IBD Drive Time: Dr Susan Kais on Pregnancy and IBD

Drs Raymond Cross and Susan Kais delve into the issues surrounding fertility, pregnancy, postpartum care and more for women with IBD.

Raymond Cross, MD, is director of the IBD Center at Mercy Medical Center in Baltimore, Maryland, and professor of medicine at the University of Maryland. Susan Kais, MD, is an assistant professor and IBD specialist at the University of Cincinnati School of Medicine in Cincinnati, Ohio.

TRANSCRIPT:

Any views and opinions expressed are those of the authors and or participants and do not necessarily reflect the views, policies, or positions of the AIBD Network or HMP Global, its employees, and affiliates.

Dr Cross:

Welcome everyone to IBD Drive Time. I'm Raymond Cross from Mercy Medical Center in Baltimore and I'm delighted to have my new friend, Susan Kais from University of Cincinnati here to talk to us about women's health and IBD. Susan, welcome to IBD Drive time.

Dr Kais:

Thank you so much for having me, Ray. I really appreciate it.

Dr Cross:

So for the next 25 minutes or so, I thought we'd talk about women's health as a continuum and thinking about a woman who is thinking about having children and through pregnancy and then maybe post having children--not that that's all women do--but just thinking about the continuum and I thought that would be great for our listeners. So let's start with in patients that are preconception. So what specific items are you focusing on? Is it disease, activity, fertility, health care, maintenance? What are you focusing on?

Dr Kais:

I think really all of the above, honestly. I think first and foremost with regards to family planning and pregnancy and IBD, I think we don't do a good enough job talking about this with our patients. I think most female patients with IBD feel that their issues of family planning and pregnancy are not adequately addressed during a lot of their respective interactions with their providers. And so it's super important to bring this topic to the public and make it more available, have a good understanding of what we should be looking at, where we should go and how we should be addressing all of this. I think first and foremost, if we have a patient that's looking for family planning, we want to make sure that their disease is under control. We don't want to get pregnant while having an active flare, obviously. So really homing in on getting your disease under control with your respective provider.

For patients that have their disease under control and they're thinking down the lines of family planning, I think it's important for them to know that once again, a disease needs to be under control and what are some of the things that we need to get in order to make sure that your pregnancy is successful? Making sure that you're getting plugged in with a high risk OB/GYN, making sure that the therapy that you're on is acceptable for preconception and throughout pregnancy. If you're on a therapy that we need to consider changing, we need to change it before you start your family planning. And then what that looks like moving forward, making sure that we're maintaining that disease state being under control using objective markers such as our fecal calprotectin, looking endoscopically so that you can have the best outcome possible.

Dr Cross:

Yeah, I agree. And as you said, the ideal patient is a healthy mom who's in remission. So healthy mom I usually tell them is a healthy baby in general, no promises. But a lot of that was based on a study in the late ‘80s from--I think Miller was a lead author--and that was of course before treat to target. That was before we had advanced therapies and it was all based on clinical remission. And the thought being that if you're in clinical remission, the flare rate was relatively low, higher in UC than Crohn's, but if you had active symptoms about a third of people got worse, a third of people stayed the same throughout and a third actually went into remission. But in 2025, what does being in remission mean? So in other words, how deep of remission does your patients need to be in before you give them the green light to conceive?

Dr Kais:

I think for me and my practice, I want to see not only do I want to hear that they're clinically feeling well, I want to make sure from objective standpoints that their fecal calprotectin is normal. When I look endoscopically, there's no evidence of active disease and I want to make sure that these aren't patients that we've just started therapy and we've achieved that. I want to make sure they're going to maintain that for at least they've been in clinical remission for about 6 months. So that's really important with regards to preconception. But I think one thing, Ray, that I don't think is talked enough about is talking about IBD patients and their respective ovarian reserve and understanding that ovarian reserve in the IBD population is not as strong as that it is in the general public due to the milieu of active inflammation affecting those ovarian reserve.

