The Truth About Stigma and Acetaminophen Use During Pregnancy Featuring Mariah Leach, JD, MS - About IBD Podcast Episode 188

The Truth About Stigma and Acetaminophen Use During Pregnancy Featuring Mariah Leach, JD, MS

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Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.

This episode sponsored by Fathom Care! Fathom is an AI-powered wellness companion made for patients with inflammatory bowel disease. Over 2.4M people in the United States are navigating IBD alone and Fathom is here to change that. Learn more at: https://fathom.care.

Concepts discussed on this episode:

Find Mariah Leach, JD, MS at:

Find Amber J Tresca at:

Find Mac Cooney (mix, sound design, and theme music) at:

Topics:

  • Personal experiences of living with chronic illness, including medication management during pregnancy.
  • Recent FDA statements regarding acetaminophen use during pregnancy and its potential risks.
  • The societal pressures and stigma surrounding medication use for pregnant women with chronic illnesses.
  • The importance of maternal health and the need for nuanced guidance in managing chronic illness during pregnancy.
  • Challenges faced by women with chronic illnesses in navigating healthcare systems and specialist referrals.
  • The impact of societal expectations on mothers, particularly regarding their health and parenting choices.
  • Advocacy for better support systems for parents with chronic illnesses, including community resources and peer support.
  • The significance of current research and individualized care in making informed decisions about medication during pregnancy.
  • Personal anecdotes highlighting the balance between managing chronic illness and participating in family traditions and activities

Transcript

[Music: IBD Dance Party]

Amber Tresca 00:00:04  I’m Amber and this is About IBD. I was diagnosed with ulcerative colitis as a teen and had pouch surgery ten years later. Now I help people with Crohn’s disease and ulcerative colitis understand their disease and feel seen on About IBD. You’ll get real talk on symptoms, treatment, and life with IBD straight from patients, caregivers, and experts. You’ll learn, feel less alone, and even have a laugh along the way.

Mariah Leach is writer, patient advocate, and mom of three living with rheumatoid arthritis and Hashimoto’s thyroiditis. After learning firsthand how challenging and lonely it can be to face pregnancy and parenthood with chronic illness, Mariah became passionate about supporting people with chronic illness who are or want to become parents. She launched her private Facebook support group, Mama’s Facing Forward, in 2015. Today, the group connects parents and parents to be with chronic illness from all over the world. In 2018, she added Mamas Facing Forward, a website dedicated to collecting and creating resources that focus on pregnancy and parenting with chronic illness. Maria, welcome back to about IBD.

Mariah Leach 00:01:24  Thanks for having me. I’m happy to be here.

Amber Tresca 00:01:26  I’m really glad to have you back. I had to go and look up our last episode together over 100 episodes ago, episode 71. So we’re overdue. But we have a very good reason for convening today because our topic is medications during pregnancy. And the recent statements from the United States Food and Drug Administration. That and I’m going to quote here says the use of acetaminophen by pregnant women may be associated with an increased risk of neurological conditions such as autism and ADHD, in children. I will put a link to the letter in the show notes. this whole thing was very confusing to me because the letter goes on to water down that first statement by saying, and here’s another quote. A causal relationship has not been established, and clinicians should consider minimizing the use of acetaminophen during pregnancy for routine low-grade fevers. However, and this Maria was a real kick in the uterus for me because another quote says acetaminophen is the safest over-the-counter alternative in pregnancy among all analgesics and antipyretic.

Amber Tresca 00:02:55  Okay, so there’s a lot to unpack here. There’s a lot of concerns. You and I, you know, have, I think some of the same ones and maybe some different ones. first is that the research proving a link between acetaminophen and autism isn’t there. It’s just not. A second one is that fever is dangerous in a pregnancy. So we have a worry that women will be under-treated. And another concern amongst many is that women will suffer unnecessarily, physically and mentally, as they try to figure out what to do here. So we’re going to get to these things. We’re going to get to more. But, Mariah, I want to talk to you first about being a mom living with rheumatoid arthritis. Because you have three kids, you had to make some choices when it came to medications to treat the arthritis during your pregnancies. And so I wonder if you would take me through how you dealt with that and how they were different and what were the decisions that you and your doctors made in the moment.

