Category: Pregnancy + Motherhood

Inside IBD Pregnancy with a GI Psychologist: What Patients Need to Know

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Finding out you’re pregnant can be one of the most profound moments of one’s life; and, if you’re living with Crohn’s disease or ulcerative colitis, that moment is almost immediately followed by a flood of questions that others don’t have to think about. Will my IBD flare? Is my medication safe? What does this mean for my pregnancy? Can I even do this?

The answer to that last question is yes, absolutely, yes. But it takes a team, a plan, and attention to more than just your GI symptoms. As an IBD mom of three, I’ve been in your shoes and know how it feels to bring a life into this world with so many unknowns.

This week on Lights, Camera, Crohn’s we hear from Licensed Clinical Psychologist, Dr. Antonia Repollet, who specializes in gut-brain health at GI Psychology. Dr. Repollet is a fellow Crohnie and a mother. She works with people navigating exactly this intersection every day. She shares what she wants every person with Inflammatory Bowel Disease (IBD) to know about pregnancy: the medical side, the emotional side, and the parts that often get left out of the conversation entirely.

Your Gut Is Already Under Pressure

Pregnancy is a full-body experience. Hormonal shifts in progesterone, estrogen, and cortisol affect mood and energy, and they directly shape how the gut functions. Progesterone relaxes smooth muscle, slowing the movement of food through the digestive tract (Alqudah et al., 2022). Estrogen influences gut permeability and the composition of the gut microbiome (Chen et al., 2025). Cortisol, the body’s primary stress hormone, can heighten GI sensitivity and drive inflammation (Cherpak, 2019). Together, these hormonal changes can increase bloating, reflux, and constipation even in people without IBD. Add a growing uterus physically displacing digestive organs, and it’s no wonder the gut feels unsettled!

Whether you’re a first-time mom-to-be or someone who has had several children, we know how complicated it can feel to navigate these changes in your body on top of IBD. It’s not unusual to feel a bit overwhelmed.

“For someone with Crohn’s or ulcerative colitis, these changes land on an already-sensitive system, and the hormonal picture matters more than people often realize. Hormones are among the key messengers of the gut-brain axis, the two-way communication highway between the digestive tract and the nervous system,” explain Dr. Repollet. “During pregnancy, when hormone levels are shifting, this axis is working overtime, and stress often amplifies this further. For example, anxiety about your health, your pregnancy, your body, your medications: all of it feeds back into the gut through hormonal and neurological pathways, and the gut sends it right back to the brain. Thus, pregnancy can disrupt this loop.”

Why Remission Before Conception Matters

Here’s something important: research consistently shows that the best predictor of IBD staying stable during pregnancy is whether disease was well-controlled at the time of conception (Abhyankar, 2013). Studies have found that approximately 66% of IBD patients who conceive during active disease experience continuing or worsening symptoms throughout pregnancy (Hashash & Kane, 2015).

Dr. Repollet says, “Remission going in doesn’t guarantee smooth sailing, but it does dramatically improve the odds for both the pregnant person and the developing fetus.”

Looking back, I’m grateful for the timing of my bowel resection surgery when I was engaged, because it put me into surgical remission, and helped prep my body for pregnancy after I got married. Prior to surgery, I had never heard the word “remission” from my gastroenterologist. With IBD pregnancies, this is where the “rule of thirds” comes in. One third of women experience an improvement of IBD symptoms, one third stay the same, and one third see an uptick.

Active disease during pregnancy is associated with increased risks of miscarriage, preterm birth, low birth weight, and other complications (Boyd et al., 2015). This is why the conversation with your gastroenterologist needs to happen before you start trying to conceive, not after a positive pregnancy test.

The Medication Questions

Please don’t stop without talking to your doctors!

“One of the most common things I hear from IBD patients considering pregnancy is some version of: “I thought I should stop my medication just to be safe.” The instinct makes complete sense, because you want to protect your pregnancy. But stopping IBD medication without medical guidance can put you and your fetus at greater risk by triggering a flare,” Dr. Repollet advises.

Many IBD medications, including biologics like infliximab, adalimumab, and certolizumab, are considered safe during pregnancy and are recommended to maintain remission (Mahadevan et al., 2019; Peifer, 2024). Some, like methotrexate, do need to be stopped well before conception, and this applies regardless of which reproductive organs you have (Peifer, 2024). This is important for both partners, as medication safety around conception is a conversation for anyone planning to conceive, regardless of gender. Your GI and obstetrician (OB) should be making these decisions together, with your input.

Build Your Team Before You Need Them

A whole-person approach to pregnancy with IBD means your care team should include more than just your GI and OB. Depending on your history, you may also benefit from a maternal-fetal medicine specialist (an OB with advanced training in high-risk pregnancies), a dietitian who understands IBD and prenatal nutrition, a lactation consultant familiar with chronic illness, and a mental health provider who specializes in the gut-brain connection. According to findings from the Global Consensus on IBD and Pregnancy, all IBD pregnancies are deemed “high risk.”

Dr. Repollet tells me the last one matters more than people realize.

The Part That Doesn’t Get Talked About Enough: Your Mental Health

People with IBD are two to three times more likely to experience anxiety and depression than people without (Neuendorf et al., 2016). Rates of anxiety in IBD hover around 32%, and depression around 25% (Barberio et al., 2021). These numbers don’t go down during pregnancy. If anything, the uncertainty, the body changes, the fear of flares, and the weight of managing a chronic illness while growing a new life can make them go up.

“And here’s what’s easy to overlook: your emotional state is not separate from your physical symptoms. Stress releases hormones that increase inflammation. Anxiety heightens gut sensitivity. When you’re scared that every cramp might be a flare, that fear itself can worsen symptoms. The mind and the gut are in constant conversation,” says Dr. Repollet.

This is why mental health support isn’t a “nice to have” treatment during pregnancy with IBD and should be part of the medical plan.

Evidence-based approaches like Cognitive Behavioral Therapy (CBT) for GI conditions (CBT for GI) (Gracie et al., 2017) and gut-directed hypnotherapy (Keefer et al., 2013) have been shown to reduce GI symptoms, lower flare frequency, and improve quality of life in IBD patients. These approaches are safe during pregnancy, non-pharmacological, and can be genuinely life-changing for anyone who feels like they’re white-knuckling through their pregnancy.

A Story That Might Sound Familiar

“One of my patients (I’ll call her “Alex”) was 12 weeks pregnant and living with Crohn’s. Inflammation was well-controlled, but daily abdominal cramping and pain, diarrhea, and racing thoughts about whether symptoms were affecting the pregnancy had taken over. The response from providers (e.g., “It’s just pregnancy hormones.”) left Alex feeling dismissed and alone.”

With gut-brain therapy, Alex learned to track symptom patterns, practice diaphragmatic breathing, and use clinical hypnosis to interrupt the anticipatory anxiety that was amplifying physical symptoms.

Dr. Repollet says, “Over eight weeks, symptoms decreased, sleep improved, and (maybe most importantly) there was a renewed trust in the body’s signals. Feeling prepared going into delivery and postpartum was something Alex hadn’t expected to feel, but did. This is a reminder that emotional care is physical care. They are not separate things.”

What to Watch For and When to Reach Out

Consider seeking mental health support if you are:

  • Struggling to eat or sleep due to GI symptoms or anxiety
  • Experiencing GI symptoms that feel emotionally overwhelming, are hard to separate from anxiety, or seem to worsen with stress
  • Experiencing distress (whether related to your IBD, your pregnancy, or both) that is interfering with daily life
  • Having fears about flares, delivery, or being a high-risk patient that feel consuming
  • Dealing with resurfacing trauma from prior pregnancy loss, difficult medical experiences, or a complicated diagnosis journey
  • Simply wanting a space to process this enormous thing you are navigating

Please know that you don’t have to be in crisis to deserve support.

The Postpartum Chapter

Pregnancy often gets most of the attention, but postpartum is its own significant transition for people with IBD.

“Hormonal shifts after delivery, sleep disruption, feeding decisions in the context of your medication regimen, and the emotional adjustment to new parenthood can all influence disease activity. Having a plan for the postpartum period, including who on your care team you’ll check in with and how, should be part of a complete prenatal plan,” explains Dr. Repollet.

I remember during all my pregnancies how fearful I was about how I would feel after delivery. By staying on my medication (Humira), it helped keep symptoms at bay not only during my pregnancies, but also after my scheduled c-sections. I required a short burst of steroids after my second child was born, but luckily never experienced a full-blown flare.

It can be easy to place all your focus on your baby but be mindful of how your body is speaking to you through symptoms so you can communicate this directly to your care team, before you’re dealing with an acute flare. Trust that by sharing what you’re going through you’re doing what is not only best for yourself, but what’s best for your family.

You Deserve Coordinated, Whole-Person Care

Pregnancy with Crohn’s or ulcerative colitis is possible. Many people do it every year with the right support, effective communication between providers, and attention to both the physical and emotional layers of what they are carrying.

“At GI Psychology, we specialize in helping people with IBD and other GI conditions navigate exactly these kinds of life transitions. Our clinicians are trained in gut-brain therapies including CBT-GI and gut-directed hypnotherapy, and we work via telehealth across all 50 states + Washington D.C., so support is accessible wherever you are. We also offer an 8-week virtual IBD Psychotherapy Group for adults living with Crohn’s and ulcerative colitis, designed to provide evidence-based tools alongside community with people who truly get it,” says Dr. Repollet.

If you’re planning for pregnancy, currently pregnant, or navigating the postpartum period with IBD, you don’t have to figure it out alone.

Learn More About GI Psychology:

Participate in IBD Pregnancy Research

References

Abhyankar, A., Ham, M., & Moss, A. C. (2013). Meta-analysis: the impact of disease activity at conception on disease activity during pregnancy in patients with inflammatory bowel disease. Alimentary pharmacology & therapeutics, 38(5), 460–466.

Alqudah, M., Al-Shboul, O., Al Dwairi, A., Al-U´Datt, D. G., & Alqudah, A. (2022). Progesterone inhibitory role on gastrointestinal motility. Physiological research, 71(2), 193–198.

Barberio, B., Zamani, M., Black, C. J., Savarino, E. V., & Ford, A. C. (2021). Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis. The lancet. Gastroenterology & hepatology, 6(5), 359–370.

Boyd, H. A., Basit, S., Harpsøe, M. C., Wohlfahrt, J., & Jess, T. (2015). Inflammatory bowel disease and risk of adverse pregnancy outcomes. PloS One, 10(6), e0129567.

Chen, M., Wang, J., Yang, Y., He, Y., & Li, L. (2025). The interplay of estrogen, gut microbiome, and bone immunity in osteoporosis. Cell communication and signaling : CCS, 23(1), 516.

Cherpak C. E. (2019). Mindful Eating: A Review Of How The Stress-Digestion-Mindfulness Triad May Modulate And Improve Gastrointestinal And Digestive Function. Integrative medicine (Encinitas, Calif.), 18(4), 48–53.

Gracie, D. J., Irvine, A. J., Sood, R., Mikocka-Walus, A., Hamlin, P. J., & Ford, A. C. (2017). Effect of psychological therapy on disease activity, psychological comorbidity, and quality of life in inflammatory bowel disease: a systematic review and meta-analysis. The Lancet Gastroenterology & Hepatology, 2(3), 189–199.

Hashash, J. G., & Kane, S. (2015). Pregnancy and inflammatory bowel disease. Gastroenterology & Hepatology, 11(2), 96–102.

Keefer, L., Taft, T. H., Kiebles, J. L., Martinovich, Z., Barrett, T. A., & Palsson, O. S. (2013). Gut-directed hypnotherapy significantly augments clinical remission in quiescent ulcerative colitis. Alimentary Pharmacology & Therapeutics, 38(7), 761–771.

Mahadevan, U., Robinson, C., Bernasko, N., Boland, B., Chambers, C., Dubinsky, M., … & Kane, S. (2019). Inflammatory bowel disease in pregnancy clinical care pathway: A report from the American Gastroenterological Association IBD Parenthood Project Working Group. Gastroenterology, 156(5), 1508–1524.

Neuendorf, R., Harding, A., Stello, N., Hanes, D., & Wahbeh, H. (2016). Depression and anxiety in patients with Inflammatory Bowel Disease: A systematic review. Journal of Psychosomatic Research, 87, 70–80.

Peifer, R. (2024, January 26). IBD and pregnancy: What you need to know. Crohn’s & Colitis Foundation. https://www.crohnscolitisfoundation.org/blog/ibd-and-pregnancy-what-you-need-to-know

When Your Body Doesn’t Follow the Rules: The Overlap Between Endometriosis and IBD No One Talks About

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For many women, living with chronic illness means constantly decoding what our bodies are trying to say. When you have inflammatory bowel disease (IBD), whether Crohn’s disease or ulcerative colitis, you get used to tracking symptoms, identifying triggers, and advocating for yourself.

But what happens when something doesn’t quite fit the IBD pattern and the usual narrative?

