy, and the feelings of
guilt that come up when thefatigue from IBD sets in.
Hearing from both of us ishelpful, because Jamie and I
have different diagnoses, and weeach had our own path to
(01:07):
parenthood. Jamie and I alsodiscussed the concern many
parents have about passing on achronic illness to their
children. We each give aperspective on how we navigate
these worries, and it's not whatyou might expect.
Jamie, welcome back to aboutIBD.
Jaime Holland (01:28):
Hi, thanks for having me.
Amber Tresca (01:30):
Oh, it's my pleasure. I wonder first, Jamie,
if you could briefly introduceyourself, absolutely.
Jaime Holland (01:38):
Hi everyone. My name is Jamie Holland, and on
social media, you can find me atpretty rotten guts. I'm a
Crohn's patient. I also havepsoriasis and psoriatic
arthritis and a host of otherfun medical conditions that come
along with having the IBDS.
Amber Tresca (01:56):
Yeah, they're, they're all a good time, aren't
they, and you're kind of likecollecting them all like you're,
you know,
Jaime Holland (02:02):
They're my little Pokemon.
Amber Tresca (02:05):
All right, Jamie, I first want to set up the
premise for this episode becauseI asked the community at large
for some questions that I couldanswer from my perspective. So
for once, making an episode,maybe a little bit more about me
than it normally is, and somereally great questions came
(02:26):
through that I would be soexcited to answer. And Jamie, I
know that you have been dying tobe the one asking me the
questions yourself as ajournalist, so I asked you to
host and feed me the questionsthat I could answer. So I'm just
going to hand it over to you andlet you be the host of about
IBD,
Jaime Holland (02:47):
Cue evil laughter. Let's dive right in.
Yeah, all right. So for ourfirst question, this one I've
always wondered about. Questioncame in about the decision to
have J pouch surgery. The readeris wondering about your journey
with that.
Amber Tresca (03:07):
Jaime, why did you you always wanted to ask this of
me, or of anybody?
Jaime Holland (03:11):
When I meet people with a J pouch and that
they have kids, I always want toknow, like, what their journey
was, and especially you know youand I have had our kids almost
two decades apart. So thingshave changed so much in that
time.
Amber Tresca (03:25):
Yeah, it's Yeah. It was very different, because
you have to remember that I hadJ pouch surgery in 1999 so the
surgery was being used for quitea while, but still, there was a
lot that was unknown.
So the reason why I had j-pouchsurgery is that in my last
(03:48):
colonoscopy, they founddysplasia. So that means that
there was pre cancerous changes.And that makes sense because I
had about 10 years of prettyactive disease. You'd have to
understand that between 1989 and1999 there were not any advanced
therapies, and by that I meanthings like biologics.
(04:10):
Okay, so I had a couple ofchoices at my disposal. One of
them you cannot use for the longterm, even though I was on and
off it a lot. The other oneworked for a while, and then
didn't work quite as well. So itwas a lot of inflammation over a
(04:30):
period of 10 years.
Now, after 10 years, maybearound eight with ulcerative
colitis, that your risk of coloncancer increases, starts to
increase, and it's because ofthat inflammation. So that's
what happened there. My gastrosaid, Yep, you know, there's
some dysplasia in there. There'spolyps everywhere. I think they
(04:53):
were not they called them pseudopolyps, I think, or inflammatory
polyps, not real ones, but therewere so many there, they were.
Not. They couldn't go in and,like, tell the difference, you
know. So it was a mess.
My colon was falling apart. Andhad to come out. I don't
remember ever talking about, doyou want an ileostomy or do you
want a J pouch? And I had threeconsults. So I went to three
(05:16):
different surgeons and got threedifferent answers. And the
surgeon I went with, he did thesurgery in two steps. That's
what he laid out for me, and itresonated with me at the time.
So I had an ileostomy betweensteps one and two.
The first step was colectomy, Jpouch creation, placement of
(05:36):
ileostomy. Second step isreversal of the ileostomy, and
then you're using a J pouch andgoing to the bathroom out of
your bottom again. So I don'tthink any of my consults ever
wanted to place an ileostomy onme. I don't think that was ever
really put forth as a choice,and I don't think I ever
seriously considered it.
