From Puberty to Menopause: How IBD Care Evolves for Women Across a Lifespan

As the years go by living with IBD, our health needs change and our IBD care should evolve with us. Women’s health in IBD is about so much more than pregnancy. Symptoms around menstruation, questions about contraception, puberty, sexual health, fertility, menopause, bone health, and cardiovascular health are all legitimate parts of your IBD care. Cedars-Sinai Hospital in Los Angeles, California recently held their second annual Women’s Health in IBD Conference.

Dr. Puja Khanna, MD, spearheads the conference and wanted to share more about the key takeaways and where she sees personalized medicine moving in regard to women’s health now and into the future. This week on Lights, Camera, Crohn’s, Dr. Khanna shares incredible guidance that will leave you feeling empowered as you navigate all the joys of being a female living with IBD.

Personalized IBD care for women

We have become very sophisticated at phenotyping IBD—Crohn’s versus ulcerative colitis, disease location, behavior, biomarkers, and prior medication exposure. But we have been much less sophisticated about incorporating a woman’s life stage into that same personalized approach.

“A 14-year-old navigating puberty, a 28-year-old choosing contraception, a 35-year-old planning pregnancy and a 52-year-old entering menopause may have exactly the same Crohn’s phenotype on paper, but they do not necessarily have the same health priorities or the same risks.”

Dr. Khanna thinks the future of precision medicine in IBD needs to include not only what kind of IBD a patient has, but also where a woman is in her life, and what she needs at that specific life stage.

Navigating hormonal shifts

Hormones can intersect with IBD throughout a woman’s entire life—from puberty and menstruation, through contraception and pregnancy, and into perimenopause and menopause.

“I want women to understand that changes in symptoms do not always mean their IBD is becoming more active. Hormonal shifts can affect bowel habits, fatigue, pain, sleep, and mood, and sometimes those symptoms can look like an IBD flare,” Dr. Khanna explains. “The good news is that we increasingly have tools such as fecal calprotectin, blood markers and intestinal ultrasound that can help us distinguish symptoms from true intestinal inflammation rather than simply guessing.”

Recognizing that your GI team is a safe space

As a woman who has lived with Crohn’s disease for over 21 years, I know from my own personal experience how important it is to feel comfortable bringing these issues up to your GI team. Women’s health and IBD are all part of the comprehensive care you should be receiving. Questions about periods, contraception, sexual health, fertility, menopause, bone health, and even cardiovascular health are all part of comprehensive IBD care.

“I want women to feel empowered. Their health needs are going to change throughout their lives, and their IBD care should change with them. The goal is not simply to control inflammation—it is to help women with IBD stay healthy and thrive through every stage of life,” says Dr. Khanna.

The intersection of each chapter in a woman’s life with IBD

While pregnancy remains incredibly important, it’s important to remember that the child-bearing years are just one chapter in a woman’s life with IBD. It’s becoming increasingly understood that each touchpoint in a woman’s development and aging intersects with IBD in different ways.

Dr. Khanna says, “Research is beginning to reflect that broader view. Recent reviews are specifically looking at IBD from puberty through menopause rather than treating women’s health as synonymous with pregnancy. The next step is translating that into routine clinical care, where we proactively ask women about these issues rather than waiting for them to bring them up.”

Gaining a better understanding of hormones and their impact on IBD

Hormones used to be thought of as almost an on-off switch—more estrogen or less estrogen and perhaps more or less inflammation. We now appreciate that it is far more complicated.

“Estrogen and progesterone interact with receptors on intestinal epithelial and immune cells and may influence intestinal permeability, immune signaling, gastrointestinal motility and even the gut microbiome,” says Dr. Khanna. “At the same time, the microbiome can influence estrogen metabolism through what is sometimes called the “estrobolome.” Genetics, medications, diet, and underlying inflammation are interacting with all these pathways.”

The important caveat is that much of the mechanistic science is ahead of the clinical evidence.

“We understand the biologic plausibility much better than we did a decade ago, but we cannot yet predict an individual woman’s IBD course based on hormone levels.”

Puberty and IBD

Dr. Khanna recommends parents watch out for the overall trajectory rather than any single symptom. Ask yourself:

Is she growing appropriately?

Is she gaining weight?

Is puberty progressing normally?

Are menstrual periods developing normally?

Is she unusually fatigued or becoming iron deficient?

Has her appetite changed?

