When you live with a disease like Crohn’s or ulcerative colitis, family planning takes thought and special consideration. The first-ever Global Consensus Conference on Pregnancy and IBD was held during Digestive Disease Week (May 2024) and part of the discussion focused on the latest recommendations for pre-conception counseling and family planning. This week on Lights, Camera, Crohn’s hear from Dr. Uma Mahadevan who co-chaired the conference, along with Dr. Christopher Robinson, a maternal fetal medicine specialist. As an IBD mom of three kids and the patient lead for the United States on this initiative, I’m excited to start sharing the latest guidance for our community.
The latest recommendations for IBD women
Couples should get pre-conception counseling.
Remission prior to conception for at least 3-6 months with objective evidence of remission.
All women with IBD should be followed as high-risk pregnancies (however that monitoring works in each country)
Pregnant women should take low dose aspirin daily by 12-16 weeks gestation to avoid preterm pre-eclampsia.
These recommendations were voted on and determined by more than 50 medical providers and IBD patient advocates from around the world. They are the gold standard, and the hope is that the recommendations help clear up the gray area and bring clarity to couples who are planning to grow their family and wanting to conceive.
“Our goal was to have a universal guideline that was the same worldwide. This would reduce confusion and avoid the default of just not giving women appropriate therapy. The Consensus really tried to advise what we, as pregnancy in IBD experts, do with our patients, so that women everywhere can have the same high level of care,” said Dr. Mahadevan.
Considerations for women prior to conception
Dr. Mahadevan says when a woman starts medication, she generally tells her whether it is a compatible with pregnancy or not.
“I also tell them when they are ready to consider conception to meet with me first. So generally – the education and family planning discussions should start before you are even ready to consider pregnancy. For couples, they should give their GI a 6-month window ideally to make sure there is remission, a chance to optimize medication, and get any testing done that is needed.”
Personally, I had bowel resection surgery in August 2015 while I was engaged. We knew our wedding was in June 2016, and following the surgery I reached remission for the first time in a decade, so timing was of the essence. I told my GI at a post-op appointment in November 2015 that we were planning to start trying for a baby right after our wedding. Knowing that, she put me on a prescription prenatal and folic acid to start prepping my body for pregnancy, I also had a colonoscopy the month prior to my wedding to confirm I was in remission.
Recovering in the hospital after my bowel resection surgery, with hopes of one day being a mom.
Dr. Mahadevan recommends patients start 1 mg of folic acid daily when she learns they are considering conception.
“The prenatal with iron can be bothersome to some patients so I wait for the OB to start that. I check Vitamin D, B12, and iron labs to make sure those are all good.”
Dr. Christopher Robinson, MD, MSCR, Charleston Maternal Fetal Medicine says preconception care is an excellent way to plan out a pregnancy path.
He went on to say, “We recognize that the best outcomes are achieved when preconception care is employed prior to conception for optimization of disease management. This is especially true of IBD where there can be a number of misconceptions about safety of medications and goals for nutrition and surveillance of the pregnancy. Thus, I would recommend preconception counseling and establishing a care plan with Maternal Fetal Medicine early in pregnancy (first trimester).”
What does pre-conception counseling entail
Preconception counseling can be extensive. You should expect to go through an entire healthcare maintenance checklist of the following:
Checking labs—vitamin levels, sometimes drug levels
Updating vaccines
Cancer screenings—pap smear, colonoscopy if appropriate
Ensuring the patient is in remission which may require a colonoscopy, intestinal ultrasound or other imaging
Making sure medications are compatible with pregnancy
Reviewing prior pregnancy and if there were complications
Discussing mode of delivery, referring to a Maternal Fetal Medicine doctor prior to pregnancy if prior complications or if a woman is extremely high risk (for example, prior blood clots), has an ostomy, or if there is evidence of malnutrition or difficulty with weight gain.
Discuss starting aspirin at week 12 and set up a visit schedule with your GI, as you’ll generally see them once per trimester.
I had four pregnancies—three healthy, full-term babies and one miscarriage. As soon as I found out I was pregnant I alerted my GI. From there I set up an appointment with my “regular” OB for the initial ultrasound at 8-10 weeks, and then moving forward I had monthly ultrasounds with a maternal fetal medicine doctor, appointments with my GI each trimester, and the regularly scheduled in-office visits with my OB. Even though I had flawless pregnancies each time (aside from the baby I lost around 7 weeks), I was considered “high risk” because of my history of Crohn’s disease and prior surgery.
I had three scheduled c-sections, not because I had perianal Crohn’s, but because my care team allowed me to decide what I felt most comfortable given my health history. If I could do it all over again, I’d do it all the same. I appreciated the extra surveillance for my children and for me, healed beautifully after each abdominal surgery, and was grateful that by staying on Humira until 39 weeks with my first child and 37 weeks with my younger children, I maintained my remission throughout pregnancy and after.
Dr. Robinson said while each pregnancy has specific needs, in general he also follows pregnancy with serial growth checks every 4 weeks across pregnancy (following the targeted anatomic scan).
“It is possible, if a patient has longstanding, well controlled disease, and an optimum prior pregnancy outcome history, to check a 32- and 36-week ultrasound for growth. However, in the first pregnancy, I agree with serial growth scans.”
What remission before pregnancy really looks like
Remission is often a difficult word to define when it comes to living with IBD. As Dr. Mahadevan tells me, “Not everyone can achieve complete remission.” So, what are doctors looking for and what should your target be?
“We are looking to give moms-to-be the best chance at conceiving, keeping the pregnancy, and having a health pregnancy. I like to see normal labs, normal calprotectin, normal colonoscopy, and imaging without visible inflammation. Not everyone can achieve this, but that is the ideal three to six months prior to conception,” explained Dr. Mahadevan.
“IBD has both genetic and autoimmune underlying components that can interfere with development of the placenta and affect maternal nutrition across pregnancy. In these cases, optimization of disease management can improve care and reduce risk for both mother and fetus. The goal of interventions is to reduce the risk for mother and infant through coordinated care with GI, MFM and OB/Gyn in pregnancy,” said Dr. Robinson.
Stay tuned to Lights, Camera, Crohn’s next week when the latest recommendations for IBD medication in pregnancy and lactation is disclosed. A full manuscript with all the recommendations and guidance is in the works, with hopes of the information being publicly available by the end of this year. I’ll be working on the companion piece for the manuscript dedicated specifically to the patient community.
Kids are more intuitive than we tend to give them credit for. They are always watching us and even before they’re able to speak in sentences they have an innate sense of empathy and understanding. As an IBD mom of three, whose kids are almost 7, 5, and 2.5, I’ve started to think more lately about how to explain my Crohn’s disease to them in a way that will educate them, without scaring them. It can be a difficult balance.
I know my older two know mama gives herself shots, often needs to run to the bathroom, and gets “tummy aches” but I haven’t yet dropped the term “Crohn’s” or “disease” to them quite yet. It can be hard to explain and sometimes when I start trying to share more, I feel like it’s still going over their heads. Their concerned eyes when I’m in pain and how they watch me do my Humira injections is a reminder to me that they are aware something is going on. As we potty train my youngest, he commends himself for going on the potty by saying he’s “just like mama” …ah, what a great analogy!
This week on Lights, Camera, Crohn’s hear from several IBD parents about how they transparently communicate their experiences with Crohn’s disease and ulcerative colitis. It can be a fine line educating and being open, while also trying not to overwhelm and scare kids. I’ve found it extremely helpful tapping into the community and gaining input from others and I hope you do, too!
