Millions of people worldwide live with IBD. For teenagers with Crohn’s disease or ulcerative colitis, the challenges are multi-faceted—not only must they manage their health, but they also face the pressures of academic life, dealing with physical and emotional challenges their peers can’t relate to, and the daunting costs of higher education. Thankfully, several scholarship programs exist to support students dealing with IBD, offering financial assistance, and fostering a sense of community and empowerment.
This week on Lights, Camera, Crohn’s a look at what scholarships are available and tips for applying. This story idea was inspired by a caregiver who sent me a direct message on Instagram asking if her teenage daughter could be awarded a scholarship for going above and beyond scholastically despite having IBD. I wasn’t aware of what is available—and in working on this article I did my research as though I was a teen/caregiver looking up scholarships geared towards those with IBD.
Why IBD Scholarships Matter
Teens with IBD often navigate difficult symptoms, frequent medical appointments, and hospitalizations. Despite these challenges, many young people with IBD excel academically, participate in extracurricular activities, and remain determined to pursue higher education. Scholarships tailored to their needs can ease the financial burden of college tuition and provide a sense of validation for their hard work and resilience.
In addition to financial relief, these scholarships can help build a sense of camaraderie among students with similar experiences. IBD scholarships are a powerful way for these teens to connect, share their stories, and feel supported and empowered in their journey toward college and beyond.
Notable Scholarships for Teens with IBD
Abbvie Immunology Scholarship: The AbbVie Immunology Scholarship aims to reduce the financial burden for students impacted by inflammatory diseases. It is awarded to 45 students. Recipients pursuing an associate degree will receive a $5,000 scholarship. Those pursuing a bachelor’s or master’s degree/PhD will receive a $15,000 scholarship.
The Salix Gastrointestinal Health Scholarship Award: Ten scholarships to 10 outstanding students living with gastrointestinal (GI) diseases and disorders who are pursuing their higher education goals. The 2025-2026 application period opened February 10, 2025, and the end date to apply is May 5, 2025.
Patient Advocate Foundation – Scholarship” In 2000, PAF established the Scholarship for Survivors program to honor these individuals by offering educational scholarships to students who have suffered (or are suffering) from cancer or a chronic illness. The deadline for submissions is March 7, 2025.
180 Medical Scholarship Program: The 180 Medical Scholarship Program is open to full-time college students living with specific medical conditions, including spinal cord injuries, spina bifida, transverse myelitis, neurogenic bladder, or an ostomy (ileostomy, colostomy, and/or urostomy). They offer seven $1,000 college scholarships annually to seven recipients. Accepting applications through June 1, 2025. Recipients are announced in August.
AAHD Frederick J. Krause Scholarship on Health and Disability: Awarded annually to deserving students with a disability who are pursuing undergraduate/graduate studies in an accredited university and who are pursuing studies related to health and disability. Scholarships are generally $1,000.
Buckfire & Buckfire, P.C. Disability Scholarship Program: The Disability Scholarship was established in 2014 as part of the law firm’s commitment to helping students with disabilities or injuries who need financial assistance for educational purposes. The scholarship awards $1,000 to one student. The deadline to apply is October 1, 2025.
Defining the Disability Scholarship: The attorneys at the Berkowitz Hanna Malpractice and Injury Lawyers offer a $1,000 scholarship to help a student overcome a disability. Students define what disability means to them and explain how disability has been part of their life. Applications are not being accepted right now but stay tuned for 2025.
Lawrence Madeiros Scholarship: The Larence Madeiros Scholarship Fund was formed to provide awareness of chronic disorders to the public and to stimulate, foster, and encourage interest, awareness, and activism at the state and national level with reference to the fight against chronic disorders. The scholarship is awarded to high school seniors living with a chronic disorder and continuing their education at a college or university. The deadline for applying is May 1, 2025.
Overcoming Disability Scholarship: The Law Offices of Coats & Todd Overcoming Disability Scholarship awards $2,500 scholarships twice a year to college students who are managing a disability while attending school. To qualify, students must have a physical or psychological disability that affects their ability to work. The deadline for applying is March 26, 2025. Their team can be reached at: scholarships@coatsandtoddlaw.com
IBD Connects Scholarship Program: To support the educational aspirations of students impacted by IBD, IBD Connect awards two annual scholarships, each valued at $1,000, to eligible applicants enrolled in a U.S. college, university, or trade/vocational school for the upcoming academic year. The application program opens March 1, 2025, and ends May 31, 2025. For any questions regarding the Scholarship Program, email Lisa Fournier: lisafournier@ibdconnectinc.org.
It’s important to note there may be other IBD-related scholarships available, this list reflects what I discovered upon researching this article.
Additional Scholarship Resources
Beyond disease-specific scholarships, many general scholarships and grants are available to students with disabilities or health conditions. Websites like Scholarships.com, Niche, and Unigo allow users to search for scholarships based on specific needs, including chronic illness or disabilities.
Additionally, some universities even offer their own scholarships for students with disabilities, including those affected by IBD. It’s always a good idea to contact the admissions or financial aid office of the school you’re interested in to inquire about any opportunities.
Tips for Applying for IBD Scholarships
Start Early: Many scholarships have early deadlines, so it’s important to start the application process well in advance of the due dates.
Tell Your Story: Your personal experience with IBD is what sets you apart. Be honest and heartfelt in your essays, sharing how IBD has shaped you as a person and student.
Gather Documents: Be prepared to provide documentation of your diagnosis, along with transcripts and letters of recommendation.
Stay Organized: Keep track of all deadlines, required documents, and any special instructions for each scholarship.
Final thoughts
For teens living with IBD, pursuing a college education can be a difficult but achievable goal. Scholarships specifically designed for students with IBD can alleviate financial stress, validate personal resilience, and provide a network of support. I was “lucky” in the respect that I was not diagnosed with Crohn’s disease until two months after college graduation, so I did not have to navigate these challenges while furthering my education and moving away from home. Along with scholarships, it’s important for caregivers and students with IBD to communicate the need for accommodations on the college campus—this can range from having a bathroom in or near your dorm room to having extra time to complete assignments. Click here to read another Lights, Camera, Crohn’s article that digs deeper into this topic.
As more awareness is raised about the challenges of IBD, opportunities for scholarships and grants continue to grow, ensuring that students with IBD can thrive academically without being held back by their condition.
Living with Inflammatory Bowel Disease is a daily challenge. The unpredictable flare-ups, the emotional toll, and the constant management of symptoms can often leave us feeling isolated, fatigued, and overwhelmed. While traditional treatments such as medications and therapy are essential, an often-overlooked but highly effective form of support comes in the form of our furry friends: dogs.
Today marks five years without my Hamilton. Not a day goes by that I don’t miss his gentle presence and the way he always comforted me through my toughest days. He was more than just a dog—he was my rock, my support, my constant companion through the ups and downs of living with a chronic illness and the most regal and well-behaved pup you’ve ever met. Never barked. Never jumped on counters or ate food off the table. Never woke me up once in the middle of the night. He spoiled me and was an absolute angel on all fours.
For those with IBD, the companionship of a dog can offer profound emotional and physical benefits. This week on Lights, Camera, Crohn’s let’s explore some of the key ways in which a dog can positively impact the life of someone living with IBD.