Mariah Leach 00:04:03  Sure. Obviously, figuring out how to treat my RA during my pregnancy was a big portion of my path to parenthood, and I’ve had three kids and I’ve had an unmedicated pregnancy, a partially medicated pregnancy, and a fully medicated pregnancy. So I can sort of compare what the experience was like. My oldest just turned 13 this summer. And so, you know, 15 years ago or so, when I first started looking at the idea of becoming a parent, there just wasn’t a lot of pregnancy safety data out there for medication. So the advice that at the time which was valid was to, you know, on the side of safety for the baby. So for my first pregnancy, I was advised to go completely med free. And while some women with RA do go into remission while they’re pregnant, I didn’t. But it wasn’t so bad and I managed to muddle through with kind of moderate pain during my first pregnancy until my son was born. Unfortunately, since my RA was untreated a few weeks after he was born, I had a really terrible postpartum flare.

Mariah Leach 00:05:05  I clawed my way to three months of breastfeeding and then went back on medications for my second pregnancy. The data was a little bit better, but they were still more comfortable advising you to go med-free. Only this time my RA flared really terribly while I was pregnant. And so eventually we reached a point where the doctors thought that the uncontrolled inflammation in my body was more risky than the possible side effects of, or the possible impact of the medication. So in that case, I decided to go back on medication. You know, about two thirds of the way through my pregnancy, which was a pretty difficult decision to be making. You know, seven months pregnant, enormous hormonal, like, just worried. You know, I carried an enormous amount of guilt that I managed my first pregnancy without any meds. And here I was in my second pregnancy, needing to take something, and the general message I felt like society was giving me was that I was making a selfish choice to treat my own self while putting my baby at risk.

Mariah Leach 00:06:06  But in reality, it was also safer for him to be for me, for my RA to be treated, than it would be for him to be developing in a body just full of uncontrolled inflammation. So it was a safer option for me and for him. But that wasn’t really how it felt at the time. By the time my youngest is seven, and so by the time I was considering my third baby, the data had improved just really significantly. In fact, we I contributed data from my second pregnancy and my third pregnancy to observational pregnancy studies to help provide better choices for women when it comes to pregnancy treatment in the future. And so for my third baby, I met with a maternal fetal medicine specialist. We chose a pregnancy-safe biologic. I started taking it before trying to conceive and stayed on it through my whole pregnancy and afterwards, and it was by far my easiest pregnancy. My daughter had a very different entry into the world than her brothers did. Because I didn’t have a postpartum flare, I was able to breastfeed.

Mariah Leach 00:07:13  I was able to be there to take care of her. So I think it’s important to remember that, you know, there’s no guarantee of what your chronic illness is going to do during pregnancy, but the options of being able to treat it and to feel comfortable taking those medications during pregnancy can make a really big difference for both mom and baby.

Amber Tresca 00:07:33  100%, and we say the same thing in the IBD space. And I think biologics in particular end up being something that people worry about because it could be an infusion or it could be an injection. And for some reason, that seems like it’s more drug. It’s a more serious drug.

Mariah Leach 00:07:54  Doesn’t it? More serious than swallowing a pill.

Amber Tresca 00:07:56  It does. Which is. But actually it’s not. Maybe because we’re so used to oral drugs that we think of them automatically as safer. Easier, less likely to affect the baby. But biologics, actually they don’t. And then even while breastfeeding again, you know, the reason why you don’t swallow a biologic is because it won’t make it through your stomach.

Amber Tresca 00:08:22  It just won’t. So it’s not going to make it through baby’s stomach either.

Mariah Leach 00:08:26  The molecule is too large to get into the breast milk in most cases.

Amber Tresca 00:08:29  Right, right. My two pregnancies were not as starkly different as yours were, but I had my decision-making tested, you know, during my pregnancies as well. With one of them, I had a UTI, and trying to figure out what to do there. So I want to talk some more about this pressure that we face about having a completely unmedicated pregnancy. It’s very clear when you need medications to control the disease and to control the inflammation so that it is not taking over your body and putting your pregnancy at risk. But now, though, and you just talked about how with your pregnancies more, you learned more with every pregnancy and more science was known as you went through this process. And it’s the same in the IBD space. We have good data that most IBD medications aren’t associated with any harmful effects, but there’s still a lot of pressure from community, from outside sources, and then also sometimes from physicians that we should be stopping medications or we should be stopping them in the third trimester.

Amber Tresca 00:09:45  And I think that’s partially because, well, obviously lots of people aren’t up on the latest, you know, data. But then also sometimes even physicians aren’t up on the latest data. So I’m wondering what your thoughts are about how this puts women with chronic illness in in a really no win situation.