For a significant number of women, the answer may be endometriosis, a condition that often overlaps with IBD in ways that can delay diagnosis, complicate treatment, and intensify daily life. This week on Lights, Camera, Crohn’s we break down the possible connection, what to watch for, and how to advocate for the care you deserve. I don’t personally have endometriosis with my Crohn’s, so you’ll hear from 10 women who live this reality as they transparently share what it’s like for them and what they’ve learned along the way.

What Is Endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus. This can happen on the ovaries, fallopian tubes, bowel, bladder, and other pelvic structures. This tissue still responds to hormonal cycles, which can lead to:

  • Inflammation
  • Pain
  • Scar tissue (adhesions)
  • Organ involvement (including the intestines)

I ran a poll in my Instagram Stories asking about IBD and endometriosis. Of the 85 votes, 27% of women said they have both, 31% said they think they may have both, and 42% said they don’t have both. Those numbers speak volumes.

What the Stages of Endometriosis mean

Endometriosis isn’t staged the same way cancers are, it’s not about how dangerous it is, but about how much disease is seen during surgery. The most used system is from the American Society for Reproductive Medicine, which divides endo into four stages based on location, depth, size of implants, and scar tissue (adhesions).

Here’s what each stage means:

Stage I — Minimal

  • Small, superficial patches of endometrial-like tissue
  • Little to no scar tissue
  • Often found on the ovaries or pelvic lining

What it feels like:
Symptoms can be mild… or surprisingly intense. Some people with Stage I still have significant pain.

Stage II — Mild

  • More lesions than Stage I
  • Some may be deeper (not just surface-level)
  • Minimal adhesions may start forming

What it feels like:
Pelvic pain, painful periods, sometimes pain with ovulation. Still very variable.

Stage III — Moderate

  • Many lesions, including deep implants
  • Presence of adhesions (organs may start sticking together)
  • Small cysts on ovaries called endometriomas may appear

What it feels like:
More consistent pelvic pain, possible pain with sex, bowel symptoms depending on location.

Stage IV — Severe

  • Extensive deep lesions
  • Thick adhesions (organs can be significantly stuck together)
  • Larger ovarian endometriomas (“chocolate cysts”)
  • May involve bowel, bladder, or other organs

What it feels like:
Chronic, often severe pain; higher likelihood of fertility challenges; symptoms tied to whichever organs are affected.

The most important thing to understand

Stage does NOT equal pain level. Someone with Stage I can be debilitated, while someone with Stage IV might have fewer symptoms. That’s one of the most frustrating parts of endo, it doesn’t behave predictably. That being said, just because you may have Stage 1 should not diminish your experience as a patient or the suffering you are coping with.

Why Endometriosis and IBD Get Confused

The overlap between endometriosis and IBD is more than coincidental, it’s believed to be symptomatically and biologically intertwined.

Both conditions can cause:

  • Abdominal pain and cramping
  • Diarrhea or constipation
  • Bloating
  • Fatigue
  • Nausea
  • Pain with bowel movements

If you already have IBD, it’s easy to assume these symptoms are just part of a flare.

Hormonal Influence

Endometriosis is hormone-driven, meaning symptoms often worsen:

  • Before or during your period
  • Around ovulation

Some women with IBD also report symptom fluctuations tied to their menstrual cycle, which can blur the lines even further.

Inflammation Connection

Both conditions involve chronic inflammation, and emerging research suggests there may be shared immune pathways. Women with IBD may have a higher likelihood of developing endometriosis—and vice versa.

Red Flags That It Might Be More Than IBD

If you’re living with IBD, here are signs that something else, like endometriosis, could be at play:

  • Pain that follows your cycle (gets worse before/during your period)
  • Severe pelvic pain that feels different from your typical IBD pain
  • Pain during or after sex
  • Pain with bowel movements specifically during your period
  • Infertility or difficulty conceiving
  • IBD treatments aren’t improving certain symptoms

One of the biggest clues? When your gut symptoms don’t fully respond to your usual IBD medications.

The Diagnostic Challenge

Diagnosing endometriosis isn’t straightforward.

  • Imaging (like ultrasound or MRI) can help, but may miss smaller lesions
  • The gold standard is laparoscopic surgery, where a specialist can see and biopsy the tissue

For women with IBD, this can feel overwhelming, especially if you’ve already been through scopes, scans, surgeries, and procedures. But getting clarity matters.

How It’s Treated

Treatment depends on severity, symptoms, and your goals (like pain relief vs. fertility).

Hormonal Therapy

  • Birth control pills, patches, or IUDs
  • Medications that suppress estrogen

These aim to reduce or stop the growth of endometrial tissue.

Pain Management

  • NSAIDs (with caution in IBD, especially Crohn’s)
  • Other pain-modulating medications

Surgical Treatment

  • Laparoscopic excision of endometriosis lesions
  • Particularly helpful for more advanced disease

Coordinated Care

If you have both IBD and endometriosis, your care team may include:

  • A gastroenterologist
  • A gynecologist (ideally one who specializes in endometriosis)
  • A colorectal surgeon if bowel involvement exists

This team-based approach can make a huge difference.

Living With Both: Practical Advice

Track Your Symptoms Differently

Don’t just track food and bowel habits. Be mindful of:

  • Your menstrual cycle
  • Pain timing and location
  • Symptom patterns across the month

 Patterns can reveal what labs and scans can’t.

Don’t Dismiss “New” Pain

You know your IBD. If something feels different, it probably is. Trust that instinct.

Be Specific With Your Doctors

Instead of saying “I have more pain,” try:

  • “This pain is worse during my period.”
  • “It feels lower in my pelvis than my usual Crohn’s pain.”
  • “My GI symptoms spike even when my inflammation markers are normal.”

Details help providers connect the dots faster.

Be Careful With Medications

Some common treatments for one condition may complicate the other:

  • NSAIDs can aggravate IBD
  • Hormonal treatments may affect GI symptoms differently for each person

Always loop in both your GI and GYN teams.

Advocate for a Second Opinion

Endometriosis is often underdiagnosed and misunderstood. If you feel dismissed, it’s reasonable to seek a specialist, especially one experienced in excision surgery, not just symptom management.

The Emotional Side No One Talks About

Living with one chronic illness is hard enough. Adding another, especially one that affects fertility, hormones, and daily pain, can feel overwhelming.

There’s often:

  • Frustration from delayed diagnosis
  • Anxiety about symptoms overlapping
  • Exhaustion from managing multiple specialists

If this is your reality, you’re not alone and you’re not imagining it.

The Patient Experience: What women with IBD and endometriosis want you to know

Madison: “I could write a novel about endometriosis and IBD! I’ve had three surgeries for endometriosis, and it’s been found on my bowel in two of the surgeries. I eventually asked my GI if it could have been endo all along (it’s not), but it’s interconnected.

She was diagnosed with ulcerative colitis in 2016 but had symptoms for a few years prior. Madison was diagnosed with endometriosis in August 2020 after unexplained infertility but more importantly, debilitating pain once she stopped birth control in early 2019. Looking back, she says her symptoms probably started at puberty (12 years old) but she didn’t know what was normal. 

“I had surgery in August 2020 to confirm the endometriosis diagnosis and have had 2 additional surgeries since then. I wish I would have known during my first surgery that there’s a difference between an ablation of the endometriosis and an excision of the endometriosis,” she explains. “The best way I’ve had it explained to me is imagine burning weeds in your yard vs pulling them out by the root — if you burn the weeds, they will come back. You need to pull them out by the root. However, not every surgeon is trained in excision and the recovery is definitely longer! I looked into endometriosis advocacy groups like Nancy’s Nook (Facebook) to help learn more about the differences and find excellent surgeons.”

Madison ended up having a hysterectomy in 2023 after they suspected adenomyosis (where endometrial tissue grows within the muscle of the uterus) and the quality of life she has now is significantly improved! She still has endometriosis (there’s no cure and it often regrows) but it’s managed much better now.

“I will probably have a fourth surgery in the next couple years, but I’m hopeful that the medicine and science improves to possibly delay an additional surgery. My endometriosis and my ulcerative colitis symptoms are definitely linked. If I’m in a flare for one, I tend to have symptoms increase for the other. For example, my endometriosis causes really painful bloating and I often look distended. If the distension lasts for a few days, my gut tends to revolt and I start to see an increase in GI symptoms. The last 2 surgeries showed I had endometriosis growing on the bowels (both times it was removed) so my cycles would cause really painful GI symptoms that improved after the surgeries.”

She is more convinced now that the gut/brain/pain feedback loop is real. When Madison’s endo is calm, her ulcerative colitis tends to follow suit. She’s so grateful for Instagram which has connected her to other endometriosis patients that have been willing to share their experiences.

Katherine: “Just saw an endo excision specialist 2 months ago. She wants me to do the surgery, but I’m in my second flare right now in the last year and my IBD specialist won’t sign off on it until I’m in endoscopic remission. Now dealing with fighting CVS in an appeal to increase my Rinvoq back to 45 mg.”

Katherine went on to say that one of the most vital steps in her journey was realizing that her body doesn’t operate in silos, so her doctors shouldn’t either.

“Navigating the overlapping pain of ulcerative colitis and endometriosis requires more than just two separate plans; it requires a unified front. I found that getting my IBD specialist deeply involved in my pelvic health was the catalyst for better care, especially since I noticed my symptoms would constantly peak during my cycle, creating a ‘perfect storm’ for inflammation.”

She says her GI understands the specific complexities of her UC and was able to refer her to an endometriosis specialist who wasn’t just an expert in surgery, but someone who respected the delicacy of the bowel.

“When your GI and endo specialist collaborate, you move away from ‘band-aid solutions’ and toward a strategy that addresses how these conditions trigger one another. Don’t be afraid to ask your gastroenterologist for a referral; a specialist who is already vetted by your IBD team ensures that your care plan is safe, cohesive, and designed for your specific anatomy.”

Katherine is currently in her second UC flare in six months after being in remission for five years. The plan is to start progesterone only birth control once she’s back in remission. Then she plans to get endometriosis excision surgery, and an IUD, which will help with her iron deficiency anemia.

Sabrina: “My doctors have suspected I have endometriosis, but I haven’t done the diagnostic surgery yet because I need to wait until I have my surgery to reconnect my J Pouch.”

Kelly wasdiagnosed with endometriosis stage 4 but most likely had it for years. Then, she received her Crohn’s disease diagnosis in 2005.

“We did several rounds of IVF mainly because back then it wasn’t talked about or taken seriously. I never would have done IVF because my Crohn’s got so bad. We adopted in 2009. I had my colon out in 2010. Then in 2016, I was thinking of a hysterectomy because I was so done with the anemia and pain. I ended up with a small bowel blockage due to my endometriosis and end up (I had a J Pouch—I now have an ileostomy) having an emergency hysterectomy and a 10-hour surgery to unglue all my organs and get rid of the scar tissue on my bowels and the damage from the endo.”  

Kim: “I was diagnosed with Endometriosis first, then Crohn’s, then repeat scopes showed endometriosis on my colon as well. I’ve never been told there is a correlation, but it makes total sense (how women’s bodies store trauma and have far more autoimmune conditions as a result). I wish I would’ve known to advocate for myself and my symptoms as a teenager and young adult.”

Kim says too many times (especially for women) we are told it’s “normal” to have symptoms (cramps, excessive bleeding, fatigue, anemia, etc.) and as a young adult, you don’t know to challenge it.

“Even at 30 years old, my PCP was convinced my rectal bleeding was simply from hemorrhoids and only referred me to GI when I insisted. Then, that GI only performed a colonoscopy because of the referral from PCP as “IBD patients typically present much more ill” than me. We then discovered severe, chronic ulceration and full-blown Crohn’s.”

Kristin: “I was diagnosed with stage 4 endo during a hysterectomy in 2024 after years of terrible symptoms that kept me bedridden during my cycle. However, not all my symptoms were relieved from the surgery. About 15 months later (just last month), I was diagnosed with Crohn’s disease and started on biologics. For years, I was told I had a sensitive stomach, or I should take birth control. I wish I knew what endo was years ago. I also wish I knew how much more likely women with endo are for having an autoimmune disease.

Kristen wants women to know that how you describe your symptoms to doctors is just as important as what you tell them. This will directly impact testing and help in finding a diagnosis. It wasn’t until she told her GI that her symptoms were cyclical but seemed to have no rhythm or reason that the testing approach shifted. Kristen wants women to have the courage to speak up about all your symptoms, even if they seem gross or uncomfortable to talk about.

Allie: “I just wish when I was diagnosed with UC that someone would have told me the likelihood of potentially having endo and then the impact it could have on fertility. I would have gone to a fertility specialist early on and potentially frozen my eggs in early adulthood.

Kate: “I was diagnosed with Crohn’s first 25+ years ago. Then endometriosis 23+ years ago. I have stage 4 endo, meaning it was most recently found fusing my vagina and rectum together. I have had a total hysterectomy, multiple surgeries to remove endometrial tissue throughout my pelvis, and both of my ovaries are now gone. This was discovered after YEARS of constipation (weird for me) and NOTHING worked to resolve it.