Emotional Support and Stress Reduction
Living with IBD often means dealing with chronic pain, fatigue, and anxiety about when the next flare-up might occur. These stressors can take a significant toll on mental health. One of the most important ways a dog can help is by providing emotional support.
Studies have shown that interacting with dogs can lower levels of cortisol, the stress hormone, while increasing the production of oxytocin, the “feel-good” hormone. The unconditional love and companionship that a dog offers can help reduce feelings of loneliness, anxiety, and depression. A wagging tail or a warm cuddle from a dog can be incredibly therapeutic when dealing with the emotional rollercoaster of a chronic illness like IBD.
Encouraging Physical Activity
Managing IBD requires a careful balance of exercise and rest, as too much physical activity can trigger symptoms, but staying sedentary isn’t ideal for overall health either. Fortunately, dogs provide a perfect solution.
Owning a dog encourages physical activity through regular walks, playtime, and outdoor activities. Research shows that dog owners are more likely to meet the recommended physical activity levels, which can be crucial for maintaining a healthy weight, improving cardiovascular health, and promoting overall well-being. For someone with IBD, staying active helps support digestive health and can even alleviate some of the symptoms of the disease.
Building Routine and Structure
IBD often requires careful planning around diet, rest, and self-care. One of the less-discussed benefits of dog ownership is how it helps create a daily routine. Dogs need consistent feeding times, regular walks, and playtime, which naturally brings structure and discipline to a person’s day. This structure can be particularly valuable for those with chronic illnesses, as it helps maintain a sense of normalcy, even when everything else feels unpredictable.
Additionally, having a dog can act as a gentle reminder to take breaks, step outside, and tend to your own self-care, whether that’s taking a walk or simply sitting with your pet and enjoying a calm moment.
Providing Comfort and Reducing Isolation
IBD can sometimes lead to feelings of isolation, as it’s not always easy to explain to others what you’re going through. Having a dog can significantly reduce these feelings. Dogs are intuitive creatures who can often sense when their owners are feeling unwell or stressed, and they instinctively offer comfort, whether it’s by cuddling up with you on the couch or simply lying by your side.
The companionship a dog provides is unconditional, and they never judge. This can be incredibly comforting when you’re managing the unpredictable nature of IBD. A dog’s presence offers emotional stability and the feeling that you are never truly alone in your journey.
Potential Health Benefits for Gut Health
Emerging research suggests that pets, particularly dogs, may even have a positive impact on gut health. While this connection is still being studied, early findings suggest that exposure to dogs, especially in childhood, might help foster a healthy gut microbiome, which could be beneficial for preventing or managing diseases like Crohn’s.
Having a dog might not directly cure IBD, but their presence may contribute to a healthier environment for overall well-being. Additionally, the companionship of a dog can help reduce stress levels, which, in turn, can have a positive impact on gastrointestinal health since stress is a known trigger for IBD flare-ups.
Offering Purpose and a Sense of Responsibility
One of the often-overlooked benefits of having a dog when living with IBD is the sense of purpose they bring. Chronic illness can make it hard to feel motivated or engaged, especially during flare-ups when fatigue and pain dominate. Caring for a dog, however, gives you a reason to get out of bed in the morning and take care of another living being.
Whether it’s feeding them, taking them for a walk, or simply providing them with love, dogs offer a sense of responsibility that can help boost mood and self-worth. This added sense of purpose can be a powerful antidote to the emotional fatigue that often accompanies chronic illness.
Social Interaction and Connection
Having a dog also creates opportunities for social interactions. Whether it’s chatting with a neighbor while walking your dog or participating in pet-related activities, dogs naturally encourage connection. This can be especially important for those with IBD, who might avoid social situations out of fear of experiencing a flare-up in public.
Dogs can help ease the tension of these social situations by acting as an icebreaker and fostering a sense of community. Socializing with other dog owners can also reduce feelings of isolation and create a network of support.
Final Thoughts
While dogs may not be a cure for Inflammatory Bowel Disease, they certainly offer a range of emotional, physical, and social benefits that can make living with the condition a little easier. From reducing stress and anxiety to promoting physical activity and fostering emotional connection, the positive impact of having a dog cannot be overstated. For many people with IBD, their dog is more than just a pet—they’re a faithful companion, a source of comfort, a reminder that even on the toughest days, there’s always someone there to offer unconditional love, and they are truly a member of the family.
Even though it’s been five years since my sweet boy crossed the rainbow bridge, my kids still talk about him almost daily. My 7-year-old prays for him every night (“Hamilton is in heaven and he’s in our hearts”) and we often talk about the possibility of getting a dog in the not so far future. Up until this point I couldn’t even imagine loving or having a new dog, as Hami set the bar SO high and I can’t fathom ever having a more perfect sidekick. I also can’t imagine enduring the horrible heartbreak that comes along with losing an animal, it’s one of the hardest experiences I’ve ever gone through and has stuck with him to this day. But how luckily are we to share such a special bond and love with an animal. I’m hopeful to adopt another dog again someday so my kids can experience the magic of it all.
If you’re living with IBD and considering adopting a dog, it may be one of the best decisions you make for your mental and physical health. After all, sometimes the most powerful healing comes in the form of a wagging tail and a warm, furry hug.
Crohn’s disease and ulcerative colitis often require medication to keep inflammation under control, but in some rare circumstances, just one medication isn’t enough. Research shows only 40 percent of people with IBD achieve remission within one year of taking a single drug. Dual Targeted Therapy (DTT) involves using two different types of treatments at the same time to achieve better disease control. This disease management plan comes to play when single-drug therapy does not adequately control symptoms or when a more aggressive treatment is needed.
This week on Lights, Camera, Crohn’s we hear from esteemed gastroenterologist Dr. Laura Targownik along with several IBD warriors who have utilized DTT to help manage their IBD.
IBD Dual-Targeted Therapy Options
There are several ways healthcare professionals can help manage IBD with dual therapy.
Biologics and Immunomodulators
More commonly, combining a biologic therapy such as infliximab (Remicade), adalimumab (Humira), or vedolizumab (Entyvio) along with an immunomodulator like azathioprine, 6-mercaptopurine, methotrexate. The purpose of this is to enhance the effectiveness and potentially lower the risk of developing antibodies against biologic drugs.
Biologics and Small Molecule Inhibitors
A newer approach involves combining a biologic with a small molecule inhibitor like tofacitinib (Xeljanz) or upadacitinib (Rinvoq). This can target different pathways of the immune response, potentially offering a more comprehensive approach to suppressing inflammation. This can be used in refractory cases and should only be prescribed by an expert IBD physician.
In patients who do not respond to single biologic therapy, there is growing interest in using two biologic agents targeting different inflammatory pathways. However, this approach is not yet widely supported as healthcare providers weigh side effects risks and this is considered experimental.
Dr. Laura Targownik, MD, MSHS, FRCPC, Mount Sinai Hospital (Toronto), Departmental Division Director (Gastroenterology and Hepatology), University of Toronto gives a case study for when she would consider using two biologics for example: in a person with fistulizing Crohn’s disease, whose fistulas have responded well to biologic therapy, she would consider adding another biologic if they’re still experiencing inflammation in the intestinal lining. Dr. Targownik says medications such as vedolizumab (Entyvio) or an IL-23 such as risankizumab (Skyrizi), mirikizumab (Omvoh), and guselkumab (Tremfya) could help to bring IBD under control.