Mariah Leach 00:10:05  I think, you know, like you said, there’s so much pressure from society not to take any meds during pregnancy. And if you are a perfectly healthy person, then maybe the equation that you’re weighing is the risks of taking drugs versus the ideal, the quote unquote ideal of an unmedicated pregnancy. But in cases of women with chronic illness, you know, like RA or IBD, you know, the disease could easily flare during pregnancy without proper treatment. So that and that can present a risk for the mom and the baby. So really the equation is more like what you need to balance is the possible risks of taking medication while pregnancy versus the possible risks of the disease flaring during pregnancy. You know, there’s potential negatives on both sides of the equation.

Mariah Leach 00:10:54  And I think people society overlook the other side of that equation, that it can be problematic for baby if you don’t if you don’t take the medications during pregnancy. For example, I had hyperemesis during my pregnancies, so I was vomiting to the point that I was losing weight, which meant my babies also weren’t getting any of the nutrition that they needed to grow. And so I needed to take some medications to stop myself from vomiting so that I could be healthy, and so that my baby could be healthy. And like, that’s kind of a more obvious example of the negative, the negative side on the other side of the equation. But, you know, I think that part gets left out of people’s consideration. They just think ideal is no medication. And mom should be self-sacrificing in that way.

Amber Tresca 00:11:46  Right? And it can start. You know, it starts with acetaminophen and then who knows where it goes, because it just seemed to be a slippery slope that we’ve that we’ve started out on here because pregnant women are judged for everything, especially for what they eat and drink.

Amber Tresca 00:12:06  Judged for medications. It’s also really difficult in the first place just to get treatment for a chronic illness while you’re pregnant. And, I don’t know if you had this experience. Mariah. I kind of did. And I hear from women in the IBD space all the time that are having this happen, that you’re being passed around between providers because nobody wants the responsibility of, telling you to take a certain medication or stop a certain medication or whatever the decision is, because.

Mariah Leach 00:12:38  The rheumatologist will say, ask your OB, and the OB will say, ask your rheumatologist, and you’re left in the middle going, what am I supposed to do?

Amber Tresca 00:12:45  Right. And you’re left to not even having a shared decision making process.

Mariah Leach 00:12:53  Which is scary.

Amber Tresca 00:12:54  Yeah, and we don’t want to leave people like that. So, you know, I want to talk about this stigma and get your thoughts on this as well, about how this whole situation was telling pregnant women not to even take acetaminophen compounds, the social problems that are experienced when taking any kind of a medication while pregnant.

Mariah Leach 00:13:19  You know, statements from authority figures. You know, they highlighted the first part of that letter that you said, which was don’t take acetaminophen while pregnant. But they didn’t highlight the parts below that you quoted that were like, we’re still not sure about the connection, but just to be on the safe side, you know, that sort of thing, the nuance gets left out. You know, the message from the president was, quote, you know, tough it out. And I think encouraging pregnant women to tough it out is detrimental to all women, but particularly harmful for women who are also living with chronic illness. Because, like I said, we need to consider both sides of the equation. There are certainly situations where it is more detrimental for the baby if mom doesn’t take medication. And I think that if women are judged for, you know, taking a single Tylenol during their pregnancy, you know, as you said before, injecting something or getting an infusion feels like such a much bigger risk than just because of the delivery of it, you know? So even if it’s medically necessary, even if it’s better for baby, that judgment is going to be increased.

Mariah Leach 00:14:26  If women are told to tough it out. And in addition to the risks to the baby, you know, you could be putting the mother at risk of permanent damage to her body. you know, in the case of RA, if it is uncontrolled and the joints get damaged, that damage is permanent. And you know, I think we, we don’t really value mom’s health the way we should, because it’s also better for baby to have a healthy mom to take care of them once they’re born. So I think we really need to support women, and their doctors need to support them in like making a decision that they’re comfortable with, you know, based on the best science that’s available, that that is best for both the baby and for the mom.

Amber Tresca 00:15:10  Yeah. And a couple of things stand out to me, this idea of toughing it out. Mariah, do you have you ever known any pregnant women that have not toughed it out, like pregnancy?

Mariah Leach 00:15:22  You know, as if being pregnant just all by itself isn’t toughing it out like that is toughing it out.

Amber Tresca 00:15:28  You are absolutely toughing it out all the time through all sorts of things during pregnancy, during labor and delivery, during the fourth trimester, and then basically for the rest of your life, we’re toughing it out every single day.

Mariah Leach 00:15:40  You don’t have to tell us.