And this is something they really talk about in IVF-related fertility matters. So I really think it's something if even if a patient, a female patient isn't ready to start family planning, but it's something that they want to address down the line and they may be thinking about IVF in the future. I think it's important for those individuals to get plugged in with a IVF specialist to secure the best optimal number of follicles. Then waiting if you wait too long, that reserve, ovarian reserve, is not as abundant and robust. So when a female patient maybe between the ages of 30, 35 wants to start family planning and they go see their treating IVF specialists and they're shocked that their reserves is not that of a healthy general public female, it's because of the lack of knowledge. Had they known maybe they could have gone at the age of 25 or there would've been more higher robust ovarian reserve. And I really don't think that we do a very good job and in educating our patients and even us as providers. I don't know what your thoughts are your experience regards to that.

Dr Cross:

Honestly, I was intrigued because I had never really thought of that nor have I recommended to my younger patients that they consider that. And I have seen our colorectal surgeons recommend that to women that are undergoing a surgery for Crohn's or a colectomy that they donate. But I hadn't thought of that and I am going to put it in to my planning discussions with them from now on. So I always learn something new when I do these.

Dr Kais:

Yeah, absolutely.

Dr Cross:

We know that we can't heal every ulcer and sometimes in ulcerative colitis we heal from the top down, but there's a little strip of proctitis that's still there. We do a really good job of optimizing our therapies and tweaking and adjusting. I presume for those patients that feel well, that have had a biologic response, that aren't perfect endoscopically, that that's going to be a shared decision-making situation, you're probably not going to keep cycling meds in that situation, I guess, unless the inflammation was really significant. Would you agree?

Dr Kais:

I definitely would absolutely agree. I don't think necessarily things have to be absolutely pristine. It's kind of a discussion that you have with your patient saying there may be a little bit, they're really wanting to proceed with that family planning. So as long as we're on the same page and then we also have the support of our high risk OB/GYN and we're working collectively together, I think we can have the best outcome moving forward.

Dr Cross:

Yeah, I agree. And I think for someone, even if they're having some proctitis symptoms, typically they're not, usually they don't extend during a pregnancy and get really sick like becoming anemic and raising their CRP. So I feel a little more comfortable, but that always, I want them to be perfect, but we can't always get there.

Dr Kais:

Absolutely. I can't agree more. And have you seen in your respective practice women who because of their disease have misconceptions or unfounded fears that lead them not to pursue family planning? Have you had this or seen this or patients bring that up to you?

Dr Cross:

I have to say I've been lucky that most of my patients are coming to me ahead of time before trying to conceive, having the discussion. I would imagine that there are some people who are silent about that, that are perhaps delaying or not planning to conceive because of fears, but they're not routinely sharing that with me which is a shame, because I think we could generally reassure them that the odds are quite good. And even for those that are struggling to conceive in vitro works really well. So I'll have to pay more attention to that. But I think I'm lucky that most of my patients trust having the discussion with me and value my input. I think most of the OB /GYNs are pretty educated on this in general and are helpful.

Let me give you a scenario. So I have this delightful young woman that I take care of. She's a school teacher. We've cycled through a couple therapies and I put her on upadacitinib and she responded beautifully. She already has one child, but her and her husband want to have another. So I'm now in the uncomfortable situation. It would be the same thing if she was doing well on an S1P receptor modulator—about the safety of those during pregnancy or with breastfeeding. So now I got to come up with a strategy for that patient and I'll tell you what's happening. So how would you approach that, Susan?

Dr Kais:

So obviously the patient's finally under remission after struggling to get there and we know that UPA is one of those medications that we don't have all the information with regards to pregnancy and post pregnancy related issues with effects on the baby as well as breastfeeding. So right now, if you are on UPA and are planning to get pregnant, we right now recommend stopping it. Unfortunately, and I'm sure to a patient they're like, well, I'm going to flare. I've flared before. So that's a conversation to be had. If you explain to them the risk that we don't recommend staying on it, we'd recommend getting off of it. But that's that art of what we do is that patient doctor relationship discussing the risk and the benefits. If we say we really want you to be off it, it's not safe. We don't have all the data for it, we don't know everything, but are the pages that I'm going to stay on it will they understand the risks of that?