“As a gastroenterologist, I don’t want to discontinue the anti-TNF because I fear their fistulas will worsen, so it makes more sense for me to add in a well-tolerated biologic like vedolizumab or an IL-23 to try to bring the luminal disease under control,” said Dr. Targownik.
She went on to say that patients support the idea of combining therapy with different mechanisms of action if the safety profile makes sense. Most patients who are in a position where dual therapy would be considered are open to do what it takes to get their disease under control.
Corticosteroids and Other Immunosuppressants
This is not strictly speaking dual therapy because corticosteroids are always used short-term. But prednisone in conjunction with other immunosuppressants can quickly reduce inflammation while waiting for the slower effects of immunomodulators or biologics to set in.
A Look at DTT and IBD Research
Dr. Targownik says the VEGA and EXPLORER clinical trials shed light on the potential benefits of combining biologics.
The VEGA trials looked at the benefit of combining an anti-TNF (golimumab) and an IL=23 inhibitor (guselkumab) to induce remission in people with moderate-to-severe UC.
“The combination of golimumab and guselkumab outperformed monotherapy, with a 15 percent increase in the likelihood of clinical remission and a 20 percent gain in endoscopic response. Patients then received an additional six months of either golimumab or guselkumab monotherapy,” says Dr. Targownik and the group on the dual treatment had higher rates of improvement and remission.
This suggests that the deep remission obtained early through DTT might have a sustained effect, even if you step down to monotherapy.
“The EXPLORER-CD study was an open label trial looking at high-risk patients early in the course of disease,” says Dr. Targownik. They received a triple combination with adalimumab, vedolizumab, and methotrexate for six weeks. By the end of the study, 55 percent were in clinical remission, and 35 percent were in endoscopic remission. As there was no comparison arm, it is not clear whether these rates are higher than what would be expected.”
Consequently, the use of tumor necrosis factor (infliximab , adalimumab, etanercept, and golimumab) in combination with newer agents which target interleukin (IL)-12 and IL-23 (ustekinumab, UST), a4b7-integrin (vedolizumab, VDZ) or a4-integrin (natalizumab), has become an increasing area of interest in patients with disease that is not responding to treatment.
According to a systematic review looking at the efficacy and safety of DTT, “There is an urgent need to optimize treatments for patients” so that they have a better chance of remission, which unfortunately remains unachievable for a large number of people living with aggressive IBD. More research is needed to evaluate what the optimal drug combinations are, as well as dose and frequency to limit the burden of side effects.
The DUET trials are looking at people with Crohn’s disease and ulcerative colitis, much like the VEGA study, to compare the effectiveness of golimumab + guselkumab versus either drug alone. Interestingly, in this study, golimumab and guselkumab are combined in a single medication, so even though there are two active ingredients, it is delivered like a single drug.
“If we limit our discussion to combinations of modern advanced therapies, the combination of an anti-TNF and either vedolizumab or an IL-23 holds the most promise,” Dr. Targownik says. ”The other combination that we are seeing more is combining a JAK-inhibitor with an anti-TNF for people with acute severe UC, where the JAK-inhibitor is used in addition or in place of a corticosteroid trial.”
Personal Experiences on DTT
I’ve lived with Crohn’s since 2005 and luckily have been on the same biologic since 2008. I ran an Instagram poll that asked, “Have you been on dual-targeted therapy for your IBD?” Of the 320 people who responded, 40 percent said “Yes”, and 60 percent said no. Here are some scenarios they share:
Candyce has managed her Crohn’s with infliximab (Inflectra) and azathioprine since 2020. A 10-day hospital stay led her to dual treatment therapy after she received the recommendation from both her rheumatologist and her gastroenterologist. “My GI wanted to try to wean me off the azathioprine in 2022 after a clear colonoscopy, and I flared to the point of her wanting to hospitalize me,” she says. “But I managed to gain remission with prednisone and getting back on azathioprine, along with increasing my Inflectra dose to every six weeks instead of every eight.”
Risankizumab wasn’t doing the trick on its own to control Brad’s IBD, so his GI added 28 days of Rinvoq as an alternative to prednisone. He says, “This really worked wonders. Being on both risankizumab and Rinvoq put me into biochemical remission in less than 60 days.”
Samantha’s daughter, Eloise, was on tofacitinib and vedolizumab prior to her colectomy.She shares that more families are talking about dual therapy options. “The major issue is getting these medications approved from insurance, especially for pediatric patients. Our doctor was able to get us samples of Xeljanz from a local adult gastroenterologist because insurance would not approve it.”
Kate currently takes vedolizumab and upadacitinib to manage her IBD. Previously, many biologics failed her and vedolizumab was the only one that worked, but it did not address her perianal disease. “The Rinvoq is beginning to work,” she says. “However, I will say it caused awful acne (which I’m now on medication for). I’m not out of the woods yet, but I am functioning again, and I can tell that two medications are working on what needs to be healed.”
Courtney has been on Remicade and Azathioprine since 2020, prior to that she was on Humira and Azathioprine. She says, “I had no reservations because I was sick and willing to accept any option that might bring relief. My doctor explained to me that Azathioprine helps prevent antibodies to biologics. Regular blood tests monitor for more serious concerns.”
Along with her Remicade infusions, Lauren takes methotrexate orally each week.I don’t love it to be honest. I feel much more fatigued and nauseous with methotrexate added into the regimen.”
Initially, Danielle was put on azathioprine when she was on Remicade to prevent antibody formation and to help keep trough levels high. She explains, “When Remicade wasn’t working and I switched to Stelara, we decided to keep the azathioprine on since it didn’t give me any noticeable side effects. I have had some liver abnormalities with the azathioprine. So, I’ve had to have blood work and even an MRI of my liver to make sure everything is ok (it is). Now that I’m in remission with Stelara, my doctor gave me the choice of coming off the azathioprine, but I wanted to keep it on because I haven’t been in remission so long.”
Cait receives infliximab infusions, and she takes azathioprine simultaneously. “So far, I’ve noticed a massive difference in the healing of my perianal Crohn’s.”
Katie manages her IBD with Skyrizi and methotrexate. She says the combination makes her fearful at times. “I feel like it is a lot for my body to handle, and I have never been able to tell if that is a true feeling or something that stems from the thought of it. I also want to get off methotrexate within the next year or two to prepare my body for pregnancy. But this combo has provided me with full remission and the best I have felt in years.”
Final Thoughts to Consider Before Trying DTT
It’s important to discuss whether DTT could be for you with your specialized IBD care team as DTT comes with its fair share of risks and considerations. Combining medications can increase the risk of adverse effects, including serious infections due to greater immune suppression. Also, getting dual therapies approved through insurance can be complicated, making the cost and accessibility an issue for patients.
“It is challenging to get coverage for patients to use more than one advanced therapy at a time,” Dr. Targownik says, but not impossible. “Often if a patient has another autoimmune disease, I can get one medication approved for the IBD, and then the other for the other autoimmune disease like rheumatoid arthritis.”
The Takeaway
The effectiveness of combination strategies in IBD has been demonstrated in various studies, but these decisions need to be made on a case-by-case basis, considering your personal disease severity, response to previous treatments, and overall health status. If you are struggling with getting your IBD under better control with one therapy alone, speak to your IBD physician about other options.