We also didn't know a lot then,and not that it would have
(06:00):
changed my decision at all, butwe did not know what long term
effects would be. I was 26 I wasnot yet married. That shouldn't
make a difference, but maybe itdid with the surgeons that I was
talking to, about how it wouldaffect your future, and as far
(06:22):
as not just fertility, but alsopregnancy. So we didn't know a
lot, my surgeon told meeverything that he could.
And by the way, I did somethingthat I would tell people not to
do, but I did it anyway when Iwhen I saw the surgeon that I
decided to go with. It soundsvery weird, picking a surgeon,
(06:44):
but I did. I picked a surgeon,but it was, it was absolutely
the right choice, even though,when I asked him how many J
pouch surgeries he had done, itwas six. But he trained under Dr
Fazio, and I won't say a lotmore about him, but he was
(07:04):
absolutely the right choice. Wasan absolute rock star just so
happened to be living in thesame town that I lived in, so
kind of got, I don't like sayinglucky. I don't like that word
luck, but yeah, no, that's kindof what happened.
And when I had the ileostomy, myileostomy was perfect, and it
(07:26):
was perfect, beautiful littlestoma. It went really well, so
much so that when I went backfor my reversal, I remember
being prepped for surgery andlooking at now my husband, then
fiance, and saying, Why am Ihaving more surgery? I'm doing
great. But of course, I mean,they already made the J pouch.
(07:46):
It's kind of stupid to not goforward with it. And the
reversal was easy. That was aneasy surgery. So yeah, that's
what happened.
So it there wasn't a lot ofthings that went into my
decision making process otherthan the J-pouch surgery was
available to me, everyonethought I was a good candidate
(08:07):
for it, and at no point did anysurgical consult or even my
gastroenterology team suggestthat I stop at an ileostomy.
Jaime Holland (08:17):
Okay, so, yeah, that's fantastic, the fact that
Amber Tresca (08:18):
So I would say it was it was urgent, but it was
you know you were able to makethe decision to a choose your
surgeon, and that this wasn't anemergency situation, because
not an emergency, right? So timefrom last colonoscopy to surgery
there's so many of our peers whounfortunately don't get to have
those options before them,because sometimes things have
progressed too far, too quickly.
(08:49):
was less, was a couple ofmonths, so we did move it along
pretty quickly, but yeah, but itwasn't an emergency.
Jaime Holland (08:55):
That's great. When you were going through this
process with interviewing yoursurgeons, was the topic of
fertility ever brought up whenthe J pouch was first discussed?
Amber Tresca (09:07):
Yeah, it was only one of the surgical consults,
and that was the one that I wentwith who brought it up, and I
had talked about fertility, notnecessarily fertility, okay?
Because with the J pouch, whatyou're concerned about, mostly
is fertility with IBD ingeneral.
What I was concerned about whenI was younger was not so much
(09:29):
fertility, but pregnancy andbeing able to carry to term. And
I had asked various my variousgastroenterologists over the
years about that. And as amatter of fact, I wrote, This is
what I wrote my college entranceessay on, believe it or not, I
interviewed like my healthcareteam about IBD and about
(09:52):
different things. And fertilitywas definitely and pregnancy was
definitely one of the thingsthat we talked about.
And at that time, mygastroenterologist gave me his
opinion on what, how he wouldmanage my care. Should I want to
become pregnant, which, ofcourse, is completely different.
Now would be completely what hesaid then would not be what we
would do now.
(10:13):
So anyway, so in 1999 we didn'treally know a lot about how
fertility, what fertility wouldlook like for me after J pouch
surgery, what my surgeon did sayis that it's possible that
there's going to be scarring.And he said scarring is really
the main issue here, because Jpouch surgery is so deep in your
pelvis, and so what they'reconcerned about is that your
(10:35):
fallopian tubes could get couldhave scarring on them.
So it is not that you can't getpregnant. It is that the eggs
cannot get to the uterus. Sothat's, that's the issue, you
know, the train can shut downthere as long as, as long as the
egg could get to the uterus, youknow, unless there's something
else going on, everything shouldbe fine. And so that's what he
(10:57):
told me, that's what we talkedabout.