“Growth failure or delayed puberty can be a manifestation of inadequately controlled IBD, particularly Crohn’s disease. Chronic inflammation, inadequate nutrition, and corticosteroid exposure can all interfere with growth, pubertal development, and the accumulation of bone mass during a period when young women should be building the foundation for their future bone health,” says. Dr. Khanna.

We should not automatically dismiss significant weight loss, delayed puberty, persistent fatigue, or major menstrual abnormalities as simply being part of adolescence.

Dr. Khanna says, “We do not have compelling evidence that puberty itself simply “switches on” IBD activity. In fact, one of the clearest relationships goes in the other direction: uncontrolled inflammation and poor nutrition can delay growth and puberty.”

It’s important to note—sex hormones interact with the immune system, intestinal barrier, and microbiome, so puberty is occurring during a period of tremendous biologic change. What ultimately happens to an individual patient is probably determined by the interaction of hormones with genetics, immune regulation, nutrition, microbiome composition, medications, and the underlying behavior of her IBD.

Symptoms peaking during your period?

This is such an important distinction because more symptoms do not necessarily mean more inflammation. Read that again.

“More than half of women in a large IBD cohort reported worsening symptoms during menstruation, and other studies have shown increases in diarrhea, abdominal discomfort and bowel frequency around the menstrual cycle,” says Dr. Khanna. “Hormonal fluctuations and prostaglandins can change intestinal motility and visceral sensitivity even when the IBD itself remains controlled.”

Dr. Khanna asks her patients about the pattern. If the symptoms predictably occur around every menstrual cycle, resolve as the period ends, and the patient otherwise feels well, that makes a hormonal contribution more likely. If symptoms are progressively worsening, persisting beyond the menstrual window or accompanied by features such as rectal bleeding, nocturnal diarrhea, weight loss, or persistent systemic symptoms, she becomes more concerned about inflammatory activity.

“A predictable, short-lived pattern that happens at approximately the same point in every cycle and then returns to baseline is reassuring, particularly in someone whose IBD has otherwise been objectively well controlled,” she explains.

Dr. Khanna says she would want a patient to contact her when something is different from the usual pattern:

  • Symptoms are becoming progressively more severe
  • Symptoms continue well beyond the menstrual period
  • Development of new rectal bleeding
  • Persistent nighttime symptoms,
  • Fever
  • Weight loss
  • Dehydration
  • Significant anemia or fatigue
  •  Not returning to baseline

“One of the messages I want women to hear is: you do not have to decide on your own whether this is hormones or IBD. That is exactly where objective monitoring can help,” says Dr. Khanna.

Diagnostic tools that help make the distinction between hormonal symptoms and inflammation

Fecal calprotectin is particularly useful because it gives a relatively noninvasive measure of intestinal inflammation. Your GI can also look at blood markers such as CRP, although CRP is not equally sensitive in every patient.

“Intestinal ultrasound is another exciting tool because it allows us to look directly for features of bowel inflammation—such as increased bowel-wall thickness and vascularity—without radiation and often right in the clinic. Depending on the situation, cross-sectional imaging or endoscopy may also be appropriate,” says. Dr. Khanna.

The larger point is that modern IBD care increasingly allows doctors to separate symptom burden from inflammatory burden. That distinction is extremely important for women whose symptoms fluctuate with hormonal transitions.

Hormonal contraception and IBD activity

Overall, Dr. Khanna says there is not convincing evidence that hormonal contraception consistently causes established IBD to flare. Older cohort data and European guidelines have generally been reassuring, although a 2025 systematic review emphasized that the available studies are heterogeneous and the certainty of the evidence remains low.

“For me, the bigger issue with estrogen-containing contraception is often not disease activity but blood-clot risk. IBD itself increases the risk of venous thromboembolism, particularly during active disease, hospitalization, surgery, or corticosteroid exposure. The CDC therefore recommends individualized assessment before using combined estrogen-containing contraception in women with IBD who have additional thrombotic risk factors,” explains Dr. Khanna.

Long-acting options such as an IUD or implant can be excellent choices for many women.

“We also must think about bone health when considering depot medroxyprogesterone and about absorption of oral contraception in women with significant small-bowel disease or extensive resections. The contraceptive conversation should really be individualized.”

Emerging data on perimenopause and IBD

During perimenopause, estrogen and progesterone do not simply decline in a straight line—they can fluctuate considerably.

Dr Khanna says, “Those hormonal changes may affect intestinal motility, visceral sensitivity, immune regulation, intestinal barrier function, and the microbiome. That creates the potential for changes in GI symptoms even when inflammatory disease activity has not changed.”