Helpful Guidelines for Navigating the conversation with your kids
Choose the right time. Pick a time when you won’t be interrupted and can focus on the conversation. Ensure it’s a moment when you and your children are feeling calm, at ease, and open to discussion. My recommendation as an IBD mom would be to have this conversation on a “feel good” day—rather than when you’re flaring or in the hospital.
Prepare yourself. Decide in advance how much detail you want to share based on your child’s age and maturity level. IBD is complicated, be ready for a range of emotions including sadness, fear, and even anger.
Use age-appropriate language. Explain your IBD in a way that is understandable to your child. Avoid using confusing or technical terms. For younger kids, it might be helpful to compare your illness to something they already understand.
Be honest but reassuring. You can be transparent and truthful, but also reassure them about all you do to manage and control your IBD. Empathize with the aspects of your daily life that won’t change, to provide them with a sense of stability and comfort.
Focus on practical impacts. Explain how your IBD might affect your daily routine or activities with them in a straightforward way. Use examples such as—“Mommy’s Crohn’s can be unpredictable, I may say we’re going to the park, but then I don’t feel well so we have a movie date and snuggle instead and plan to go to the park another day.”
Encourage questions. Allow your children to ask questions and express their feelings and know this will be an ongoing conversation throughout life. Go into the conversation without expectations. It’s ok to admit if you don’t have all the answers. You can explore some of the questions together.
Provide continuous support. Let your kids know that it’s okay to have and express their feelings about your IBD. Offer them ongoing support and reassurance. Let them know they can always come to you with questions or concerns at any time.
Seek support when needed. Consider enlisting the help of a therapist or a counselor, especially if you or your children are struggling to cope. Joining support groups and tapping into the online patient community and connecting with fellow IBD families in similar situations can be beneficial.
Keep the conversation going. Check in with your children regularly about your IBD and how you’re feeling. Be casual about it. Share when you see an opportunity to teach or calm fears that your kids may be internalizing.
Highlight the positives. While acknowledging the challenges, also focus on the positive aspects, such as the strength of your family unit or the support you have from friends and community. I always tell my kids when I’m doing my injection that mommy is strong, and we can all do hard things.
By approaching the conversation with honesty, sensitivity, and openness, you can help your children understand and cope with your chronic illness in a healthy way.
My 2-year-old trying to make me smile during a rough day in the bathroom.
IBD as a family disease
There’s a common saying in our community that IBD is a family disease, in that whether you have Crohn’s or ulcerative colitis or not, if someone in your nuclear family has it, the disease impacts your living experience in some way.
Emily and her husband have IBD and so do their three daughters, so discussions about IBD are frequent in their home since it’s a living reality for all five of them. She tells me the conversations tend to fall in one of the following categories:
1) Explanations of IBD details, procedures, surgeries, or diet needs for a member (or members) of the family.
2) Discussions to calm anxieties in one child about the presentation of IBD in themselves or in another family member.
She says the second category tends to be the more challenging conversations, by far.
“In the first category, we tend to stick to factual, age-appropriate explanations. For example, when our five-year-old needed to know about scopes and surgeries, we explained that a specific family member has “belly problems” and the doctor is helping by taking pictures of their belly and fixing the parts that were causing trouble,” explained Emily.
As the girls have gotten older, Emily says they add details about how the doctors do different procedures – always led by their child’s level of interest and desire for the knowledge.
“We are always honest about pain or discomfort related to medical procedures. Many things are NOT painful, and we want them to trust us that something does not hurt if we tell them. This has served us well. When surgery was needed for one daughter, we discussed how she would be sore afterwards, but we had ways to help the pain until it would subside. This was undoubtedly a challenging time for us, but our daughter did amazing,” Emily said.
As Emily’s girls have gotten older, as a preteen and teen, they understand more about their parents,’ and their own, IBD. They have lived through surgeries and many medical procedures in their family. Emily says now the more challenging conversations have started, related to knowing the possibilities around IBD.
“For example, I had a colon perforation following a routine monitoring scope for my IBD. It was a rare event that we are all warned about prior to a colonoscopy. It resulted in a more significant repair surgery and several days in the hospital. My daughters are old enough to realize that they also have scopes regularly and we had to have some discussions about the chance that the same thing could happen to them. It was challenging for our family for a few rounds of scopes!”
Emily says they addressed this topic mostly by focusing on the “helpers” as the iconic Mr. Rogers would! Yes, bad things can happen, but she reminded her daughters that they are so lucky to have doctors and medical professionals to “fix” these problems. She reminds them that they are lucky to have family and friends to help when they are not feeling well. She also talks about how they are lucky to have each other – who understand the ups and downs of this disease.
“This narrative has gotten our family through many challenges! I talk with my oldest daughter much more now about the details of her IBD. She is a teen and has had more than her fair share of IBD troubles. She has watched me deal with my challenges too. We are open with each other about the negative parts, and our frustrations having to deal with IBD. It is a double-edged sword to have her growing up! On the one hand – I hate that she is old enough to really understand the negatives. But she is also turning into an amazing young woman who is one of my closest confidants with this disease. We understand each other’s highs and lows like most cannot. We supported each other in challenging times and celebrate together for each win!”
Sari says she bought a couple of children’s books that feature a caregiver with chronic illness.
“One of them is titled ‘Some days’…it’s about a mom with multiple sclerosis, but it works for IBD, too. It goes over how some days are more exciting and others are simpler more restful days. If there are other kids’ books people have found, I’d love to hear about them!”
Kate also has a book by someone with Crohn’s, but says they’ve also always been very honest and open about it with her son.
“I always worried he would tell people too much, but I’ve found he’s incredibly respectful and it has made me feel less shame in my body because I talk to him so positively about it. Especially the perianal disease, which has been really hard to talk about with people. My son is six and understands my immune system attacks my digestive tract. We also have a puzzle of the body we have played with for years and he knows the colon, intestines, rectum, etc. because of that.”
Becca says one of her favorite memories as an IBD mom is when her daughter was learning body parts and said, “Mommy and I have vulvas, Daddy has a penis, Daddy and I have butts, and mommy has a bag!” She also often asks to see her “cut” on my belly (c-section scar), but I constantly remind her that she shares her “cut” with a lot of intestine.”
Becca also says for the longest time her daughter thought that EVERY mom gets an ostomy bag when they’ve had a baby.
“She didn’t realize I had mine for four years before she was born!”
As an IBD Dad, Brandon said he stumbled upon a video series when his son was around age five that provided a solid explanation. At the time his son had a broken arm.
“The video explained people have booboos you can’t see. I explained that I had what the girl in the video has. Nowadays, I show both my boys’ photos from my colonoscopies.”
You can watch the video Brandon showed his son here.
Here are additional books about chronic illness that others have recommended:
I remember the first phone call when I was pregnant with my oldest as a soon-to-be IBD mom. A researcher from Mother to Baby called me when I was newly pregnant and leaving work—I sat in my car in a parking lot, as she asked me several questions about my health, well-being, medication, and pregnancy thus far. That was Fall of 2016. Fast forward to now—and my oldest, Reid, just graduated from kindergarten. When I was diagnosed with Crohn’s disease at age 21 in 2005, one of my biggest fears was whether my chronic illness was going to rob me of motherhood. Back then, I was nowhere near ready to settle down, but the worry was always in the back of my mind.