Amber Tresca 00:15:44  You don’t need to tell us to do that. And you also pointed out the lack of nuance in this letter from the FDA. And this is something that I, I want to pull out also a little bit here as well, because giving people this blanket do this or, you know, don’t do this. Like that’s not helpful. And I’m thinking, for instance, of caffeine during a pregnancy. Right. they recommend that you only take in a certain amount of caffeine because once you go over a certain threshold, there could be effects on the baby. Okay. So that’s pretty well established. And when you’re pregnant, your OB will talk to you about that. But they’re not telling you. You can’t have a couple sips of coffee or whatever.

Amber Tresca 00:16:34  You know what I mean? Like, that’s not the guidance. The guidance is so much of this particular thing is dangerous, so don’t go over this amount. Telling people not to take any acetaminophen at all versus telling them this is the threshold and maybe don’t go over this particular threshold like that is nuanced guidance and that has not been put forth at all. So I don’t think it’s an either. I don’t think giving people this either or makes any sense.

Mariah Leach 00:17:11  Well, and society isn’t providing that nuance either. I once, while I was visibly pregnant, ordered myself a coffee and had a barista go. And you want that to be decaf, right? Like, just like, here’s what you should be doing.

Mariah Leach 00:17:25  Yeah. It was like, no, I have a toddler. This is my one coffee. Let me have it. But like, there it was some random judgment. I, you know, I had a decision that I had dealt with my doctor and we had decided what was okay. And here’s some random person in society judging me for it.

Mariah Leach 00:17:42  So I think that the nuance is missing from sometime, you know, from the guidance and from the pressure that just everyone around you puts on you when you’re pregnant.

Amber Tresca 00:17:53  Yeah, yeah. And showing up to an infusion appointment while visibly pregnant, was that an experience that you had as well?

Mariah Leach 00:18:04  You know, I was on injections when I was pregnant, so I didn’t have to do that, but I could imagine that that would be challenging for sure.

Amber Tresca 00:18:11  I can’t imagine what that would feel like if you were not absolutely certain that everyone there at that facility was in agreement, that this was your decision, and it was what was best for you and your baby and your family. Like, there’s going to be people that are, you know, maybe going to say something to you and then.

Mariah Leach 00:18:35  That that could be hard to shake off. You know.

Amber Tresca 00:18:37  It is extremely hard to shake off. You know, besides the random bonkers things that people say to pregnant women all the time, you know? You know, anywhere from you don’t look pregnant to you look too pregnant to you.

Mariah Leach 00:18:54  Right?

Amber Tresca 00:18:55  I mean, somebody told me, well, from the back. You don’t look pregnant. Look. What does that even mean? I don’t even…the baby’s not in my butt. I don’t, you know. [Laughter]

[MUSIC: About IBD Transition]

Amber Tresca 00:19:09  This episode is sponsored by Fathom Care. Fathom is an AI powered wellness companion app designed for patients with IBD by patients with IBD. Fathom helps you track all the aspects of your life with IBD, including your diagnosis, the medications you take, what you’re eating, your symptoms, your mood, and more. What sets fathom apart from other health trackers is the AI companion the AI tailors to you, helping you record everything related to your health on a day to day basis. It identifies patterns in your health data, alerts you to them, then offers insights. This can help you design a healthier lifestyle that fits your needs and preferences. Fathom prompts you to check in a few times a day based on a schedule you set up, and creates a weekly overview. It also summarizes every chat so that you can get to the main points.

Amber Tresca 00:19:56  If you’re not sure how to get started with your check ins. Fathom has built in prompts to guide you. Prompts can help you uncover aspects of your disease journey that you may not have considered or fully explored yet. For example, I’ve been struggling with some joint pain. I work a lot, and sometimes I’m not good about taking breaks. Fathom suggested some gentle stretches for me to do during the day. Plus, it helped me structure my workday to take regular breaks. I told it that I have a J pouch, so it remembered that and took it into account, which is more than I can say about some of my doctors. Everyone deserves clarity about their personal health, journey, and meaningful support to navigate it successfully. To get the fathom iOS app or learn more, visit Fathom.care.

[MUSIC: About IBD Transition]

Amber Tresca:  Mariah, I also want to talk about how we have a history of blaming moms for everything that happens to their children. Before we got started, I was saying how that’s how sometimes I have that conversation with my kids, that I’m not saying that you can’t do a thing or that you’re not responsible enough to do a thing. But if something goes wrong, the blowback is going to come to me.