But we need to be very clear about the limitations of the evidence. A recent systematic review found only 15 studies addressing menopause and IBD, and most women did not report a major change in their IBD after menopause, although a subset did worsen. We need much more prospective research during the actual perimenopausal transition.

The overlap between perimenopause and IBD symptoms

There is tremendous overlap, which is exactly why this can be challenging.

“Fatigue can come from active inflammation, anemia, poor sleep, or menopause. Joint pain can be an extraintestinal manifestation of IBD, but musculoskeletal symptoms also become common during the menopausal transition. Bowel habits can change because of IBD, but hormones can also influence motility and visceral sensitivity.”

Dr. Khanna says instead of attributing everything to either IBD or menopause, she prefers to ask two questions simultaneously: Could her IBD be active, and could menopause be contributing to how she feels?

“We can then use her clinical pattern together with CBC, iron studies when appropriate, CRP, fecal calprotectin and sometimes intestinal ultrasound or endoscopy to determine whether inflammation is actually present.”

Just like disease journey, menopause is experienced uniquely, too

Biologically, two women are not experiencing the same transition. They may have different IBD phenotypes, different levels of baseline inflammation, different prior surgeries, different medications, different microbiomes, different genetic susceptibility and different responses to estrogen and progesterone signaling. One woman may also have overlapping IBS, pelvic-floor dysfunction, or musculoskeletal symptoms that another woman does not.

Even the hormonal transition itself varies enormously between women.

“That heterogeneity is one of the reasons I do not think we will ever have a simple statement that “menopause makes IBD better” or “menopause makes IBD worse.” The 2025 systematic review reflects that variability: most women had no major change, while subsets reported worsening or improvement,” Dr. Khanna says.

Hormone Replacement Therapy and IBD—Yay or nay?

The available evidence is reassuring, but it remains limited.

“An older study suggested less IBD activity among postmenopausal women using hormone therapy, and a more recent multicenter retrospective study also found improvement in physician-assessed disease activity after HRT. The newest systematic review concluded that hormone therapy may reduce flare severity but emphasized how limited the evidence remains.”

Dr. Khanna says she would not prescribe hormone therapy as a treatment for IBD, because we do not have evidence to support that. But having IBD by itself should not automatically exclude a woman from receiving appropriate treatment for bothersome menopausal symptoms.

This is a shared decision involving the patient, her women’s health provider and, when appropriate, her gastroenterologist. Remember it’s a team approach—keep your providers in the loop and don’t silo your “women’s health issues” to one provider, make sure your gastroenterologist knows what you’re experiencing, too.

Considerations for Estrogen-containing therapy, progesterone, or menopausal treatments

Women with IBD already have an elevated risk of venous thromboembolism (blood clots), particularly when their disease is active. Oral estrogen can also increase thrombotic risk. For women with increased VTE risk, data from the broader menopause literature suggest that transdermal estradiol has a more favorable thrombotic profile than oral estrogen.

“We also consider whether the woman has a uterus, because systemic estrogen generally requires an appropriate progestogen to protect the endometrium, as well as her age, time since menopause, cardiovascular history, smoking, prior thrombosis, breast-cancer risk, migraine history, bone health and current IBD activity,” explains Dr. Khanna.

So, it should not be “IBD equals no hormones.” It should be a thoughtful, individualized risk-benefit assessment.

Being Proactive with Bone Health

IBD can affect bone health through chronic inflammation, malnutrition, low body weight, and corticosteroid exposure, and then menopause adds the accelerated bone loss associated with declining estrogen.

Current AGA guidance recommends considering bone-density testing in people with IBD who have risk factors including low BMI, more than three cumulative months of corticosteroid exposure, smoking, hypogonadism, or postmenopausal status. Even in the absence of additional risk factors, bone densitometry should be considered in postmenopausal women with IBD.

I personally have had a “bone health doctor” for the past four years. It blows my mind how many people with IBD I speak to who never had a baseline bone scan. My first bone scan was at age 26. Bring this up to your GI, it’s important to be proactive rather than reactive. Now, at 43, given my history of Crohn’s, anemia, past steroid exposure,  and my age, I get a bone scan every two years.

“I also think about vitamin D status, adequate calcium intake—preferably through diet when possible—regular weight-bearing and resistance exercise, adequate protein, minimizing unnecessary steroid exposure, avoiding smoking, fall prevention and treating osteopenia or osteoporosis when indicated,” says Dr. Khanna.