Kate is on opioids for chronic pain and her doctors kept telling her the pain medication was the culprit for the constipation, but the reversal medications did nothing. She was hospitalized for nine days for pain and constipation, during which they tried everything. The only fix was to slowly drink colonoscopy prep while getting IV pain meds for the pain it caused.

“I kept asking if it could be a structural or a motility problem, and they kept saying it was the opioids. Colonoscopies have shown my Crohn’s is and has been in remission for years (thanks to Azathioprine!)  After the surgery, where they discovered the actual issue (that it was structural), I’ve had zero constipation issues and have been able to finally start coming out of the depression. We are now looking to find a GI doctor who has a better understanding of endometriosis and Crohn’s.”

Kate says the inflammatory process of both diseases mimic each other, and there is no reason to suffer in pain, nor should patients be told they cannot address their pain using the entire toolkit, including opioids, if they allow the patient to become more functional and lead a more fulfilling life.

“Doctors need better education on how systemic both diseases are, and that if Crohn’s symptoms aren’t responding to treatment, they should be worked up for endo. There also needs to be a better understanding that both diseases can be worse than having cancer, as there are no clear protocols, there is little understanding or support, there is little research, and the idea there could be something worse than cancer doesn’t register with most of the general public.”

Lenette: “I found out I had endometriosis when I had a partial hysterectomy to correct iron deficiency anemia. At first, the pain and symptoms all blurred together. It’s taken time for me to be able to distinguish between the two, but sometimes, I’m still unsure what is what. Tracking symptoms helped me distinguish better because I found some symptoms to be cyclical. However, IBD can worsen around your cycle as well and hormones can affect both conditions.”

Lynette recommends women be extremely specific with doctors about their pain. So many symptoms overlap, and she says it can feel two times as bad: bloating, fatigue, mood, etc. All of this can cause pelvic floor tension, and pelvic floor therapy can be life changing.

“It’s also helpful to find community that have both conditions where you can find someone to talk to or learn more about having both. I have found it to be so frustrating to have both because I seem to experience symptoms so much more dramatically than others do at times. Having two conditions that affect the same area and both cause pain and bloating has been so challenging. What helps one condition might not help the other so it can be very trial and error. It has given me a new sense of awareness of my pain and fatigue since I am constantly monitoring to understand which is occurring or if both are the culprit at that time. It’s so frustrating that my IBD is in remission, yet I still experience a lot of symptoms due to my endometriosis.”

She says it can feel like you rarely get a break from pain.

“I try to listen to my body when I’m experiencing a lot of symptoms. I do a lot of deep breathing, stretching, and walking. I also try to listen to my body regarding food. I try to eat nourishing things but also if I’m craving something, I usually eat what I’m craving. If it increases symptoms, I make a note of that. Sometimes my body is OK with certain foods and sometimes it isn’t. I also try to manage stress levels a lot when I’m experiencing symptoms.”

Jessie: “I was diagnosed with Endo and Crohn’s right around the same time at the age of 15. I think my Endo symptoms showed up at first, but they were all diagnosed at once. At the time, the doctors shared no information on any correlation and treated it like two separate issues. As I aged and both progressed, I still struggled to get any acknowledgement from doctors on the two being related; however, once I was diagnosed stage IV Endo and had my last excision + partial hysterectomy, that surgeon said he could see how my condition could be affecting my Crohn’s in the lower colon and perianal area. I had some endo down by the rectum that they removed and there was just a lot of inflammation.”

Jessie says her inflamed uterus (which was adenomyosis) also may have been contributing to overall inflammation in that area as well. She chose to have an excision and partial hysterectomy before her ostomy was reversed, and her perianal symptoms improved so much by not having a period anymore.

“Every time I would get a period, I would experience pain, inflammation, diarrhea, increased urgency, and pressure around that rectal area and my lower abdomen. While I still have my ovaries, not having a period itself every month almost eliminated all those Crohn’s symptoms that would rage around my cycle.”

The Bottom Line

The truth is, not all pain in women with IBD is “just IBD” and continuing to accept that narrative is where too many stories get stuck. Endometriosis is often hiding in plain sight, especially in bodies already labeled as “complicated.” But your body is not confusing, you’re just being asked to connect dots that the healthcare system doesn’t always put together for you.

So, if something feels off, if your symptoms don’t follow the rules, if your pain keeps showing up despite doing “everything right,” do not ignore it. Track it. Name it. Bring it to your care team repeatedly until someone listens.

Because you deserve care that looks at the whole picture. You deserve doctors who are curious, not dismissive. And most of all, you deserve answers, not assumptions. This isn’t about choosing between diagnoses. It’s about recognizing that sometimes, it’s both, and finally getting the care that reflects that reality.

Learn more here

Life With Crohn’s And Endometriosis: An Overlap Of Painful Symptom | EndoFound

Inflammatory Bowel Disease and Endometriosis: Diagnosis and Clinical Characteristics – PMC

Endometriosis Does Not Worsen IBD and May Be Linked to Milder CD Progression – Gastroenterology Advisor

Inflammatory Bowel Disease and Endometriosis: Diagnosis and Clinical Characteristics – PubMed\

Frontiers | Potential shared pathogenic mechanisms between endometriosis and inflammatory bowel disease indicate a strong initial effect of immune factors

ASSOCIATION OF ENDOMETRIOSIS AND INFLAMMATORY BOWEL DISEASE (IBD), FINDINGS FROM EPIDEMIOLOGICAL EVIDENCE TO GENETIC LINKS – Fertility and Sterility

Endometriosis vs IBD: Symptoms, Overlap, and Evidence

What I Wish Every Current and Future IBD Mom Knew

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This month marks nine years since I became a mom.

Nine years since my life split into a clear before and after.
Before motherhood.
Before learning how much my heart could stretch.
Before realizing I could love someone so fiercely while still carrying a body that has never felt predictable or safe since my Crohn’s diagnosis in 2005.

I entered motherhood already shaped by chronic illness. Crohn’s disease had been part of my identity for years before I ever held a positive pregnancy test in my hands. I knew what it meant to live with uncertainty. I knew how to navigate flares, fatigue, medications, and fear. What I didn’t know was how those experiences would transform me into an entirely new version of myself—an IBD mom. When I got pregnant, I only knew of one woman, my cousin’s wife, who has Crohn’s, and stayed on her biologic throughout her four pregnancies.

This week on Lights, Camera, Crohn’s a reflection on my patient journey and what it felt like to go through family planning, pregnancy, and motherhood as a woman with IBD and what I want others to know.

When I Was “Just” the Patient

For a long time, my world revolved around survival. Appointments. Side effects. Lab work. Scopes. Injections. Recovery days. Canceled plans. Hospitalizations. Weaning off steroids. Learning how to read my body’s subtle warning signs. Learning when to push and when to rest.

Crohn’s taught me resilience long before I knew I would need it in motherhood. But it also taught me hyper-awareness. A constant scanning of my body for what might go wrong next. A relationship with fear that felt both protective and exhausting. As time passed, I learned to listen to how my body was speaking to me through symptoms.

When I imagined becoming a mom, that fear came with me. I had bowel resection surgery two months after getting engaged, I was planning a wedding, and for the first time after a decade of living with Crohn’s I had FINALLY heard the word “remission” for the first time. My fiancé (now husband) and I knew once we got married 10 months later, that we would need to capitalize on that remission and hopefully start our family while we knew I was well enough to do so. Despite being in remission, I still had many questions and thoughts racing through my mind:

Would I be healthy enough?
Would my medication be safe?
Would I flare during pregnancy or postpartum?
Would my disease rob me of moments I dreamed about?
Would I be hospitalized and away from my child?

…the list went on. If you’re an IBD mom or one day aspire to become one, you know the questions we all face.

I wanted to become a mom more than anything, but I carried quiet doubts about whether my body was capable of sustaining not just a pregnancy, but a lifetime of caregiving.

Becoming a Mom with Crohn’s

The day I became a mom everything shifted. Not because my Crohn’s disappeared. Not because my health suddenly became perfect. But because my why expanded.

Suddenly, my body was no longer just something I endured. It was the home my child lived in.
The vehicle through which I would show up, nurture, protect, and love. That realization changed the way I approached my overall health as a mom with IBD. My pregnancy with Reid gave me a renewed sense of love and appreciation for my body.

Taking my medication wasn’t just about me anymore.
Advocating at appointments wasn’t just self-preservation.
Resting wasn’t weakness.
Prioritizing sleep wasn’t indulgent.

It was parenting. I began to see caring for myself as an extension of caring for my child. That mental shift — from “patient” to “patient who is also a mother” — was subtle but seismic. Rather than waiting until I was too weak to even walk through the emergency doors by myself, I started to alert my care team within days of recognizing that my Crohn’s seemed a bit “off” so that we could nip any issue that arose in the bud.

Learning to Mother Through Difficult Days

Motherhood with Crohn’s is not picture-perfect. But regardless of your health status, there is no such thing as perfect when it comes to being a mom. You must remind yourself of this and give yourself grace.

There are days I have shown up with heating pads tucked under sweatshirts.
Days I’ve read stories from the bathroom floor.
Days I’ve powered through school drop-offs on pure adrenaline and grit.  Days I’ve shown up to PTO meetings and coached soccer on pain medication.
Days I’ve cried because I felt like I was failing at both having a chronic illness and being a mom.

I’ve been in “remission” since 2015, the entire time I’ve been a mom, which I’m eternally grateful for, but just because I’ve been in remission does not mean I don’t face countless struggles with this disease. That’s something I wish people would understand. IBD is a chronic illness, just because someone is in remission doesn’t mean they are free of pain, stress, and more.

I’ve had to learn that good motherhood doesn’t require constant physical perfection. Some seasons look like big adventures and energy. Others look like quiet cuddles, movie days, and choosing rest over outings.

Both count.

My children are being raised by someone who understands empathy, flexibility, and listening to their body. That matters. You’ll notice as a parent with chronic illness how quickly your little ones develop empathy. It’s next level. And so beautiful. You don’t even have to teach it, it’s innate in them because of their daily reality.

Raising a Child Who Understands Illness and Compassion

One of the unexpected gifts of being an IBD mom is watching compassion take root early.

My three children know that bodies work differently.
That medicine helps people live.
That rest is sometimes necessary.
That we don’t judge what we can’t see. They’ve learned that strength isn’t always loud.

Sometimes strength looks like getting up anyway.
Sometimes it looks like asking for help.
Sometimes it looks like choosing yourself.

Those lessons feel just as important as anything in a textbook.

How Motherhood Changed My Relationship with My Body

Before becoming a mom, there were times my body felt like the enemy.

The source of pain.
The reason plans fell apart.
The thing holding me back.

Motherhood complicated that narrative.

This body carried three children.
This body nourished three children.
This body continues to show up, even when it’s tired, inflamed, or aching.

It isn’t perfect.
But it is more than capable.

I still have hard days. But honestly, I have a lot more amazing days. I never take a feel-good day for granted.
Even after more than two decades of living with Crohn’s, there are still moments where I fantasize about what it would be like to just be a healthy person and not have the burden of my disease.

But I also hold more gratitude now. A grounded, honest one. My three children are my greatest motivation to push through and be my healthiest self.

From Surviving to Advocating

Becoming a mom didn’t quiet my voice.

It amplified it. Ironically, this blog, Lights, Camera, Crohn’s, launched July 23rd, 2016… I found out TWO days later I was pregnant with my oldest son, Reid. So, this blog truly captures every moment of pregnancy, family planning, and motherhood from the perspective of someone who learned as I went.

I advocate not only for myself now, but for a future where my children grow up in a world that understands chronic illness better than the one I grew up in.

I speak out because I want fewer people to feel dismissed.
I share stories because I want fewer people to feel alone.
I push for better care because I want better options for the current and the next generation.

I want couples to feel empowered by their decision to have a family, however that may look for them.

I hope women feel comforted by all the constant research going on to address what’s safe and effective as they bring life into this world. I participated in IBD pregnancy studies with all three of my kids, my youngest who turns five in July will be followed through the PIANO study until age 18!

Motherhood turned my survival into purpose.

Nine Years In: Who I Am Now

I am still a patient.
I am still navigating Crohn’s.
I still face uncertainty at times, but through a much different lens.

I am also a mom of nearly a decade.

A mom who has learned how to hold fear and hope at the same time.
A mom who knows that love is not measured in energy levels.
A mom who shows up imperfectly, consistently, and wholeheartedly.

I didn’t become a mother despite Crohn’s.

I became a mother with Crohn’s.

And over the past nine years, I’ve learned that those two identities can coexist, not in conflict, but in strength. I swear I blinked and somehow my sweet Reid, my baby, is nearly double digits. I don’t think there will ever be a time in my lifetime that I don’t stare at all of my children in awe of their existence, I’m sure if you’re a parent you feel the same way. It’s a miracle they are here, healthy, and thriving. So much of why I share my family so openly is to show how my children, who were all exposed in utero to Humira, are doing so beautifully in school, sports, and socially.