When my husband and I got married in June 2016 and I was 10 months into surgical remission, we knew we needed to capitalize on my IBD finally being under control. Luckily, we got pregnant one month after getting married. Shortly thereafter, I started researching pregnancy studies for IBD moms. Lights, Camera, Crohn’s launched two days before I received a positive pregnancy test. I was fresh into my advocacy and had never been pregnant before. I didn’t have a community of IBD moms to lean on for questions or support as I navigated the unknown.
I came across information about Mother to Baby online and ended up being a part of their pregnancy studies for my first two children. The studies were different, but I had such a positive experience with Reid, that I decided to participate again with my daughter, Sophia. Reid’s study was a 5-year look at how Humira impacts babies in utero through kindergarten. When I was initially pregnant with him, this felt light years away. And here we are. Over the course of his pregnancy and until November 2022, I completed surveys, did phone interviews, had an in-person meeting with a doctor who came to my home and looked him over in front of me for any health anomalies, and most recently did an in-person cognitive neurobehavioral assessment at a nearby hotel with researchers.
We just got the results. While it’s rewarding to participate in IBD studies and interesting to learn, there’s always a part of you that worries about the findings and if mom guilt will ensue. It’s been reassuring and comforting to see my healthy kids, who were exposed to Humira in utero through the 3rd trimester, thrive and excel with milestones and in school.
The findings of the study
In November 2022, Reid and I met up at a nearby hotel with two researchers who provided neurodevelopmental behavioral evaluations for both of us. Reid’s assessment used a series of questions, games, and puzzles to help researchers determine his development of language ability, memory skills, and problem-solving abilities. The tests were selected to provide an evaluation of general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. The tests were intense, I was proud of him for how he handled himself during the process.
Reid and I waiting to do our assessmentwith research administrators
According to Mother To Baby, “this battery of tests is best suited to examine the similarities and differences among groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses in a child’s cognitive profile and indicate potential concerns when present.”
Behavioral Observations: “Reid was personable and interacted with both administrators on his arrival. He had a very positive attitude toward testing and quickly became comfortable with administration. He was engaged and attentive to the materials, listened attentively to the examiner and provided effortful responses even as questions became more difficult. Reid demonstrated good cooperation and attitude by following instructions and requiring minimal to no redirection from the administrators of his mother. He was focused and friendly for the full duration of testing.”
Summary of Assessment Results: “Tests were administered in a single testing session with one short break. The Wechsler Preschool and Primary Scale of Intelligence (WPPSI-IV) was selected to provide an evaluation of Reid’s general mental ability and to describe specific abilities in areas of verbal knowledge and reasoning and visual-perceptual reasoning and organization. This battery of tests is best suited to examine the similarities and differences in ability among similarly aged groups of children. While it was not adapted for Reid’s individual characteristics, it can highlight general strengths and weaknesses as well as potential concerns when present.”
The intelligence test was comprised of 10 subtests which measured a variety of verbal and nonverbal skills. Reid achieved a composite score in the average range. In the working memory category and spatial working memory, Reid performed in the high average range, which required him to remember and identify pictures that had previously been shown to him. On tasks that measured visual-spatial abilities, Reid scored below average. These tasks required him to synthesize visual stimuli to recreate block design.
“Reid was highly focused while processing visual stimuli. Overall, Reid is a bright and enthusiastic child. He was a pleasure to work with.”
Along with Reid’s assessment, I was also interviewed and performed tasks with an examiner on the other side of the room. I was assessed in the adjustment and life context. Tests included the Center for Epidemiological Studies Depression Scale and Parent Stress Index. My scores were within normal limits and my general mental ability also scored in the average range. Not gonna lie, the testing was challenging!
Reflecting on my experience
As an IBD mom of a 6-year-old, 4-year-old, and 22-month-old, who participated in pregnancy research during each of my pregnancies, I can’t begin to tell you how incredibly rewarding it is to know that your personal experience is helping to drive the future of care for women in our community who have hopes of one day being a mother. Sure, it takes a little bit of time and effort, but the data and research to show the safety and efficacy of medications while pregnant and breastfeeding is so needed. It’s comforting to know Reid is right where he needs to be cognitively and healthy physically, despite my high-risk pregnancy and exposure to Humira until 39 weeks gestation. We need more women to willingly step up to the plate and share their journeys to help guide the future of IBD motherhood and show all that’s possible despite our disease.
Opportunities to participate in research
Many people need to take medication during pregnancy to manage and treat their IBD. Yet, according to the Mother To Baby website, fewer than 10% of medications have enough information to determine their safety for use in pregnancy.
Do you have Crohn’s disease? Are you currently pregnant? If you answered “yes” to both questions, you may be able to help Mother To Baby advance the knowledge of how managing IBD in pregnancy impacts a developing baby. Click here to learn about how you can impact the health of future families by joining the Crohn’s Disease and Pregnancy Study.
Managing a chronic health condition often means receiving medication through an infusion or a self-injection. If the thought of getting or even giving a shot brings on tears and fears, you are not alone. It’s no surprise, two-thirds of children and one-fourth of adults have apprehension and anxiety around needles. So, what do you do when your child needs to take self-injections to manage their IBD? It’s a complicated and emotional process for everyone involved.
This week on Lights, Camera, Crohn’s we hear from a certified Child Life Specialist, a former pediatric patient who experienced self-injections, and two mothers whose children were diagnosed with IBD at a young age.
Phylicia Petit is a Certified Child Life Specialist at a Children’s Hospital in Minneapolis, Minnesota. She says being truthful with your child about the self-injection helps to build trust.
“Prepare your child for what they may experience in an age-appropriate manner. Use soft language. For instance, instead of saying “don’t move,” say “hold still.” Avoid phrases like “you’re almost done” and “it’ll just take 3 seconds”. Instead, praise your child for what was done well. Say, “you did a great job holding your arm still” or “thank you for telling me how you felt during that.”
Phylicia also says if you are calm and relaxed, your child will be calmer and more relaxed.
“Children often feed off their parent’s emotions. Use gentle and helpful words such as, “do the best work that you can do,” “you did it!” and “your job was to hold still like a statue, and you did that so well.”
Setting a routine
By giving the injections at the same time of day and in the same place, children cope best when they know what to expect. Children’s bedrooms are a place of comfort, so use a different space.
Phylicia says that by offering choices, it gives your child a sense of control. You can achieve this by saying “do you want the injection in your right leg or left leg?” and “do you want me to count to three?”
Reduce the pain
No matter your age, most people don’t enjoy needles. You can help reduce the pain for your child by using numbing cream. Contact your local pharmacist or GI to discuss topical anesthetics.
Buzzy uses vibration and ice to distract the brain from feeling pain.
Shot Blocker uses several blunt contact points to saturate the sensory signals around an injectionsite to distract from pain signals
“Don’t forget, you are a comfort to your child. Comfort positioning can be used by parents and caregivers during injections to reduce stress and anxiety in your child and help safely immobilize an arm or leg,” said Phylicia.
Comfort and distraction items:
Pacifier
Blanket/stuffed animal
Favorite TV show
Blowing bubbles
Squeezing a squish ball
Have your child sit up. Children are often more scared when they are lying flat. If you need help holding your child still, try holding them in your lap in a firm, but comforting position.
Practice deep breathing. Take a big breath through your nose, then blow out through your mouth. Have your child do this 3 to 5 times. To make this more visual for a little one, you can use a paper flower, pinwheel, or bubbles, and practice this before, during, and after the shot.