For women with IBD, bone health should become part of the menopause conversation before the first fracture occurs.

Working together across specialties

One of the biggest gaps in medicine has been that women with IBD have often had to navigate their gastroenterological health and their women’s health in parallel rather than together.

That is beginning to change.

“We are learning that hormonal transitions can influence symptoms, immunity, the intestinal barrier, the microbiome, bone health, cardiovascular risk and quality of life—but we also have to be careful not to attribute every change a woman experiences to hormones.”

Dr. Khanna says the opportunity now is to build a model of care where gastroenterology and women’s health truly intersect across the lifespan.

“That means asking better questions, using objective measures of inflammation when symptoms are ambiguous, collaborating across specialties and making sure women have the information they need to advocate for themselves. For me, that is really the future of women’s health in IBD.”

One final piece of advice

I asked Dr. Khanna if she could give women with IBD one piece of advice about navigating their disease through puberty, menstruation, pregnancy, perimenopause, and menopause, what she would want them to know.

“I would tell them: Do not assume that every symptom is your IBD but also do not assume that everything is “just hormones.” Ask the question and let us help you figure it out.”

When it comes to future IBD and Women’s Health Conferences through Cedars-Sinai, Dr. Khanna would love to expand the reach of the program well beyond the women who can physically attend a conference in Los Angeles.

“We are exploring virtual collaborations and opportunities to connect with colleagues and patients in other communities so that education around women’s health and IBD can become more accessible. I would like to see women’s health become an integrated part of excellent IBD care everywhere—not a niche topic or something we discuss only when a woman becomes pregnant.”

The Patient Experience: Puberty and IBD

Whether you are a parent or not it’s heartbreaking to imagine how it would feel if you found out your child (no matter their age) was diagnosed with a chronic illness like inflammatory bowel disease. Of the more than six million people in the world diagnosed with Crohn’s and ulcerative colitis, approximately 25% of patients are diagnosed during childhood and adolescence, most of which are going through puberty. Impaired growth, pubertal delay, and low bone density are all common in children and teens with IBD. They can occur at diagnosis or at any time during a patient’s IBD journey.

As an IBD mom of three, who was not diagnosed until I was 21 years old, I personally don’t have the experience or perspective to share what it’s like to grow up with IBD or have a child diagnosed with it, so I tapped into several caregivers in our community, along with four leading pediatric gastroenterologists for input.

My hope is this article will serve as a helpful resource as you navigate the challenging waters of puberty with your loved one. Teen years are difficult enough without a chronic disease, taking a close look at how this impacts a young adult physically, emotionally, and mentally is something that deserves much more attention than a blog article.

Concerns from patients and caregivers

Before we get into the medical input, I want to share some of the messages I received this week from young patients and their caregivers so you can see firsthand how complicated this period of life is for everyone involved.

“I’m 14 years old. I was diagnosed with Crohn’s when I was 12, which marked an influential time in my life. It can be hard to cope with being diagnosed and having a chronic illness at that age. That year leading to my Bar Mitzvah, a cultural rights of passage from boyhood to manhood, was really challenging for me. At a time when changes are going on and puberty takes its course, learning to trust your body and that it is working is key. Rather than trusting my body, I had a lot trust issues. If my body could turn itself to work against me in my GI system, what’s to say it wouldn’t turn on me other ways? I am especially worried about my reproductive system. Since I was a little boy, I always knew I wanted to be a father when I grew up. Having kids and being a family man has always been my highest purpose in life. Since my Crohn’s diagnosis, I’ve felt anxious and worried about whether my Crohn’s or my body will stop me from fulfilling that dream.”

“I often worry about whether my son’s hormones will put him into a flare and wonder what the best way to approach the school about his Crohn’s is.”

“My biggest puberty concern is delayed growth or slowed growth and flares. I’ve heard a lot about puberty hormones really causing issues. Is there truth to this?”

“Will my almost 15-year-old son start puberty once his treatment kicks in or will he always look like a 12-year-old child?”

“My 15-year-old lost more than 15 pounds in the last year, we’ve checked all kinds of things, but can’t figure it out. He’s on renflexis (generic Remicade) and his colonoscopy came back clean. He gets full easily and deals with chronic constipation. I hope his IBD doesn’t stunt his growth.”