He did something. I don't knowwhat it was. He did some stuff
while he was working on me totry to preserve my fertility. At
the time, I was kind of worriedabout, like, living. I mean, I
was concerned about fertility,but I was concerned more about
just making it through this and,yeah, just basically, like, I
(11:22):
don't know what I'll say, like,like, living and not having
cancer, you know.
So what he did worked. When Iwent through fertility testing,
everything was fine. Myfallopian tubes was, you know,
great highways. So, yeah, whathappens with the scarring
doesn't happen to everyone,right, you know. And now I know
(11:44):
that some people are advisedmaybe stop at ileostomy, have
your babies and then go on andget a J pouch if you want to.
That was also never somethingthat was on the table. We never
talked about that.
I don't know that people thoughtthat way. It was just never
brought up or posed to me, maybeperhaps because I was not
(12:06):
married at the time, althoughthe date was set. But, yeah,
that was we never went throughthat. And now that's something
that I think is a topic ofdiscussion. I didn't have a lot
of I mean, choices wereavailable, of course, but we
didn't really think of them inthe same way.
So people having these surgeriestoday will have a lot more
(12:27):
decisions to make. For me, itwas kind of like, okay, this is
what we're going to do next, youknow. And it wasn't like you
could do this or you could dothat, you know. It was kind of
like, this is the naturalprogression, and that was the
way that it was, it was posed.But in any case, I have two
kids, which I think you alreadymentioned, Jamie, I do have two
kids. They're 14 and 17 now. Andyou know, everything, everything
(12:49):
went well from that perspective.
Jaime Holland (12:52):
Check, well done.
All right, so let's dive intothe second question. Are you
ready? Okay, were you considereda high risk pregnancy due to
having IBD or the fact that youhad abdominal surgeries leading
up to your J pouch.
Amber Tresca (13:08):
No, I was not, I think, what they were looking
for, and I was well cared for. Idon't want anyone to get the
impression that, like there wasanybody who dropped a ball here.
I was 34 and 37 when I had mykids, when you are that age,
that does enter into the pictureand they want to do things, and
(13:28):
I will tell you that there werecertain tests that they wanted
to do on me, especially when Iwas 37 that I refused because,
like an amniocentesis, I thinkmost people know what that is,
because there was nothing thatthey were going to tell me that
would change my mind aboutcarrying to term.
(13:49):
Okay, so here's my thing. Withtesting, if you're going to do a
test, is it going to give you aresult that's actionable in some
way. That's my question. Okay,so, and this is, like the base
what I go back to for myself andfor my kids, you know, right or
wrong is just my philosophy andhow I do things.
So they want to do anamniocentesis. What are you
going to tell me from that? Butwhat would our decision making
(14:11):
process be for that? And giventhat we did go to genetic
counseling, then the geneticcounselor called us boring.
Which is great, yeah, called usboring, and, you know, sent us
on our way. And the fact that Ididn't have any reason to
believe that anything would becoming up for these, for the
(14:34):
tests that they wanted to do,they carry those tests carry
risks, so I refuse them, and myteam was fine with it. Nobody
had a problem with it.
I never saw a maternal fetalmedicine specialist other than
the IBD. This is hilarious. Thisis something that comes up.
You're healthy other than theIBD, like, that's what they say,
(14:55):
right? But meaning no diabetes,no hypertension. No
cardiovascular disease, nothinglike that.
I saw probably every OB/GYN inthe practice while I was
pregnant, so they were allfamiliar with me. Um, they
talked about me when I wasn'tthere, which I thought was
awesome, because they, I don'tknow that they had any patients
(15:18):
like me. There was an extraultrasound here and there,
especially in the beginning, butthat was it.
You know, there was nothing elsethat we needed, that we needed
to do that was in 2007 and 2010.1990 still seems like 10 years
ago to me. So I might, you know,my perception is a little off.
(15:39):
But Jamie, I know for you, youhad your daughter. Your daughter
is a preschooler, so what didthey say to you when you were
pregnant?
Jaime Holland (15:49):
It was really interesting. I mean, being
diagnosed in my early 20s, butalso basically having this
disease since early childhood,I'm a unicorn because I've never
had surgery, and knock on wood,we can continue that trend.