“As a former pediatric patient there were a couple of things that helped. Finding ways to numb the spot prior, whether it was ice or a numbing cream. Using a room, I could distract myself in (typically with a TV). If I was able to do it myself, I would set up the space, so I was comfortable. If my mom helped this still applied, but we talked through the entire injection to occupy my mind. It came down to comfort and finding ways to manage my anxiety around the shot. Over the years, it got easier, especially when we switched from the auto-injector to the manual shot,” said Natasha.
Stacy Dylan’s son was diagnosed with Crohn’s when he was only 2 years old. She co-founded the nonprofit Connecting to Cure Crohn’s and Colitis to help families cope and conquer IBD.
Here are Stacy’s tips for caregivers when it comes to injections:
Acknowledge that as a mama this is going to be hard. “You are going to feel sad and wonder why you and your child have to go through this. It’s going to be hard to watch them have anxiety about the shot and to feel pain. Get support for yourself for this.”
Try not to let your child see your pain. “Even though you are feeling this way, you know that giving them their meds is going to (hopefully, although it might take a few different meds to find the one that works) make them feel better and happy and more like themselves so approach your child with compassion and assurance about the potential of the meds to make them feel better.”
Try to have a calendar that shows when the shot is due but don’t talk about it too much if they are not bringing it up. “Remind them the day before or the morning of the shot and set a time to do it.”
There are practical things that may work to ease the pain of the shot. “Ice before and after. Rubbing the site after it goes in. Emla cream is a great numbing cream. My son is 22 and has been getting infusions, injections, and blood tests since he was 2 and numbing cream is our friend. We also used the Buzzy. It’s held on the skin before and after the shot and it stimulates the skin to reduce pain.”
Offer a reward. “At times I offered something post shot that motivated him when he was younger. Perhaps being able to watch a little more TV that day. Or a small new toy. Or a food treat that they can have, and it could be special for the shot day.”
Look into having a home nurse, if needed. “My son has been on so many of these meds since he was 7. When he was on Humira from age 9-10, it was before the citrate free (pain free) version and the Humira shot was very painful. It became too hard for me to do it and was too difficult for our relationship. It is rare that you can get insurance to cover a home nurse to do this, or to bring the child to get the GI office nurse to do it. We were able to pay a nurse to do his Humira shot for a brief period of time until he adjusted to it. It helped a lot.”
Cindy’s 12-year-old daughter was diagnosed with Crohn’s disease four years ago. She helps her daughter with weekly Humira injections and also offers helpful advice from a caregiver’s perspective about what it’s like to give your child an injection and cope with the difficult experience.
Don’t let your nerves show. “When I became responsible for giving the injections at home, I was nervous about doing it and it was important to me that I not transfer my own personal anxiety to my daughter. To this end, I really wanted to practice giving shots on anything other than her, so that when I had to inject her, I felt comfortable with what I was doing. Unfortunately, I only came upon the advice later, so it didn’t help me at the time…but I heard to use an already used syringe on a naval orange for practice.”
Do the injection in a neutral space. “A psychiatrist advised us to do injections in a neutral place. I had been giving my daughter her injections in bed because to me, this was the place where she was most comfortable. Unfortunately, she developed sleep problems, and our psychiatrist helped me understand that a negative association with the injection is not something that you want to combine with a happy place. In the summer, we inject it on our back porch and in the colder months we usually do it in our guest bedroom.”
Syringe instead of auto-injector. “We also find the syringe to be so much better than the pen. The pen made us feel tense and the lock was Pavlovian. The syringe allows for more control. No sounds. Go fast or go slow. My daughter takes a lot of comfort in her Buzzy.”
It gets easier. “Not better…but easier. For the first couple months, we had to physically restrain my daughter when injection day rolled around. It was soul shattering. However, we all did become used to what needed to happen and now (while not fun at all, it is a non-event). We do the injection now and move on with our day. We are thankful for the ease and convenience of injecting at home, and always thankful this medication is preserving my kid’s quality of life.”
When the Pregnancy Inflammatory Bowel Disease and Neonatal Outcomes (PIANO) study first launched in 2007 the main goal was to understand the safety of anti-TNF biologics like Humira and Remicade, and thiopurines for women throughout pregnancy and postpartum. As an IBD mom of three, I was able to participate with my youngest who is nearly 16 months old. The experience was something I am extremely grateful for. This incredible research for our community that is going on daily, helps guide decision making for treatment, while easing our fears as we embark on motherhood while managing IBD.
PIANO 2.0 is now underway and this week on Lights, Camera, Crohn’s I share everything you need to know about the updates to the ongoing research project, how you can participate, what the findings have shown thus far, and the goals for the future. Esteemed gastroenterologist, Dr. Uma Mahadevan, continues to lead the charge and help pave the way by sharing discoveries and findings.
“With new funding from the Helmsley Charitable Trust, we are really able to transform PIANO and try to reach a broader group of patients and answer more challenging questions. These questions include the safety of small molecules (tofacitinib, upadacitinib, ozanimod) and the newer biologics (ustekinumab, vedolizumab, risankizumab) as well as expand into studying the placenta and the impact of IBD, the response to COVID vaccine in pregnant IBD patients, and following children out to 18 years of age to look at long term safety and outcomes. The more you know, the more questions that come up.”
What’s new with PIANO
All women with IBD who are pregnant in the United States are invited to enroll. Specific interest in enrolling women on newer biologics (Stelara, Skyrizi, Entyvio, biosimilars) and small molecules (Xeljanz, Rinvoq, Zeposia) even if it was within 3 months of your last menstrual period but not during pregnancy. PIANO 2.0 is also expanding to look at the safety of aspirin in pregnancy (to reduce the pre-eclampsia rate) and well as how IBD women heal after a c-section and vaginal delivery.
There are new and improved patient and site interaction updates as well. There’s now a patient portal that enables women to enter their data directly, a Twitter page (@PIANOIBD) for research findings and updates, and a website with outcome data right at your fingertips.
The medical sites participating have also expanded to include USC, University of Miami, and the University of Maryland. Dr. Mahadevan says they realized most patients in PIANO were Caucasian and of higher socioeconomic status.
“We know pregnancy outcomes differ by race and socioeconomic status and we need to understand if that also applied to IBD pregnancies – does it make those differences more extreme or is there no impact? By expanding to sites with a far more diverse population, we will be able to better answer those questions.”
As far as the Patient Portal, rather than filling out paperwork and participating in phone interviews, now women simply answer questionnaires on the portal when they enter the study, every trimester, after delivery, at months 4, 9, and 12 of baby’s life and then once a year thereafter. Thanks to the Patient Portal, women can enroll remotely across the United States and don’t have to be at an IBD Center to participate.
Pushing the research further
The overarching goal with PIANO 2.0 is to gather data points from newer biologics and biosimilars and look at the safety of small molecules. So far, 2,012 women with IBD have participated in PIANO. The hope is to have at least 150 newly pregnant women participate each year.
So grateful I was able to participate in the PIANO study during this pregnancy, with my youngest child, who is nearly 16 months.
“With biologics we generally feel they are all low risk as they won’t cross the placenta in the first trimester when the baby’s organs are forming. Small molecules, however, are more concerning as they will cross during that key period of organogenesis. However, for some women that is the only therapy that works, and they must make difficult decisions,” explained Dr. Mahadevan.
Once the baby is born, the research will look at if the child develops any infection issues, malignancies, neurological issues, and immune diseases like IBD. There are some questions about basic diet as well. Having long-term data and a fuller picture of the future for IBD moms is priceless. By participating we’re truly paving the way for IBD moms now and in the future.