“The anxiety of managing IBD while combining that with the developmentally normal anxieties of the adolescent years can result in mental health issues that are hard to pinpoint. Body image issues that are normal as their bodies change, mixing with body image and food-related issues associated with IBD (good foods and bad foods, overly focusing on diet, etc.) which can lead into worrisome territory like disordered eating and worse. As children separate from their parents more with each passing year (which is normal), it becomes harder to monitor IBD symptoms and disease progression as a parent. As someone who has always been in the driver’s seat about IBD, this is a scary shift and I worry some symptoms will go unnoticed and become exacerbated.”

“That puberty will stop growth—growth has been severely impacted by Crohn’s before diagnosis and it did—hitting puberty early meant growth stopped and she only reached 4’9”/4’10”. Her periods also add to existing fatigue levels.”

“I worry about medication not working like it used to due to so much change in the body. I also worry about how she may feel about her image comparing herself to others at that age with so many scars or if she ever needs to have an ostomy bag. I worry her IBD will affect her cycles or make them more painful.”

“That my son will go into a flare requiring heavy intervention that goes far beyond our comfort zone, but we’ll feel trapped so he’s able to grow at the right time.”

“My 13-year-old son was diagnosed with Crohn’s a little over a year ago. He is doing ok now and on Humira bi-weekly. I’m mostly concerned about his growth, as he is small for his age. He has gained about 20 pounds in the last year, but he was malnourished as COVID made it difficult to get his diagnosis. Hoping he stays on track and continues growing and that his growth potential isn’t adversely affected by his IBD.”

“As a kid who went through being on high dose steroids while going through puberty, bless my mother!”

“Delayed puberty is a big thing. Also, how, and when is it appropriate to start transitioning responsibly for ultimate transfer of care. Mental health is often a concern for adolescents (anxiety/depression).”

“Flares. Many parents report puberty as being a challenging time for IBD. Imagine all the normal teen/puberty hormonal issues and then add IBD (and I say this as a lucky parent with our teens). I think every parent that makes it out alive should get a very long vacation. The #1 thing I hear from parents of kids with IBD is: “my heart breaks every single day”. Whether in remission or not, the disease is a persistent and heavy burden on patients and families. With all the noise, it’s important not to lose sight of this fact.”

“I was diagnosed with ulcerative colitis at age 13 and it all happened very quickly. I was in eighth grade – my body changed almost immediately after being put on prednisone. Being an early developer, puberty was a challenge for me. I didn’t look like most other girls in my grade. So when I started getting really bad acne and a swollen (moon) face from the meds, it was the icing on the cake. I remember ninth grade consisted of me coming home from school and crying to my mom because I felt what was happening to me was unfair. I’d have to excuse myself during classes to use the bathroom, so everyone knew what was happening. I was mortified. And although I was an “early bloomer”, I can’t help but wonder if I would have grown a bit more if I hadn’t been diagnosed, put on prednisone off and on for the first 3 years, or started on biologic treatment. There’s always the questions and mystery of what IBD has potentially taken away from me. But living with IBD also resulted in me growing up pretty quickly. I was able to navigate the healthcare system by the time I graduated from high school. I learned to talk about my body and my health – things that I don’t believe my peers could articulate by that time. So it came with some benefits – or at least things that I have been able to turn into positives. My experiences have made me a stronger person. And I’m thankful for that.”

Impaired Growth: Why it happens and what to watch out for

According to Dr. Sabina Ali, MD, Associate Clinical Professor, Director of IBD program, UCSF Benioff Children’s Hospitals, the most common extraintestinal manifestation of IBD in children is impaired growth, particularly in Crohn’s disease and that’s also what she hears from patients and their families when it comes to their greatest concern.

“Growth is a dynamic marker of overall health in children and adolescents, which occurs in 10-30% of cases. Short stature and failure to grow can precede IBD symptoms. It is important to monitor nutrition and growth closely and as this can lead to delayed puberty. Make sure the child is routinely getting height, weight and BMI measured. Growth impairment is more common in males than females with Crohn’s disease. It’s important to get disease in remission.”

Dr. Ali went on to explain that growth issues are more frequently seen in children who have never been in remission or for those who have dealt with flare ups in the pre-pubertal period.

“Pubertal delay may potentially decrease bone mineralization and affect quality of life in children who realize that their sexual maturation is different from their peers.”

Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, agrees that remission is essential as a first step to ensure normal bone growth and pubertal development. Most of the time the concerns we hear about puberty and IBD is at the initial diagnosis when parents will note that young women have not started their menstrual cycle yet at the expected age or young men have not started their “growth spurt” yet.

