How to Thrive as a Parent with IBD Featuring Jaime Holland

How to Thrive as a Parent with IBD – About IBD Podcast Episode 167

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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.

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Transcript

Amber Tresca 0:05
I’m Amber Tresca, and this is about IB D. I’m a medical writer and patient educator who lives with a J pouch due to ulcerative colitis. It’s my mission to educate people living with Crohn’s disease or ulcerative colitis about their disease and to bring awareness to the patient journey.

Amber Tresca 0:20
Welcome to Episode 167.

Amber Tresca 0:23
I welcome my friend Jamie Holland back to the show. Jamie is a writer, journalist and patient advocate. She also lives with Crohn’s disease and several other conditions. Jamie’s going to take over hosting duties and ask me some questions for this episode, though, I admit that I’m a really poor guest, and I default back into hosting mode as soon as I’m given a chance. We explore the complexities of parenthood while managing chronic illness.

Amber Tresca 0:47
Some of the topics that we touch on include how I made the decision to have J pouch surgery, the impact that IBD can have on the management of pregnancy, and the feelings of guilt that come up when the fatigue from IBD sets in.

Amber Tresca 1:00
Hearing from both of us is helpful, because Jamie and I have different diagnoses, and we each had our own path to parenthood. Jamie and I also discussed the concern many parents have about passing on a chronic illness to their children. We each give a perspective on how we navigate these worries, and it’s not what you might expect.

Amber Tresca 1:24
Jamie, welcome back to about IBD.

Jaime Holland 1:28
Hi, thanks for having me.

Amber Tresca 1:30
Oh, it’s my pleasure. I wonder first, Jamie, if you could briefly introduce yourself, absolutely.

Jaime Holland 1:38
Hi everyone. My name is Jamie Holland, and on social media, you can find me at pretty rotten guts. I’m a Crohn’s patient. I also have psoriasis and psoriatic arthritis and a host of other fun medical conditions that come along with having the IBDS.

Amber Tresca 1:56
Yeah, they’re, they’re all a good time, aren’t they, and you’re kind of like collecting them all like you’re, you know,

Jaime Holland 2:02
They’re my little Pokemon.

Amber Tresca 2:05
All right, Jamie, I first want to set up the premise for this episode because I asked the community at large for some questions that I could answer from my perspective. So for once, making an episode, maybe a little bit more about me than it normally is, and some really great questions came through that I would be so excited to answer. And Jamie, I know that you have been dying to be the one asking me the questions yourself as a journalist, so I asked you to host and feed me the questions that I could answer. So I’m just going to hand it over to you and let you be the host of about IBD,

Jaime Holland 2:47
Cue evil laughter. Let’s dive right in. Yeah, all right. So for our first question, this one I’ve always wondered about. Question came in about the decision to have J pouch surgery. The reader is wondering about your journey with that.

Amber Tresca 3:07
Jaime, why did you you always wanted to ask this of me, or of anybody?

Jaime Holland 3:11
When I meet people with a J pouch and that they have kids, I always want to know, like, what their journey was, and especially you know you and I have had our kids almost two decades apart. So things have changed so much in that time.

Amber Tresca 3:25
Yeah, it’s Yeah. It was very different, because you have to remember that I had J pouch surgery in 1999 so the surgery was being used for quite a while, but still, there was a lot that was unknown.

Amber Tresca 3:42
So the reason why I had j-pouch surgery is that in my last colonoscopy, they found dysplasia. So that means that there was pre cancerous changes. And that makes sense because I had about 10 years of pretty active disease. You’d have to understand that between 1989 and 1999 there were not any advanced therapies, and by that I mean things like biologics.

Amber Tresca 4:10
Okay, so I had a couple of choices at my disposal. One of them you cannot use for the long term, even though I was on and off it a lot. The other one worked for a while, and then didn’t work quite as well. So it was a lot of inflammation over a period of 10 years.

Amber Tresca 4:31
Now, after 10 years, maybe around eight with ulcerative colitis, that your risk of colon cancer increases, starts to increase, and it’s because of that inflammation. So that’s what happened there. My gastro said, Yep, you know, there’s some dysplasia in there. There’s polyps everywhere. I think they were not they called them pseudo polyps, I think, or inflammatory polyps, not real ones, but there were so many there, they were. Not. They couldn’t go in and, like, tell the difference, you know. So it was a mess.

