“Hindy’s Story: Crohn’s in Pregnancy”

Today, Dr. Fox speaks with Hindy regarding her experience with Crohn’s disease during pregnancy. Crohn’s disease is a form of irritable bowel disease (IBD) that can cause an array of symptoms.

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Dr. Fox: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN, and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman,” I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness. All right. Hindy, welcome to the podcast. Thank you for volunteering. How you doing today?

Hindy: I’m doing great. Thank you.

Dr. Fox: You’re welcome. So, tell me, how did you find us originally, the podcast?

Hindy: I don’t know how I found you, but when I was pregnant, when I first got pregnant with the twins, I was looking for as much information as possible and I just remember searching podcasts and somehow I came across yours and I ended up listening, I think, to all of the episodes and I gained so much information.

Dr. Fox: Well, appreciate it. And thank you for volunteering your own story, or as it were, stories, because we’re gonna be talking about two pregnancies, your first one from 2020, and then your twins, as you said, from 2022. How are the kids doing? Got a lot of kids at home now.

Hindy: Yeah. I have three under three and they’re all doing great.

Dr. Fox: Oh, amazing. Very nice. So, I guess to set the stage, we’re gonna be talking about coming into your first pregnancy that you delivered in 2020. So, I guess we’re talking about, you know, prior to that point. So, give us your background just in general and also in regards to sort of planning for a pregnancy.

Hindy: So, I have a long medical history before I came to this pregnancy. I was diagnosed with pretty severe case of IBD, which is, first I was diagnosed with colitis and then rediagnosed with Crohn’s in 2012. For years, it just was like on and off, somewhat in control, but not really fully under control. Then I got married in 2017 and my Crohn’s was okay, probably the best it’s been, but I can’t say it was perfect.

Then I took some time, I wasn’t trying to get pregnant right away. Then I started…we decided to start trying and then a little after, like, a month or two after, I started just having a lot of random health issues and my doctor advised me to stop trying until we get all under control. So, I lost my hearing in one ear a few times, which could have been connected to my inflammation and I needed steroids to restore it.

Then I was on Humira at that time. And Humira is known to help for psoriasis, but it could also cause psoriasis. So, for me, it caused psoriasis, and so I needed to switch medications. And then the biggest issue, which affects me and all my births is that I developed a anal fissure. So, first I… So, I went to see a colorectal surgeon and he first tried to inject Botox and that failed. So, he did some kind of little surgery, he cut the muscle, my rectal muscle, and that thankfully corrected it.

And then I went back to my GI and he said, “It’s good, you’re good to go ahead and try to get pregnant.” So, I got the green light to start trying and then I was talking to a friend and she recommended that I see a certain GI that specializes in IBD and pregnancy. And she also works together with an MFM. You know, they work to get it under control and they monitor throughout your pregnancy [inaudible 00:03:17] to make sure being, you know, the baby is healthy and everything works well together.

So, there’s a little wait to get an appointment with her. So, I scheduled an appointment and I got to see her in July. You know, she wasn’t fully comfortable with how my Crohn’s was at that point. But we knew that I might be pregnant, that I know I’m gonna find out in the next few days. So, she made a plan, like if I’m not pregnant, if I am pregnant and it turned out that I was pregnant.

Dr. Fox: In terms of seeing a different doctor, were you not satisfied with the original doctor or you just wanted to get a second opinion about what to do in pregnancy?

Hindy: I was satisfied with my first doctor. I honestly didn’t know why I was going to see her. Just my friend said it doesn’t hurt to go so I figured I’m very on top of my health, so I figured it can’t hurt.

Dr. Fox: Right. Okay.

Hindy: So, three days later I found out I was pregnant. And at first, I was doing okay and she said like, “Look, we’ll just have to wait and see. Like, we’ll hope for the best and look, you know, with Crohn’s there’s a third of women who do better during pregnancy, a third who stay the same, and a third who get worse.” Then a few weeks into my pregnancy, I think I was like nine or 10 weeks pregnant, I started having pretty bad symptoms. There wasn’t much we were able to do. I believe I tried rectal medications and that helped somewhat on and off throughout my pregnancy. And then when I was about eight or nine months pregnant, we finally discovered that I had C. diff.