“Growth is a key element of children diagnosed prior to puberty. Our goal is to provide the therapy that will allow them to be in continuous remission and achieve their final adult height and avoid any pubertal delays. If there are any concerns with this, we typically place a referral to the pediatric endocrinologist to help co-manage this.”

According to this University of California San Francisco study, boys are three times more likely than girls to deal with one of the conditions most devastating effects: the failure to grow normally. Researchers were surprised by this finding because the study also found girls had a more severe disease course than boys.

Dr. Ali says that a novel finding is that a high proportion of patients with ulcerative colitis exhibited continued growth, suggesting delayed skeletal maturation is also frequent in ulcerative colitis, contrary to common assumptions. For patients exhibiting continued growth, median final adult height was greater in males with ulcerative colitis than males with Crohn’s disease but did not differ significantly in females with ulcerative colitis, compared with females with Crohn’s disease. This finding supports the growing body of literature that statural growth impairment is more common in males than females with Crohn’s disease.”

Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, explains the importance of monitoring pediatric GI patients’ weight, height, and pubertal development over time. She says measuring weight and height and asking about pubertal development helps make sure each patient is tracking along their growth curves and developing at an appropriate rate.

“In addition to monitoring IBD symptoms and checking labs, stool tests, and scopes, monitoring growth and pubertal development is another way to make sure we are treating IBD inflammation completely. If a patient is not going through normal stages of puberty, or is going through puberty more slowly than expected, it’s a hint that we should check on their IBD disease control! And if their disease is in control, then we need to think of other causes for delayed puberty and get them in to see the right experts to help.”

Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says along with monitoring growth and nutritional status, it’s important to keep a close eye on emotional state and quality of life.

“It’s important children understand their disease, and for families and the care team to understand where the child is not only medically, but psychologically and developmentally. As a pediatric gastroenterologist, who focuses on the care of children and teens living with IBD, I know I have a unique relationship and responsibility as I watch “my kids” grow up.”

Dr. Kim says, “We see growth impairment in children and teens with Crohn’s much more so than with ulcerative colitis, especially with extensive involvement of the small intestine. Active inflammation in the small intestine can impact an individual’s ability to absorb nutrients. IBD also impacts appetite and can lead to inadequate nutrition.”

According to Dr. Kim, studies have shown up to 80% of children (males>females) have some degree of both weight and growth impairment when their Crohn’s is not controlled. While studies do vary in the range affected, it’s clearly a significant issue.

Medication and the pubescent years

In general all pediatric gastroenterologists try to limit and shorten the exposure of steroids in children.

Dr. Ali says, “Recent inception cohort studies in pediatric IBD have highlighted baseline phenotyping of patients to predict the severity of their disease course and help identify who will benefit the most from early biologic treatment. Biologic therapies have improved outcomes in pediatric IBD, including achieving mucosal healing as well as improved growth and pubertal development.”

Prior to this, the goals of treatment in Crohn’s disease were focused on controlling symptoms, enhancing quality of life, minimizing complications to prevent surgery, and restoring growth in pediatric patients. Evidence has shown that mucosal healing is associated with sustained corticosteroid-free clinical remission, reduced hospitalization, and lower surgery rates. According to Dr. Ali, biologics are the most effective in inducing and maintaining mucosal healing in this patient population.

Dr. Moses explains how biologics are decided upon with young patients.

“The age of the patient, in the context of the biologic era, does not seem to play a significant role at our center. If a child, regardless of age, needs a biologic medication, then we will typically proceed with this after shared decision making with the family. As a rule, for all ages, we work very hard to limit steroid exposure, both by planning out their maintenance therapy right away or using exclusive enteral nutrition (EEN) to induce remission in our patient with Crohn’s disease.”

Dr. Michel says it’s important to get IBD under control quickly since the window to achieve the goal of remission is so small.

“Because of this, growth and pubertal delay can be reasons to start a biologic as first line treatment. If steroids are used, they should be short-term (induction therapy only) to prevent negative impacts on growth and bone health. These patients may also be great candidates for exclusive enteral nutrition to treat their IBD, as it can help heal inflammation and address malnutrition without the side effects of steroids. Involving an experienced dietitian is key!”

While research has shown that disease activity may fluctuate with hormonal shifts (like those that happen with puberty, pregnancy, and even menopause), Dr. Michel says she is not aware of any specific data to connect loss of response to therapy because of puberty.