Amber Tresca 5:06
My colon was falling apart. And had to come out. I don’t remember ever talking about, do you want an ileostomy or do you want a J pouch? And I had three consults. So I went to three different surgeons and got three different answers. And the surgeon I went with, he did the surgery in two steps. That’s what he laid out for me, and it resonated with me at the time. So I had an ileostomy between steps one and two.

Amber Tresca 5:31
The first step was colectomy, J pouch creation, placement of ileostomy. Second step is reversal of the ileostomy, and then you’re using a J pouch and going to the bathroom out of your bottom again. So I don’t think any of my consults ever wanted to place an ileostomy on me. I don’t think that was ever really put forth as a choice, and I don’t think I ever seriously considered it.

Amber Tresca 5:56
We also didn’t know a lot then, and not that it would have changed my decision at all, but we did not know what long term effects would be. I was 26 I was not yet married. That shouldn’t make a difference, but maybe it did with the surgeons that I was talking to, about how it would affect your future, and as far as not just fertility, but also pregnancy. So we didn’t know a lot, my surgeon told me everything that he could.

Amber Tresca 6:31
And by the way, I did something that I would tell people not to do, but I did it anyway when I when I saw the surgeon that I decided to go with. It sounds very weird, picking a surgeon, 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, it was six. But he trained under Dr Fazio, and I won’t say a lot more about him, but he was absolutely the right choice. Was an absolute rock star just so happened to be living in the same town that I lived in, so kind of got, I don’t like saying lucky. I don’t like that word luck, but yeah, no, that’s kind of what happened.

Amber Tresca 7:22
And when I had the ileostomy, my ileostomy was perfect, and it was perfect, beautiful little stoma. It went really well, so much so that when I went back for my reversal, I remember being prepped for surgery and looking at now my husband, then fiance, and saying, Why am I having more surgery? I’m doing great. But of course, I mean, they already made the J pouch. It’s kind of stupid to not go forward with it. And the reversal was easy. That was an easy surgery. So yeah, that’s what happened.

Amber Tresca 7:54
So it there wasn’t a lot of things that went into my decision making process other than the J-pouch surgery was available to me, everyone thought I was a good candidate for it, and at no point did any surgical consult or even my gastroenterology team suggest that I stop at an ileostomy.

Jaime Holland 8:17
Okay, so, yeah, that’s fantastic, the fact that you know you were able to make the decision to a choose your surgeon, and that this wasn’t an emergency situation, because there’s so many of our peers who unfortunately don’t get to have those options before them, because sometimes things have progressed too far, too quickly.

Amber Tresca 8:18
So I would say it was it was urgent, but it was not an emergency, right? So time from last colonoscopy to surgery was less, was a couple of months, so we did move it along pretty quickly, but yeah, but it wasn’t an emergency.

Jaime Holland 8:55
That’s great. When you were going through this process with interviewing your surgeons, was the topic of fertility ever brought up when the J pouch was first discussed?

Amber Tresca 9:07
Yeah, it was only one of the surgical consults, and that was the one that I went with who brought it up, and I had talked about fertility, not necessarily fertility, okay? Because with the J pouch, what you’re concerned about, mostly is fertility with IBD in general.

Amber Tresca 9:26
What I was concerned about when I was younger was not so much fertility, but pregnancy and being able to carry to term. And I had asked various my various gastroenterologists over the years about that. And as a matter of fact, I wrote, This is what I wrote my college entrance essay on, believe it or not, I interviewed like my healthcare team about IBD and about different things. And fertility was definitely and pregnancy was definitely one of the things that we talked about.

Amber Tresca 9:57
And at that time, my gastroenterologist gave me his opinion on what, how he would manage my care. Should I want to become pregnant, which, of course, is completely different. Now would be completely what he said then would not be what we would do now.

Amber Tresca 10:13
So anyway, so in 1999 we didn’t really know a lot about how fertility, what fertility would look like for me after J pouch surgery, what my surgeon did say is that it’s possible that there’s going to be scarring. And he said scarring is really the main issue here, because J pouch surgery is so deep in your pelvis, and so what they’re concerned about is that your fallopian tubes could get could have scarring on them.