There’s a BIG advancement that was just unveiled this week regarding nutrition and IBD. Nutritional Therapy for IBD, a non-profit dedicated to improving the lives and health outcomes of patients with Crohn’s disease and ulcerative colitis through evidence-based adjunctive nutritional therapy, launched their The IBD Nutrition Navigator™ to the public yesterday.
It’s a project that’s been in the works for two years and it’s the first nutritional tool of its kind! This FREE resource allows patients, caregivers, and healthcare professionals to work together to find the best nutritional approach on a personal level. This week on Lights, Camera, Crohn’s we hear from Kim S. Beall, Pharm. D., co-founder of Nutritional Therapy for IBD and Dr. Ashwin N. Ananthakrishnan MD, MPH, FACG, AGAF. These two, in collaboration with dozens of healthcare providers, designers, patients and volunteers, made this resource a reality for the IBD community.
What is the Nutrition Navigator™?
The design was led by Dr. Ananthakrishnan, Harvard graduate, Director of the Crohn’s and Colitis Center at Massachusetts General Hospital and one of the top GI clinicians.
“The IBD Nutrition Navigator™ is a groundbreaking algorithm-based tool designed to assist healthcare providers and patients in determining a personalized approach to using nutritional therapy alongside medication to optimize care,” he says.
“The tool is based on discussions that Dr. Ananthakrishnan has with his patients about nutrition and how it can be used in conjunction with medications and surgery to improve health outcomes. The IBD Nutrition Navigator™ is interactive and walks providers and patients step by step through six questions to assess not only the patient’s individual disease state and goalsbut also their interest in resources for nutritional therapy,” explains Kim.
The tool is designed for healthcare providers and patients to use together in shared decision making. Once completed, the tool recommends the best fit for an evidence based nutritional therapy. These recommendations are geared 100% to the individual based on how they answer the questions. As we all know, there is not a one-size-fits-all answer when it comes to IBD nutrition, and the recommendation is never nutrition vs medication. It’s using nutrition as another tool alongside medication and other therapies.
The inspiration behind the IBD Nutrition Navigator™
Dr. Ananthakrishnan, an esteemed member of Nutritional Therapy for IBD’s medical advisor board, is the inspiration behind the IBD Nutrition Navigator™.
“He discusses nutrition with his patients and uses nutritional therapy alongside medication as part of his regular practice. “What should I eat?” is the most common question for patients after an IBD diagnosis. But because every patient is different, there is not a “one size fits all” answer to that question,” says Kim. “Weeding through the abundance of nutrition information available can be confusing and time-consuming. Dr. Ananthakrishnan felt that we should provide more guidance to healthcare professionals in a simple, evidence-based, clinical manner. And thus, the idea for the IBD Nutrition Navigator™ was born.”
A closer look at nutrition and IBD
Nutritionaltherapies used alongside medication and/or surgery can help manage symptoms, aid healing, and reduce inflammation in IBD patients.
“For a long time, it was thought that diet didn’t even matter when it comes to managing IBD. We now have growing evidence that suggests that food does indeed matter as both a risk factor and a therapeutic option,” says Kim. “Patients struggle, however, with the abundance of nutritional information AND misinformation available. They may want to incorporate nutrition into their IBD management but don’t know where to start.”
Another very prevalent struggle is malnutrition. Patients are often afraid to eat new or certain foods for fear that those foods may cause pain or other symptoms. I know in my nearly 20 years living with Crohn’s disease I was considered malnourished during my initial diagnosis and hospitalization and was watched closely when I was losing weight unintentionally prior to acute flares in the past.
At a baseball game with my brother days before my Crohn’s disease diagnosis in 2005. Little did I know I was malnourished here.
Cool features of the IBD Nutrition Navigator™ to highlight
Years of planning went into the development of the IBD Nutrition Navigator’s clinical algorithm, so the information you will find on the tool is all evidence-based and thoroughly reviewed by medical advisors.
“There are so many thoughtful features of this practical tool. First, while the development of the IBD Nutrition Navigator™ was quite complex, the result is a very straightforward, simple-to-use, interactive questionnaire. Because the tool is so concise, it can be easily used during a regular appointment with a healthcare provider. Two of the six questions gauge the patient’s interest and resources in using nutritional therapy. These questions evaluating the feasibility of and readiness for change are what makes the tool particularly unique and comprehensive. As patients and healthcare providers progress through the IBD Nutrition Navigator™, the suggested nutritional approaches appear on the screen and will adjust in real time. You can see how your answers to the questions may modify the dietary options.” says Kim.
Finally, once the recommended nutritional approach is selected, there are links to extensive resources from Nutritional Therapy with IBD to help you learn about incorporating that approach and even a recipe database with diet-specific dishes.
Tips for taking the information learned and discussing it with a registered dietitian/GI
The IBD Nutrition Navigator™ is designed to facilitate nutrition conversations between patients and healthcare providers, including registered dietitians who play a significant role in this process.
“Before using the tool, patients and healthcare providers must acknowledge that a full clinical assessment—including screening for malnutrition and eating disorders—is the necessary first step. The addition of or changes to nutritional therapy should always be made through shared decision-making between the patient and healthcare provider,” adds Kim.
Patients or caregivers interested in nutritional therapy can print this flyer to take to their provider. The QR code provides a link to Nutritional Therapy for IBD’s website where you will find the IBD Nutrition Navigator™ and many other evidence-based nutritional resources.
Final Thoughts
The IBD Nutrition Navigator™ aims to provide healthcare professionals and patients with a tool that helps us choose the right, individualized nutritional therapy to use alongside medication and/or surgery and optimize care. Once you discover the best nutritional fit, patients can gain confidence in their food choices and ultimately improve their overall health and healing.
I wish when I was diagnosed with Crohn’s in 2005 that I had a tool like this at my fingertips. A dietitian (who was not well-versed on IBD) told me I would never eat raw fruit or vegetables again and it felt like doomsday. I was overwhelmed, and at age 21, days after being given a chronic illness diagnosis, that advice devastated me. Our community is incredibly fortunate to have a tool like this so we can feel more in control and more empowered to make appropriate dietary changes that are personalized to our care and tailored to fit our ever-changing treatment plan. In addition to the IBD Nutrition Navigator™, this volunteer-led organization provides a wealth of information and resources about nutrition and IBD on its website. Click here to learn more.
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:
**This article has also been published on Tina’s blog: Own Your Crohn’s**
As two bloggers and patient thought leaders in the IBD community, we were thrilled and honored to attend and speak at the Advances in IBD conference in December 2024 in Orlando, Florida. In the article below, we come together to summarize key learnings for our IBD patient and caregiver community.
Management of Crohn’s Disease
Crohn’s can be a very progressive disease, meaning it can worsen over time and cause complications, often leading to fistulae, strictures, and therefore surgery and bowel loss. In a debate between two of the co-chairs, Dr. Miguel Regueiro and Dr. Corey Siegel, as well as throughout AIBD, a key theme was to understand if all Crohn’s patients need advanced therapies (biologics or small molecules) to prevent complications. A good suggestion was to identify those few patients who could be closely monitored but not necessarily put on an advanced therapy. The doctors agreed that almost all patients do need an advanced therapy to prevent progression of the disease. Dr. Siegel brought up an interesting point about risk-stratifying patients via a new blood test called CD-PATH, which allows physicians to better understand if a patient might be low-, medium-, or high-risk for progression of Crohn’s disease.