And I think this speaks to that information could then go to the respective piano study and support our knowledge in these individuals that remain on UPA. Now of course there are patients that are going to be on UPA that are not going to talk to you and get pregnant, oops, I'm pregnant. Right. Are you going to take them off the therapy or you going to continue on the therapy? So it's really, I don't think there's a right or wrong, it's really a discussion that to be had and individualized between the provider and the patient. But the general consensus is we really don't want you to get pregnant since we don't have all the respective data for our patients right now.

Dr Cross:

Yeah, I agree. And I had a frame shift of thought regarding, so what we decided to do in this patient was that she did not want to have only one child. She did not want to adopt. She did not want to consider surgery with an ileostomy, have another child and then do a pouch. And she did not like the idea of conceiving on UPA. So we elected to switch her to a different biologic, which didn't work and now she's on another biologic, which looks like it's not working. So we're coming back full circle.

But my thought process was always like, okay, I really want to make sure you're well on this therapy before you try and Marla—Marla's like someone, you don't even need to say her last name—Marla's, like you dummy. No, once the medicine washes out, you want her to get pregnant as soon as possible because if you can get her through the first trimester and organogenesis is done, then you put her back on the JAK, you're much more comfortable then than you are in the first trimester. And I'm like, oh, that's right! So I don't know, do you agree we can't disagree with Marla, that's impossible, but do you agree with that strategy?

Dr Kais:

Yeah, I mean I don't disagree with that strategy. I mean who can argue with Marla? So I personally haven't been in a situation where I have a patient on UPA and what to do during pregnancy. But like I said, I think it's just really an individualized discussion between you and your patient and how comfortable they are. Obviously we give our colleagues the information that we don't recommend it, but I think as we get more knowledge and more comfortable and more things get into the piano study with regard to UPA as well as S1P receptor modulators, we may be talking about something different in a year from now. Right.

Dr Cross:

Yeah, agreed. Yeah. And we did a drive time with Susie Kane when I think when we first had a JAK approved and she talked a little bit about potential for JAK inhibitors and affecting placental growth and some other things. So it might be good for the listeners to go back to that episode as well. So in addition to your regular monitoring during pregnancy, I see patients every trimester and then I see them once in the 90 days postpartum and then back to their regular schedule. Other than making sure their disease is under control, what other things are you focused on?

Dr Kais:

With regards to preconception?

Dr Cross:

No, once they're pregnant, sorry,

Dr Kais:

Once they're pregnant, I want to make sure that they're plugged in with their high risk OB/GYN. I want to make sure that they're not having evidence of any active inflammation, active disease clinically, they're feeling well; want to make sure they're still compliant with their therapy, that their respective high risk OBGYN is not telling them to stop therapy during a certain time, making sure that we're all on the same page. We're not missing anything. Making sure, I'm sure the high risk OB/GYN is making sure they're doing well from a nutrition standpoint. Some other matters to talk about during pregnancy, just making sure that …

Dr Cross:

Low dose aspirin?

Dr Kais:

Low dose aspirin.

Dr Cross:

Yeah, I think there's a little bit of evidence with pre-eclampsia that patients with immune --mediated diseases are at risk. And I've been a little surprised that the OB/GYNs don't seem to be less concerned.

Dr Cross:

The first trimester. And so I've been telling patients they should do it. Are you telling them the same?

Dr Kais:

I'm telling the same thing. So as we know, some of what we do are those restricted high risk OB/GYNs and are maybe not privy to the same information other studies. So that's why it's really important to make sure that you are keeping up with your patient during pregnancy, seeing that every 3 months, making sure that we're all on the same page, providing that insight to the patient and why as providers we're saying it's important and we are sharing that information, and a respective office visit notes with their high risk OB/GYNs and we're in a constant communication that we're not missing anything, that we're covering all our bases for IBD patients to have the best results during pregnancy, post pregnancy and so forth.

Dr Cross:

And I think almost a hundred percent of the OBs are giving the RSV vaccine late in pregnancy. So that's something that I don't really have to reinforce. That seems like it's pretty standard. So before we move on to some more questions, just for the listeners, IBD Drive Time is sponsored by the AIBD Network. We are on Apple Podcast and Spotify, so you can find us there. Also, there are some regional Advances in IBDs coming up in Dallas 6-21 to 6-22 and in Chicago where I'll be speaking, 7-26 to 7-27.