Amber Tresca 10:38
So it is not that you can’t get pregnant. It is that the eggs cannot get to the uterus. So that’s, that’s the issue, you know, the train can shut down there as long as, as long as the egg could get to the uterus, you know, unless there’s something else going on, everything should be fine. And so that’s what he told me, that’s what we talked about.

Amber Tresca 10:59
He did something. I don’t know what it was. He did some stuff while he was working on me to try to preserve my fertility. At the time, I was kind of worried about, 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 don’t know what I’ll say, like, like, living and not having cancer, you know.

Amber Tresca 11:25
So what he did worked. When I went through fertility testing, everything was fine. My fallopian tubes was, you know, great highways. So, yeah, what happens with the scarring doesn’t happen to everyone, right, you know. And now I know that some people are advised maybe stop at ileostomy, have your babies and then go on and get a J pouch if you want to. That was also never something that was on the table. We never talked about that.

Amber Tresca 11:58
I don’t know that people thought that way. It was just never brought up or posed to me, maybe perhaps because I was not married at the time, although the date was set. But, yeah, that was we never went through that. And now that’s something that I think is a topic of discussion. I didn’t have a lot of I mean, choices were available, of course, but we didn’t really think of them in the same way.

Amber Tresca 12:24
So people having these surgeries today will have a lot more decisions to make. For me, it was kind of like, okay, this is what we’re going to do next, you know. And it wasn’t like you could do this or you could do that, you know. It was kind of like, this is the natural progression, and that was the way that it was, it was posed. But in any case, I have two kids, which I think you already mentioned, Jamie, I do have two kids. They’re 14 and 17 now. And you know, everything, everything went well from that perspective.

Jaime Holland 12:52
Check, well done.

Jaime Holland 12:55
All right, so let’s dive into the second question. Are you ready? Okay, were you considered a high risk pregnancy due to having IBD or the fact that you had 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. I don’t want anyone to get the impression that, like there was anybody who dropped a ball here. I was 34 and 37 when I had my kids, when you are that age, that does enter into the picture and they want to do things, and I will tell you that there were certain tests that they wanted to do on me, especially when I was 37 that I refused because, like an amniocentesis, I think most people know what that is, because there was nothing that they were going to tell me that would change my mind about carrying to term.

Amber Tresca 13:49
Okay, so here’s my thing. With testing, if you’re going to do a test, is it going to give you a result 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 and for my kids, you know, right or wrong is just my philosophy and how I do things.

Amber Tresca 14:06
So they want to do an amniocentesis. What are you going to tell me from that? But what would our decision making process be for that? And given that we did go to genetic counseling, then the genetic counselor called us boring. Which is great, yeah, called us boring, and, you know, sent us on our way. And the fact that I didn’t have any reason to believe that anything would be coming up for these, for the tests that they wanted to do, they carry those tests carry risks, so I refuse them, and my team was fine with it. Nobody had a problem with it.

Amber Tresca 14:45
I never saw a maternal fetal medicine specialist other than the IBD. This is hilarious. This is something that comes up. You’re healthy other than the IBD, like, that’s what they say, right? But meaning no diabetes, no hypertension. No cardiovascular disease, nothing like that.

Amber Tresca 15:03
I saw probably every OB/GYN in the practice while I was pregnant, so they were all familiar with me. Um, they talked about me when I wasn’t there, which I thought was awesome, because they, I don’t know that they had any patients like me. There was an extra ultrasound here and there, especially in the beginning, but that was it.

Amber Tresca 15:24
You know, there was nothing else that 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. But Jamie, I know for you, you had your daughter. Your daughter is a preschooler, so what did they say to you when you were pregnant?

Jaime Holland 15:49
It was really interesting. I mean, being diagnosed in my early 20s, but also 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.

Jaime Holland 16:05
But my comorbidities with having Crohn’s disease for so long that went untreated, aside from having some little tiny helpers to try and quell the inflammation from time to time, it was it was iffy, so I had some doctors who were like, yes, go for it, and I had some doctors who said, No, don’t. But once I hit the remission phase in 2016 a lot more green lights started going up. So when my husband and I were seriously considering my doctor said, let’s wait until your next colonoscopy. Let’s take a look around, and we’ll discuss after that.