Dr. Fox: Ooh. And do you think you had it for a long time and it hadn’t been picked up or something you just developed later?

Hindy: Yeah. I spoke to my doctor about it and we both felt that it must have been going on for a while.

Dr. Fox: Right. So, just for our listeners, do you want to explain what C. diff is?

Hindy: Yes. So, it’s an infection, I believe it’s bacterial infection in the colon. It causes very severe symptoms.

Dr. Fox: Yeah. A lot of those overlap with Crohn’s also.

Hindy: Yeah. And Crohn’s is a risk of getting it.

Dr. Fox: Right. Okay. And I’m just, you know, your pregnancy was, as you said, it was challenging because of the symptoms of Crohn’s or what turned out to be C. diff. Was it worse than what you had expected before pregnancy or were you sort of ready for that, so to speak? Because you said, you know, your Crohn’s was sort of, you know, at some points better controlled, at other points, not as well-controlled. So, did you have an expectation that it would be like this, or was this much worse for you?

Hindy: I guess I kind of did have an expectation because I never really had my Crohn’s be fully under control and I just knew that at every turn like it would just flare. And I was hoping for the best, but I wasn’t surprised. I was disappointed though because I was hoping that I wanted to have a family and I was a little disappointed that if this is how my pregnancies go, then, you know, it was a little discouraging.

Dr. Fox: Yeah. I hear you. Okay. So, you find out later in pregnancy that you have C. diff, I assume they put you on some form of antibiotic for it?

Hindy: Yes.

Dr. Fox: Okay. And did you get better?

Hindy: A little bit, not much. And then my… So, then COVID broke out right as I went into my ninth month. And my MFM wanted to start me on steroids, she didn’t feel comfortable with my condition going into birth. But my GI, like, disagreed with her because of COVID. She was more nervous about me getting COVID and getting very sick.

Dr. Fox: Meaning that she thought the steroids if you got COVID would make you sicker.

Hindy: Yeah. Because steroids suppressed the immune system a little bit.

Dr. Fox: Right. Okay, understood. So, what’d you end up doing?

Hindy: So, I couldn’t take the steroids. I rescheduled… I had a scheduled C-section and I remember waiting in the room, I waited for hours because they kept having emergency cases coming in. And I just remember constantly disconnecting the IV pole and running to the bathroom, and just I was in so much pain going into that birth.

Dr. Fox: Oh, you poor thing. What was the reason you needed a C-section?

Hindy: So, because I had that surgery for my fissure, the surgery, they cut the muscles so it weakened my rectal muscles and my doctors felt that, you know, the vaginal birth comes with risk of tearing, and if the tear goes deep enough to that muscle, then it wouldn’t be good. And also I have a high chance of needing to get my colon removed in the future.

Dr. Fox: Right.

Hindy: So, we need to keep that muscle as strong as possible.

Dr. Fox: Right. And now, is that something that you knew about going into pregnancy, or was that something you…was, like, a surprise development to you in the middle of pregnancy, finding that out?

Hindy: So, I found out at that appointment three days before I found that I was pregnant.

Dr. Fox: Oh, I see. So, meaning you’re not only are we planning for pregnancy, but by the way, we’re planning for a pregnancy that’s gonna end in a C-section.

Hindy: Yes.

Dr. Fox: Understood. Okay, was that a… And you said you wanna have a big family, so is that a big disappointment to you?

Hindy: No, because my mother-in-law had six C-sections. A big family, I don’t mean 10 kids, so that’s okay.

Dr. Fox: Understood. So, the day of, you’re not feeling well obviously, and how did the C-section go?

Hindy: It was great. I love the fact that I had a scheduled C-section because of COVID, and the surgery went great.

Dr. Fox: Amazing. And how was it in terms of, because you’re in COVID, I assume you’re in the hospital for a short amount of time?

Hindy: Yes, I was there for two days.

Dr. Fox: And what was it like coming home? How was your recovery?