Dr. Rishika Chugh recently shared a presentation at the American College of Gastroenterology conference that Dr. Mahadevan co-authored that looked at data on 47 women on Stelara (ustekinumab) and 66 on Entyvio (vedolizumab). Those women were compared to moms not on biologics/thiopurines and those on anti-TNF therapies.
“There was no increase in harm from being on Stelara or Entyvio compared to those groups. Interestingly, those on Stelara had lower rates of preterm birth and C section. Numerically, there were also less infections on Stelara though that was not statistically significant.”
Participate in a Townhall Discussion with Dr. Mahadevan: Starting a Family with IBD: What Men and Women with IBD Should Know about Conception and Pregnancy
Save the date for a discussion taking place Thursday, December 15 at 6:30 pm Pacific Time. Click here to register for the free event.
I’m excited to be serving as one of the IBD patient advisors on the project, alongside fellow IBD moms Jessica Caron, Brooke Abbott and Amber Tresca (from IBD moms). We’re looking forward to providing the patient perspective and helping to guide the conversation. Jess and I were on biologics in pregnancy and have previously participated in PIANO. I had the opportunity to participate in IBD research studies with all three of my kids and it’s extremely empowering to know you are helping to change the future of care for women in our community and providing women with the added support we need while navigating pregnancy and motherhood with a chronic illness.
Pregnancy and motherhood look differently for women who have an ostomy. And not just physically. But also, emotionally, and mentally. The path to motherhood is unique for those of us in the IBD community and we’re living at a time when more research about pregnancy and breastfeeding is right at our fingertips, all of which sets IBD moms and moms-to-be up for success.
Whether you’re on the brink of needing an ostomy and fearful of what this means for your future. Whether you’re a mom of a young girl and worry about whether your daughter will ever be able to be a mom. Whether you’re newly diagnosed and can’t imagine your damaged body bringing a life into this world. Whether you just took a pregnancy test after a bag change and can’t believe it’s positive and don’t know what to do next. These transparent and real-life patient stories will bring you hope and help empower you in coping, preparing yourself, and working with your care team, if carrying a baby is something you hope to do one day.
This week we hear from several ostomates—some who are moms, others who are pregnant right now, and two women who got pregnant after having a proctocolectomy (removal of rectum and colon).
Krista Deveau was diagnosed with ulcerative colitis as a child. After having two bowel resection surgeries and her ostomy surgery over the course of 10 years, she was worried about whether being a mom would ever be an option.
“The reason for getting a temporary ileostomy and avoiding even more scar tissue, was because of I wanted to start a family with my husband in the years to come. To my surprise and my GI’s surprise, we got pregnant much easier than expected, truly a blessing because this isn’t always the outcome for everyone.”
She’s now 24 weeks pregnant and expecting her first baby in June! Krista says this is the best she’s ever felt. Her symptoms have been silent aside from having phantom rectum/poop and passing mucus more frequently lately.
Krista is on a dual biologic treatment plan (Stelara and Entyvio) every 4 weeks. She plans to stop her Entyvio treatment at 32 weeks and resume her infusion in the hospital after she delivers. She’s still in the process for determining her game plan with Stelara. She also takes prenatal vitamins, vitamin D, and b12 shots. She expects she’ll need iron infusions before baby arrives.
As of now, she plans to do a vaginal birth. Due to not having perianal disease and already having significant scar tissue and adhesions from previous surgeries, her care team determined this plan with her. Like any IBD mom-to-be, she worries about the ever-present threat of a postpartum flare, having to be hospitalized and be away from her baby, and possibly passing her disease onto offspring.
Katie Cuozzo was diagnosed with Crohn’s disease when she was 5 years old. She’s had concerns about not being able to get pregnant for as long as she can remember. Now, she’s 34-years-old and a mom of three girls. Her oldest daughter was 18 months old when she received her ostomy, so she’s been pregnant with and without a bag.
“The only difference that I noticed between pregnancy with an ostomy versus without was how to dress. As my stomach was getting bigger, it was a little harder to disguise my bag. I would mostly wear baggy clothing. With my first pregnancy, I was able to deliver vaginally, I had c-sections with my younger two.”
Katie’s perianal disease got significantly worse after delivering her firstborn. Originally, she was planning to have a temporary colostomy, but her symptoms didn’t improve so she decided to get a total colectomy. Despite her IBD causing her so many issues, Katie was able to conceive on her own without any problems.
She remained on her medications during all three pregnancies. She took Cimzia during her first pregnancy and Stelara during her other two pregnancies. Katie also continued to take her prenatal vitamin, vitamin D, vitamin b12, and calcium supplements. She also breastfed all her children.
“As I was planning for ostomy surgery, my surgeon told me that if he did a total proctectomy- removal of my rectum, my chance of fertility would decrease significantly. I made the choice to keep my rectum in place until I was done trying for more kids. I am now at a place in my life where I am beyond blessed with my three daughters and am ready to have my final surgery to remove my rectum, knowing that I will likely never be able to have more kids.”
Katie says she was amazed at how great she felt while pregnant. It was the first time in a while she was having regular, normal bowel movements and was able to eat anything and everything without having abdominal pains and needing to run to the bathroom.
Katie Nichol was diagnosed with ulcerative colitis in 2018 when she was 30 years old. She went through an emergency subtotal colectomy surgery in October 2019 to remove her diseased large bowel/colon and an ileostomy was created.
“I was told that I would keep my rectal stump to further my chances of being able to have children in the future, but my doctors told me to seriously think about having my family before my next operation, either a total proctectomy or j pouch surgery. Personally, I never thought I would ever be able to get pregnant after surgery as it was such a big life change and a lot of trauma had happened in my abdomen with surgery.”
Katie and her husband had been trying to conceive since before her IBD diagnosis. She didn’t know anyone in real life with a stoma. It made her anxious as she was unsure how her body would respond if she got pregnant and how it would affect her stoma, intestines, and overall health.
“After receiving my ileostomy, I felt so much healthier, happier, and started to think that my body would be able to conceive and start our family. My IBD team and surgeon kept saying at appointments post op that if I wanted a family I would need to start trying in the next couple of years before my next operation.”
Katie says her surgeon wanted to ‘preserve her pipes’ and advised her that a vaginal birth may cause some damage from pushing. Her care team warned her about the possibility of her rectal stump or stoma having the chance to prolapse, so she went ahead and scheduled a c-section.
“One surprise I used to get was when the baby was lying to my stoma side (right hand side) it would sometimes look like I had a hernia around my stoma sight, but the baby was underneath my stoma, this freaked me out a good few times, but it was amazing to see the baby move and my stoma still standing strong on my stomach.”
Katie took prenatal vitamins, iron, and was on a rectal foam for her rectal stump while she was pregnant. Since her stoma surgery, she is no longer on medication. Now she takes suppositories for her rectal stump before bed.
Receiving a Total Colectomy as a mom of two
Kimberly Hooks was diagnosed with ulcerative colitis in 2011. She was 28 years old. Her oldest daughter, Briana, was five years old when Kimberly received her IBD diagnosis. After nine years she was able to reach remission and became pregnant with her second child. Kimberly had a three-stage J-pouch procedure between the fall and spring of 2020. She was an IBD mom of two while all of this was going down.
“I honestly did not want to accept that I had to have three surgeries. I was utterly devastated when I found out that I had to have a total colectomy. My surgeries were scheduled during the height of the pandemic in 2020. Mentally, I could not wrap my head around the fact that I would not be there for my family, especially during this critical time in our lives. I felt hopeless; I felt defeated as a mother and wife.”
Kimberly’s colectomy was unexpected. She did not have time to process anything.