Jaime Holland 16:41
And we did, and she’s like, I don’t see any reason why you should not consider if you guys want to. So we took that step and we waited and we waited, and something happened between 2020 and 2021 that kind of put the world on its side, and nothing was happening for us, and we’re I’m pretty sure that I had a very, very early miscarriage, and I was actually at a medical conference with you when that happened, and I just said, Well, I guess I’ll call the specialist in January. This was december 2019 and so January of 2020, I’m sitting there going, do we try again? I’m like, I’m gonna wait another month and I’m gonna call the specialist.

Jaime Holland 17:27
And then there was some like things in the news saying that hospitals are filling up with some sick people. I could not see a specialist to have myself or my husband checked out for almost another six months. So just before my birthday, went in and did all the fertility testing, because my GI symptoms were great. I felt great, but something was not working, and we discovered that most likely, and nobody can say this 100% for sure, because bodies are strange. Look like inflammation had invaded my uterus, and so we needed to fix that. And we did.

Jaime Holland 18:06
And eight weeks later, stuff aligned and from there, it was very interesting, because they had said, from the very beginning, once I get handed off from the fertility specialist to the OB team, I would need to see a maternal fetal specialist. They wanted me to my primary physician who has been with me since 2012 she wanted me to, ironically, the OB team I first started with did not and that made me very uncomfortable, especially, I think, working in the advocacy space, and knowing what I know, I felt very uneasy with 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 local university center, and they also had their own MFM. So literally, I had two sets of highly trained specialists for delivery aspects and for just monitoring of my health comorbidities. And I was geriatric pregnancy at 39 and so they were also watching for that. It wasn’t just the IBDS, so I did develop some complications, like preeclampsia, but they were watching it in the second that they felt she’s cooked, she’s ready to come out. And they were uneasy.

Jaime Holland 19:23
It just it moves smooth, so smoothly, despite there being some weird stuff going on in hospitals during that era, in 2020, and 2021, Lucky overall. And I’m very grateful to science and medicine for being where we’re at right now.

Amber Tresca 19:40
Yeah, and your little preschooler. She’s so amazing. She is. She’s the child of my heart. She’s so into Nightmare Before Christmas. And my daughter was at that age,

Jaime Holland 19:53
Yeah, Nightmare Before Christmas and frozen. And then the character is intermingling, and it’s very. Interesting to see her moving, playing out.

Amber Tresca 20:01
Yes, yeah.

Amber Tresca 20:08
Up next, how we think about the idea 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 next topic, especially since I have a toddler, how do you manage the feelings of guilt when fatigue gets in the way, especially being mother, and I know some people are like, I’m the primary, you know, parent, but our kids really do default to mom a lot of the time. And being a mom with a chronic illness is hard.

Amber Tresca 20:50
Yeah, you know it is. And it’s like, I don’t, I mean, I don’t know what it’s like to not be so I don’t know how to compare and contrast that. And I try not to to do that because, I don’t know, brings out some big feelings of me, but, but, yeah, the fatigue is real.

Amber Tresca 21:08
I remember in the beginning going to my OB GYN, and like, being like, you have to test my thyroid, like, over and over. And she was like, Amber, you’re a mother. You’re gonna be tired. Nothing’s wrong with you. You know, moving along because I was looking for something actionable. I was looking for something to do.

Amber Tresca 21:27
I will say that the fatigue, it’s a big topic. I think there are ways to deal with it, but it’s, it’s, it’s not always an easy solution. It’s multifactorial. You can get your team on board and talk to them and see what they have to say, so you could try to deal with it, you know, get get your, you know, vitamin levels tested and stuff like that.

Amber Tresca 21:50
But if you’re like me, and they test all that stuff, and you’re not anemic, well, you know, you’re just, you’re just tired, you’re just fatigued. And I’m saying tired, I know it’s not like being tired is completely different than that. But if, if there is something and you can solve it, solve it, if you can get somebody to help you with this, and, you know, try to put some things in place, and they might be lifestyle changes, more than medication or supplements, to be perfectly honest, like putting down the phone an hour before a bedtime, look, that shit ain’t gonna happen in my house.

Amber Tresca 22:20
So anyway, um, you know, and then also make sure that you’re not at the beginning of a flare. If you’re really tired.

Amber Tresca 22:26
I plan, I plan fatigue into my day. It’s there. It’s always going to be there. It could take me longer to do certain things. It also might mean that if I want to do fun things with the kids on the weekend because they’re out of school and they don’t have activities or whatever. I may have to prioritize Friday’s a rest day, Monday’s a rest day, that type of thing.