So Susan, bad news. Your patients flaring during pregnancy. What's your approach? How are you handling this?

Dr Kais:

First of all, I want to see what therapy are they on. Do I have room to optimize If I maxed out on the therapy? How far along are we in the pregnancy? Do I need to abandon the therapy and try going to a different therapy? Do I think I have room that this therapy, I can continue it safely and then maybe adding on a low-dose steroid to try to combat inflammation. So those are a couple of things that would be going through my mind. The therapy that I can optimize. If not, if we're already maxed out, do I need to abandon ship, go to something else, do I add a steroid? At this point in time, I don't want to increase any risk for gestational diabetes or any issues with baby's birth weight and things of that nature. So I want to also be in constant communication with their high risk OB/ GYN is where they are with everything and how the baby is growing, developing, and see where we are in pregnancy and what options we have.

Dr Cross:

We know that sometimes symptoms don't correlate with what's going on from an inflammatory perspective. I think for ulcerative colitis it's a little easier. Typically if they're having bloody diarrhea and you've excluded infection, it's almost always a flare. And calpro is really good. I certainly want to pair symptoms with something objective. But I guess one of the things that always bugs me a little bit is this recommendation to do an unsedated flex sig during pregnancy. And when I was at Maryland, I always felt like it was just such a giant hassle that the nurses didn't want to do it, patients don't want to do it unsedated or anesthesia doesn't want to support it, and then you need their presence. So I think maybe once in my career or twice I did them; often I just relied on what we did in COVID, try and use noninvasive biomarkers and I've certainly done some imaging, but they won't give contrast. And for MRI, so all kind of difficulties. Is that a reasonable approach, to try to pair symptoms with something noninvasive and then we're going to have ultrasound, which is nice, as long as it's not third trimester, that will be awesome because we can get that easily.

Dr Kais:

Easily. So definitely exactly what we were doing. I personally myself would not be doing a flex sig. I think we have our fecal calprotectin, it’s a very reasonable noninvasive marker to follow the patient along the pregnant patient along; we probably have some earlier fecal calprotectin to see kind of what their baseline is and where they are. Also, again, making sure we're ruling out any kind of infectious related etiologies. We don't want to miss that. Right. I think flex sig—not for me. I haven't had to do it in any of my patients doing just the fecal calprotectin and utilizing that as an objective markers. Great. And now we have IUS, which would be a great compliment. So this is a really good place for us to use it with our pregnant population.

Dr Cros:

Yeah, we're probably going to get in trouble by saying being pragmatic about sigmoidoscopy. We’re not saying you can't do it.

Dr Kais:

Yes, it can be done.

Dr Cross:

It is a bit of a hassle. Yes, agreed. Unless you're really concerned about CMV or you just don't have enough evidence to see that disease is active, you can probably get away without it. Now do you make any recommendations regarding mode of delivery for your pregnant patients?

Dr Kais:

With regards to mode of delivery, I think that is really a discussion to be had with the high risk OB/GYN and what they feel would be best for the patient. But obviously we know that mode of delivery is a topic that everybody wants to know about. So for example, if a patient has a rectovaginal fistula, we're going to recommend a C-section, right? I don't think vaginal delivery is a way to go on that with that. Again, if a patient's having active perianal disease, I'm going to recommend C-section and I believe that their high risk OB/GYN is going to recommend the same thing. The other is if there's some concern about things and sphincter function and maybe getting our colorectal surgeons involved in the discussion as well. So that's kind of where…

Speaker 2:

I think the pouch patients, that's just one that the logic is that you have you already pouch diarrhea and if you had a tear, it's going to be devastating. Absolutely. My argument going back is if a woman has a tear, it's going to be devastating regardless, but would be more devastating.

Speaker 1:

The pouch situation agreed.

Speaker 2:

It seems like there's a strong preference to C-section those patients, but I agree, I usually leave it up. And I think for active perineal, recto-vaginal, the OBs aren't even considering a vaginal delivery. So it's not like I have to call them and say, Hey, what are you doing? Everything's good, healthy baby mom's happy, what do you recommend postpartum? So we're still monitoring, but as far as breastfeeding any vaccine concerns, what about the wants to put their kid in daycare? So how are you addressing some of those issues?