“We often put ourselves last; however, I was not given a choice in this case. The reality was I had two more surgeries to undergo, and I understood that I have a family that loves and supports me. I realized this was my time to ensure that I did what I had to do to heal, recover, and finally be the best mom and wife I could be.”
The experience impacted Kimberly and her family in the most positive way. Her husband and daughters rose to the occasion day after day to offer love and support and saw Kimberly as their hero. She was discharged from the hospital after getting her ostomy on Mother’s Day and her daughters made her signs and gave her flowers.
“All the while, it was me who had to accept that living with an ostomy is something to be proud of. At first, mentally, it was a hard pill to swallow, but after awhile I realized that my ostomy bag saved my life; I will be forever thankful!”
Pregnancy after a Proctocolectomy
Kayla Lewis was diagnosed with Crohn’s disease at age 10. When she was 24, Katie had surgery and received her ileostomy. She says that’s the first-time fertility and her future as a mother crossed her mind. Then, in 2017 she became incredibly sick. She tried what she thought was a temporary ostomy for six months. Then in a follow up scope her GI perforated her bowel.
“When I woke up, I was informed that my entire colon was scar tissue so much that the camera could barely go into the bowel before perforating it. At that point, I was told my options were to leave the colon and rectum or schedule to have both removed, but either way, the ostomy was suddenly permanent. I did not want to resort to that initial surgery till I knew I had exercised all other options available to me including meds, treatments, and diet. Being that surgery was my only hope at gaining life back, I never fully questioned how it would affect my fertility. I did briefly ask the surgeon if I can still have kids one day. He responded with a simple ‘yes’ and I left it at that.”
Even though Kayla says she still would have continued with her proctocolectomy regardless, she wishes she would have thought to ask more questions. Thanks to her ostomy, Kayla has been in remission for 5 years. She felt like family planning could be on her own terms.
“Being 12 weeks pregnant with an ostomy has been much smoother than I had envisioned for myself. I work as a nurse in an operating room, so feeling nauseous and vomiting was my biggest concern early on. I have a small body frame, so maybe once the bump starts to show, I will experience stoma changes. Hopefully, nothing more than just cutting the wafer a bit smaller or larger.”
Currently, Kayla takes Imuran and Allopurinol daily and injects Stelara every 8 weeks. She also takes a prenatal vitamin.
“I was always told that when the time comes for me to become a mom, it would have to be via c-section and not vaginally. I knew this well before my ostomy, because I was warned how difficult it could be for me to heal from tearing as well as could trigger a flare. After my proctocolectomy, I knew without a doubt, I would need to schedule a c-section to play it safe.”
Lori Plung was diagnosed with Crohn’s Colitis in 1980. She was 16 years old. Two years after her diagnosis her disease became severe. As she reflects, she remembers being very worried about ever being healthy enough to be a mom.
“My mom was told by my GI at the time that he didn’t have a good feeling about me being able to have children. This was not shared with me at the time, and this was well before surgery was mentioned to us.”
In 1988, Lori had a proctocolectomy. She remembers lying in the hospital bed before her surgery and a local IBD mom and her toddler coming to visit and show her all that’s possible with an ostomy.
“I believe what was missing, was a conversation with my doctors about how my anatomy would change after surgery and the possibility of scar tissue building up near my ovaries, fallopian tubes, and uterus. Therefore, making it harder to conceive. When it was time for us to try for a family, we couldn’t conceive on our own. In the back of my mind, I knew my insides were shifted around and I had a strong suspicion that mechanically things were not working correctly. We tried for about 6 months and started investigating fertility options. We didn’t wait the full year as often recommended because I was feeling well —and as we know with IBD, when the disease is under control, It’s the optimal time to be pregnant.”
Lori went through many fertility treatments and said no one blamed her proctocolectomy as the culprit. She ended up having scar tissue on one of her fallopian tubes. She got pregnant with her first child through IUI (Intrauterine insemination) and her second through IVF.
She remembers telling her husband she didn’t want their kids to have memories of growing up with a “sick mom.” She had three more IBD-related surgeries, numerous hospital stays, and says her energy was drained, but she prided herself on her inner strength and determination to always push through no matter what.
Lori says if she could talk to her former self, she would tell herself not to feel guilty about needing to stay home and do quiet activities because she was having a hard Crohn’s day.
“Not to be hard on myself when we sat and watched Barney (my daughter Dani’s favorite) or Teletubbies (my son Jesse’s favorite) because I was too exhausted to move. Not to feel guilty when everything fell on my husband, especially through each surgery and recovery. It’s ok to ask for help and not feel guilty.”
Lori’s kids are now 23 and 26. She still can’t believe she’s been able to be a mom and be there every step of the way as her kids thrived through each stage and season of life.
Advice for fellow ostomates about pregnancy
If you have an ostomy, you can have a baby. Don’t let your ostomy hold you back. Work with your care team to know when the right time is and if there would be any issues with getting pregnant.
The body has a way of coping no matter what. Your past trauma prepares you to handle the unknown and celebrate every win—big or small, along the way.
Keep the faith. You may run into roadblocks but exhaust all options before you throw in the towel. Miracles happen every day, stay hopeful.
Find a care team well-versed on IBD. A medical team who understands your complexities and who is supportive will make your experience with pregnancy and an ostomy a positive one. Have all hands-on deck and connect with your IBD team, surgeon, ostomy nurse, and Maternal Fetal Medicine (MFM) group. It will give you a sense of security as you embark on this wonderful and exciting adventure. Your ostomy nurse will be a huge resource—as your belly grows, so will your stoma.
Be mindful of ultrasound gel. Be prepared at OB-GYN and MFM appointments by bringing extra bags and wafers. Try and make sure your ostomy is empty prior to ultrasounds and then fold it up or hold it up to keep it out of the way. Ultrasound gel can make the adhesive come off. Many of the IBD moms I spoke to said they change their bag after every ultrasound to make sure all the gel is off their stomachs, so the new bag can stick on properly.
Stoma size and output. Don’t be alarmed if the size of your stoma changes as your baby bump grows. Stomas go back to their pre-pregnancy size after babies are born. For some, output can get thicker, and you can have more gas, but that’s likely due to being able to tolerate more fruits and veggies. As your belly grows, your bag may dangle rather than being tucked away and become a bit uncomfortable.
Remember everyone’s journey is unique. While each of these amazing women are sharing positive pregnancy experiences, don’t forget all the roadblocks, flares, and health issues they had to overcome to get to this point.
Ostomies gave you life and enable you to bring life into this world. For many IBD moms it’s surreal to experience your body go from attacking itself to nurturing and creating a life. Pregnancy provides a renewed love and appreciation for all that our bodies are capable of, despite our IBD.
Connect with other ostomates over social media and through support groups. Don’t hesitate to reach out to women who are living your same reality on social media. We’re all a family. Peer to peer support is amazing, reach out to fellow IBD moms. Here are the Instagram handles for the women featured in this article. Give them a follow!
When she’s not on the runway during Fashion Week or gracing magazines, Keyla is doing all she can to be an advocate for IBD. She was diagnosed with ulcerative colitis eight years ago, but this year, she found out she has Crohn’s disease.
“As a child, I always had intense stomach aches, and difficulty going to the restroom. Sometimes I’d even pass out. Doctors always told me it was constipation. It wasn’t until I was at work one day and passed out that my boss convinced me that I needed additional medical attention.”