Amber Tresca 22:46
And it’s not fair. I don’t like to compare. I see other parents that are like, go, go, go, all the 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’m doing the best that I can. So let me just put that, put that out there.

Amber Tresca 23:01
All right, so I’m working on reframing Jaime. It’s something that I think you really have to focus on. If you’re not used to it. There are some people it just comes really naturally. It does not come naturally to me.

Amber Tresca 23:18
So when the fatigue hits, something that I try to reframe is that I think of it, we’re not having a time out. We’re having a time in. You’re working all week, you need the weekend to rest. Look at that as okay. I’m resting, but I can also reconnect with my kids and some of the things that I’ve done, and every family is going to be different as I try to make that time special.

Amber Tresca 23:37
My kids are not allowed in my bedroom, okay, but on a weekend, special time come and not anymore. They’re teenagers now, right? But when they were little, you know, come into mom’s bed. We’ll watch a movie together, that type of thing.

Amber Tresca 23:49
Also, you’re not allowed to eat in the living room. We eat dinner at the table as a family. I know I sound like such an authoritarian parent. I’m really not. I just have some rules. But you know, maybe when I’m fatigued, we have a picnic in the living room, and it’s like, easy, you know, something like chicken nuggets or whatever. And for them amazing, they love that kind of thing. So it’s just like, that’s what made sense for my family.

Amber Tresca 24:15
And as my kids got older, this is another thing that gets a little, I think controversial is that 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 little kids can put away their own toys. School age kids can clean their room, change their sheets. My teenagers know how to cook. They know how to do their own laundry, they can do other laundry. My son, who’s 17, is out running errands for us right now, as we speak, I’ve taught him how to do that. It just it’s what makes sense for your family.

Amber Tresca 24:52
And it sounds a little weird to pass off household chores to a kid, but do it our job as parents is to help them learn to live without us anyway. So you’re doing them, you’re doing yourself a favor, and you’re also doing them a favor by teaching them these things, all right?

Amber Tresca 25:09
And then the last part of it would be the guilt, and I’m not maybe the best to help anybody with this, but here’s what I’m gonna say, just let it go. You gotta let it go. I know I’m always working towards being the best mom that I can be. I know that in my heart and I provide my kids with everything that I can.

Amber Tresca 25:29
I’ve enjoyed every age, every stage, even when they’re doing crappy things, which was not that often, really, my kids have been amazing. I have let go of the guilt because I’m the right mom for them.

Amber Tresca 25:47
And sometimes I take a day to myself. Yeah, I do, and then I hand off the parenting to someone else. And I have a supportive spouse, and I have amazing friends who have also taken my kids for a day here and there. And you know, that has made, that has made all the difference. So, I mean, that’s how I handle it.

Amber Tresca 26:04
How do you think about these things, 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, before hitting remission, I was taking care of my cousin’s kids, and they were four and six years old, and they were very, very active and very emotional, and so full of everything, and that really, thankfully gave me a foundation now for as my daughter has been growing and going through her her phases from infant to not infant, not toddler.

Jaime Holland 26:38
But somewhere in between, and now full toddler mode, and the guilt is definitely there when I’m tired, but I think, because she has grown up with me having this fatigue, it’s a different kind of guilt, because with the littles 10 years ago, they Yes, only knew me as having a condition that makes me tired and also sometimes I have to be in the bathroom. I internalized that guilt, you know, for not being able to maybe take them out and go for a walk around the block, 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 not eating with them until we get home, kind of thing, because I was always worried about, okay, I can’t take them both into the bathroom with me, because they don’t want to be in the bathroom with me if I need to.

Jaime Holland 27:28
So I was always game planning like that. But it’s totally different when it’s a smaller human, because they’re so portable and you can bring them into the bathroom with you. But going back to that fatigue part. She loves to Lounge, which is great, and she also we’ve made playstations in each of the rooms, so she has toys in each of the rooms, and we try to keep those toys in those rooms and maybe swap them out so it feels fresh in that room.

Jaime Holland 27:56
But we always have stuff to occupy her, and even though I know they’re like, don’t do screen time, screen time has been what has helped her communicate the most with us and learn language. So we monitor it, and so sometimes maybe we’ll all be on screens at the same time, but from time to time, either me or my husband will look at what she’s watching and interact and ask questions. So we’re still trying to make it educational. Yet one of us is resting that kind of thing.