Hindy: So, my recovery was really good, much better than I expected. I recovered pretty quickly but my Crohn’s was terrible after my C-section.

Dr. Fox: Oh. So, meaning from the C-section, you recovered okay, but the Crohn’s was not.

Hindy: It was terrible. Yeah.

Dr. Fox: Ooh, in what way?

Hindy: For the first few days it was great because you don’t go to the bathroom for the first few days after having surgery, abdominal surgery. So, that gave me a little bowel rest, so that was great. But after that, I just…every time I would breastfeed my baby, I would have to run to the bathroom and it was just really out of control.

Dr. Fox: Did it ever get under control?

Hindy: So, we had to wait because of COVID, we had to wait to do a colonoscopy. So, in August I finally had one and my doctor wanted to switch me to a new medication. I first wanted to try to increase the medication I was on to see if that could help and it didn’t really work. So, in January, I started thinking that, you know, I would wanna start having…start trying to get pregnant again within the next year or so.

So, I went back to that GI that works with the MFM and she switched me. She didn’t switch me, she added the medication that my other doctor wanted to switch me to. And I stayed on that for a few months and that got me very well under control. And then I had a colonoscopy and my doctor was actually very surprised about how well under the control it was, was the best it’s ever been.

Dr. Fox: Wow, that’s amazing. So, just adding that second medication.

Hindy: Yeah. And then after that colonoscopy, I got off the first medication. The second one just continued to work for me till today, I’m still on that one.

Dr. Fox: Wow. And so, that really did change how your Crohn’s is managed basically, that new medication.

Hindy: Yeah.

Dr. Fox: All right. So, at this point, so you have I guess a baby at home and your Crohn’s is getting better. Were you…how eager were you to try again?

Hindy: Very eager. I really wanted to…I wanted my first one to have a sibling close in age. So, I started trying right after that colonoscopy. And thankfully, three months later I found that I was pregnant again.

Dr. Fox: Okay. And tell us about that when you found out you were pregnant in your early visits.

Hindy: It’s funny, I had a feeling it was twins. Like, two months before I found out I was pregnant, I knew, like, four people that had twins and somehow I just suspected that I was having twins too. Sorry. Went for my first ultrasound at six weeks and sure enough, there were twins.

Dr. Fox: Wow. What was that like seeing those two heartbeats or, you know, getting the news you’re having twins?

Hindy: It’s funny, I wasn’t shocked. I can’t explain it. I just…it didn’t feel real at first. It took me time to process that I’m actually having twins. Also, I knew there was risks with twins, so I didn’t let myself feel too excited until it was, like, at a point where, you know, they’re both viable.

Dr. Fox: Right. Were you concerned in any way that the twins would make…having a twin pregnancy would make your Crohn’s worse again, or that didn’t really come up because you were doing so well?

Hindy: So, I was concerned because I wasn’t doing well for that long yet. It was, I think, six months, and I didn’t know how it would go. I was a little more confident than I was the previous time but I was definitely concerned.

Dr. Fox: And how did it go, the pregnancy?

Hindy: Crohn’s-wise, it went very smooth. It was actually a smoother pregnancy than my first pregnancy.

Dr. Fox: It’s amazing.

Hindy: Yeah. Just the only complication was that there was twins.

Dr. Fox: And then how is… Obviously, the twin pregnancies are typically monitored closely, but I guess because of your Crohn’s, you were probably monitored pretty closely the first time around also.

Hindy: Yes, very much. Yeah.

Dr. Fox: Did you find a twin pregnancy just from a pregnancy side to be much more difficult or symptomatic or, you know, sort of labor-intensive in terms of all the visits, or was it, you know, you were sort of used to that already?

Hindy: So, it was a little more intense than the first one. First of all, I was much bigger than the first time so I had a very hard time moving. My visits from 16 to 26 weeks I would go in every other week to check my cervical length to make sure I’m not going into preterm labor. Every time I had contractions, I had to monitor them. I had contractions very early on.

Dr. Fox: Okay. Were you in and out of the office or in and out of the hospital in terms of monitoring contractions and stuff?