To the IBD Moms (and Future Moms) Reading This

You are not broken.
You are not behind.
You are not failing.

You are doing one of the hardest jobs in the world while managing one of the hardest diseases. That deserves recognition.

Later this month, my Reid is nine.

Nine years of learning.
Nine years of adapting.
Nine years of loving fiercely in a body that isn’t always kind.

And I wouldn’t trade this evolution for anything.

IBD Pregnancy Studies

Global Consensus on IBD and Pregnancy

PIANO (Pregnancy in IBD and Neonatal Outcomes) Study

WIsDoM Study: A Study Focused on Female Fertility and Pregnancy

MotherToBaby

A New Study Suggests Crohn’s Disease May Be Detectable Years Before Symptoms Begin

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New research published in Clinical Gastroenterology and Hepatology offers a glimpse into what Crohn’s disease may look like before it officially begins and the findings could have major implications for how we understand, monitor, and potentially prevent the disease in the future. As an IBD mom of three kids ages 8, 7, and 4, research like this always feels a bit bittersweet. While I’m grateful for the strides in research, I’m apprehensive about the burden and grief I would feel if I was able to know if my children would one day receive the same diagnosis.

As someone diagnosed with Crohn’s at age 21, I’m grateful for my two decades of blissful, perfect health. Had I known a complicated chronic illness would one day riddle my body, I’m not sure how I would have coped and dealt with that news.

This week on Lights, Camera, Crohn’s a look at what the latest research discovered, the complicated emotions IBD parents may feel, and what the future may hold for us all as a community.

Why This Matters: Crohn’s May Start Long Before Diagnosis

The study found that certain immune responses in the blood, specifically elevated IgG antibodies targeting a conserved region of bacterial flagellin (a protein found on gut bacteria) were present years before people were diagnosed with Crohn’s disease. In other words, the immune system appeared to be reacting to gut bacteria long before symptoms like abdominal pain, diarrhea, or weight loss ever showed up.

This study followed 381 first-degree relatives of Crohn’s patients, 77 of whom went on to develop the disease. Among them, 28 (more than a third) had elevated antibody responses.

One of the most important takeaways from this research is the timing. Most Crohn’s biomarkers are identified after the disease is active. This study, however, suggests that immune dysregulation may begin well in advance of clinical disease. This supports the idea that Crohn’s develops gradually rather than suddenly.

That distinction matters. If Crohn’s truly has a long preclinical phase, it opens the door to earlier monitoring and potentially earlier intervention, especially for people who are already at higher risk, such as first-degree relatives of those living with Crohn’s disease. A first degree relative is a parent, child, or sibling.

According to the Crohn’s and Colitis Foundation, 36% of children born to two parents with IBD will develop the condition at some point during their life. The risk is substantially less when only one parent has IBD, with The National Human Genome Research Institute sharing there’s a 7-9% chance.

A Potential Blood Test for Risk, Not Diagnosis (Yet)

It’s important to be clear: this is not a diagnostic test and it’s not something patients can request from their doctor today. But it does raise the possibility that, one day, blood-based immune markers could help identify those who are more likely to develop Crohn’s before symptoms begin.

For families affected by IBD, this kind of risk stratification could be meaningful. Instead of waiting years for symptoms to escalate, or for damage to occur, high-risk individuals might one day be monitored more closely or offered early preventive strategies. As an IBD mom, I feel as though I would struggle with knowing whether this was something I wanted to dig deep for, while also not wanting to get in the way of stopping disease progression. It’s not a black and white situation by any means. If these types of blood tests are available when my kids are teenagers, and I were to get results that broke my heart, I’d feel obligated to be transparent and share—would I really want my kids, who have witnessed me living with Crohn’s their whole lives, to know this would one day be part of their own story? It stresses me out just trying to imagine it.

What This Could Mean for Prevention Research

Another compelling aspect of the study is that the immune response was directed at a conserved portion of bacterial flagellin. This means it’s shared across many gut bacteria. That finding has sparked discussion about whether future therapies or vaccines could target these immune pathways in people who are high risk for Crohn’s.

While prevention remains a long-term goal rather than a current reality, this research reflects a broader shift in IBD science: moving upstream to understand why Crohn’s starts, not just how to treat it once it’s already established, and as an IBD mom I am certainly grateful for that.

What This Doesn’t Mean (Yet)

As exciting as this research could be, it’s not a crystal ball. Not everyone with these immune markers will develop Crohn’s, and many people with Crohn’s were never tested years before diagnosis. Larger studies are still needed to validate these findings across diverse populations and to determine how predictive these markers truly are.

For now, this study adds another piece to the puzzle, one that reinforces what many patients already know intuitively: Crohn’s disease doesn’t start the day you’re diagnosed.

The Bigger Picture

Our community often experiences years of delayed diagnosis, misattributed symptoms, and unanswered questions, so research like this matters. It shifts the narrative from “why didn’t we catch this sooner?” to “how early can we understand and intervene?”

While we’re not there yet, this study represents an important step toward a future where Crohn’s disease is identified earlier, monitored more thoughtfully, and one day possibly prevented altogether.

For parents living with IBD, research like this can carry an added emotional burden. The idea that Crohn’s disease may be detectable years before symptoms begin can stir complicated feelings, especially for those who worry about whether they’ve passed on a genetic risk to their children. Some parents may want every possible tool to protect their child’s future health, while others may find the thought of early testing anxiety-provoking or guilt-inducing. There’s no right or wrong response. I get it and struggle with how I’d handle this, too. Living with IBD already requires navigating uncertainty, and this research underscores how deeply personal decisions about risk, knowledge, and monitoring can be for families. As science moves forward, it will be just as important to support parents emotionally as it is to advance early detection tools.

Additional Research

Crohn’s Disease May Be Detectable Years Before Symptoms

Familial and ethnic risk in inflammatory bowel disease – PMC

Targeting Disease Prediction and Prevention: The New Frontier in IBD

Deciphering the different phases of preclinical inflammatory bowel disease | Nature Reviews Gastroenterology & Hepatology

The GEM Project – The GEM Project – Crohn’s and Colitis Canada

When Science Meets Story: The Patient Voice in the Global Consensus on IBD and Pregnancy

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It is an exciting and transformative time for the IBD community when it comes to family planning and pregnancy. For years, patients and providers faced uncertainty and conflicting guidance about everything from fertility to medication safety. Now, with the publication of the Global Consensus on IBD and Pregnancy, we finally have a unified, evidence-based roadmap created by leading experts worldwide.

This groundbreaking research, jointly published across multiple top journals, is more than just a collection of data—it’s a lifeline for patients, caregivers, and clinicians seeking clarity and confidence. And for the first time, that guidance comes to life through a series of 12 videos now available online. As the sole U.S. Patient Ambassador and Group Lead for patient advocates worldwide, I was honored to contribute not only to this historic project, but also to share my own journey in the video series—bringing the patient perspective directly into the global conversation.

Grateful for Dr. Uma Mahadevan and the entire team for their incredible work on the Global Consensus.

Check out the video series

Following the release of the research from the 2025 Global Consensus Conference on IBD, a series of 12 videos were also published on the PIANO (Pregnancy in IBD and Neonatal Outcomes website), featuring experts speaking on best practices, emerging data, and consensus statements.

Among those 12, my Patient Perspective video is unique. It’s the only video in the lineup where you hear firsthand experience from an IBD mom. During my unscripted 18-minute video, I share openly about the tough decisions I faced personally, the hopes and worries I encountered while bringing babies into this world, and what I want fellow patients and doctors to know. As an IBD mom of three kids (now ages 8, 6, and 4) who were all exposed in utero to Humira, I have a unique perspective to share.

I know what it’s like when you’re 32 weeks pregnant and have to do a biologic injection while you see your baby’s foot kicking at your belly. I know how stressful it is when you don’t know if you’re going to flare while pregnant or shortly thereafter. I know how complicated and overwhelming it can feel when you’re juggling a chronic illness along with pregnancy and motherhood.

Having a patient video placed alongside expert commentaries is a statement: our lived experience is essential to understanding how guidelines work in the real world. I hope my words leave you feeling seen and empowered.

The 12 published videos cover the following topics:

  • Adverse Outcomes of Pregnancy in IBD
  • Fertility and IBD
  • Fetal and Neonatal Adverse Events in IBD
  • IBD Medications During Pregnancy
  • IBD Medications During Breastfeeding
  • Immunizations for Infants of Mothers with IBD
  • IBD Medication During Breastfeeding
  • Key Findings and Recommendations
  • Management of IBD During Pregnancy
  • Maternal Factors in IBD
  • Preconception Counseling and Contraception for Patients with IBD
  • The Patient Perspective

Why These Videos Matter

Each video is a piece of a bigger puzzle. Together they tell a story about where we are now, where we need to go, and how patients can be—and must be—central to that journey.

Bridging gaps between patient, clinician, and researcher. These videos are designed not just for patients, but for caregivers, physicians, policy makers, and anyone interested in improving IBD care. Seeing things through the patient lens can spark better communication, more empathic care, and guidelines that address what matters most.

Empowerment through shared experience. Whether it’s coping with symptoms, navigating treatment decisions, or facing uncertainty, this research will make you feel more confident in every decision you make along the way. Rather than feeling like there’s an overwhelming amount of gray area, you can see the roadmap of decision-making created from the Consensus that will help you each step of the way.

How to Watch & What To Do Next

  1. Watch the videos: Listen firsthand and educate yourself. An educated patient is an empowered patient. It’s one thing to read a published medical study, it’s especially helpful to see these videos and watch the research come to life.
  2. Join the conversation: Use these videos as conversation starters, take what you learned into clinic visits, have conversations with your partner/family/friends, or on social media. When you’re talking about family planning, make sure your GI and Maternal Fetal Medicine doctors are aware of the Global Consensus on IBD and Pregnancy to ensure they are up-to-date on the very latest research.
  3. Join the PIANO study. This is a great way to become a citizen scientist and use your journey to motherhood as a way to pave the way for others. I participated in PIANO with my youngest child, and he will continue to be “followed” until age 18. It does my heart good to know we’re helping bridge the gaps in understanding so women with IBD now and in the future can feel more comfortable about staying on medication in pregnancy and during breastfeeding.

Too often, patient voices are an afterthought or an add-on. Being featured as an integral voice, not a sidebar, is a powerful shift. The fact the Global Consensus Conference team made such a point to incorporate patients like myself who are IBD moms, from around the world, goes to show just how inclusive and comprehensive this research is.

Final Thoughts

Living with IBD means navigating uncertainty, physical challenges, and emotional strength, but it also means being part of a community that continues to push boundaries in care. These videos highlight not only the science and data, but the lived realities that bring those numbers to life. Patient voices don’t just complement medical expertise, they help shape the future of care. By placing my perspective alongside global experts, the Consensus reminds us that guidelines are most powerful when they reflect both evidence and experience.

As an IBD mom, I think about what this progress means for my three children and for the next generation of families impacted by this disease. I volunteer my time and energy for these projects because they are at the heart of my patient advocacy and genuinely matter so much to me. The inclusion of patient voices today paves the way for a future where no one feels alone in their decisions about pregnancy and IBD. Together—patients, clinicians, and researchers are building a roadmap that will make the journey clearer, safer, and more hopeful for those who come after us.

A Rare Case, A Powerful Message: One IBD Mom’s Battle with Vitamin K Deficiency During Pregnancy

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When you live with Inflammatory Bowel Disease (IBD), you become an expert in knowing life can throw you curveballs at any given moment. Those curveballs are especially worrisome and scary during pregnancy and after you become a mom.

For one IBD mom who wishes to remain anonymous, that curveball came in the form of a rare and dangerous vitamin K deficiency that caused life-threatening complications for both her and her newborn son after delivery. Now, two years later, a published medical case study based on their experience is helping raise awareness of this rare issue, offering hope that future pregnancies in the IBD community might benefit from earlier detection and intervention.

Diagnosed Young, Navigating the Unknown

This mom was diagnosed with Crohn’s disease at age 13, and now at 34, she’s lived with IBD for more than 20 years. Her journey has included numerous medications, including a long stretch on Humira, which she remained on during her pregnancy, and four partial small bowel resections. She’s also undergone several exams under anesthesia due to complications like abscesses and fistulas.

Thankfully, during her pregnancy, her Crohn’s was well-controlled with no active disease, making the post-delivery complications much more shocking.

A Sudden Turn After Delivery

After giving birth to her son (we’ll call him “B”), what should have been a joyful moment quickly turned traumatic.

She spent 16 days in the hospital, including three in the ICU, while her newborn faced a 23-day NICU stay. The cause? A severe, undiagnosed vitamin K deficiency, which led to hemorrhaging in both mom and baby. The medical team was blindsided—none of them expected this.