But my comorbidities with havingCrohn's disease for so long that
(16:10):
went untreated, aside fromhaving some little tiny helpers
to try and quell theinflammation from time to time,
it was it was iffy, so I hadsome doctors who were like, yes,
go for it, and I had somedoctors who said, No, don't. But
once I hit the remission phasein 2016 a lot more green lights
(16:31):
started going up. So when myhusband and I were seriously
considering my doctor said,let's wait until your next
colonoscopy. Let's take a lookaround, and we'll discuss after
that.
And we did, and she's like, Idon't see any reason why you
should not consider if you guyswant to. So we took that step
(16:51):
and we waited and we waited, andsomething happened between 2020
and 2021 that kind of put theworld on its side, and nothing
was happening for us, and we'reI'm pretty sure that I had a
very, very early miscarriage,and I was actually at a medical
conference with you when thathappened, and I just said, Well,
(17:14):
I guess I'll call the specialistin January. This was december
2019 and so January of 2020, I'msitting there going, do we try
again? I'm like, I'm gonna waitanother month and I'm gonna call
the specialist.
And then there was some likethings in the news saying that
hospitals are filling up withsome sick people. I could not
(17:35):
see a specialist to have myselfor my husband checked out for
almost another six months. Sojust before my birthday, went in
and did all the fertilitytesting, because my GI symptoms
were great. I felt great, butsomething was not working, and
we discovered that most likely,and nobody can say this 100% for
(17:57):
sure, because bodies arestrange. Look like inflammation
had invaded my uterus, and so weneeded to fix that. And we did.
And eight weeks later, stuffaligned and from there, it was
very interesting, because theyhad said, from the very
beginning, once I get handed offfrom the fertility specialist to
(18:19):
the OB team, I would need to seea maternal fetal specialist.
They wanted me to my primaryphysician who has been with me
since 2012 she wanted me to,ironically, the OB team I first
started with did not and thatmade me very uncomfortable,
especially, I think, working inthe advocacy space, and knowing
(18:39):
what I know, I felt very uneasywith this team, and I fired
them.
Amber Tresca (18:43):
Yeah, yeah.
Jaime Holland (18:44):
And thankfully, my doctor got me in with the
high risk team at the localuniversity center, and they also
had their own MFM. So literally,I had two sets of highly trained
specialists for delivery aspectsand for just monitoring of my
health comorbidities. And I wasgeriatric pregnancy at 39 and so
(19:08):
they were also watching forthat. It wasn't just the IBDS,
so I did develop somecomplications, like
preeclampsia, but they werewatching it in the second that
they felt she's cooked, she'sready to come out. And they were
uneasy.
It just it moves smooth, sosmoothly, despite there being
some weird stuff going on inhospitals during that era, in
(19:31):
2020, and 2021, Lucky overall.And I'm very grateful to science
and medicine for being wherewe're at right now.
Amber Tresca (19:40):
Yeah, and your little preschooler. She's so
amazing. She is. She's the childof my heart. She's so into
Nightmare Before Christmas. Andmy daughter was at that age,
Jaime Holland (19:53):
Yeah, Nightmare Before Christmas and frozen. And
then the character isintermingling, and it's very.
Interesting to see her moving,playing out.
Amber Tresca (20:01):
Yes, yeah.
Up next, how we think about theidea that we might pass on IBD
to our children.
Jaime Holland (20:23):
So this, I think it brings us into like, a really
good question for the nexttopic, especially since I have a
toddler, how do you manage thefeelings of guilt when fatigue
gets in the way, especiallybeing mother, and I know some
people are like, I'm theprimary, you know, parent, but
(20:44):
our kids really do default tomom a lot of the time. And being
a mom with a chronic illness ishard.
Amber Tresca (20:50):
Yeah, you know it is. And it's like, I don't, I
mean, I don't know what it'slike to not be so I don't know
how to compare and contrastthat. And I try not to to do
that because, I don't know,brings out some big feelings of
me, but, but, yeah, the fatigueis real.
I remember in the beginninggoing to my OB GYN, and like,
(21:12):
being like, you have to test mythyroid, like, over and over.
And she was like, Amber, you'rea mother. You're gonna be tired.
Nothing's wrong with you. Youknow, moving along because I was
looking for somethingactionable. I was looking for
something to do.