At that point, Keyla was having 8-10 bloody bowel movements a day. Prior to ulcerative colitis, she was diagnosed with celiac disease and went on a strict gluten free diet. But unfortunately, the symptoms persisted. She got a second opinion and that’s when she was diagnosed with IBD. Keyla recalls that in the beginning moments of her patient journey she struggled to grasp that chronic illness meant her disease was a “lifelong partner” and that IBD would change her life in unimaginable ways.
The journey to an ileostomy
Fast forward two years after her IBD diagnosis and Keyla rushed to the hospital after noticing unexplained bleeding. Turns out she was hemorrhaging from her uterus and was told she had uterine cancer.
“After having a partial hysterectomy and no longer being able to have children, I’m not sure if it was the stress from everything happening but my UC was never able to be controlled after that. From failed medications like Methotrexate and Remicade to looking like Quasimodo from eye swelling caused by Entyvio and having less hair than a toddler from being on Humira. My body and I had enough. My clinical team and I decided it was time to evict my colon.”
In September 2018, Keyla began her 2-phase j-pouch procedure. Unfortunately, the surgeon discovered her colon was much more diseased than he had thought. Keyla’s colon had become fused to her stomach, resulting in part of her stomach to be removed as well.
“For 2 months I felt amazing with my ostomy and was excited for my reversal in December 2018. But shortly after, I began developing chronic pouchitis, could not gain weight, required IV fluids regularly, with a failed midline and then needed a central line. We decided to disconnect my j-pouch and create my end ileostomy in September 2020.”
All was well until January 2021 when Keyla started bleeding from her ileostomy. It was at this point she was diagnosed with Crohn’s disease and started Stelara. After a few hospital stays and some improvement with her symptoms, she began to experience an increase in rectal pain, urgency, and discomfort, so Keyla needed yet another surgery.
October 27th (less than one month ago!) she had her j-pouch removed with a proctectomy and officially made her stoma permanent. She’s recovering from this surgery as we speak.
How Modeling Came into Play
After reading that challenging medical history, you may wonder how Keyla finds the time to focus on a profession. Modeling is something Keyla always wanted to do when she was younger, but she was too embarrassed to tell anyone. She sort of stumbled into it. Keyla had done a fun photoshoot with a friend and those photos were shown to another friend who works in the fashion industry. Before she knew it, Keyla was a published model!
“Sometimes I still can’t believe I’m living my dream despite having health issues. I had the honor to walk at London Fashion Week this year and have been published in magazines out of the US, UK, and Canada.”
SURREAL Lifestyle Magazine and 4 Seasons Magazine have been her favorite features thus far because the publications have allowed her to speak about her IBD advocacy work. Modeling serves as the perfect platform for spreading awareness to others about ostomies and life with Crohn’s.
“I always try to take the time for myself and make sure I am doing the things my mental health needs to stay focused and feel well. I also try to own those feelings. If I’m symptomatic, I try to accept it and openly communicate my struggles with others.”
Keyla says having an ileostomy can make modeling a bit more complicated, especially if she has to wear form fitting or tight clothing. If that’s the case, she ends up having to empty her bag more times than she really needs to. She’s grateful her modeling gigs have followed strict COVID guidelines, which helps her feel more at ease during these uncertain times.
When a project allows, she especially enjoys getting to show her ostomy in photos or on the runway. She chalks that up as her biggest career win of all!
A model mother
Keyla’s main focus whether she’s modeling or fighting a flare in the hospital is her family. She has an 11-year-old son who inspires and motivates her to push through the difficult days.
“IBD has made motherhood challenging. Without chronic illness motherhood can be difficult as it is, adding health issues on top of it makes it more complicated. I constantly question whether I’m making the right choices. But I also tell myself all I can do is try and hope that I’m being a good role model for him.”
It pains her to see how her son gets anxious about her IBD and healthcare. He’s been by her side every step of the way since she was diagnosed after he was born. Despite the highs and lows, Keyla feels her son is stronger because of her illness and has an innate sense of empathy and understanding for others.
If her IBD has taught her anything it’s that good days give us happiness and bad days give us experience. Modeling has enabled Keyla to be comfortable in her own skin and live the life she imagined long before Crohn’s was ever a part of who she was.
As an IBD mom of three who stayed on my Humira (adalimumab) injections until late into my third trimester with all my pregnancies, I recognized the importance of contributing to ongoing research about the safety and efficacy of biologics. When I was approached to participate in the PIANO (Pregnancy Inflammatory bowel disease And Neonatal Outcomes) study for my pregnancy this past year I jumped at the opportunity. While I knew staying on my medication until 37 weeks pregnant would pass Humira through to my baby and that it is considered to be safe, I didn’t know much beyond that.
My son Connor is 8 weeks today. The day of my C-section blood samples were taken from him, me, and my umbilical cord. The purpose of the samples was to measure the concentration of the Humira at the time of delivery. The process in the hospital was simple. Detailed instructions were mailed to me at home ahead of time. When I walked into the hospital for my scheduled C-section my husband and I handed over a small box that included three vials, an ice pack, and proper packaging for the transfer from St. Louis to California to the nurse who was prepping me for surgery. Once all the samples were ready to go my husband made a quick stop at FedEx to hand over the package and voila the science of it all was on its way.
The Results
The past few weeks we’ve anxiously awaited the results. This week, we received them. I have an almost 4.5-year-old son, a 2.5-year-old daughter, and a newborn. With each pregnancy—Crohn’s-wise, the experience was flawless. I felt like a “normal” person. Foods that typically trigger me, didn’t cause any issues. If I wanted a cup of coffee, I didn’t pay the price. It felt glorious to have zero abdominal pain for all those months and know that my babies were thriving in utero. I credit my own health and deep remission and my children’s health to the fact that I chose to follow my care team’s recommendations and stay on Humira until the final weeks of my pregnancies.
When the results popped up in my email inbox, I was nursing Connor. I felt a few emotions, more than I had anticipated. I hesitated to open it. Even though I could see Reid and Sophia watching TV and know how healthy they are, it still made me feel a rush of mom guilt to know that I needed a heavy-duty medication to bring all three of my children into this world and that even though studies like PIANO have shown the safety profile, that as IBD moms we still worry and wish we didn’t need to do injections or get infusions while a life is growing inside of us.
I texted my husband Bobby while he was at work and expressed how I was feeling. His response, “It’s all good babe, I’m sure it’s emotional but kids are all healthy and in good shape so just thankful for that. You did good.” Having a supportive partner through your patient journey and especially through parenthood makes all the difference.
Here are my PIANO study findings. I stopped medication at 37 weeks, and my last injection was 16 days prior to C-Section and this blood test.
My blood—7.3 mcg/mL
Connor’s blood—6.8 mcg/mL
Cord blood—5.9 mcg/mL
When I saw the numbers, my eyes filled with tears. Even though just looking at the numbers didn’t mean a whole lot, it just showed me that my baby had medication in his system, and it made me feel sad. I knew this would be the case—but I want to be transparent that it did upset me, even though I know it was for the best and have seen how my other children have thrived despite their exposure.
I waited to share this so the PIANO study’s lead organizer, Dr. Uma Mahadevan could weigh in and provide further explanation for not only myself, but for our community. She told me that in the PIANO study, the concentration of Humira for baby on average is 9.4 mcg/ml (range 2.5-26) and for moms 25 mcg/ml (range 0-56.4). As stated above, I was at 7.3 mcg/ml and Connor was 6.8 mcg/ml.