Hindy: So, I would contact my doctor often. And at 33 weeks I did have to go in and I was having very consistent contractions. We ended up stopping it though at that point.

Dr. Fox: Okay. And ultimately you went…you delivered at what point? How far did you get?

Hindy: Thirty-six-and-a-half weeks.

Dr. Fox: That’s great. For twins, that’s fantastic. Better than average. Really good. And was it…did you go into labor or your water break or was it scheduled at that time?

Hindy: So, I was scheduled for 38 weeks because they were fraternal twins and my water broke at 36 weeks.

Dr. Fox: Oh, okay. So, tell me about that day, the C-section for twins.

Hindy: So, okay, I actually went in the day before I felt my water broke, I went in and they tested it, and then they said that, no, that’s not my water. So, they sent me home and a few hours later as I was going to sleep I felt a giant gush in my room, just the next thing I knew, my room was full of water.

So, I went in and they tested and they said that, “Yeah, now it’s your water.” So, they said, “We’re gonna put you in for a C-section,” but then they had some emergency cases come in, so I waited a few hours, and then in the morning, first thing in the morning they did my C-section. At that point I was so tired, I just remember I was so sick at that C-section. I was vomiting and I just kept, like, just literally almost conking out on the table.

Dr. Fox: You mean just from not sleeping and from the anesthesia, or whatever?

Hindy: Oh, for sure. Yeah.

Dr. Fox: Okay. All right. But I mean, nothing related to your Crohn’s?

Hindy: No.

Dr. Fox: Okay. And then how’d the kids do?

Hindy: They did great. They were a nice size. They were 5.2 and 5.11.

Dr. Fox: Did either of two have a NICU?

Hindy: Not right away. They came up to the room with me at first, and then because they were slightly preterm, they did a [inaudible 00:14:55] test.

Dr. Fox: Right.

Hindy: So, I had a boy and a girl. So, the girl passed right away and the boy failed it. So, they tried it again, and he failed again. So, they had to take him to the NICU for monitoring and they found that his oxygen would drop.

Dr. Fox: Right.

Hindy: It would come back on its own, but they just didn’t feel comfortable with him going home that way. So, they kept him there and they said that he needs to go five days without any [inaudible 00:15:18] so they could send him home. And then while he was there, they also found that his platelets were low, so they gave him a transfusion.

And I spoke to the hematologist and he said that he feels that it might have been caused by the medication I was on for my Crohn’s throughout my pregnancy. They had to [inaudible 00:15:35] some antibodies to platelets and it transferred to my baby. I spoke to my GI about it, she disagreed so I don’t know what caused that. But I was happy that he ended up being in the NICU because he needed to have his bris. And had he had his bris, you know, he might have been…he might have bled too much.

Dr. Fox: Right. Because of the low platelets. Okay. And so, ultimately, how long was he in the NICU?

Hindy: He was there for a little more than two weeks.

Dr. Fox: A little more than two weeks. And then, so you have two weeks at home with your daughter who passed the car seat test and is hanging out at home with you and you’re visiting your son at the NICU at the same time?

Hindy: Yes.

Dr. Fox: Not easy, right? Recovering from a C-section, you have a newborn at home, you’ve got a toddler at home and you’re going to the NICU. What was that like those first couple of weeks just logistically? Must have been pretty tough.

Hindy: It was very tough. But in a way though, it was easier because at night I got to only deal with one baby.

Dr. Fox: Fair.

Hindy: Yeah. So, I guess I had its pros and its con.

Dr. Fox: Okay. All right. And how did your toddler adjust to having twin siblings?

Hindy: She definitely had it hard a little bit. Like, I feel like a lot of toddlers are jealous of the baby. She didn’t have any of that, but she demanded a lot of attention. She was used to being an only child. So, she just felt like, she…you know, that she continue despite everything going on.

Dr. Fox: How is that now several months later? Has it gotten better for her or is she still not pleased having all these other people around grabbing your attention?

Hindy: Oh, she loves them. She loves them. She loves helping out when they cry, she goes over and comforts them.

Dr. Fox: It’s great. That’s so nice. And so overall, how was your recovery from the C-section part?