Amber Tresca 00:21:10  You know, blaming autism on moms just seems to be another flavor of all of this. And I did a little reading about how, and I knew about this previously, but I needed to refresh my memory about how they used to, call mothers of autistic children refrigerator mothers. This was something that was coined by Leo Kanner. He decided it in the 40s. He retracted later on in life, but the damage was already done because he was saying that, he was a psychiatrist, and he was saying that it was bad mothering or a cold mothering style that led to things like autism that got picked up by popular culture. And then we were off to the races with moms being blamed for everything. So I want to ask you, Maria, a question that I probably already know the answer to, but I’m going to ask you anyway.

Amber Tresca 00:22:08  And then when we think about this, we take this history into account. Do you think this whole thing is really about acetaminophen in the end?

Mariah Leach 00:22:17  I mean, I think, you know, the idea that good mothers should be self-sacrificing like we talked about before. It’s been around for thousands of years. Just last week, I was reading an opinion piece by Jessica Gross, who writes for The New York Times, and she had a really interesting piece about how it’s so much easier for society to shame mothers than it is to actually put in the work to build a system that supports them. And I picked up her book after reading this opinion piece, and her book is called Screaming on the Inside: The Unsustainability of American Motherhood. And if that’s not the perfect title, I don’t know what is. But, you know, the history of not supporting pregnant women is basically built into our society, and it’s even built in directly into our laws. in 1964, the Civil Rights Act technically forbade workplace discrimination on the basis of sex, except pregnancy was a glaring exception.

Mariah Leach 00:23:16  So did you know that until the 19th, in the 1960s and the early 1970s, it was still perfectly legal to fire a woman just for being pregnant? In fact, some people had that written into their employment contracts that they would let their employer know within four months if they were pregnant and they agreed to resign. That’s wild to me. It wasn’t until 1978 that the Pregnancy Discrimination Act amended the Civil Rights Act to prohibit discrimination on the basis of pregnancy. That’s not even that long ago. So we’re not coming from a place that was designed to be supportive of pregnant women. We’re coming from a place that was designed to be judgmental of pregnant women. And that’s really not the way we ought to be going. In my opinion.

Amber Tresca 00:24:04  Same. Agree. and then screaming on the inside…

Mariah Leach 00:24:10  Sometimes I’m going to be screaming on the outside because.

Amber Tresca 00:24:15  Yeah, I mean, well, because also when you are pregnant, you are supposed to society tells us you are you are supposed to be happy. You are supposed to be, I don’t know, serene. You’re supposed to be holding wild flowers like I don’t even know. Like, you know.

Mariah Leach 00:24:32  If you’re not doing that, the perception is that you’re failing at pregnancy, which is ridiculous because there are plenty of reasons that, as we discussed before, that pregnancy is challenging. And there can also be mental health issues associated with pregnancy itself, like it does a number on your body. And whatever is happening, happening to you during pregnancy is not of your doing or of your fault, but it is definitely judged that way, right?

Amber Tresca 00:25:00  And everyone’s experience with their pregnancy or pregnancies is different. And how you feel about it. It’s a very personal thing and you can dislike being pregnant, but love being a mom. I mean, there’s just there’s all sorts of of, there’s all sorts of nuance here. I guess that’s what we’re getting at is that there’s nuance, and that coming at things from this black and white situation doesn’t make any sense, because also that’s not how nature is, like just biology. You know, there are gradations to everything. Things don’t always go according to whatever plan you have in your. I mean, come on, how many of us wrote out birth plans?

Amber Tresca 00:25:46  I mean, you might as well have just written, you know, I don’t know, you might have just spent your time on literally anything else because the birth is not going to go the way that you want it to. It’s just not, you know.

Amber Tresca 00:25:58  Oh yeah, you can create your playlist. It doesn’t mean that it’s going to happen that day. So another thing that we have to address here is, just as you know, this is probably not about the acetaminophen. It’s probably not even really about autism. And I’m a little out of my depth here because I am, you know, not the mother of a neurodiverse child. So I am going to defer to that community when it comes to this. But autism is being framed in this context in a negative way, something that we should treat or we should try to prevent.

Amber Tresca 00:26:34  But I’m wondering, Mariah, if you have any thoughts about how we can take this idea that autism is something that we should be treating or we should be preventing and reframe it, and that we should talk about autism in a different way.