“Cord blood is the blood from the baby that is left in the umbilical cord and placenta after birth. It comes from the baby, so those concentrations are similar. Beginning around week 14 of pregnancy the placenta has a receptor called FcRn. This grabs antibody by the “Fc” portion and pulls it actively from mom to baby. This is most efficient in the third trimester when 80% of antibody transfer occurs. Since Humira is an antibody, it gets pulled across the placenta as well.”
Dr. Mahadevan went on to say that baby often has more drug at birth than the mom, but that was not the case for me. The PIANO study has shown several positive outcomes for IBD moms:
There is not an association between the amount of drug present in a baby at birth with infections.
Even though there was no increased risk of infection seen based on exposure to anti-TNF or on drug level at birth, in theory these babies (like Connor) are considered immunocompromised until no drug is present. For Humira that’s about 3 months, for Remicade (infliximab) that’s about six months.
“My advice to moms is that all the risks to the baby seem to come from disease flare rather than from medication. In a large French study, the risk of infection in baby was in moms who flared in the third trimester, not based on anti-TNF exposure. Risk of pre-term birth is increased with disease activity, not with anti-TNF medication. Risk of miscarriage comes with disease activity, not anti-TNF use. There is a clear and significant risk from having a flare during pregnancy. Compared to babies of IBD moms not exposed to medications, there is no evidence of increased harm to the baby (at least out to 4 years of age) from TNF exposure,” explained Dr. Mahadevan.
Hearing this was music to my ears and was extremely comforting. Point being—there’s a much greater likelihood of pregnancy complications if your IBD is not managed and if you flare than if you stay on your medication and keep your IBD controlled.
“We have completed our breastfeeding study which showed very minimal transfer (a fraction of what transfers by placental blood) and no evidence of harm to baby for breastfeeding when a mother is on anti-TNF.”
Knowing this about breastfeeding gives me great peace of mind as I continue the journey with my son, while still managing my Crohn’s by taking my Humira.
I also want to add that Dr. Mahadevan and her research team have been a huge support to me throughout the entire study. When she read a draft of this article and saw how I felt when I received the email with the blood results, she asked for recommendations about how to better deliver the findings to women. This meant a lot—I suggested sharing the range in blood concentration similar to how lab results are delivered on a patient portal and following up with an email or phone call to explain what the numbers mean further. Those touchpoints of support can make a big difference. I also shared my results over the patient portal with my GI and she called me to discuss them as well, which was helpful.
My three miracles. All healthy. All here safe and sound. Growing and thriving, despite exposure to biologics.
Interested in participating in the PIANO study? There’s always a need for more women to enroll! So far, 1,700 women have done so. There’s especially a need for women on newer drugs like Stelara, Entyvio, and Xeljanz.Click here to get involved.
I wish when I was diagnosed with Crohn’s in July 2005 that I would have had a look into the future to know that the same body that has gone to war with me time and time again would also bring three miracles into the world.
Wednesday, July 14, 2021 my family grew to five and I became an IBD mom to three kids, four and under. Our latest addition, Connor Christopher, completes our crew.
On the day of my scheduled C-section and Connor’s birth, I felt overwhelmed with emotions. So many thoughts and feelings came to mind—from knowing I would never be pregnant again to recognizing that from this point forward I would never feel the deep remission I experience when I carry a life inside of me.
There are so many sharp contrasts in what pregnancy and deliveries have meant in comparison to life with Crohn’s.
The unpredictable nature of Crohn’s but having three scheduled C-sections all go to plan.
The way it feels to head to the hospital for a good reason.
The fact that my Crohn’s comes up as an aside when conversing with medical professionals and my pregnancies and being a mom comes first as my “identity.”
The perspective and strength IBD has given me when it comes to coping with painful pregnancy-related issues like SI Joint Dysfunction, Symphysis pubis dysfunction, acid reflux that required prescription medication, and C-section recoveries.
The incredible pride and joy I feel knowing that the girl who found out she had a debilitating lifelong disease 16 July’s ago, has carried three pregnancies to term and has a family of five to show for it.
If you’re like me and have dreamed of one day being a mom, explore all options to get there and don’t let your IBD hold you back. You are not less than because of your chronic illness, you are more capable than you think. Your body may surprise you in ways you could never imagine. To me–my children are proof of all that’s possible despite chronic illness.
When I was 21 and found out I had Crohn’s disease, one of my greatest fears was the uncertainty of what my future would look like personally and professionally. While the unknown was daunting and overwhelming, I never really allowed myself to think of not becoming a mom because of my disease. Instead, I shifted my focus to recognizing that getting there may take some detours and careful planning.
Thank you for all the well wishes for my family over the years. Your kind words, interest, and prayers, have meant the world to us and helped me to realize that even though I’m an “IBD” mom… I’m so much more.
July has been my least favorite month for the last 16 years of my life. It’s the month I was diagnosed with Crohn’s disease. The month I had an abscess the size of a tennis ball in my small intestine. The month I was put on a biologic medication. The month I had a bowel obstruction that led to bowel resection surgery. You get the picture. But now, it’s about to be the month I give birth to my third child. Baby boy is about to flip the script on a month that previously brought dread. Instead, I can focus on celebrating his new life and all his birthdays and milestones for years to come.
Photo credit: Heather Roth Photography
As a woman with IBD, motherhood has continually provided me with reminders of all my body is capable of despite my chronic illness. It’s shown me what once may have seemed unattainable, is possible. Motherhood is a constant reminder that my body hasn’t always been at odds with me. That despite the challenges and the pain all these years, it still afforded me the opportunity to carry healthy babies to term. Rather than feeling like my body is the enemy, motherhood has made me think of my body as my ally. We’ll have our ups and downs forever, but for 27-plus months it’s been a safe haven for my children. I’ve enjoyed flawless pregnancies and deep remission. It’s given me a chance to feel like a “typical healthy” woman, if only for a moment. Pregnancy has felt like a security blanket wrapped around me, and is soon to be no more. With that, comes an immense amount of gratitude, as well as anxiety, as from this point forward it’s just me and my Crohn’s…no buffer.
It feels weird going into this month of July not worrying about what could be, but rather being excited about what’s to come. When I was younger and prior to getting married, I avoided making plans in the month of July—especially life changing ones! My wedding, vacations, etc. were all coordinated around this month because I didn’t trust the way my body could blindside me.
Preparing for the shift in health
While I am ready for my son to be here and over the discomforts of pregnancy, a part of me is sad that I’ll never feel this well again. Within days of delivering Reid and Sophia, the gnawing abdominal pain associated with IBD crept back into my life before I even had a chance to bring my babies home. I expect the same will happen this time. While it was discouraging then and will make me feel the same now, I’m hopeful the shift in hormones won’t throw me into a postpartum flare and that I’ll find comfort in knowing from this point forward, every medication, every procedure, and every hospitalization will be done without a life growing inside of me.
Over these last nine months I’ve enjoyed eating popcorn with my kids for the first time, drinking a cup of coffee without a need to use the bathroom right after, and nearly 40 weeks of baby flutters and kicks instead of pain. It’s been a great run. I hope my experiences through family planning, conception, pregnancy, and motherhood provide you with an understanding that IBD doesn’t mean you can’t have a family. While many sadly struggle with infertility, complications, or not physically being well enough to carry a baby, it’s very possible that you can. Whether it’s stories like mine or the opposite, remember each of our journeys is unique. Don’t base your experience and capabilities on someone else, but when something or someone inspires or empowers you to go after what you dream of, hold on to that.
Baby boy will not only complete our family but serve as a constant reminder of all that is possible. While my Crohn’s has brought a great deal of heartache it’s also allowed me to gain a unique perspective and to never take life’s miracles and triumphs for granted.
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