Jaime Holland 28:23
And even in the bathroom, if I’m in there, I have little playstations. Or I’m like, go ahead, climb into the bathtub. The water is not on, but your toys are there. You can still play with them. Do you want to get 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 boring when 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 think that’s it.

Amber Tresca 28:53
That’s important, yeah, remember, all right, Jamie, I think, I think there’s we 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 worry you 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’s just like just being in a different era, diagnosed in a different era, probably just, frankly, a result of having less information at the time. And I’m so big on information and education, so it’s really weird for me to say it, but I knew ignorance maybe was a little bit of bliss.

Amber Tresca 29:39
So yeah, no, um, I didn’t worry about that before I got pregnant. When I was diagnosed, we didn’t know a lot about the genetics. There are other people in my extended family who live with an IBD. It just it doesn’t make sense. It’s not like something that’s handed down from parent to child. It’s not that linear. That was always known.

Amber Tresca 30:02
Now we know more about genetics, but also we have to understand that it is not just the genetics, it is the genetics, and then it is an environmental trigger, probably more than one at a time, and then and things like a dysbiosis in your microbiome, in the in the friendly, helpful bugs that live in your gut. So it’s a lot of things going on there before IBD develops.

Amber Tresca 30:29
Okay, so we, we now know if one parent has IBD. Yes, children have an increased risk, but it is low. How do I say this? The chances are higher that your kids 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 to give numbers, because studies give different numbers on these things, but I feel confident in saying that it is very low. Okay, so now, if you have two parents with IBD, the risk does go up, but still, your kids are more likely to not have IBD than they are to have it.

Amber Tresca 31:10
Okay. It does cross my mind, though, okay, you know the kids they you know toddlers. They get that toddler diarrhea, especially when they’re adding new foods to their diet, or they’re all like drinking too much juice, school, norovirus, whatever. You know, they get diarrhea.

Jaime Holland 31:27
Yeah.

Amber Tresca 31:27
I mean, I’m not freaking out, but I’m also making sure that something that things are getting better. And this is another thing that I use for myself and also for my family. I will give it 24 to 48 hours. If it is not improving, then we need to take action, okay, but if it is improving, then I’m not going to I’m not going to worry about it, and we’re just going to move forward, and I’m not taking them to the pediatrician or anything like that.

Amber Tresca 31:57
Now, if you do feel very stressed about it, absolutely, have conversations, tell the pediatrician, so that when you call them, they understand what your concerns are, you know, so on and so forth. But that hasn’t been my experience. I just try not to worry about it too much. There’s very little that’s under my control.

Amber Tresca 32:17
As far as that’s concerned, one of the things that I do, and somebody might fact check me and not like that, I say this, but I keep my kids away from antibiotics as much as I possibly can. I try to make sure that they are eating a whole food diet as much as I can. But these things are not completely under my control, so I also had to let it go.

Amber Tresca 32:39
One of the kids got bronchitis, yeah, had to do the antibiotics. You had to do it. What are you going to do? Super sick for three days. Gotta give them the antibiotics. But I’m very careful to try to monitor those things and keep them low.

Amber Tresca 32:53
And then, you know, I let them eat dirt when they were when they were little. They a lot trying to build that microbiome, because it is between zero and three 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 chance at that, and then if I had to do it over again, I would probably get a dog, and I can put some research in the notes so that people can look into that for them. Yeah. That came out recently. We’ve always had cats.

Amber Tresca 33:23
But Jamie, how about you was, was this a big concern because you were pregnant so many years after?

Jaime Holland 33:36
Really, no, but I think also, because I working in advocacy in this space. For the last 10 years, I was privy to so much data presentation thanks to a few studies on motherhood that were available to us, that I was armed with good information that put that at ease for me.

Jaime Holland 33:56
But even back when I was diagnosed, when I was 23 it’s still it was never a passable, down type of concern for me. That was not one of those things that I thought, oh for sure. You know, breast cancer runs in my family, so braca. I thought I was going to have that. I thought that was going to be the thing I needed to worry about. I don’t have it. I did the genetic testing, yeah, but that was my concern about passing down to a future child, really, even after the Crohn’s diagnosis, and I really My diagnosis was confirmation. It was always thought, but confirmed finally.