Understanding Vitamin K Deficiency & IBD

Let’s get one important thing straight first. This situation is not about skipping the vitamin K shot that newborns typically receive. The mom explains:

“It’s imperative that newborns receive a vitamin K shot after they are born to prevent vitamin K deficiency bleeding. The American Academy of Pediatrics recommends that all newborns receive a single dose of vitamin K, because babies are naturally born with very little in their bodies. In our case, my son did get the shot—but because I was unknowingly severely deficient in vitamin K during pregnancy, his vitamin K levels in utero were dangerously low, leading to a brain hemorrhage before he was even born. The bleeding he experienced was similar to what some babies experience when they don’t receive the shot, but in our case, it happened earlier—and was not caused by withholding care. In fact, he needed far more vitamin K after birth to restore safe blood clotting levels.”

This vital distinction can prevent confusion and reinforce just how important that standard vitamin K shot is for all newborns.

What She Wants Other IBD Moms to Know

“Knowing what I know now,” she says, “I want fellow IBD women to understand a few key things about vitamin K deficiency during pregnancy:”

This is rare. Most pregnant people with IBD will never encounter this issue. “I hope that offers peace of mind. But as we all know, knowledge is power—especially when you live with IBD.”

If you’ve had bowel resections or are deficient in other fat-soluble vitamins (like A, D, or E), consider bringing this case study to your GI and OB/Maternal Fetal Medicine (MFM) doctors. Ask about checking vitamin K levels, as well as PT/INR and PTT, which monitor blood clotting.

You can develop a deficiency during pregnancy even if you’ve never had one before. “Outside of pregnancy, I had no clotting issues. But between my history of resections and my baby’s increasing demand for nutrients, my levels dropped—and no one knew.”

Looking Back: What She Wishes Had Been Done

“If we had been monitoring my vitamin K levels, PT/INR, and PTT throughout my pregnancy, we likely would have seen early warning signs,” she says. “These aren’t standard tests, but I hope someday they will be for IBD moms with similar risk factors.”

A Silver Lining in the Study

Despite the trauma, having their experience turned into a published medical case study brought a sense of closure.

“When they told us they wanted to publish it, I felt incredibly validated. This wasn’t just something we lived through—it’s now out in the world to potentially save lives. That’s the best-case scenario for us.”

The comprehensive care team—consisting of her OB, MFM, GI, hematologist, and PCP—remained closely connected throughout the experience. After both mother and baby were stabilized, Ohio State’s hematology team and Nationwide Children’s Hospital worked together to identify the deficiency as the root cause for both patients.

“They didn’t miss anything—they acted on the knowledge they had at the time, and when things went south, they sprang into action. I’ll always be grateful for that.”

“B” Today: A Story of Resilience

Despite a traumatic start, B is now a thriving, happy, and a miraculously healthy two-year-old.

“We were so worried about long-term impacts due to the hemorrhage in his brain, but he is now meeting and exceeding all his developmental milestones. He doesn’t need any additional support. It’s truly a miracle.”

His early care included close monitoring from neurology and the Early Development Clinic at Nationwide Children’s Hospital, along with early intervention specialists. Today, all those appointments are in the rearview mirror.

What About Future Pregnancies?

The reality is that this situation may recur if she decides to grow her family.

“My doctors believe I’d face similar risks, so we would monitor everything very closely: vitamin K levels, PT/INR, PTT and I’d likely receive IV vitamin K infusions throughout pregnancy to stay ahead of any deficiencies.”

Lifting the Tide for Others

After two decades of managing Crohn’s, she knows how isolating chronic illness can be.

“It’s hard. It’s lonely. It’s easy to feel invisible. But finding others who share their stories and who get it has been a game-changer for me. That’s why I’m sharing this now. Even if this specific challenge never affects you (and I truly hope it doesn’t), I hope you feel a sense of solidarity. A rising tide lifts all ships and if sharing our story lifts someone else’s experience just a little, it’s worth every word.”

If you’d like to contact this IBD Mom don’t hesitate to reach out to me, and I will connect you. It’s stories like this that help to pave the way for future families.

More Than Just a Switch: Unpacking the Emotional and Clinical Impact of Biosimilars and IBD

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It feels like a punch to the gut. Even though you’re anticipating it, the experience is not easy for anyone. For patients with inflammatory bowel disease (IBD), stability is everything. Whether living with Crohn’s disease or ulcerative colitis, finding a medication that keeps symptoms under control is often the result of years of trial and error. So, when insurance companies or healthcare systems mandate a switch from a familiar biologic like Humira to a biosimilar such as Hyrimoz or Amjevita, the decision can feel sudden, confusing, and unsettling. As of right now (May 2025) there are 22 FDA-approved biosimilars on the market for infliximab (Remicade), adalimumab (Humira), and Ustekinumab (Stelara) with many more coming down the pipeline.

It’s easy for providers to rely solely on the science that says it should be a “seamless,” effortless transition for patients and caregivers—but that’s not always the case, nor is it ever a guarantee. This week on Lights, Camera, Crohn’s we hear from more than 30 patients who have lived this reality. While many people seem to do well clinically, it’s imperative that we also discuss the mental and emotional toll this forced non-medical switch takes on people with chronic, debilitating illnesses and their caregivers. This blog aims to demystify biosimilars, highlight the emotional and clinical complexity of switching therapies, and provide guidance for healthcare providers and patients navigating this challenging transition.

As someone who was forced off my Humira after being on it for 16 years and put on Hyrimoz, I empathize with how complicated this is for patients. Not only was I petrified to switch—but I had a God-awful experience that resulted in going from deep remission to dealing with an adverse response for two months of my life, while trying to be a mom to three young kids.

I don’t take this subject lightly and frankly; I don’t care who I piss off by sharing this patient experience transparently. I angered some donors from a Pharmacy Benefit Manager (PBM) when I spoke on stage in front of a large crowd last fall genuinely thanking my IBD nurse who went to bat for me countless times to help me win my appeal to get back on Humira—this isn’t about profit, it’s about patients. We don’t owe anyone an apology for being uncertain about being told we need to switch our heavy-duty drug therapy not by a doctor, but by someone working in corporate America.

Biosimilars are not generics

First things first, I must clear the air on this. Almost every direct message I receive from patients refers to biosimilars as “generics” …and that’s a common misconception that needs to be done away with.

Unlike generic drugs, which have identical active components, biosimilars are comparable but not identical to their originator drugs. According to the US-FDA, a biosimilar is a biological product that is potent, pure, and safe and that is “highly similar to and has no clinically meaningful differences from an existing US-FDA-approved reference product”. In other words, biosimilars are equivalent to the reference biologics regarding safety and efficacy.

When you hear the terms “originator” or “reference” biologics—that means Infliximab (Remicade), adalimumab (Humira), and Ustekinumab (Stelara). There are many other biologics of course, but so far, these three biologics have biosimilars approved by the FDA. You can familiarize with their names that I’ve listed below so if you see one listed in a letter it’s not foreign to you.

Infliximab Biosimilars:

  1. Inflectra (infliximab-dyyb)
  2. Renflexis (infliximab-abda)
  3. Avsola (infliximab-axxq)
  4. Ixifi (infliximab-qbtx)
  5. Zymfentra (infliximab-dyyb)

Adalimumab Biosimilars:

  1. Amjevita (adalimumab-atto)
  2. Cyltezo (adalimumab-adbm)
  3. Abrilada (adalimumab-afzb)
  4. Hadlima (adalimumab-bwwd)
  5. Hulio (adalimumab-fkjp)
  6. Hyrimoz (adalimumab-adaz)
  7. Idacio (adalimumab-aacf)
  8. Yuflyma (adalimumab-aaty)
  9. Yusimry (adalimumab-aqvh)
  10. Simlandi (adalimumab-ryvk)

Ustekinumab Biosimilars:

  1. Wezlana (ustekinumab-auub)
  2. Selarsdi (ustekinumab-aekn)
  3. Otulfi (ustekinumab-aauz)
  4. Imuldosa (ustekinumab-srlf)
  5. Yesintek (ustekinumab-kfce)
  6. Pyzchiva (ustekinumab-ttwe)
  7. Steqeyma (ustekinumab-stba)

Important note: While these biosimilars have received FDA approval, the availability of some may be subject to patent litigation settlements or market launch agreements, potentially delaying their commercial availability.

Let’s look at the real-life numbers

While working on this article, I ran several polls on Instagram asking the IBD community about their personal experiences. Some of the findings surprised me:

Have you received a letter saying you have to switch? Of the 265 respondents, 64% of patients said “yes”, and 36% said “no”.

Did you appeal before switching to a biosimilar? Out of 200 responses, 33% responded “yes” and 67% responded “no”.

For those who switched was the transition seamless—or did you notice an uptick in symptoms? Of the 140 responses, 51% had a seamless transition and 49% noticed an uptick in symptoms. This right here speaks volumes.

If you responded poorly to your biosimilar and your GI appealed insurance, what was the outcome of the appeal? Out of 75 responses—38% of patients were denied, 32% were put back on the originator drug (biologic), and for 30% after multiple appeals they finally won and returned on their biologic.

Let’s hear directly from patients

Bre: “I was taken off Humira after the New Year and placed on Simlandi for my ulcerative colitis. I was nervous as I had just come out of a two-year flare and had finally found a drug that worked and even though I was reassured that this was as good as Humira, I still had my doubts. Thankfully, I have had a positive experience and have remained in remission since starting Simlandi in January. I hope this story helps others feel less afraid of the potential outcomes when they get the dreaded non-coverage letters.”

Kyrsten: “Back in April I was forced off Stelara to the biosimilar, Yesintek. I went into it with an open mind because my Crohn’s has been in remission for about a year and a half. Unfortunately, I am now experiencing more symptoms that I’m documenting and oral manifestations of Crohn’s and need to see an oral medicine doctor now.”

Stefanie: “I’ve had to switch biosimilars twice at this point, this second time, while I was pregnant. I’m doing just fine!”

Alexandra: “I was first afraid of Humira, then I grew into being afraid of not having it; so, when my insurance mandated the switch to Hyrimoz late last summer, I was so worried (as all are/were)! In September, I was starting to feel some symptoms pop in, so we did all the tests, which indicated that I was still in clinical remission. Thankfully, I am doing ok now with no issues.”

Christina: “It was first recommended to me by my GI a couple of months after diagnosis in 2021 to start on biologics, since the oral medications had stopped working for me. We collectively decided the best option for me would be Remicade, however when it was brought to my insurance company, they immediately denied it. Insurance said it wasn’t their “preferred method” and wanted me to try and fail Humira first. When my GI tried to get the Humira approved, my insurance company ended up denying that, too, and this time, their excuse was it “wasn’t medically necessary.” It took my GI a couple of months to get a biologic approved and I almost ended up back in the hospital as a result.”

After receiving her first injection, Christina ended up developing an allergic reaction and had to be switched to something else. After another month of fighting insurance, Christina’s GI was able to get Remicade approved.

Christina goes on to say, “I did very well on that for about a year, until my body developed antibodies, and I had to switch once again. I then started Entyvio infusions which I have been on ever since, and so far, I’ve been doing well on it.”

Audrey: “I was forced to switch from Remicade to Inflectra a few years ago due to insurance coverage. My job at the time was horribly stressful and very time-consuming and getting the news then about my medication no longer being covered and that my next infusion was delayed because of this change over the phone from my infusion clinic was terrible. I remember sitting in the workplace cafeteria when my phone rang, and I burst into tears and was pleading with the pharmacist that gave me the news prior to receiving the letter.”

At this point, Audrey was receiving Remicade every seven weeks. With the delay and having to wait for Inflectra to be shipped, she was pushed out an extra week.

“The thing that made me so angry, was that I had already received my Remicade shipment, the nurses just weren’t allowed to mix and dispense it because of the insurance change. I refused to toss that Remicade dose until the vials expired, since I knew how costly it was. I called so many charity pharmacies for low-income folks to see if they could take the vials and since its temperature controlled, they couldn’t. Such a waste,” said Audrey.

Thankfully, Audrey tells me she hasn’t had any issues with the switch, and she’s stayed in remission—even during and after her first pregnancy. But she says the stress and frustration that occurred impacted her mental health at the time.

Kelly: “I just got the letter. Been on Stelara since 2017. I also take it every four weeks, even though the recommended dose is every eight weeks. I get my insurance through my husband and our insurance turns over on 6/31/25. The new policy begins July 1st. I’m really concerned and honestly don’t want to deal with this.”

Sandi: “I was forced to change from Remicade that had me in remission for several years to Inflectra and the outcome was not good. I had multiple Crohn’s flares a month, which was not happening when I was in remission. My GI appealed and after a year, insurance started to cover my Remicade again. Since getting back on Remicade, I’m in deep remission, again.”

Britt: “I was diagnosed with Crohn’s in 2011 at the same time I was diagnosed with Primary Sclerosing Cholangitis (PSC), a rare liver disease. I was on Remicade and was switched to Avsola. For a while, I was quite skeptical, but we stayed the course. I had some ups and downs with my health, but I was just told I am in histological remission by my GI! After five years of struggles to find the right medication, my health finally seems to have aligned. I also take 6mp to reduce antibody development to the Avsola.