Mariah Leach 00:26:51  Yeah, I think we have, you know, having a child on the autism spectrum or with ADHD, it’s maybe it’s going to present some challenges as a parent. But you know what? Parenthood is absolutely riddled with challenges no matter how your kids brain works. You know, kids will find a way to make it challenging no matter what happens. And like you said, I think that in this context, autistic…autism is being framed as sort of a negative thing, but it’s not, by definition, negative. You know, neurodiversity is, I think, something to be celebrated. It, you know, brings unique perspectives into the world, sometimes enhanced creativity. You know, I think with any disability, whether. Whether it’s physical or whatever, society kind of attaches this negative stigma to disability. But in reality, disability isn’t something that necessarily needs to be fixed. It’s just part of human diversity, and it’s really something we should embrace and support in whatever format it it appears.

Amber Tresca 00:27:54  This is also having an effect on the autism community. I think also, this is another thing where this is for individual people and individual families to decide their relationship with neurodiversity. And I don’t think it’s something that needs to be legislated.

Mariah Leach 00:28:14  Agreed.

Multiple Speakers 00:28:14  Yeah.

Amber Tresca 00:28:15  One of the reasons why we’re talking today, and of course, in the work that you have done, Mariah, and some of the work that I have done is that we don’t want people to be alone in the pregnancy and motherhood journey. And that’s why you created Mamas Facing Forward. So there’s a few other trusted resources that I would love to send people for support and information in the IBD space. We have something called the IBD Parenthood Project, and that website has a lot of information. It has fact sheets, has discussion guides for all stages of parenthood and then also for pregnancy.

Amber Tresca 00:28:52  Mariah, this is definitely in your wheelhouse. So what other resources would you like to call out?

Mariah Leach 00:28:58  When it comes to the science behind making decisions about the possibility of using medications during pregnancy, my favorite resource is Mother to Baby. They have really up-to-date scientific data. That’s the organization that I joined the observational studies with during my pregnancy. So they’re constantly getting more data so that the recommendations they’re making are based on the most up-to-date data. And you can call them or you can chat with a territory expert. You know, someone who is an expert on pregnancy exposures, and they’ll answer any questions that you have. And another benefit of mother to baby is that you can then take that information to your physician or your specialist if you think they’re giving you recommendations based on outdated data. So that’s a really important research resource. There’s also lacked Med, which is a similar function, but for that focuses more on medication use during breastfeeding. And you know, you saw from my own experience over just a few years, you know, that pregnancy safety data, it changes quickly.

Mariah Leach 00:30:01  And so if you’re working with a rheumatologist who isn’t, you know, doesn’t have pregnant patients all the time, they may not, you know, or your specialist for IBD, like they may not be up to date on the most recent data. And so I had really different options between my first pregnancy and my third. And that was based on this data developing and changing. So you really want to go and do your own legwork and double-check the recent data to truly understand what your pregnancy-safe options are before you make decisions about it. And that also can sometimes mean that you need to educate your doctor. Another great thing to do if you have it as a resource is like I did before my third pregnancy is go and see a maternal fetal medicine specialist in MFM. They also specialize in medication exposures during pregnancy, and they also call those a a high-risk doctor, which can seem a little scary. It can make you feel like, oh, I’m not high risk or I don’t want to be high risk, but it just means that they are knowledgeable about pregnancies that are a little bit more complicated.

Mariah Leach 00:31:04  And if you are trying to control a chronic illness while you’re pregnant, it’s a little bit more complicated. So if you have the option to talk to one of them, that’s a fantastic resource as well. And then even if you do want to try going med free during pregnancy, and I totally understand the pressure and desire to do that. And like I said, there are some autoimmune conditions where women do experience remission during pregnancy and they do okay unmedicated. If you’re going to try that, I still recommend doing this research and having a treatment plan you would be comfortable with in place already so that you’re not seven months pregnant and flaring and miserable and going, oh God, what do I do? You just have something with your doctor ready to go should you need it. that would be my advice there.

Amber Tresca 00:31:55  Agree. And in IBD, it is important to be in remission or as close as you can get before entering into pregnancy. And the reasons for that being that they call it the rule of thirds.

Amber Tresca 00:32:12  So women with IBD who get pregnant, a third, whatever their disease is doing, it stays the same. Another third gets better and experiences that magical pregnancy-related remission, and then a third gets worse. So you don’t know where you’re going to fall before you get pregnant.

Mariah Leach 00:32:33  It’s about the same with with RA as well.

Amber Tresca 00:32:36  Good to know. So this advice is pretty much blanket because you want to make sure that you are doing as you know, within reason. Because again, biology is not black and white. Things happen. everybody can do what they’re supposed to do and things still happen. But planning a pregnancy is really the, you know, the best way to go if you can. And then also considering that gives you time also to consider your treatment choices if you want to change anything before attempting a pregnancy. Yeah. If you’re going to need to change something somewhere during the pregnancy, what if you get worse? What would be the plan then just to go through all of these things with your team? And I think also it’s a hard thing to discuss.