I will say that the fatigue,it's a big topic. I think there
(21:33):
are ways to deal with it, butit's, it's, it's not always an
easy solution. It'smultifactorial. You can get your
team on board and talk to themand see what they have to say,
so you could try to deal withit, you know, get get your, you
know, vitamin levels tested andstuff like that.
But if you're like me, and theytest all that stuff, and you're
not anemic, well, you know,you're just, you're just tired,
(21:56):
you're just fatigued. And I'msaying tired, I know it's not
like being tired is completelydifferent than that. But if, if
there is something and you cansolve it, solve it, if you can
get somebody to help you withthis, and, you know, try to put
some things in place, and theymight be lifestyle changes, more
than medication or supplements,to be perfectly honest, like
putting down the phone an hourbefore a bedtime, look, that
(22:19):
shit ain't gonna happen in myhouse.
So anyway, um, you know, andthen also make sure that you're
not at the beginning of a flare.If you're really tired.
I plan, I plan fatigue into myday. It's there. It's always
going to be there. It could takeme longer to do certain things.
It also might mean that if Iwant to do fun things with the
kids on the weekend becausethey're out of school and they
(22:39):
don't have activities orwhatever. I may have to
prioritize Friday's a rest day,Monday's a rest day, that type
of thing.
And it's not fair. I don't liketo compare. I see other parents
that are like, go, go, go, allthe time and doing all of this
stuff. I try not to compare,because I know I'm the right mom
for my kids, and I know that I'mdoing the best that I can. So
let me just put that, put thatout there.
(23:01):
All right, so I'm working onreframing Jaime. It's something
that I think you really have tofocus on. If you're not used to
it. There are some people itjust comes really naturally. It
does not come naturally to me.
So when the fatigue hits,something that I try to reframe
(23:21):
is that I think of it, we're nothaving a time out. We're having
a time in. You're working allweek, you need the weekend to
rest. Look at that as okay. I'mresting, but I can also
reconnect with my kids and someof the things that I've done,
and every family is going to bedifferent as I try to make that
time special.
My kids are not allowed in mybedroom, okay, but on a weekend,
special time come and notanymore. They're teenagers now,
(23:44):
right? But when they werelittle, you know, come into
mom's bed. We'll watch a movietogether, that type of thing.
Also, you're not allowed to eatin the living room. We eat
dinner at the table as a family.I know I sound like such an
authoritarian parent. I'm reallynot. I just have some rules. But
you know, maybe when I'mfatigued, we have a picnic in
the living room, and it's like,easy, you know, something like
(24:07):
chicken nuggets or whatever. Andfor them amazing, they love that
kind of thing. So it's justlike, that's what made sense for
my family.
And as my kids got older, thisis another thing that gets a
little, I think controversial isthat I've taught my kids how to
take on household chores.
Jaime Holland (24:24):
I love that.
Amber Tresca (24:26):
So it's a little tricky, but at every stage, they
can do something, even littlekids can put away their own
toys. School age kids can cleantheir room, change their sheets.
My teenagers know how to cook.They know how to do their own
laundry, they can do otherlaundry. My son, who's 17, is
out running errands for us rightnow, as we speak, I've taught
(24:48):
him how to do that. It just it'swhat makes sense for your
family.
And it sounds a little weird topass off household chores to a
kid, but do it our job asparents is to help them learn to
live without us anyway. Soyou're doing them, you're doing
yourself a favor, and you'realso doing them a favor by
teaching them these things, allright?
(25:09):
And then the last part of itwould be the guilt, and I'm not
maybe the best to help anybodywith this, but here's what I'm
gonna say, just let it go. Yougotta let it go. I know I'm
always working towards being thebest mom that I can be. I know
that in my heart and I providemy kids with everything that I
can.
I've enjoyed every age, everystage, even when they're doing
(25:35):
crappy things, which was notthat often, really, my kids have
been amazing. I have let go ofthe guilt because I'm the right
mom for them.
And sometimes I take a day tomyself. Yeah, I do, and then I
hand off the parenting tosomeone else. And I have a
supportive spouse, and I haveamazing friends who have also
(25:57):
taken my kids for a day here andthere. And you know, that has
made, that has made all thedifference. So, I mean, that's
how I handle it.