Hindy: So, it was a lot harder this time. My pain management wasn’t so good this time. I had some issues with my incision. It opened up a little bit, got a…not infected really, but it got a little irritated. I needed antibiotics for that. Took some more time this time.

Dr. Fox: Okay. How you doing now? I guess you’re several months out now.

Hindy: Yeah, three-and-a-half months and doing great.

Dr. Fox: Amazing. Amazing. And the kids are good?

Hindy: They’re all doing great. Yeah.

Dr. Fox: Wow. So, tell me, looking back, you have, you know, three kids, two surgeries, plus the Crohn’s sort of roller coaster, looking back on all this, what’s your takeaway?

Hindy: That, you know, I always wanted to have a family. And after that, like I mentioned earlier, my first pregnancy was very discouraging and I’m very happy that I didn’t, you know, let that stop me from continuing or, you know, from just thinking that that’s how all my pregnancies will be. I’m happy that I went and, you know, I was very proactive and make sure that my…I made sure to get my Crohn’s well under control and I was able to have a very healthy twin pregnancy. I think that it was very encouraging. As discouraging as the first one was, this one was very encouraging.

Dr. Fox: Did you have any resources available to you to learn about Crohn’s or Crohn’s in pregnancy other than, you know, your GI and the MFM that you saw? I mean, did you have, like, friends or, I don’t know, Facebook groups or, you know, anything like that to sort of get information and advice?

Hindy: I did have some friends. I didn’t share that I was having twins so I didn’t really…I was trying to not share too much with them. But I definitely had some friends that were supportive. Yeah.

Dr. Fox: Wow. And so, if you had to give advice to someone who’s, let’s say, you know, young and has Crohn’s and is thinking about having kids, how would you advise them?

Hindy: I would advise them to seek as much…you know, go to whichever doctor it takes to be able to…that will make them feel confident. I remember when I went to this GI that works together with MFM, I saw one of her fellows at one of my appointments and he told me that he wishes more women would understand that it’s totally possible to have a family if you have Crohn’s. So, you know, and that was really encouraging for me. And I think that, you know, anyone who has Crohn’s and wants to grow their family should find a doctor that can encourage them and can make it possible for them because it’s very much possible. Even if one pregnancy doesn’t go well, you know, the next pregnancy could go really well.

Dr. Fox: No, it’s amazing. Yeah, no, I agree. And it’s just, you know, the Crohn’s itself has a…you know, a course that it takes, and then also there’s the treatments. And, you know, if you look at your experience, you know, your first pregnancy, I mean, you got through it, you had a healthy baby, it was a pretty rough ride. And then, you know, a different medication comes at a different time and suddenly you’re…you know, you’re not cured but you’re better and it makes your second pregnancy a much different experience.

And, you know, who knows what the next one will bring, whether it’ll be the same medication or whether at that time you’ll be on a different one? I mean, it’s hard to predict these things with anything in medicine moving forward. But if you’re sort of open to trying different things and seeing different people and seeing what’s out there, it really could…it could work out. I agree. It’s awesome. Amazing. Wow.

Hindy, thank you so much for volunteering to tell your story or stories. I appreciate it and I think that we definitely have, you know, a lot of listeners who have medical issues, some of them definitely have Crohn’s and they’re thinking about having kids. And I think this is a really important story for people to listen to and to learn from you and to really enjoy your good outcome.

Hindy: Thank you for having me.

Dr. Fox: Thank you for listening to the “Healthful Woman Podcast.” To learn more about our podcast, please visit our website at www.healthfulwoman.com. That’s H-E-A-L-T-H-F-U-L-W-O-M-A-N.com. If you have any questions about this podcast or any other topic you would like us to address, please feel free to email us at hw@healthfulwoman.com. Have a great day. The information discussed in “Healthful Woman” is intended for educational uses only and does not replace medical care from your physician. “Healthful Woman” is meant to expand your knowledge of women’s health and does not replace ongoing care from your regular physician or gynecologist. We encourage you to speak with your doctor about specific diagnoses and treatment options for an effective treatment plan.