Amber Tresca 00:33:20  I’m not sure about the rheumatology space, but I know in the gastroenterology space the gastroenterologists might not feel that this is their purview. And they might not want to ask the question of a young woman or slightly older, as I was just before I had a recent upper GI was asked, should I take a, you know, do we need to give you a pregnancy test? And I was like, yeah, no you don’t. but anyway, they’re trained in gastroenterology. They’re not trained in pregnancy. They may not feel comfortable asking you if you’re planning a pregnancy. So it might even be up to you to say this is something that I’m thinking for my future, or this is something that I’m not thinking for my future, and we can plan accordingly. The idea is just to get the topic out so that you are addressing it. No matter what your final goal is, there.

Mariah Leach 00:34:22  Because there are some medications that you do need to stop taking.

Amber Tresca 00:34:27  Yes.

Mariah Leach 00:34:28  To be safe for pregnancy and for in the rheumatology space, methotrexate is one of them that if you’re taking that to help control your RA, that’s one you have to get off of before you get pregnant because it’s not safe. They use it for ectopic pregnancies. Like it’s definitely not safe. So there are definitely changes that you might need to make that aren’t safe.

Amber Tresca 00:34:49  Yes, methotrexate is also used in the IBD space. Not as commonly. And a lot of IBD meds, we have really good choices for use during pregnancy, and we have a lot of data now through the PIANO Registry, which along with all the other resources that we talked about, I will include in the show notes. And again, as you said, Mariah, the data changed. I mean, in a matter of years it changed.

Mariah Leach 00:35:15  Yeah. So and new treatments are coming out, but are. That can be more friendly. So the data is always changing. So it’s something that’s important to do your own research on.

Amber Tresca 00:35:24  Yes. Because if you’re if the person who is helping you manage your chronic illness has not recently engaged in, for instance, some continuing medical education regarding this new data, they might only know what they were taught in med school, which was however long ago. So yeah, I mean, I think the community, the I know from the IBD community is trying really hard to make sure that this information about medication used during pregnancy gets out. But I still hear from women every day that they’re being asked to discontinue medications that we have good safety data for. So it’s just really important to even be aware that there are medications that have been shown to be safe during pregnancy. It doesn’t have to be: There’s nothing that you can take. That’s not. That’s not accurate.

Mariah Leach 00:36:23  Yeah.

Amber Tresca 00:36:25  All right. Mariah I also want to make sure people can find you, can connect with you because you have a staggering amount of information available on Mamas Facing Forward. We met at the at the beginning of that journey for you with your with your website, and I was trying to remember how old your daughter was because I think she came with you to HealthEVoices.

Mariah Leach 00:36:47  She was like three months old at that conference. Yeah, just I brought her because I was still nursing her. And so she had to come along.

Amber Tresca 00:36:55  Yeah. Yeah, I thought that she was probably still an infant. But I wasn’t, but I wasn’t positive, but, yeah, we were so excited to see a baby at a conference.

It was great.  So let the people know where you can be found around the interwebs.

Mariah Leach 00:37:14  Sure. Well, you know what that was the conference where I launched my website, Mamas Facing Forward, which is where I try to collect the resources that exist, like mother to baby things that would be useful for someone considering pregnancy or parenting with a chronic illness. And I try to get them and put them all in one spot so you can find them all. And then I look at what the gaps are, and we work on developing resources to fill those gaps, because I think there are some really unique challenges that you face as a pregnant person or a parent who’s living with a chronic illness, and most regular pregnancy or parenting websites just aren’t addressing those.

Mariah Leach 00:37:50  So that’s what we try to do with Mamas Facing Forward. We also have a private Facebook group, which is pretty amazing. I created this group and then also benefited from it because, you know, during my pregnancies and as a mom, now I can go to the group if I’ve got an issue that my mom friends without chronic illness don’t know how to help me with. And it’s this wonderful hive mind of, you know, a treasure trove of advice from moms and dads. You know, mostly moms, but parents who have been there before and know what to do about it. Like I always remember, someone once came to the group really upset that she couldn’t figure out how to put her daughter’s hair in a ponytail because she had arthritis and there were problems with her hands, and she was feeling judged about her daughter’s hair. And at the time, I didn’t have a daughter, so I didn’t have any solutions to offer her. But the group chimed in with, you know, products and techniques and like YouTube videos and like really helped her figure out how to, you know, seemed like a small parenting issue.