Danielle: “I went into my pregnancy in remission and my first and second trimesters were lovely. About halfway through my pregnancy, insurance decided it was the right time to swap my medications. Two weeks following that change, I was already struggling. I ended up finishing my pregnancy on two different rounds of methotrexate and iron infusions. I had a scheduled C-section at 39 weeks, and I think my care team hoped that my body was just struggling balancing pregnancy and Crohn’s…that was not the case at all.”

Danielle says she tried two more Inflectra infusions after her daughter was born and saw no improvement. She required a round of prednisone and that didn’t help either. She was then switched to Humira injections every two weeks and they seemed to work wonderfully and she started to feel better.

“Then my insurance threatened to switch me to a Humira biosimilar, but Humira failed me right when that was supposed to happen, so I was transitioned to Entyvio. For six months I saw no improvement on Entyvio…more prednisone and still NO improvement. Finally when my daughter was 14 months old (so over a year and a half of feeling like absolute garbage and having no energy) I got bowel resection surgery and switched to Stelara.”

Danielle went on to say she’s been in remission since December 2021, and she still wonders if switching to the Remicade biosimilar caused all this to happen.

“I truly feel like that change took part of the joy of pregnancy away from me and also took a lot of special time away from my daughter the first 14 months of her life. I spent her second Christmas in the hospital unable to see her for two weeks. I was on so many pain medications for so long before the surgery that I don’t remember her first birthday. I lost a lot simply because someone was trying to cut costs and making decisions they are not educated about.”

Brooke: “I was on Remicade for 15 years, then I was forced to switch to Inflectra. I was incredibly stressed and tried to appeal but lost that battle. I’ve now been on Inflectra for 3 years and I am doing well! I still hate that we are forced to change when something is going well. The amount of stress, anxiety, and time I spent fighting the insurance company took a toll on me.”

Brooke went on to say that she got pregnant and had a daughter while on Inflectra. Her GI and OB had no concerns with the biosimilar during pregnancy.

Maya: “At the beginning of March, I was told by my insurance that Stelara will no longer be covered and that I would be put on Yesintek. I’ve only gotten one dose of it so far, but I very much empathize with all the emotions that come with getting the letter. So far, I haven’t noticed any additional symptoms or changes in how I feel. I’m hoping Yesintek works for me and that I continue to feel ok!”

Maria: “I live in Sweden where Humira is covered by the State since no private insurance is needed, the last year though I was recommended from doctors to switch to a biosimilar. So, in autumn of last year, I decided to try Hyrimoz. I noticed no difference in the first three months, but after that, I saw an increase in symptoms, especially for my rheumatoid arthritis. My doctor recommended that I take the injection weekly instead of biweekly, but that didn’t help at all. Since I haven’t developed any antibodies, my doctor switched me back to Humira and I felt the difference right away.”

Sadly, Maria recently got the news that Humira will no longer be covered in Sweden starting in August, so she will either have to pay out of pocket or find another medication.

“You can imagine how that feels. Humira has been my trusted friend since 2008, managing my Crohn’s and RA so well. Hard to think of life without it,” Maria said with a tearful emoji.

Kenzie: “I’ve been on two different biosimilars of Remicade. Inflectra was seamless—no issues. Then, a few years later, I got new insurance, and they made me switch to Avsola, which I had an allergic reaction to. No allergic reactions to Remicade or Inflectra, after being on them for more than six years. Now I’m on Cimzia injections (not a biosimilar) because it’s safe for nursing and that just seemed like the better option for me right now. I’ve only been on Cimzia for 10 weeks, but so far, my Crohn’s and RA seem slightly better.”

Audrey: “I switched to a biosimilar (Inflectra) in January 2022. I got pregnant in June 2024 and delivered a healthy baby boy this March. No disease issues thus far.”

Tara: “I was on a biosimilar when I conceived and throughout my entire pregnancy. I’m on Hulio and everything went well. I stayed in remission throughout the pregnancy and postpartum.”

Amanda: “I was able to conceive and am currently pregnant on a biosimilar. Everything is going great, thankfully I was on Humira for about six years and then got the dreaded letter to switch. I went on Hyrimoz at the end of last summer and was on it for five months prior to getting pregnant.”

Lauren: “I conceived and was pregnant with my now 3-week-old all while on Inflectra. I stayed in remission the whole time.”

Katie: “I was able to conceive while on Avsola, a biosimilar to Remicade. I haven’t experienced any issues related to pregnancy. I did develop some antibodies though and had to escalate my dose while pregnant. I also take premeds of Solumedrol and Benadryl before every infusion now. I got hives during the Avsola infusion while I was pregnant.”

Erica: “My doctor wouldn’t appeal it. I was put on Amjevita. Thank goodness and knock on alllll the wood…it’s been going well. I haven’t noticed any difference in symptoms. It’s been a little over a month, so I pray it stays that way.”

Jessica: “Conceived and pregnant on Inflectra infusions. I just had a healthy baby girl one month ago, and I’m now breastfeeding. No problems at all.”

Marla: “I switched to Hyrimoz while pregnant and I did not notice a change. However, I will say I’ve been in remission since getting pregnant with my first child and I don’t always take my medicine on time, so I don’t know if the transition was seamless because the medicine is truly fine or if it’s because my body just does well while I’m pregnant and breastfeeding (which I basically have been the past four years having three babies). I will say it’s an ABSOLUTE nightmare trying to get my medication each month. Constant bills I’m having to fight and constant new prescriptions and prior auths from my doctor for the SAME medication. It’s literally unreal. I blame that on CVS Specialty pharmacy.”

Amanda: “While I was pregnant, my OB appealed because insurance would no longer cover my Delzicol for ulcerative colitis. I won but was only allowed to stay on it until I delivered, then I had to switch to a generic mesalamine.”

Christine: “Pregnancy is what got me a temporary appeal. Once the baby was born, I had to switch, but it was peace of mind not having to make the transition during pregnancy. I was anxious that it was just a regular infusion, there wasn’t a loading dose or a slow rate or anything. They just infused the Inflectra the same way they infused the Infliximab. About two years after making the switch, I had to go from every 7 weeks to every 6, but I will never know if it was due to the biosimilar or if after 10 years on a biologic/biosimilar, my body just needed the drug at more regular intervals.”

Danielle: “I was pregnant (in remission), and my GI decided that was the correct time to switch me to Inflectra from Remicade…it did NOT go well.”

Jordyn: “I found out I was pregnant around the same time I had my first biosimilar infusion. I went through my whole pregnancy on the biosimilar and only noticed an uptick in symptoms around 10ish weeks, which a course of steroid foam resolved. Postpartum is when I noticed the return of symptoms the most. After 2 or 3 infusions (I get them every 4 weeks) with no improvement, I asked for an appeal, and it was granted for me to go back on Remicade.”

Natalie: “I got pregnant the month after switching to Avsola. I made the switch November 2022 to the biosimilar and found out I was pregnant December 29th. Pregnancy went fine, delivered in August 2023, all my problems started in February 2024. I went back on Remicade at that point because my GI suspected I had serum sickness for months on end, and to this day, they still aren’t sure if the serum sickness initiated my problem of Crohn’s attacking my joints.”

Angie: “We were told we would have to switch, but the doctor office contacted them, and they will be covering me at least until September for Humira…then we will renew the prescription and hope that it will be covered, again.”

Jasmine: “I’m on Avsola (biosimilar for Remicade) and I wasn’t trying to get pregnant, but did, and had a perfectly healthy pregnancy.”

Allie: “My specialists appealed saying I was going through fertility treatments and then insurance approved my Remicade for another year.”

Malea: “I got my insurance letter recently and have been meaning to reach out as I remember your Humira nightmare. I have not appealed yet, partly because my GI office is incredibly dysfunctional and hard to get ahold of. I am on Stelara, which is the first thing to have kept my Crohn’s in remission and they want me to switch to Selarsdi, which I can not find any patient experiences/anecdotal evidence about.”

Georgia: “I was on Humira last summer when Accredo tried to switch me to a biosimilar without notification. I had a letter saying that my Humira was still covered. I worked with my GI who told me they are seeing this a lot and if the person doesn’t push back, they just switch them to a biosimilar. But, if the person pushes back, the GI calls Accredo with a code (DW1 Brand Medically Necessary) to block it. That’s what I did, and they therefore had to send me my Humira since my insurance was still covering it. I want to let others know in case they have a prior authorization from their insurance saying they will cover Humira, despite the pharmacy trying to switch them!”

Jessica: “I so appreciate you talking about this. For my daughter, I went to refill her Humira, and insurance said the doctor allowed the switch. I asked the doctor, and they said no…it’s insurance. I had to use one of my daughter’s biosimilar pens while mine was being shipped, and I noticed more pain and burning. I advocated for my daughter to be on brand name only and they approved the request. When it came to my biologic, my letter had the same wording and once again it was insurance, not my doctor.”

Jessica’s GI said despite her being in remission for so long, she would need to try the biosimilar, then if any symptoms occurred then they could fight for return to the originator drug.

The Emotional Toll of a Forced Switch

For many patients, switching medications, especially after long-term remission, can trigger anxiety, mistrust, and a profound sense of vulnerability. Here are a few of the emotional and psychological responses patients may face:

  • Fear of Flare-ups: Patients often fear that a new medication might not work as well, risking disease recurrence and potentially hospitalization. So many of us have been relying on our biologic as a crutch for several years if not decades, it’s worrisome when you find a medication that works and have to change simply because insurance decides it’s necessary.
  • Loss of Control: Being told to switch due to non-medical reasons (like insurance mandates) can feel disempowering.
  • Medical Trauma: Those who’ve experienced years of instability before finding an effective treatment may associate medication changes with setbacks and suffering.
  • Distrust in the System: Patients may feel like financial decisions are being prioritized over their health and well-being.

How to Comfort and Support Patients Through the Transition

Healthcare providers and care teams play a critical role in guiding patients through these difficult changes. Here are some key strategies to help:

  • Educate With Compassion: Clearly explain what biosimilars are, how they’re tested, and what the current evidence says about their safety and effectiveness in IBD. Emphasize that switching is based on clinical research and real-world data, not just cost. Have discussions about biosimilars with patients in clinic even if they haven’t received a letter in the mail yet so they are prepared.
  • Validate Their Concerns: Avoid minimizing fears. Instead, acknowledge them openly. Saying, “I understand why you’re anxious about this” creates space for honest discussion and trust-building.
  • Monitor Closely After the Switch: Set up a proactive monitoring plan to track disease activity, symptoms, and lab markers. This can reassure patients that you’re watching for any changes closely—and are ready to act quickly if needed. As a patient leader who unfortunately had to appeal my biosimilar, the fact I kept a detailed journal for two months and then wrote my own appeal letter in conjunction with my GI really helped us win the appeal.
  • Advocate When Necessary: If a patient is stable and deeply concerned about switching, advocate on their behalf. Some payers allow exemptions if a provider makes a strong clinical case for staying on the original biologic. It may take extra paperwork, but the effort can mean everything to the patient, especially for pediatric patients and women who have family planning considerations.
  • Encourage Peer Support: Connecting patients with others who have made similar transitions can provide reassurance and reduce feelings of isolation. Patient communities, both online and in-person, can be powerful.

Navigating the Complexity of Informed Consent

True informed consent means patients understand not just the science, but the context of their decision. It’s more than ticking a box—it’s about creating space for dialogue, questions, and partnership. When I received the letter saying Humira would no longer be covered, I alerted my GI team not to sign the new script, as that gives the pharmacy/insurance the ability to switch you. A biosimilar is not able to be prescribed until your doctor signs off on it, remember that.

A thoughtful approach might involve:

  • Discuss what will happen if symptoms worsen after switching. My GI called me multiple times to comfort me and even prescribed a couple of Xanax pills to ease my anxiety leading up to the switch.
  • Review the process for switching back (if possible). Have a game plan in place so you’re not scrambling if you notice a change in your health.
  • Ensure patients know they won’t be left to manage complications alone. Support every step of the way makes all the difference.

Research articles to help you feel informed about biosimilars

An informed patient is an empowered patient. I did some research to help do the homework for you. By reading the articles below you should feel better educated on biosimilars so you feel more comfortable with the switch (if it’s a necessity) and about discussing this further with your care team:

Biosimilars versus biological therapy in inflammatory bowel disease: challenges and targeting strategies using drug delivery systems – PMC

Biosimilars in IBD Treatment: Expert Panel Discussion | IBD Pro

Biosimilars in Pediatric IBD: Updated Considerations for Disease Management – PMC

Use of Biosimilars to Infliximab During Pregnancy in Women With Inflammatory Bowel Disease: Results From the Pregnancy in Inflammatory Bowel Disease and Neonatal Outcomes Study – PMC

Biobetters and biosimilars in inflammatory bowel disease – ScienceDirect

Biosimilars in IBD: What Every Clinician Needs to Know – PubMed

When to Switch Biosimilars for Patients with Inflammatory Bowel Disease

Biosimilars Gastroenterology Roundup: March 2025

Biosimilars in Pediatric Inflammatory Bowel Diseases: A Systematic Review and Real Life-Based Evidence – PMC

Final thoughts

Switching from a biologic to a biosimilar can feel like stepping into the unknown—but it doesn’t have to be done in fear or isolation. With transparency, empathy, and collaboration, patients can be empowered to make informed decisions, feel supported during the process, and maintain confidence in their care.