The conclusion at the conference was that early intervention has made a big difference in terms of improving long-term outcomes for patients. It was shown that there is an optimal time for treatment and missing that window can lead to progression of disease and potentially complications.
From stem cells for perianal Crohn’s to more options for fibrostenotic Crohn’s, many patients are waiting for more therapeutics to gain better quality of life. Patients, however, are also clamoring for more therapies for mild Crohn’s disease. There is a real void in treatment options for mild Crohn’s outside of dietary therapies and occasional use of steroids (< 1-2x a year). As patients ourselves, we advocate for more options whether that’s looking at S1Ps or new therapeutics that can help patients feel safe & comfortable that their disease is being treated.
Management of Ulcerative Colitis
In Dr. Millie Long’s talk on Defining Disease Severity in UC, she shared many pearls. Primary indicators of severity include appearance severity of disease on endoscopy and frequency of use of steroids (more often means another long-term therapy may be needed to quell inflammation). She said to also consider biomarkers (fecal calprotectin, C-reactive protein, etc.) and to keep in mind what prior therapies have been used. Dr. Long emphasized that UC can also progress like Crohn’s, and it is important to use treat to target strategies, including initiating therapy early, monitoring for disease activity using biomarkers and intestinal ultrasound, and aim for mucosal healing.
In Dr. Maia Kayal’s talk on what meds to consider if Mesalamine doesn’t cut it in UC, her key take-home message was, “Your first shot is your best shot.” She said it was important to plan wisely if you have mild to moderate UC and work carefully with your gastroenterologist to identify medication options. Dr. Kayal emphasized that certain biologics may be more effective as a first-line therapy rather than being used after one or two biologics haven’t worked, so to choose carefully. Even if mesalamine doesn’t work, there are multiple biologic options from anti-TNF agents to anti-IL-23 medications, and S1P receptors.
CurQD & IBD
Throughout the conference, CurQD received many notable mentions, which in randomized clinical trials showed efficacy in mild to moderate UC when mesalamine hasn’t cut it. CurQD is a naturally sourced formula. Cura is gut-directed form of curcumin that has been found to reduce inflammatory cytokines, restore barrier function, and positively alter the composition of the gut microbiome. QD (Qing Dai) is an extract of Indigo plants found in clinical trials to relieve bleeding, inhibit inflammation, and promote mucosal regeneration (Naganuma et al, Gastroenterology 2018, Ben-Horin et al, CCFA 2023). Dr. Kayal shared this placebo-controlled trial, that found CurQD was effective for inducing response and remission in active UC patients and has the ability to significantly decrease urgency.
Dr. David Rubin also touted CurQD as an adjunctive IBD therapy option, rather than a singular therapy, much like diet. He said while it may be beneficial, patients need to be cautious about sudden pain or obstructive-like symptoms and communicate how they’re feeling with their doctor.
Insurance barriers
Patients and providers have an uphill climb when dealing with insurance barriers, which makes managing IBD exceptionally challenging and at times frustrating for everyone involved. These proverbial hula hoops we’re all constantly forced to jump through often lead to delays in treatment and unnecessary stress. One key challenge discussed during this session was how to deal with insurance companies denying patients who have not tried 5-ASAs or steroids. Solutions shared included the GI office providing detailed documentation on the following:
listing previously tried and failed medications including steroids,
recent objective findings on endoscopy, imaging, blood tests,
sharing symptoms experienced by the patient,
referencing guideline recommendations, and
outlining the risks to the patient and the costs to the insurance company if treatment is not initiated soon.
Patients can also proactively reach out to their insurance company to determine their preferred advanced therapies and pass that intel along to their IBD team.
Another common roadblock discussed was finding out a medication is not covered or no longer covered by insurance—whether it be biologic vs. biosimilar of off-label dosing.
Patients can discuss appealing the decision with their IBD team during clinic appointments, over the Patient Portal, or over the phone. If your first appeal is denied, keep close tabs on your quality of life moving forward. If you are forced to switch, keep a detailed journal of all your symptoms to paint a clear picture of your reality.
Ask about having your GI submit a letter written by you about your patient experience, along with theirs, and make sure a doctor with knowledge of immune-mediated conditions is reviewing the appeal at the insurance company.
Providers can be supportive by showing empathy, following the latest research and including studies within insurance appeal letters. If a person is symptomatic, it would be important to rule out whether it’s active disease or an adverse reaction to medication.
Biosimilars now and in the future
The landscape for IBD therapies has changed immensely in recent years and will continue to do so in the years ahead. Stelara will join Remicade and Humira in 2025 with six biosimilar options for patients (and insurance companies). One of the main areas of improvement lies in patient education. Oftentimes we hear about the switch through a letter from our insurance company or we’re blindsided at an infusion appointment and told by our nurse that we’ll be receiving the biosimilar moving forward. As should be expected, this results in a great deal of uncertainty, skepticism, and pushback from the patient and caregiver population.
Biosimilars are biologic medical products that are highly similar to an already approved reference biologic, with no clinically meaningful differences in terms of safety, potency, or efficacy. Unlike generic drugs, which are chemically synthesized and identical to their branded counterparts, biosimilars are produced using living organisms and exhibit minor natural variability.
Dr. David Choi presented about how important proactive discussions with the patient community area to instill confidence and help educate about how safety and effective biosimilars are. Currently, four adalimumab and two Ustekinumab drugs have interchangeability, which is a designation from the FDA that allows for patients to be automatically switched (originator drug substituted) at the pharmacy level. Dr. Choi shared that providers can avoid this automatic substitution by selecting “dispense as written” on the original prescription. He went on to share that while improving access, there is also a major cost savings. Biosimilars across all disease spaces are expected to save $38-$124 billion from 2021 to 2025. The future of biosimilars is happening right now with exclusivity for golimumab and certolizumab over in 2024 and with more biosimilars in development.
Final thoughts from AIBD 2024
Overall, the main theme throughout all the educational sessions was that IBD needs to be more than just managed, it needs to be overcome with shared patient decision making. More work needs to be done to determine which patient is right for which therapy. There tends to be too much focus on the risk of therapies, rather than the risk of uncontrolled disease. The overarching goal is for providers to identify high-risk patients before we have severe disease and not be hesitant to use surgery as a treatment option when necessary. Emphasis on the importance of re-thinking the role of diet and nutrition and mental health care in conjunction with advanced therapy, looking at biomarkers 10+ years before diagnosis to see if we can prevent or diminish disease severity, utilizing intestinal ultrasound to measure drug response and disease activity in a non-invasive way, and continuing biologics in pregnancy (Healthy mom= healthy baby) were common themes throughout this fantastic conference.
As patients, we remain hopeful for the future of IBD and committed to improving patient outcomes. Lots of work still to be done, but it is impressive to see how far the science has come in the last 19-20 years since our diagnoses!
Getting a colonoscopy when you have Inflammatory Bowel Disease (IBD) carries a distinct set of challenges and trauma compared to the average person receiving a colon cancer screening scope. I underwent my 10th colonoscopy this past week as part of my Crohn’s disease surveillance and heard the word “trauma” on multiple occasions.