Dr Kais:

Okay, so basically safety and breastfeeding IBD therapy—so 5-ASAs are safe for breastfeeding. Most of our biologics are safe for breastfeeding. Thiopurines are safe. The ones that are not are the methotrexate are small molecules or JAK inhibitors. We mentioned our S1P receptor modulators off the table for breastfeeding with regard to vaccinations, postpartum infants and utero exposure to biologics except for certolizumab pegol, I believe you want to avoid all live vaccines, 6 months post delivery unless serum levels are undetectable. And so kind of wanting to avoid those oral rotavirus, BCG and oral polio vaccines.

And then I think another thing that we don't talk about enough, I feel, Ray, is the mental health component in our IBD patients. Postpartum. I think studies have shown that women with IBD are an increased risk for mood and anxiety disorders and actually substance abuse disorders, which we don't talk enough about.

Dr Kais:

Yeah, that's important. Mental health, we can't get away from it in IBD care. Yhe one thing I'll add is that I think it was Millie Long, was talking to European colleagues who had this very strong recommendation to avoid daycare for some extended amount of time. And Millie studied this. I think she used the partners cohort to look at this and they found that there wasn't an increased risk of infection in young children that were attending daycares if their mom had been on a biologic or maybe it was with PIANO, but it was used registry. And then I think more recently, I think again PIANO, they had a number of moms who actually their infants were given rotavirus and they seem to do fine. And I think that's loosening a little bit to do that. But I agree the other live viruses for those that are giving, you can't get the BCG vaccine, like those things you need to void, but all the other vaccines that are completely on schedule. So last question before the fun question. How do you shift in your perimenopausal and menopausal limit? Anything that you're focusing differently there?

Dr Kais:

As we know, hormonal shifts affect our GI tract and I think for me and my patients, I don't really do anything differently unless my patients are experiencing worsening of symptoms, errors are going into perimenopause, menopause, and we just kind of see what the disease is doing, what their clinical manifestations are and if we have to change management, which can happen. But we know in general, changes in our hormone affects our GI tract and it affects everyone's a little bit differently. So again, I think it's individualized. I don't have an algorithm, it's like an individualized approach for me right now in my practice. And I don't think we have, correct me if I'm mistaken from our respective societies, any particular guidelines with regards to this?

Dr Cross:

Yeah, I agree. I mean I think I'm maybe a little bit more hawkish on their cancer screening and even more so on vaccines for things that we can prevent women, of course for bone health. But a lot of times at that point their primaries and OB/GYNs are helping with that. But it's really an extension of what we do with our middle age and younger patients as well.

So this is the fun question, Susan. What's the fun fact? So what should the audience know about you?

Dr Kais:

Fun facts about me. I guess a couple of fun facts would be one, if you didn't really know me, don't know me very well. I think I missed a part of my calling. I love standup comedy. I love anything that to make people laugh, smile. I love imitating people. So I have my respective TikTok where I do a lot of impersonations, things of that nature, which I really enjoy. So I think one of my other colleagues would've been a comedian, but I've been able to express that side of me through TikTok platform. The other thing I think that people may not know about me, but if you do a deep dive into my personal Instagram page, you'll realize that not only am I an IBD provider, I also too am an IBD sufferer. I was diagnosed with inflammatory bowel disease, specifically ulcerative colitis, at the age of 16 years old. So whatever my patient has experienced, I have experienced.

Dr Cross:

Wow, I didn't know either of those. And I think as long as we've been doing IBD drive time, we have not had someone do standup comedy on the side. We tons of musicians and maybe talented cooks and home improvement people. But I think that is the first, Susan.

Dr Kais:

Alright.

Dr Cross:

Thanks for doing IBD Drive Time. It was great. And hopefully we'll have you back soon.

Dr Kais:

I appreciate it. Thank you so much for your time, Ray. Appreciate you and all that you're doing with IBD Drive.

Speaker 2:

Great, thanks.

Speaker 1:

All right, bye-bye.