Puberty gets delayed

For pediatric patients in whom remission has never been achieved or for those who have frequent relapses, puberty is often delayed.

“The endocrine-hormonal mechanisms responsible for pubertal delay associated with inflammatory disease are incompletely understood. It is thought to be due to effect by both nutrition and inflammation,” said Dr. Ali.

Delayed puberty or delayed linear growth can be presenting signs of IBD to help clinicians make the diagnosis.

“Once these pre-teens achieve remission, they will begin to progress through puberty again and have improvement in their bone density, if it was low at baseline,” says Dr. Moses.

Dr Michel says, “The best way to ensure normal growth, weight gain, and pubertal development is to make sure their mucosa is healed. It’s also important we address low weight or malnutrition. If we’ve confirmed that IBD inflammation is resolved (through labs, stool tests like calprotectin, and scopes), and that patients are getting the nutrition they need, and we’re still seeing delayed puberty or slow growth or weight gain, this may prompt a referral to an endocrinologist, adolescent medicine doctor, or gynecologist to look for other causes of these problems.”

By adequately treating IBD and achieving mucosal healing, kids have the best chance to grow and develop normally and have healthy bones.

“Inflammation affects hormones important in growth and pubertal development, and delayed pubertal development is closely tied with poor bone health,” explained Dr. Michel. “Active inflammation can also worsen malnutrition and lead to low weight, which can delay puberty. These variables are often closely related; for example, a patient with active IBD may not feel well enough to eat regularly and lose weight or be malnourished. Or they may eat well but not be able to absorb the nutrients from their food. Or they may lose nutrients through stool or vomiting. So, treating inflammation and treating malnutrition are KEY to optimizing outcomes for kids and teens with IBD.”

Causes for the delay in puberty and decreased bone density can be multifactorial.

“Things we consider include nutritional deficiencies (not absorbing enough and/or not getting enough into your body), and the impact of inflammation (though pro-inflammatory cytokines – the “chemicals” produced by activated white blood cells – on sex hormone production, as well as growth hormone),” said Dr. Kim. “Other factors that can specifically impact bone density – decreased physical activity which leads to decreased muscle mass.”

When determining a course of therapy, a child’s quality of life and the impact of active IBD must be taken into consideration.

Dr. Kim explains, “Steroids have a great deal of side effects: external appearance (“moon” facies), psychological (can exacerbate underlying anxiety and depression; can impact sleep), bone health (decrease bone density and increasing risk of fractures), impact on wound healing, increased risk if long term on the GI tract (i.e. perforation), increased blood sugar (hyperglycemia), high blood pressure.”

What’s the deal with birth control and IBD?

Each pediatric gastroenterologist featured in this piece says they have heard from both patients and parents about oral contraceptives aggravating IBD. Dr. Ali says oral contraceptives are consistently linked to an increased risk of IBD.

Dr. Michel says since menstruating is a normal part of development for female patients, active inflammation, low weight, and malnutrition, can all play a role in delaying the onset of it. If a patient is flaring, they might have irregular periods or stop getting their period for some time. Once the problem is addressed—inflammation controlled, normal weight achieved, and malnutrition treated, menses typically resumes. IBD symptoms can also be exacerbated during menses for some women.

When it comes to choosing to go on birth control, and what birth control to choose, Dr. Michel advises patients and parents to be clear about their goals and weigh the risks and benefits.

“Goals for starting birth control can include regulating heavy periods or bad cramps, preventing pregnancy, improving premenstrual symptoms (mood, headache, fatigue), or even managing acne. There are some data about birth control pills increasing the risk of developing IBD, but research is conflicting about whether they increase the risk of flare. I would encourage any patient who is interested in starting birth control to talk with her gastroenterologist about what options might be best for her. An adolescent medicine doctor or gynecologist can also be extremely helpful to have these conversations, weigh pros and cons, and help young women and their families make informed decisions.”

Dr. Kim is no stranger to hearing concerns about the impact of oral contraceptives. She says it’s tough to determine whether birth control specifically aggravates disease.

“Women who have increased diarrhea and cramping around their cycles may have improvement in these symptoms when on birth control. Currently, there is not enough data to suggest birth control directly leads to aggravation of underlying IBD. However, there are other issues to consider when a young woman chooses the type of birth control. There is increased risk of venous thromboembolism (increased risk of forming blood clots) in individuals with IBD. There also is an increased risk for clots associated with combination oral contraceptives whether a young woman has IBD or not. Therefore, a woman who has IBD and goes on oral contraceptives not only has a higher risk of forming significant blood clots, but with more significant consequences from this.”