I received the following public comment on an Instagram post following my colonoscopy, “You seem to have trauma around colonoscopy prep. I get it, but I don’t. Childbirth is traumatic but colonoscopy prep is not. It sucks, but really not traumatic. The flu sucks, strep throat sucks, why is this so hard for people?”
…to which I responded, “Do you have IBD?”…radio silence.
*Side note—none of my 3 child births were even close to traumatic, they were all joyous, uneventful, and happy occasions. But I digress.*
I had a wonderful nurse get me ready for my scope and give my IV, I let her know I have terrible veins and that I’m a tough stick. Once the IV was started she said that it appeared I have trauma around IVs…which I said was correct. While I appreciated her recognizing this it also felt a little bit judgy. During a prior hospitalization it took EIGHT tries to get an IV started. These difficult medical experiences cause trauma. It should not come as a surprise to anyone dealing with an IBD patient that what may seem run of the mill to an average person is not the same for us. I have to tell myself not to roll my eyes when a 70-year-old tells me how “easy” and uncomplicated their colonoscopy was. Happy for them…but their experience is much different than mine.
My most recent colonoscopy experience inspired me to dig a bit deeper and help to articulate why it’s hurtful and not helpful when you try and compare a “healthy” person’s experience getting a scope compared to someone diagnosed with IBD.
Oftentimes we receive confirmation of our IBD diagnosis after a colonoscopy. The results of a colonoscopy can significantly impact treatment plans, which may heighten stress. The fear of bad news—such as disease progression or the discovery of dysplasia—can weigh heavily. We not only have to rule out colon cancer (due to our elevated risk), we also have the weighted worry about hearing we could have active disease and inflammation going on. If that’s the case we may need to stop our current treatment, start a new treatment, need surgery, etc.
Unlike the average person who may not need a scope until age 45 and then not for another 7-10 years after, we know we may need to go through the ordeal multiple times a year, annually, or every other year starting whenever we’re diagnosed (as a child/in our 20s). The frequency of needing to go through prep and the procedure is astronomical compared to the typical person and when you’re way younger than 45 and have to go through a scope it builds resentment against your body, something our healthy peers and caregivers can’t truly grasp unless they’ve lived it. The cumulative stress of repeated procedures can lead to heightened anxiety and emotional exhaustion.
Our digestion is different from yours. Prep can induce abdominal pain, nausea, vomiting, and bloating that mirrors flare symptoms to us and this in and of itself can feel traumatic. People with IBD frequently experience inflamed, ulcerated, or narrowed sections of the gastrointestinal tract. During a colonoscopy, these areas may be more sensitive, leading to increased pain and discomfort compared to individuals without the condition. The bowel preparation process—which involves consuming large amounts of laxatives to clear the colon—can be especially grueling for those with IBD. It may exacerbate symptoms like diarrhea, cramping, and dehydration, making the days leading up to the procedure particularly difficult.
Many of us take the prep a step further and start a liquid diet days before the actual prep to try and “ease” the process. I personally put myself on a full liquid diet 4-5 days prior to my scopes and then a clear liquid the day before. This takes a great deal of willpower, especially as an IBD mom making school lunches and meals for my kids, while not being able to eat any of it. Caring for a family while running on fumes is not for the faint of heart. It’s a challenge to have the energy to function while feeling hangry. Understand that we might feel irritable, fatigued, or anxious during the preparation and recovery process. Provide a judgment-free space for us to express our feelings. I’m not one of those people who feels comfortable eating a light breakfast the day before a scope, because I fear not being cleaned out enough and having to go through the experience again sooner than I need or want to.
How to Be Supportive
Acknowledge Their Experience: Validate their feelings and recognize that colonoscopies are more than a simple procedure for someone with IBD. Avoid dismissive comments like “It’s just routine.”
Offer Practical Help:
Assist with transportation to and from the procedure. Offer to babysit if the person has kids or needs help at home with childcare.
Help prepare supplies for the bowel prep process, such as clear liquids, electrolyte solutions, and soft toilet paper.
Offer to stay with them during recovery if needed.
My husband always makes a point to take our kids out to dinner or try and not eat in front of me while I’m prepping, this makes a world of difference. We also always go out for a big breakfast or lunch date immediately following the procedure.
Provide Distractions. During the prep period, suggest activities to keep their mind off the discomfort, such as watching movies, playing games, or listening to calming music.
Encourage Communication with Healthcare Providers. If they’re particularly anxious or in pain, encourage them to discuss these concerns with their doctor. Sedation options or anti-anxiety medications might help make the procedure more tolerable. I always make sure I have Zofran on hand to take prior to my prep to help with nausea. I still always vomit at least once, but it does help.
Respect Their Privacy: Everyone copes differently. Some people may want to talk about their experience and post about it on social media, while others may prefer to keep it private. Follow their lead and respect their boundaries.
Final thoughts
Colonoscopies are a critical tool in managing IBD and being proactive about colon cancer screening, but they can be uniquely challenging for those living with Crohn’s or ulcerative colitis. By understanding the physical and emotional toll of these procedures, friends and family can provide better support and help ease the burden.
My ask for friends, family members, and medical professionals with patients or loved ones who have IBD and are undergoing or gone through a colonoscopy is to refrain from comparing your own experience with us. Show compassion. Be kind. Remember that colonoscopies carry a sense of trauma for many of us, and for good reason. We are not weak. We are not complainers. If you lived our reality and been through what we have, I guarantee it wouldn’t feel like a walk in the park. Not many 41-year-olds I know have had 10 colonoscopies. With patience, empathy, and practical assistance, you can make a difficult experience a little more manageable for someone with IBD.
Inflammatory bowel disease is increasingly recognized as a condition associated with systemic complications beyond the gastrointestinal tract. Among these, cardiovascular (CV) complications stand out due to their potential impact on morbidity and mortality. One of the presentations I attended at the Advances in IBD conference that took place in Orlando this month explored the relationship between IBD and cardiovascular disease, focusing on the effects of disease activity and commonly used therapies. This week on Lights, Camera, Crohn’s a look at what we need to watch out for as a patient community and how we can be proactive with our providers.
Cardiovascular Risks in IBD
Meta-analyses indicate that IBD is associated with a 24% increased risk of ischemic heart disease. Moreover, there are higher rates of premature (under age 55) and extremely premature (under age 40) atherosclerotic cardiovascular diseases in our population. The underlying mechanisms are multifactorial, but persistent inflammation and disease activity are key drivers of arterial events.
Heart failure (HF) risk is also elevated among individuals with IBD. Notably:
The risk appears greater in patients with ulcerative colitis compared to Crohn’s disease.
Female patients with IBD demonstrate a higher predisposition to HF than their male counterparts.
Corticosteroid use further exacerbates the risk of HF in this population.
Cardiovascular Considerations for IBD Therapies
Anti-TNF Therapy
Anti-TNF agents (infliximab, adalimumab, certolizumab pegol, and golimumab) have been linked to worsening congestive heart failure (CHF). In patients with pre-existing heart conditions or known cardiomyopathy, baseline cardiac assessment is critical. Recommendations include performing a transthoracic echocardiogram (TTE) before initiating anti-TNF therapy and monitoring for new or worsening cardiac symptoms during treatment.