How do you think about thesethings, Jamie, how do you think
about the about the guilt?
Jaime Holland (26:08):
Yeah, it's it's interesting, because at the
height of my sickness, beforehitting remission, I was taking
care of my cousin's kids, andthey were four and six years
old, and they were very, veryactive and very emotional, and
so full of everything, and thatreally, thankfully gave me a
foundation now for as mydaughter has been growing and
(26:33):
going through her her phasesfrom infant to not infant, not
toddler.
But somewhere in between, andnow full toddler mode, and the
guilt is definitely there whenI'm tired, but I think, because
she has grown up with me havingthis fatigue, it's a different
kind of guilt, because with thelittles 10 years ago, they Yes,
(26:58):
only knew me as having acondition that makes me tired
and also sometimes I have to bein the bathroom. I internalized
that guilt, you know, for notbeing able to maybe take them
out and go for a walk around theblock, just in case I needed to
be closer to home. Or, you know,I'm getting hangry because I'm
letting them eat, but I'm noteating with them until we get
(27:19):
home, kind of thing, because Iwas always worried about, okay,
I can't take them both into thebathroom with me, because they
don't want to be in the bathroomwith me if I need to.
So I was always game planninglike that. But it's totally
different when it's a smallerhuman, because they're so
portable and you can bring theminto the bathroom with you. But
(27:39):
going back to that fatigue part.She loves to Lounge, which is
great, and she also we've madeplaystations in each of the
rooms, so she has toys in eachof the rooms, and we try to keep
those toys in those rooms andmaybe swap them out so it feels
fresh in that room.
But we always have stuff tooccupy her, and even though I
(28:01):
know they're like, don't doscreen time, screen time has
been what has helped hercommunicate the most with us and
learn language. So we monitorit, and so sometimes maybe we'll
all be on screens at the sametime, but from time to time,
either me or my husband willlook at what she's watching and
interact and ask questions. Sowe're still trying to make it
educational. Yet one of us isresting that kind of thing.
(28:23):
And even in the bathroom, if I'min there, I have little
playstations. Or I'm like, goahead, climb into the bathtub.
The water is not on, but yourtoys are there. You can still
play with them. Do you want toget bubbles and play in the
shower while mommy's in here?Let's do that so I try to make
it fun for her and not boringwhen I need to be boring sick,
Mommy.
Amber Tresca (28:46):
But I think that they don't think of it as
boring, sick.
Jaime Holland (28:48):
No, it's internalized, yeah, guilt, yeah,
it's internalized. I thinkthat's it.
Amber Tresca (28:53):
That's important, yeah, remember, all right,
Jamie, I think, I think there'swe have one last question. It's
a doozy.
Jaime Holland (28:58):
It is, it is, are you ready?
Amber Tresca (29:01):
I'm ready.
Jaime Holland (29:02):
All right. Okay. So our third question is, before
you got pregnant, Did you worryyou would transfer IBD to your
kids?
Amber Tresca (29:11):
Nope. Is that such a weird you know? I mean, it's
so it's so funny, because it'sjust like just being in a
different era, diagnosed in adifferent era, probably just,
frankly, a result of having lessinformation at the time. And I'm
(29:31):
so big on information andeducation, so it's really weird
for me to say it, but I knewignorance maybe was a little bit
of bliss.
So yeah, no, um, I didn't worryabout that before I got
pregnant. When I was diagnosed,we didn't know a lot about the
genetics. There are other peoplein my extended family who live
with an IBD. It just it doesn'tmake sense. It's not like
(29:55):
something that's handed downfrom parent to child. It's not
that linear. That was alwaysknown.
Now we know more about genetics,but also we have to understand
that it is not just thegenetics, it is the genetics,
and then it is an environmentaltrigger, probably more than one
at a time, and then and thingslike a dysbiosis in your
(30:20):
microbiome, in the in thefriendly, helpful bugs that live
in your gut. So it's a lot ofthings going on there before IBD
develops.
Okay, so we, we now know if oneparent has IBD. Yes, children
have an increased risk, but itis low. How do I say this? The
(30:41):
chances are higher that yourkids are not going to get IBD...