While some people feel more confident switching from a biologic to a different drug class (for example, Humira to Skyrizi or Stelara to Entyvio) to dodge the biosimilar, others are fearful of building up antibodies to a drug class that is otherwise working. You must weigh the pros and cons and do what you feel most comfortable doing. It’s important to remember it’s only a matter of time until all biologics for IBD have biosimilars, so by switching drug classes you are most likely just delaying the inevitable.

If you are planning to become pregnant or you are currently pregnant and on a biologic or a biosimilar please check out the PIANO registry so you can help pave the way for future IBD families and contribute to research so we have more information about the safety of these medications in pregnancy.

The science behind biosimilars is promising. But the human side of medicine—the fear, uncertainty, and trust involved in change, must be just as carefully managed. I hope after reading this article you feel less alone and supported in your personal health decisions.

The Patient Experience: IBD and PCOS—Is there a connection?

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Polycystic Ovary Syndrome (PCOS) and Inflammatory Bowel Disease (IBD) are two conditions that can significantly affect a woman’s health, but many may not realize that there is a potential connection between the two. While they are distinct in their nature, the relationship between PCOS and IBD may be more intricate than previously thought. Living with both makes for a complicated patient journey and is not talked about enough.

This week on Lights, Camera, Crohn’s we look at these conditions, how they influence one another, and hear from several women in the chronic illness community who experience both.

What is Polycystic Ovary Syndrome (PCOS)?

If you’re reading this, chances are you are aware of what IBD is, but PCOS may be more of a mystery to you. PCOS is a hormonal disorder that affects the ovaries, typically during the reproductive years. It’s characterized by irregular periods, excess androgen levels (leading to symptoms like acne, excessive hair growth on parts of the body where hair is normally minimal, scalp thinning), and the presence of multiple small cysts in the ovaries. PCOS is linked to insulin resistance, obesity, and an increased risk of developing type 2 diabetes, heart disease, and endometrial cancer and impacts 1 in 10 women who are childbearing age.

The precise cause of PCOS is still not fully understood, but genetic factors and lifestyle choices (such as diet and exercise) play a significant role.

The Shared Link: Inflammation

Both PCOS and IBD are associated with chronic inflammation. This is a key factor that may connect the two conditions.

Chronic Low-Grade Inflammation in PCOS

Research has shown that women with PCOS often have increased levels of inflammatory markers, such as C-reactive protein (CRP). This chronic low-grade inflammation can affect the entire body and is linked to metabolic dysfunctions like insulin resistance and obesity, both of which are common in PCOS. Inflammation in PCOS can also exacerbate other symptoms, such as ovarian dysfunction and difficulty managing weight.

Inflammation in IBD

On the other hand, IBD is fundamentally a disease of chronic inflammation. The immune system mistakenly attacks the lining of the digestive tract, leading to the symptoms of Crohn’s disease or ulcerative colitis. This ongoing inflammation can lead to gut permeability issues, nutritional deficiencies, and an altered gut microbiome. The inflammatory process in IBD is often more severe and widespread than in PCOS, but the principle of chronic, low-grade inflammation links the two conditions.

How Might Inflammation Link IBD and PCOS?

Though PCOS primarily affects the reproductive system and IBD affects the gastrointestinal system, both conditions share inflammation as a common underlying feature. Inflammation in one part of the body can exacerbate the other condition, making both difficult to manage at one time.

Here are a few ways in which inflammation might connect these two diseases:

Gut Microbiome Imbalance: Both IBD and PCOS have been shown to be influenced by imbalances in the gut microbiome. In IBD, the gut bacteria are disrupted, contributing to inflammation and disease progression. Emerging research suggests that women with PCOS also exhibit gut dysbiosis, which could worsen the inflammatory profile in the body. This imbalance may be a link that exacerbates both conditions, potentially influencing the development and progression of each.

Immune System Dysfunction: Both PCOS and IBD involve immune system dysfunction. In PCOS, the immune system may not properly regulate inflammation, contributing to insulin resistance and ovarian dysfunction. Similarly, in IBD, the immune system is dysregulated, resulting in chronic inflammation in the GI tract. A common immune pathway may contribute to the co-occurrence of these conditions in some individuals.

Hormonal Imbalances: Inflammation in PCOS can lead to hormonal imbalances that impact not only the reproductive system but also other systems in the body. Conversely, chronic inflammation in IBD may affect hormone levels, potentially exacerbating PCOS symptoms. For example, inflammatory cytokines may interfere with the normal balance of estrogen and progesterone, further complicating reproductive health.

Metabolic Dysfunction: Both PCOS and IBD are associated with metabolic issues, such as insulin resistance. Insulin resistance often goes hand-in-hand with chronic low-grade inflammation in both conditions, and this can make the management of both diseases more challenging. Insulin resistance can worsen inflammation, and inflammation can increase the likelihood of developing insulin resistance, creating a vicious cycle.

Medication Overlap: Some medications used to treat IBD, such as corticosteroids, can also exacerbate symptoms of PCOS, especially in terms of weight gain, insulin resistance, and hormonal imbalance. Conversely, treatments for PCOS, such as oral contraceptives and anti-androgen drugs, may have side effects that impact gut health, potentially influencing the course of IBD.

Managing the Dual Diagnosis

For those dealing with both PCOS and IBD, managing these two conditions simultaneously can be a delicate balancing act. Treatment plans need to address both the hormonal imbalances of PCOS and the inflammatory components of IBD.

Anti-inflammatory Diet: A diet rich in anti-inflammatory foods, such as fruits, vegetables, whole grains, and omega-3 fatty acids, may help reduce inflammation in both the gut and the reproductive system. A diet low in processed foods and sugar can also improve insulin sensitivity, which is crucial for managing PCOS.

Probiotics and Gut Health: Since both PCOS and IBD involve gut health disturbances, introducing probiotics or focusing on gut-healing strategies could help improve the balance of beneficial bacteria and reduce overall inflammation. However, the use of probiotics should be carefully monitored in IBD patients, as some may have adverse reactions during flare-ups. This is a conversation to have with your GI, as there are many differing opinions.

Medications and Monitoring: Medications for IBD (such as anti-inflammatory drugs or immunosuppressants) should be balanced with treatments for PCOS. A healthcare provider may consider the impact of one treatment on the other, as certain drugs could worsen either condition.

Physical Activity and Stress Management: Exercise can help with both insulin sensitivity and inflammation. Regular physical activity helps control weight and can reduce inflammatory markers in the body. Additionally, managing stress through mindfulness or relaxation techniques can also reduce inflammation and improve overall well-being.

The Patient Experience: Read Firsthand Accounts from Women with IBD and PCOS

When researching articles, one of my favorite parts of the writing process is to connect with patients who live the reality of the subject matter. Having the patient voice—people who are willing to share their firsthand experience to help others is priceless. Here is what women with both IBD and PCOS shared with me:

Kayla: “I am curious how many women with IBD also have PCOS because both my sister and I have it. I am getting put on Letrozole in a few weeks to helpfully get me to ovulate. I also have super high AMH which makes sense if I have PCOS, but it’s extremely high so I assume that also means a lot of eggs which also is the same for my sister. It’s crazy because my sister and I have led quite different lifestyles, but our health conditions have been nearly identical! I’m hoping to join the PIANO study soon after this round of medications.”

Sam: “Both PCOS and IBD affect my body and cause inflammation. It can be really tiring to deal with both. Also, there isn’t a cure for either one. Getting pregnant with both was interesting. I had to be in remission with my Crohn’s and then deal with trying to get pregnant which was difficult because of my PCOS. Family planning is extremely stressful with both conditions. I will say that an IUD and being on a GLP1 and infliximab infusions have helped keep my inflammation under control. I also feel like both are invisible diseases and people just dismiss them.”

Stephanie: “I was diagnosed with PCOS after coming off birth control for the first time in six years when I was 22. I was diagnosed with ulcerative colitis at age 26, nine months after having my first child. I never had any symptoms of uc prior to pregnancy and childbirth. My doctors say there is no correlation between both, but something that has been super interesting to me and my husband is the weight aspect…as you know with IBD there are many periods of time when you’re either using the bathroom 10+ times a day or even afraid to eat because of unknown outcomes, which causes many IBD patients to be underweight. But I’m the opposite. I gain weight during those periods and have a very hard time keeping the weight off with both diagnoses, which I chalk up to the PCOS causing insulin resistance (PCOS is often referred to as diabetes of the ovaries)…even though my labs don’t always show insulin resistance. It’s been extremely hard finding doctors who talk about other ways to help my PCOS without birth control.”

Stephanie also takes Metformin. She says both diagnoses come with their own challenges, but the PCOS diagnosis causes her more frustration since most of the suggestions are just to “lose weight” or take hormones to mask the symptoms of the disease. She is excited to see where the research on this topic and learn more about how the co-morbidities coincide between both diseases.

Jami: “I have IBD, diagnosed after four years of struggling through university (both my twin sister and I have Crohn’s disease). I had a major flare in 2015 and after a year of struggling I had surgery to remove my colon. I have an ileostomy and have had every surgery for Crohn’s since. Rectum removed. Stoma repairs, hernia repairs, fistulas, abscesses. I surprisingly got pregnant easily with my first daughter in 2019 after testing to ensure my surgeries did not disrupt my ability to conceive, but in 2021 I started to struggle to conceive and found out I had PCOS. I went to a fertility clinic to help to conceive my second child, and did not need IVF. Instead, I was given hormones and injections to help me ovulate properly and then I was on progesterone to help maintain the pregnancy for three months. If I’m being honest, I feel the C-vid vaccine screwed with my hormones. I don’t regret getting the vaccine as I’m immunocompromised from my biologic, but it was after the vaccines that my hormones were messed up and I started to have pain with my menstrual cycles (terrible cramping and awful breast pain before and during…which I never had before).”

Lindsey: “Crohn’s and PCOS here! I didn’t get diagnosed with PCOS until 2024 after trying to conceive for a couple of years. My only symptom is irregular cycles and multiple follicles on ultrasounds, so the diagnosis came as a shock to me.”

Gabby: “Living with Crohn’s is already a full-time job, but being diagnosed with PCOS added another complex layer. Both conditions affect my hormones, digestion, and inflammation—and often, managing one feels like it’s aggravating the other. PCOS makes it harder to control symptoms during Crohn’s flare-ups, and vice versa. I’ve learned to be incredible mindful of my diet, avoiding gluten and inflammatory foods to reduce triggers for both conditions. As a Latinx woman, one of the most frustrating things has been finding a way to manage my symptoms without feelings like I have to give up the foods that connect me to my culture. Traditional Cuban and Dominican dishes are rarely considered in medical diets or nutrition plans, and I’ve often felt overlooked in conversations about what’s “safe” to eat. But even with careful planning it’s not always enough.”

Gabby went on to say one of her biggest ongoing challenges is keeping her hormones balanced, especially during periods of high stress, something that often happens during a Crohn’s flare. She says stress tends to amplify both conditions, causing a domino effect of symptoms that can be physically and emotionally draining. Some days, she feels like she’s chasing balance that’s always out of reach.

Maddie: “My uc diagnosis came December 2012 when I was 14, wasn’t 8th grade such a fun year! I was put on mesalamine for the uc and birth control and spironolactone for my PCOS and didn’t have a second thought about either for 8.5 years, until I was 22 and my uc flared in June 2021. After the flare settled in July 2023, I stopped birth control a couple of months later to prepare to try to conceive after the six-month clearance. Stopping HBC didn’t impact my UC at all thankfully, which was a worry. We started TTC in April 2024 expecting it to take a while due to PCOS, but with a regular cycle, we conceived on the third cycle of trying in June 2024. We experienced a missed miscarriage where the baby stopped growing at 8 weeks, but we found out when I was supposed to be 10 weeks. After the miscarriage and D&C, I had a flare that lasted 4 months plus a 3-month waiting period before trying to conceive again.”

Maddie is thankful she was able to manage the flare with a course of budesonide. She did not need to switch maintenance medications.

“PCOS and uc are intertwined in this TTC journey, as PCOS unfortunately carries a higher miscarriage risk. Now that we know my body likely responds to loss and perhaps a full-term postpartum as well with a flare, it makes it much scarier of the risks of repeated losses and flares, and the worries of those make me worried about pregnancy-safe drug options, as well as the dangers of repeated/chronic inflammation on future health and cancer risks, and the worries of never being able to have a live birth or our ideal family size.”