Mariah Leach 00:38:48  But it was, you know, impacting her self-esteem as a parent. And the hive mind came together to help. And so I think that’s kind of the magic of being connected to other parents who are also living with chronic illness.

Amber Tresca 00:38:59  Right. That peer-to-peer situation is super helpful to get that advice. And yeah, there’s I’ve seen lots of examples, in the Mamas Facing Forward Facebook group, and I was poking around on your website, as I do every so often. But you have all kinds of articles. You bring in guest writers with different chronic illnesses. You have a lot of, for instance, like children’s books that are there to help people either help kids understand their own chronic illness or help them understand their parents’ chronic illness. You know, and those are super helpful because they’re, they may not always be you might not find them in, you know, a big bookstore. You may have to actually go looking for them and order them, but that help is definitely there for people. and so you’re putting that all in one place so that people can find the things that most resonate with them.

Amber Tresca 00:39:53  So, it’s I, I can’t say I can’t say enough good things about Mamas Facing Forward. I’m so glad that we met, that day, that I was glad that you were able to pack up that baby, and bring her along and then, you know, continue the work that you’re doing because it’s so impactful. But Mariah, I didn’t ask you at the outset. I normally do, but remind me and remind our listeners about your educational background, because I think it’s actually very germane to this conversation.

Mariah Leach 00:40:29  So I, I went to Princeton, where I studied politics, and then I was doing a dual degree at the University of Colorado. I was working on a law degree and a master’s in environmental studies with a focus on policy. when I was diagnosed with RA, I was right in the middle of that program. So I did finish both of those degrees. But now I tend to use my law degree and my knowledge of policy more in the health space than in the environmental space.

Amber Tresca 00:40:58  I just wanted to make sure that people knew that, you are you are a trusted resource to talk about this because you have the background to to do so. Mariah, tell me something that you guys are going to do this fall. You and your family. You are so generous with the photos and the experiences that you share as you’re going through your motherhood journey. Do you guys have anything interesting coming up or Halloween costumes?

Mariah Leach 00:41:25  You know, we started a couple of years ago. There’s a campsite, a KOA campsite, only about an hour and a half from where we live. That does a really fun Halloween events every weekend in October. So we’re camping when we’re going to go and, the kids go trick or treating at the different RVs and, and there’s all sorts of activities and, that’s something they’ve started looking forward to every year and that’s, that’s coming up. So we’re excited about that.

Amber Tresca 00:41:51  Oh, wow. Oh, that’s so fun. That’s so great. We, we’re going to be going to Sleepy Hollow because it’s it’s not far away.

Mariah Leach 00:41:59  Very cool. Awesome.

Amber Tresca 00:42:01  It’s definitely where it’s a great place to go in October. Look, it’s a little crowded. But if you’re looking for some spooky season fun, it’s definitely a place to go. Mariah, thank you for reaching out. I, I was really I don’t often feel this way, but I was really at such a loss with this whole topic. I should I cover it? Should what? Like how how do we handle this? What do we do? And then boom, you popped up in my inbox.

Amber Tresca 00:42:28  Saying, we got to do something about this. And I and I agreed.

Mariah Leach 00:42:32  It certainly made me think and feel for people who are making those decisions right now. It’s a complicated decision to begin with. And you really don’t need anything making it more challenging.

[Music: IBD Dance Party]

Amber Tresca 00:42:42  Absolutely. Especially when there’s really not good data, good science backing up this blanket recommendation. And it’s just leaving people at a loss. So the best decision is always is to talk to your doctors, but that the data does not show a correlation. It just doesn’t. So. Mariah, thank you so much for all the work that you’ve been doing.

Mariah Leach 00:43:06  Thank you for having me.

Amber Tresca 00:43:07  This has been like ten years now? You’ve been doing this work. So I really appreciate it. And I know that you’ve got some stuff on the horizon, so I’m looking forward to that as well.

Mariah Leach 00:43:17  Thanks very much.

Amber Tresca 00:43:21  Hey super listener, check the show notes to find links and information about the topics discussed in this episode. Plus get a written transcript and much more on my website about IBD. If you enjoyed this episode, please consider sharing it with someone else or leaving a rating in your podcast app. Reviews and ratings help me grow this show and bring you more great content. Thanks for listening and remember, until next time, I want you to know more about IBD.

About IBD is a production of Mal and Tal Enterprises.

It is written, produced, and directed by me, Amber Tresca.

Mix and sound design is by Mac Cooney.

Theme music is from Cooney Studio. 

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