Jaime Holland (30:45):
Yes.
Amber Tresca (30:45):
...then there is a chance that they are going to
get IBD, right? I hesitate togive numbers, because studies
give different numbers on thesethings, but I feel confident in
saying that it is very low.Okay, so now, if you have two
parents with IBD, the risk doesgo up, but still, your kids are
more likely to not have IBD thanthey are to have it.
(31:10):
Okay. It does cross my mind,though, okay, you know the kids
they you know toddlers. They getthat toddler diarrhea,
especially when they're addingnew foods to their diet, or
they're all like drinking toomuch juice, school, norovirus,
whatever. You know, they getdiarrhea.
Jaime Holland (31:27):
Yeah.
Amber Tresca (31:27):
I mean, I'm not freaking out, but I'm also
making sure that something thatthings are getting better. And
this is another thing that I usefor myself and also for my
family. I will give it 24 to 48hours. If it is not improving,
then we need to take action,okay, but if it is improving,
(31:50):
then I'm not going to I'm notgoing to worry about it, and
we're just going to moveforward, and I'm not taking them
to the pediatrician or anythinglike that.
Now, if you do feel verystressed about it, absolutely,
have conversations, tell thepediatrician, so that when you
call them, they understand whatyour concerns are, you know, so
on and so forth. But that hasn'tbeen my experience. I just try
(32:13):
not to worry about it too much.There's very little that's under
my control.
As far as that's concerned, oneof the things that I do, and
somebody might fact check me andnot like that, I say this, but I
keep my kids away fromantibiotics as much as I
possibly can. I try to make surethat they are eating a whole
food diet as much as I can. Butthese things are not completely
(32:36):
under my control, so I also hadto let it go.
One of the kids got bronchitis,yeah, had to do the antibiotics.
You had to do it. What are yougoing to do? Super sick for
three days. Gotta give them theantibiotics. But I'm very
careful to try to monitor thosethings and keep them low.
And then, you know, I let themeat dirt when they were when
they were little. They a lottrying to build that microbiome,
(33:00):
because it is between zero andthree that it is developed.
Jaime Holland (33:03):
Yeah.
Amber Tresca (33:03):
So you want to make sure that you're giving
them the best, the best chanceat that, and then if I had to do
it over again, I would probablyget a dog, and I can put some
research in the notes so thatpeople can look into that for
them. Yeah. That came outrecently. We've always had cats.
(33:23):
But Jamie, how about you was,was this a big concern because
you were pregnant so many yearsafter?
Jaime Holland (33:36):
Really, no, but I think also, because I working in
advocacy in this space. For thelast 10 years, I was privy to so
much data presentation thanks toa few studies on motherhood that
were available to us, that I wasarmed with good information that
put that at ease for me.
(33:56):
But even back when I wasdiagnosed, when I was 23 it's
still it was never a passable,down type of concern for me.
That was not one of those thingsthat I thought, oh for sure. You
know, breast cancer runs in myfamily, so braca. I thought I
was going to have that. Ithought that was going to be the
thing I needed to worry about. Idon't have it. I did the genetic
(34:17):
testing, yeah, but that was myconcern about passing down to a
future child, really, even afterthe Crohn's diagnosis, and I
really My diagnosis wasconfirmation. It was always
thought, but confirmed finally.
So you know, when familyplanning time came and we did
the genetic testing, I'm like,there's still no way to show if
(34:37):
you could pass anything relatedto our disease down to the
child. We're not at that pointyet in the genetic testing prior
to getting pregnant, but we weregood. We got the green light. We
were called boring as well. Wewere what they loved to see on
the reports, and we did thegenetic profiling. I thankfully
did not have to even think aboutdoing an amnio when I was
(34:58):
pregnant.
So. Um, just because they'reable to do a smattering of blood
work now, and we were good thereas well. So realistically, we
met her current pediatricianwhen she was only a few hours
old. So she's been with ourdaughter since day one, and she
knows my profile. She knows thatif I see mucus in the stool,
(35:22):
like, I'll send her a littlemessage and be like, hey, so
this is going on. I'm notworried, but I'm just putting
this on your radar to go intothe chart that this was, you
know, what I saw, or there wasone day where I saw something,
and I'm like, Oh, that's notgreat.