Dr. Kim’s recommendation? Avoid oral contraceptives with an estrogen component, if possible. Depo-Provera is an alternative, but you need to be aware that it can impact bone density. She says IUDs are safe and highly effective

How best to support young patients

  • Support groups: Discuss concerns regarding how a patient is coping with the IBD team. A social worker or psychologist on the IBD team can be a great resource.
  • Psychosocial assessments
  • Care coordination
  • Supportive counseling
  • Connection to resources

“As a pediatric gastroenterologist, my contribution is to manage their therapy as best I can to achieve remission. After that, we rely on our multidisciplinary team to address the psychosocial aspect of the disease and how this affects them at this stage in life,” said Dr. Moses. “Finally, we encourage the families to get involved with the Crohn’s and Colitis Foundation and attend Camp Oasis, if possible, to meet other children their age who also have IBD. This builds up their social support network in a way that can be life changing for them.”

Dr. Michel says, “I try to normalize their feelings, and reassure them that with effective treatment and achieving remission, we are working toward them reaching their full potential. I also think it’s a great time to involve experts like psychologists and child life specialists to help work through these concerns. Parents will often also ask about future fertility (kids and teens usually aren’t thinking of this yet)! It’s always a huge relief for families to learn that we expect normal fertility for our young folks with IBD and that the best way to ensure this is to get good control of disease.”

She advises parents to acknowledge how challenging it can be to go through puberty with IBD.

“Any feelings they’re feeling – frustration, anger, sadness – are ok. Then, I would encourage parents and patients to share these emotional and physical struggles with their healthcare team. Many centers have fantastic psychologists, social workers, and child life specialists that can help young people understand their disease, explore their emotions, and develop healthy coping skills that will serve them now and into adulthood. There are also fantastic resources online through ImproveCareNow and the Crohn’s and Colitis Foundation,” said Dr. Michel.

Dr. Kim advises parents and patients not to be afraid to ask pediatric gastroenterologists and their healthcare team for help.

“I really believe it takes a collective effort to support our children and teens. We are living in an unprecedented time with the COVID 19 pandemic (which has led to social isolation and new stressors with school, peers, and family dynamics),” she said. “Seeking our behavioral health resources (psychology, psychiatry, counseling, social work) is NEVER a sign of weakness – quite the opposite. One thing I would love to see: elimination of any perceived stigma when addressing issues around mental health. It is so crucial to address stress, anxiety, and depression. Besides the obvious impact on quality of life, we know that anxiety and depression can negatively impact an individual’s IBD itself. For the parents out there, I tell them they must check their own guilt at the door. The parents did NOT do anything to cause their child to develop IBD. I always say that you can be mad at the disease but never at themselves.”

Connect with these physicians on Twitter:

Dr. Sabina Ali: @sabpeds

Dr. Hilary Michel: @hilarymichel

Dr. Jonathan Moses: @JonathanMoses77

Dr. Sandra Kim: @SCKimCHP

Let this piece serve as a conversation starter as you discuss your child’s health with their care team. Ask the questions. Get empowered by learning and educating yourself more. As chronic illness patients and parents, it’s a constant learning curve—with each setback and triumph we gain newfound understanding and perspective. Stay tuned for an upcoming article on Lights, Camera, Crohn’s with guidance regarding making the transition from pediatrics to adult doctors.

Helpful Resources

Learn about the Crohn’s and Colitis Foundation’s Camp Oasis

Continued Statural Growth in Older Adolescents and Young Adults with Crohn’s Disease and Ulcerative Colitis Beyond the Time of Expected Growth Plate Closure

Oral Contraceptive Use and Risk of Ulcerative Colitis Progression: A Nationwide Study

Growth, puberty, and bone health in children and adolescents with inflammatory bowel disease | BMC Pediatrics | Full Text (biomedcentral.com)

How IBD Affects Growth in Kids and Teens (verywellhealth.com)

Pediatric Crohn Disease: Practice Essentials, Background, Pathophysiology (medscape.com)

Contraception, Venous Thromboembolism, and Inflammatory Bowel Disease: What Clinicians (and Patients) Should Know

Growth Delay in Inflammatory Bowel Diseases: Significance, Causes, and Management

Circle of Care: A Guidebook for Caregivers of Children and Adolescents Managing Crohn’s Disease