Jenny: “Advocating for yourself is the first step towards healing, regardless of an individual’s situation. For years, I was told my Crohn’s disease and symptoms of PCOS were unrelated. It was a journey of perseverance towards confirming a diagnosis of PCOS and validation that the two are related. Trust your intuition, speak up, and never settle for answers that don’t feel right. Sometimes, the right doctors are the ones who truly listen—don’t be afraid to change your path until you find the care you deserve.

Jenny says it wasn’t until she had a female GI and a female gynecologist that she felt heard and understood. She says making that shift was pivotal in how she lived, improved her confidence, and her understanding of self-advocacy.

Final Thoughts

The relationship between IBD and PCOS is complex, but there are notable overlaps, especially in terms of chronic inflammation, immune system dysfunction, and metabolic disturbances. People with both conditions may face unique challenges, but understanding these shared pathways can help tailor treatments that address the root causes of inflammation and hormonal imbalances. Collaboration between healthcare providers across different specialties, such as gynecology, gastroenterology, and endocrinology, is essential to ensure comprehensive care for individuals managing both IBD and PCOS.

By recognizing these connections, we can better manage these conditions and improve the quality of life for those affected. While research appears to be limited regarding IBD and PCOS, there seemed to be a lot more discussion regarding Irritable Bowel Syndrome (IBS) and PCOS. I hope this article makes you feel seen, less alone, and empowered to discuss any health challenges that you may be experiencing but unsure of.

New Website for IBD Community Educates Women on Family Planning

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There’s breaking news in the IBD community—and I can’t wait to share it with you! I’m thrilled to announce the launch of a groundbreaking new website dedicated to empowering women with Inflammatory Bowel Disease (IBD) by providing them with the critical information they need about family planning, pregnancy, and postpartum. This resource is a direct follow-up from the recent Global Consensus Conference on IBD and Pregnancy, which brought together a world-renowned group of scholars, physicians, and patient advocates from around the globe to review all available science, share information, experiences, and insights in the hopes of offering helpful recommendations designed specifically for women with IBD.

This week on Lights, Camera, Crohn’s a look at the website which launched today (March 4, 2025) and what this means for the patient community, along with sentiments from the one and only Dr. Uma Mahadevan.

Empowering Women with Accurate, Consistent Information

Women with IBD often struggle with overwhelming misinformation and confusion when it comes to family planning and pregnancy. I can speak from firsthand experience as an IBD mom of three kids ages 7 and under. Up until recently, there have been a great deal of gray areas that make family planning extra stressful for those with Crohn’s disease or ulcerative colitis.

From varying recommendations by different healthcare providers to conflicting advice from different countries, the lack of a consistent message leaves many women uncertain and fearful about the health of both themselves and their pregnancies.

Dr. Uma Mahadevan, the Chair of the Global Consensus Conference and the primary investigator of the Pregnancy in IBD and Neonatal Outcomes (PIANO) study, highlights this issue, “Women with IBD suffer from so much misinformation and fear. Recommendations vary from provider to provider and country to country. That is why the Global Consensus brought together GI’s, teratologists, pharmacists, surgeons, etc., from around the world to come up with one guidance document for all patients to have a consistent message.”

The new website, which is translated in six different languages, aims to deliver just that—a unified, trusted source of guidance for women with IBD. With contributions from a multidisciplinary team of experts, the website consolidates the latest, evidence-based advice to help women navigate their pregnancy journey with confidence.

As the Patient Ambassador for the United States, I had a chance to see the work that went into this remarkable resource, and I must admit seeing the site brought tears to my eyes. I can’t tell you how fortunate we are to have this information and scientific research available. Our community has needed this for so many years—and now, the patient experience of navigating pregnancy with IBD will be transformed in the best way.

Visited the FDA with Dr. Mahadevan in July 2024 to share the latest guidance from the Global Consensus Conference.

Addressing the Fear of Stopping Medications

One of the most significant concerns among women with IBD during pregnancy is the fear of medication use. Dr. Mahadevan points out that the absence of consistent advice can lead to a dangerous default, “When there is no consistent message, often the fear default is to stop the meds, which can be harmful to the pregnancy – both mother and child.”

The website’s primary goal is to ensure that women understand the importance of continuing essential medications where necessary and how to work with their healthcare providers to safely manage their IBD during pregnancy. The risks of stopping treatment without proper guidance can negatively impact both the mother’s health and the health of the baby, so providing accurate, clear information is crucial.

As a woman on Humira since 2008, I remember how scared I felt about continuing my medication throughout my pregnancies, but I trusted my medical providers (gastroenterologist, maternal fetal medicine, and OB) and had flawless, symptom-free pregnancies because my disease was so well managed. Yes, it’s emotional when you’re 35 weeks pregnant and feel the baby kick as you’re about to inject medication into your body, but I always told myself that by keeping myself healthy, I was protecting my babies. I also found great comfort in participating in the PIANO study with my youngest and MotherToBaby pregnancy studies with my other two children.

Providing Confidence and Joy for Women

Dr. Mahadevan hopes this website and these materials will give women the confidence to move forward with their pregnancy with joy, not fear, and the strength to resist the misinformation.

The resources on the website are designed to reassure women that pregnancy with IBD is possible, and they can be proactive in ensuring their health and the health of their baby. With expert advice, personalized care options, and up-to-date research, the website offers a beacon of support for women navigating this journey.

What Inspires Dr. Mahadevan’s Work in IBD and Family Planning?

Dr. Mahadevan’s dedication to research in IBD and family planning is rooted in both her professional expertise and personal experience. As a leader in this field, she is driven by the desire to make a tangible difference in the lives of women facing IBD-related challenges. “The science around pregnancy is fascinating, and there are always so many new questions to study. However, the most important thing is that I personally know how hard it is to have a family, and I want to do what I can to help other women complete their families, as there is no greater joy!”

Her compassion and commitment to helping women with IBD fulfill their family dreams are at the heart of this new platform, which seeks to bring scientific clarity and emotional support to those who need it most.

A Call to Action for Women with IBD

The launch of this website marks a major step forward in supporting women with IBD who are considering family planning or navigating pregnancy. It is a space where women can find reliable information, connect with healthcare professionals, and feel empowered to make informed decisions that prioritize both their well-being and the well-being of their future children.

If you or someone you know is living with IBD and considering pregnancy, this website is a must-visit. Please help me in spreading the word so patients across the world are aware of the information available right at our fingertips. Together, we can break down the barriers of fear and misinformation, helping women move forward with confidence, joy, and support.

Visit pianostudy.org/GCC_video/ today to access the resources, expert advice, and community support you need to make informed decisions about your pregnancy with IBD.

Be a Part of PIANO

The PIANO Study is a powerful opportunity for women to get involved in this groundbreaking research that could help shape the future of healthcare for women living with IBD. By participating in this study, you can make a direct impact on understanding the unique experiences and challenges that women with IBD face.

Being part of this research gives you a voice in advancing medical science and contributing to discoveries that could improve the lives of countless women in the future. This is your chance to be a part of something bigger than yourself, to make a difference for others who share your experiences, and to support the next generation of women living with IBD. Together, we can pave the way for a healthier, more informed future. I’m so grateful that my youngest child is a part of PIANO and that we’re contributing to the amazing research that is going on.

Join the PIANO study today.

WIsDoM Study: Empowering Women with IBD to Navigate Fertility and Family Planning

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Many women with Crohn’s disease or ulcerative colitis are diagnosed during peak childbearing years. Despite ongoing advances and strides in research, many questions remain about female fertility as it relates to IBD. This inspired Dr. Marla Dubinsky, MD and Dr. Zoë Gottlieb, MD at Mount Sinai Hospital in New York and Dr. Eugenia Shmidt, MD at the University of Minnesota to create The Women with Inflammatory Bowel Disease and Motherhood (WIsDoM) study. Since launching at Mount Sinai and the University of Minnesota in 2023 about 170 women with IBD have participated, and thanks to a generous grant from the Helmsley Charitable Trust, WIsDoM will continue to enroll participants until the end of August 2025. The goal—to enroll about 500 women across the United States and Canada by the end of next summer.

This week on Lights, Camera, Crohn’s we hear from these leading trailblazers in the IBD field to learn more about their aspirations for this monumental research study and how you can get involved.

The inspiration behind WIsDoM

Dr. Dubinsky and Dr. Gottlieb tell me they care for hundreds of women with IBD who are considering pregnancy, including those with a history of IBD-related surgeries.

“These women, along with their partners and families, often ask how their IBD or surgical history might affect fertility. Unfortunately, the available research on this topic is limited. Much of it comes from retrospective surveys or large database studies, which fail to give us a complete picture,” says Dr. Dubinsky. “Additionally, most of the existing data focuses on women who’ve had open J-pouch surgery for ulcerative colitis; given that many IBD surgeries, including J-pouches, are now done laparoscopically, this information is often not relevant to our current patients.”

They recognized the need for more comprehensive, up-to-date data to help answer these important questions to allow them to provide the best possible guidance for family planning to their IBD patients.

“Unlike previous research, WIsDoM gathers detailed, long-term data, allowing us to better understand the impact of IBD on reproductive health and identify potential risk factors impacting fertility in this population,” Dr. Dubinsky explains.

Main questions about female fertility and IBD that remain

We currently have limited information on how most IBD surgeries, other than open J-pouch surgery, may affect female fertility.

“Many of our patients with IBD have undergone other types of surgery, such as subtotal colectomy or small bowel resection, but we don’t yet know how these procedures might impact fertility. In addition, there is very little data on how other factors—such as the type of IBD, medications, the length of time someone has had the disease, other health conditions, family history, or sexual health—could influence fertility. Our goal is to give women a thorough understanding of how their IBD, along with their overall medical, social, and reproductive histories, might affect their ability to become pregnant,” Dr. Gottlieb says.

Who can participate in the WIsDoM study?

You must be:

  • A woman with IBD
  • Aged 18 to 45 years old
  • Planning to become pregnant in the next 15 months
  • Able to consent to participation
  • Live in the United States or Canada

Click here to hear from Dr. Dubinsky and Dr. Gottlieb firsthand.

What does participation involve?

When women join the study, they will be asked to complete an initial questionnaire that covers their IBD, surgical, medical, reproductive, sexual, and social histories. This will be the longest form you need to fill out and may take about 15 to 30 minutes, depending on your individual experiences. After completing the form, participants will receive a $50 gift card. You will also be asked to help obtain some of their medical records so additional information can be gathered about your health history.

“Once they are enrolled, participants will receive a survey each month. In this survey, they’ll be asked whether they’ve tried to conceive, whether they became pregnant, and if there have been any changes in their IBD, surgical, or reproductive health since the last survey,” says Dr. Gottlieb. “They’ll also be asked to describe their IBD symptoms, including whether they’re experiencing a flare-up or if their condition is well controlled. Participants will continue to receive these surveys monthly until they reach 12 weeks of pregnancy or until the study ends in July 2027, unless they choose to opt out.”

When the study ends (either at 12 weeks of pregnancy or the study’s conclusion), participants will receive an additional $50 gift card. If you become pregnant and experience a pregnancy loss, or if you become pregnant, have a baby, and wish to try for another pregnancy during the study period, you can re-enroll and continue participating.

Being proactive with family planning

When women and their families have a clear understanding of how their IBD, surgical, and medical histories may affect fertility—based on comprehensive, real-world data—they can make informed decisions about seeking fertility help sooner.

“This early guidance can help them get the support they need during the family planning process and avoid unnecessary delays in trying to conceive naturally if it seems unlikely to be successful. At the same time, it will also allow us to reassure some women that their fertility is likely to be similar to that of women in the general population, helping them avoid the financial burden of fertility treatments until they truly need them,” says Dr. Dubinsky.

Final thoughts

Through WIsDoM, we have a unique opportunity to make a meaningful difference in how women with IBD receive guidance about pregnancy and family planning. By gathering important data over time and using this to predict a patient’s risk of reduced- or infertility, medical providers can offer early support, including information on how surgery might affect fertility before a patient undergoes an operation.

“We hope that our findings will help change how healthcare providers support women with IBD when it comes to fertility, especially in terms of knowing when to refer patients to a fertility specialist. Currently, there are few clear guidelines on when to make these referrals, and we believe that, too often, we wait too long to offer women the support they need to conceive,” says Dr. Gottlieb. “This delay can impact their family planning and create unnecessary emotional and financial stress. Our goal is to use the data we gather to develop a risk calculator that will help us assess each patient’s individual risk for fertility issues, allowing us to refer them to the right resources earlier and give them the best chance to become pregnant successfully.”

Every patient deserves the most accurate and evidence-based information to make informed decisions about their family planning, and the hope is that WIsDoM will provide this valuable insight for women with IBD. As an IBD mom of three following bowel resection surgery, knowing that research like this is underway for current and future families does my heart good. By participating in IBD studies like WIsDoM, you help paint a clearer picture for how patients and families can be most supported during family planning and beyond.

Interested in learning more about WIsDoM and getting involved:

Call: 212-824-7786

Email: wisdom@mssm.edu