Jaime Holland 34:30
So you know, when family planning time came and we did the genetic testing, I’m like, there’s still no way to show if you could pass anything related to our disease down to the child. We’re not at that point yet in the genetic testing prior to getting pregnant, but we were good. We got the green light. We were called boring as well. We were what they loved to see on the reports, and we did the genetic profiling. I thankfully did not have to even think about doing an amnio when I was pregnant.

Jaime Holland 34:59
So. Um, just because they’re able to do a smattering of blood work now, and we were good there as well. So realistically, we met her current pediatrician when she was only a few hours old. So she’s been with our daughter since day one, and she knows my profile. She knows that if I see mucus in the stool, like, I’ll send her a little message and be like, hey, so this is going on. I’m not worried, but I’m just putting this on your radar to go into the chart that this was, you know, what I saw, or there was one day where I saw something, and I’m like, Oh, that’s not great.

Jaime Holland 35:37
And then I’m backtracking, and she had blueberries and guys foods that are heavy and dark colors are going to come out in ways that will scare us when you have Crohn’s ulcerative colitis or anything in our spectrum of IV D. So yeah, there are those moments, and I always try to lead with no, it’s not before I jump to Yes, it is. So that’s important.

Jaime Holland 36:03
And now she’s a toddler, and she’s speaking, and she’s learning body parts, and her favorite thing to say it is, my tummy hurts, and my husband and I look at each other every single time she does her like, does it really? And then she goes back to doing what she’s doing. We know it’s not, because if it really was, she would be in tears. And so those are the things that we have to keep for a friend in our minds before panic can set in. And I’m following the same thing with the antibiotics. If it’s not necessary, let’s try to kick it before we go that route.

Jaime Holland 36:38
Because look as a kid. If you asked me what my favorite flavor was of something, I would say bubble gum or orange. And if you’re from, if you grew up in the 70s or 80s, I’m pretty sure you know what the bubble gum or the 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, they didn’t have, like, a lot of ear infections or anything like that. So it was just, I don’t know, maybe it’s just kind of worked out in my favor. There’s been times when I have filled the 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 is the most important role. And my doctor’s done that for me too. She’s called it in, and she’s like, use if necessary. I because we being my primary since 2012 she always tries to make sure that if she’s giving me antibiotics. It’s intentional, and we know that there could be some added risks and some things that we need to mitigate after introducing an antibiotic into my lovely, lovely fun system, as she likes to call it. So yeah.

Amber Tresca 37:55
I’ve had way too many antibiotics in my lifetime. Uh, yeah. So anyway, I will, and why are we talking about antibiotics? I will put some research in the show notes. Oh, I’m not supposed to be hosting. Jamie’s supposed to be there. It’s mid end.

Amber Tresca 38:16
Jamie, thank you so much for stepping in, for hosting, for agreeing to do this with me. I really appreciate your perspective. Thank you so much for sharing all of that. And I think I just, I think I just took the reins back from you, tell the folks, tell the folks where 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 still on Instagram, at pretty rotten guts, and if I do open up any social media on any of the new burgeoning systems, I will try my 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 hope this was helpful for everyone to hear two moms just talking about IBD and how we are not worried about passing it on to our kids. All right, Jamie, thanks so much.

Jaime Holland 39:12
Thank you for trusting me.

Amber Tresca 39:18
Hey, super listener

Amber Tresca 39:19
Thanks to Jamie Holland, of Pretty Rotten Guts, for making the time to create this episode with me on a week when her family was dealing with loss.

Amber Tresca 39:28
And I think at the end of the day, this is the thing that defines parenthood with IBD the most. Life doesn’t slow down or take a break while we’re in the bathroom, and we have to find a way to roll with what comes and be at peace with our decisions.

Amber Tresca 39:44
As always, links to a written transcript, everyone’s social media handles and more information on the topics we discussed is in the show notes and on my episode 167 page on aboutIBD.com

Amber Tresca 39:58
Thanks for listening and remember, until next time, I want you to know more about IBD.

Amber Tresca 40:06
About IBD is a production of Mal and Tal enterprises.

Amber Tresca 40:10
It is edited, written, produced and directed by me, Amber Tresca.

Amber Tresca 40:14
Mix and sound design is by Mac Cooney.

Amber Tresca 40:17
Theme music is from Cooney Studio.

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