And then I'm backtracking, andshe had blueberries and guys
foods that are heavy and darkcolors are going to come out in
(35:46):
ways that will scare us when youhave Crohn's ulcerative colitis
or anything in our spectrum ofIV D. So yeah, there are those
moments, and I always try tolead with no, it's not before I
jump to Yes, it is. So that'simportant.
And now she's a toddler, andshe's speaking, and she's
(36:07):
learning body parts, and herfavorite thing to say it is, my
tummy hurts, and my husband andI look at each other every
single time she does her like,does it really? And then she
goes back to doing what she'sdoing. We know it's not, because
if it really was, she would bein tears. And so those are the
things that we have to keep fora friend in our minds before
(36:28):
panic can set in. And I'mfollowing the same thing with
the antibiotics. If it's notnecessary, let's try to kick it
before we go that route.
Because look as a kid. If youasked me what my favorite flavor
was of something, I would saybubble gum or orange. And if
you're from, if you grew up inthe 70s or 80s, I'm pretty sure
(36:50):
you know what the bubble gum orthe orange flavor antibiotics
were.
Amber Tresca (36:54):
Yeah.
Jaime Holland (36:54):
So yeah, that should not be a favorite flavor
profile for a kid. Ever, ever.Maybe an ice cream, but not in
an antibiotics. So, yeah.
Amber Tresca (37:06):
I mean, I think I was also really fortunate, like
my kids didn't go through, theydidn't have, like, a lot of ear
infections or anything likethat. So it was just, I don't
know, maybe it's just kind ofworked out in my favor. There's
been times when I have filledthe antibiotics, yep, and not
given, given it to them. Yes,I'm the worst. I'm the worst.
Jaime Holland (37:23):
Your kids too. And you know, when it's needed,
yes and that, that I think isthe most important role. And my
doctor's done that for me too.She's called it in, and she's
like, use if necessary. Ibecause we being my primary
since 2012 she always tries tomake sure that if she's giving
me antibiotics. It'sintentional, and we know that
(37:44):
there could be some added risksand some things that we need to
mitigate after introducing anantibiotic into my lovely,
lovely fun system, as she likesto call it. So yeah.
Amber Tresca (37:55):
I've had way too many antibiotics in my lifetime.
Uh, yeah. So anyway, I will, andwhy are we talking about
antibiotics? I will put someresearch in the show notes. Oh,
I'm not supposed to be hosting.Jamie's supposed to be there.
(38:15):
It's mid end.
Jamie, thank you so much forstepping in, for hosting, for
agreeing to do this with me. Ireally appreciate your
perspective. Thank you so muchfor sharing all of that. And I
think I just, I think I justtook the reins back from you,
tell the folks, tell the folkswhere they can find you across
social media.
Jaime Holland (38:35):
So with current things going on in social media,
I'm still on Facebook. I'm stillon Instagram, at pretty rotten
guts, and if I do open up anysocial media on any of the new
burgeoning systems, I will trymy best to also be there with
pretty rotten guts, right?
Amber Tresca (38:51):
Yeah, I'm still everywhere all the time. Okay,
thank you so so much, and I hopethis was helpful for everyone to
hear two moms just talking aboutIBD and how we are not worried
about passing it on to our kids.All right, Jamie, thanks so
(39:11):
much.
Jaime Holland (39:12):
Thank you for trusting me.
Amber Tresca (39:18):
Hey, super listener
Thanks to Jamie Holland, ofPretty Rotten Guts, for making
the time to create this episodewith me on a week when her
family was dealing with loss.
And I think at the end of theday, this is the thing that
defines parenthood with IBD themost. Life doesn't slow down or
take a break while we're in thebathroom, and we have to find a
(39:38):
way to roll with what comes andbe at peace with our decisions.
As always, links to a writtentranscript, everyone's social
media handles and moreinformation on the topics we
discussed is in the show notesand on my episode 167 page on
aboutIBD.com
Thanks for listening andremember, until next time, I
(40:01):
want you to know more about IBD.
About IBD is a production of Maland Tal enterprises.
It is edited, written, producedand directed by me, Amber
Tresca.
Mix and sound design is by MacCooney.
Theme music is from CooneyStudio.
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