JAK Inhibitors
The use of Janus kinase (JAK) inhibitors ( Tofacitinib, filgotinib and Upadacitinib) raises concerns regarding cardiovascular risks, including:
Increases in low-density lipoprotein (LDL) and triglycerides.
Development or exacerbation of hypertension.
Major adverse cardiovascular events (MACE).
For patients starting on JAK inhibitors, clinicians should:
Discuss the patient’s cardiovascular history and risk factors.
Perform a baseline lipid profile, with a repeat evaluation at 8-12 weeks after initiating therapy.
S1P Receptor Modulators
Sphingosine-1-phosphate (S1P) receptor modulators, a newer class of therapies for IBD (ozanimod, etrasimod, fingolimod and laquinimod), can impact cardiac conduction. To mitigate risks:
Screen for symptoms suggestive of conduction abnormalities.
Review the patient’s drug history for concurrent use of anti-arrhythmic agents or drugs that prolong the QT interval.
Perform an electrocardiogram (ECG) prior to initiating therapy.
Clinical Implications
Cardiovascular complications are common in patients with IBD, often presenting at a younger age than in the general population. The association between active disease and increased CV risk highlights the importance of maintaining disease control. Non-steroidal options for long-term management should be prioritized, as corticosteroids exacerbate both IBD and CV risks.
Therapeutic decisions should also account for the cardiovascular safety profile of IBD medications. High clinical suspicion and proactive monitoring are essential for detecting underlying or developing cardiovascular disease in IBD patients. Understanding the risks associated with specific therapies, such as anti-TNF agents, JAK inhibitors, and S1P receptor modulators, can guide personalized treatment plans and improve long-term outcomes. When meeting with your gastroenterologist communicate any concerns you may have about chest pain or your blood pressure.
Closing Summary
Cardiovascular complications in IBD patients necessitate a high level of vigilance from healthcare providers. Early detection and management of cardiovascular risks are paramount, particularly in young IBD patients who may already be vulnerable to inflammation-driven atherosclerotic changes. A tailored approach—balancing effective disease control with an awareness of therapy-specific cardiovascular risks—is critical to optimizing care in this complex patient population.
Nothing prepares you to hear that your child has Inflammatory Bowel Disease. For many, it’s the first time ever learning about what the weight of those words even means. Not only is a chronic illness at a young age an incredibly heavy burden to bear, it can feel isolating to not only the patient but the caregiver. This inspired The University of Chicago to launch the IBD Kids Club in February 2024. This week on Lights, Camera, Crohn’s learn more about how you can connect with others living your reality and find community, regardless of where you live.
Recognizing the need
Dr. Amelia Kellar, MD, MSc, FRCPC, Assistant Professor of Pediatrics, Director, Pediatric Intestinal Ultrasound University of Chicago Medicine/Comer Children’s Hospital says one of the most common concerns she hears from patients and their families is that they don’t know anyone else with IBD or where to go for support.
“I always refer my patients to Crohn’s and Colitis Foundation, but this also inspired me to create a community for these kiddos more locally…a place where they could authentically meet one another both virtually and in person, and know they are not alone.”
Dr. Kellar wants her patients to see kids who are older than them doing all the things they aspire to do and have examples of adults who are living and thriving with IBD. So far, the feedback has been extremely positive—families are grateful to meet one another where there’s no need to explain and there’s comfort in shared experiences.
Get connected to the IBD Kids Club
The group meets virtually every 2nd Tuesday of the month on Zoom at 6 pm CT. Dr. Kellar says it is tough to find a time that works for everyone, but she’s found the dinner hour allows for kids and parents to join together and chat. The next meeting is Tuesday, December 10th.
“I feel very fortunate as I have a great team of GI docs, nurses, dieticians and psychologists that join for different sessions and I co-lead with one of our adult IBD nurses who is also a counselor at Camp Oasis and openly talks to the group about her diagnosis of UC and journey through J-pouch surgery,” says Dr. Kellar.
When she started the group, Dr. Kellar polled participants for what they would like the group to be, whether they wanted to simply chat with one another and offer support, whether they wanted some guest speakers on topics or in person events… and they indicated they wanted a mix, so they have had some support/chat sessions, some guest speakers, and a live cooking class with their IBD dietician. There has not been an in-person event yet. I let Dr. Kellar know in the months ahead I would love to join one of the calls, meet the families, and share experiences.
Everyone is welcome
Dr. Kellar is looking to get the word out—and wants all pediatric IBD warriors and their caregivers to know they are welcome to join.
“I want this group to be open to everyone—regardless of where you live or where you receive care. I want the IBD community to know they are not alone. We talk a lot about how every single person in the world has something that is challenging and that they may or may not choose to share with others and you would never know when you see someone at school, work, on the street, what challenges they might be facing. At the same time, finding people who have faced or are facing similar challenges can offer a unique support system. Our hope is that this group unites children and families with IBD and fosters connections, friendships, and support so no one ever feels alone with their challenges,” says Dr. Kellar.
If you’re a young girl or woman diagnosed with a chronic illness, prior or during your “childbearing” years, chances are you or your parents may wonder what this means for your future family. When I was diagnosed with Crohn’s disease at age 21 in 2005, the thought of settling down and having kids was not on the radar but ever since I was a little girl I always aspired to be a mom. Fast forward to 2008, I was hospitalized for an abscess and taken off Mesalamine and put on a biologic injection (Humira). I can still picture the discussion with my GI. My mom sitting on the couch alongside the hospital window, looking at me wide-eyed, and us wondering if I’d ever be able to have children on my new medication. A medication I was told I’d be on for the rest of my life. I was 24. Back then there was nowhere near the research or guidance available like we have today.
August 2008-One month after starting Humira and on heavy duty steroids.
It was the first time I really began to question and worry about whether I’d physically be able to be a mom. As the flare ups, ER visits, hospitalizations, and tests persisted for years, I honestly didn’t have the energy to think about what my life would look like down the road, I only had the energy to focus on what was going on in that moment. I was not a patient advocate and looking back I was a bit naïve and uneducated about what it meant to have not reached remission.
When I met my husband in 2013, little did we know that for the next two years I would be at my sickest. What we did know—is that we both wanted kids one day. After my third bowel obstruction hospitalization in 15 months, I needed bowel resection surgery in August 2015, which FINALLY put me into surgical remission. Ironically, I was engaged to be married. Babies were on the brain. Since I lived a decade without remission, we knew we were going to have to try for a baby as soon as we got married, as remission can be fleeting. At 32 years old, I didn’t want to take any chances.
A lot has happened since we got married. We got pregnant a month after getting married. Lost our second baby around 7 weeks. And then had our rainbow baby in 2019 and our caboose of the family in 2021. If you’ve followed my advocacy and blog, you know I’m passionate about showing all that’s possible despite your IBD. I know each of our journeys is incredibly intricate and unique, each of us deals with our own set of challenges. But I also know that my younger self would have benefited immensely from seeing and hearing fellow women who’ve been there and done it and have families to show for it despite their chronic illness.
This week on Lights, Camera, Crohn’s we hear from several IBD moms—with kids ranging from newborn age to now adults—who offer amazing perspective that I hope will make you feel comfort in what the future could hold for you.
What IBD moms want you to know
Jennifer: “It’s 100000000 percent worth it! And be honest with your kids and spouse about how you are feeling and what you are going through. Of course, make it age appropriate, but they need to know the struggle.”
Liz: “Your kids will learn their limits and love on you when you need rest. It’s ok to go slow. Even if you flare after birth, you will come out of it.”
Amber: “I would tell a younger me that my body WAS capable of carrying and delivering healthy BIG (lol) babies. After struggling with fertility and then conceiving twins and carrying them full-term, I realized my body hadn’t failed me (how I think so many of us with IBD feel. Motherhood is possible for us and thank you Natalie for reminding us of that.”
“Find your people and be honest with them about how you are doing. Don’t ever feel bad asking for help. It truly takes a village to help.”
Brooke: “One day, you will be better. One day, you will coach little league and make the playoffs. One day, you will work on Capitol Hill. One day, you will live in another country. One day, you will be the best mom and you will thrive through IBD. You’re almost there!”
Jaime: “I would tell my younger self that fertility is not something you take for granted especially with a chronic inflammatory disease that can leave you prone to developing scar tissue. I’d also tell her that IBD may make life hard for awhile but with the right doctors, life will improve and the family you dreamed of having will happen.”
Jessica: “Motherhood is hard. It’s ever harder when you have an illness. It’s ok to rest when needed without feeling guilty.”
Kaitlyn: “Your kiddos are more resilient and adaptable than you think they are. I had a major flare about 7 months after my son was born. I put off being admitted to the hospital for weeks because I was so scared and felt guilty for leaving my baby and thinking he would feel abandoned without any way to explain to him that I was gone. He ended up having a blast with my husband for a week and I finally was able to achieve some sense of relief (slowly coming out of that flare, but there is a light at the end of the tunnel). Also, you’re not a bad mom for not being able to do the things you think you should be able to do (Spoiler Alert: Your baby doesn’t know other moms take their babies on long walks around the park and don’t have to drag you into every public bathroom you pass while running errands).”
Patti: “You only get one chance to raise your babies, so don’t sweat the small stuff. And frequently remind yourself (on the roughest days) that you really ARE doing the absolute best you can…and that is OKAY.”
Alyssa: “Sometimes you’ll be holding your baby on the toilet, but you’ll be okay, and your baby will be okay. The road will be tough, but so worth it. Some days the kids will watch more TV than you want, but you must take care of yourself too so you can be present for them. They’re resilient and will love you no matter what.”
Ally: “Rest when you can! Your body will most likely go into remission once pregnant so not need to get scared or nervous about it.”
Liv: “Make yourself and your health a priority. I went into a huge flare after having my first baby because I was SO focused on her and not eating properly or showering or taking care of me. Meal prep to make the mental load of eating easier! And ask for help!”
Patra: “Don’t be so hard on yourself when you feel the need to rest.”
Phoebe: “I would tell her to follow Natalie Hayden’s blog and IG account (haha)…seriously though, when I see you and other people share about their pregnancies and family life, it gave me hope to have my child. I would also tell my younger self it’s ok if you’re a mom with chronic illness! My younger self assumed I had to have a perfectly healthy body to have babies and raise babies.”
“Take care of yourself, even if it means asking your loved ones to look for signs of your anxiety and exhaustion that you may just be trying to push through or ignore.”
Jenni: “I would tell myself not to be so hard on myself. I would say don’t take on all the sick mom guilt. To let them watch movies and eat cereal without stressing about it when I wasn’t feeling well. I would also say…you don’t have to pretend to be brave all the time. It’s ok for them to see you cry or feel frustrated or be sick. They can handle it, and it is creating such strong, caring, empathetic humans!”
Courtney: “I would tell my younger self that I am enough for my kids and that they will be better people because of what they learn and see.”
Mallory: “Your children are strong, and they understand that it’s not your fault.”
Meg: “You did the right thing by staying on your meds through pregnancy and your baby is perfect.”
Kelly: “You are enough. Don’t feel like you’re not able to be as great of a mom as a healthy mom is.”
Ryann: “All you need is love. While I’m sure my son loves the active days when we’re doing lots of activities, he’ll be fine on the days that I’m laying down on the couch as long as I show him love.”
Rachel: “You’re stronger than you know, and everything will work out no matter what happens.”
Amanda: “Not to let fear of the “whatifs” cripple you.”
Brenda: “You will do great and be sure to find a selfless hands-on partner.”
Kristin: “Give yourself some grace. I didn’t get diagnosed or have any Crohn’s issues until my son was 15 months old. The symptoms came on like wildfire and it took a village to help until I figured it all out.”
Anna: “I want to jump in this convo as a 50 year old who wanted to be a mom, but due to the severity of my disease (diagnosed at 18), was told at 29 to have children by 35 due to being high risk and at 34, I was told not to carry due to complications and unfortunately adoption was not in my future as a single woman with severe illness no another option (freezing eggs, etc.) at that point in time. I feel like that is the MAIN thing Crohn’s stole from me! After many years of therapy, I cope with it very well now; however, I still from time to time mourn not being able to have children that aren’t four-legged…#dogmama!”
Courtney: “I would tell my younger self not to worry about having to use the bathroom urgently so much and that you’ll be carrying around diapers, wipes, and a little potty in your car for years. Your kids will also be able to relate to having accidents. I would all tell her that fertility declines a lot faster for people with chronic inflammation and to get your AMH levels checked early. Or think about freezing embryos if you want a big family in your mid to late thirties. Lastly, that breastfeeding won’t stop your kid from having IBD, so don’t worry about giving them formula.”
Ashley: “So, one time I posted on Reddit about how I have ulcerative colitis and didn’t know if I should have kids…I got a lot of responses. I got 56 that told me not to do it. How they were miserable. Or how their mom had it and they suffered as a kid. It was honestly traumatizing. And int that moment, I made the decision not to have kids.”
Tricia: “There will be some really tough days with your illness, and trying to take care of your kids, but you’ll get through this, and better days are ahead.”
Shannon: “Nap when the baby naps is legit. But also, when the baby is 12, you’re still going to need to take a nap. And that’s okay. It doesn’t make you less than because your body requires rest and reset. It is productive to take a nap if it’s necessary.”
Chanel: “That this chronic illness has a direct effect on pregnancy. Having this disease since 7 years old, no doctors ever thought it would be helpful to mention how important being in remission was before getting pregnant or trying for a baby until I was 26 years old and happened to nonchalantly mention to my doctor at the time that we were going to start trying.”
Jennifer: “Don’t worry! You will be blessed with two beautiful children and IBD will not define who you are and will not hold you back from anything!”
Stephanie: “Be easy on yourself and don’t put high expectations on yourself. It will all be worth it. Take it a day at a time and do what you need to do to feel better. Your kids will learn and be more empathetic and compassionate people for it.”
Bhavna: “It’s going to be hard. More emotionally than physically. You will even doubt whether you should have kids for fear of passing it on. I know eventually I did. My daughter now has an autoimmune condition. But despite all of this, you will make it through. Stronger. Resilient. Sometimes a tad sadder.”
Rosanne: “Kids are more resilient than you think. Motherhood is worth having to potentially miss a few things because of a flare or a difficult day. Your kids will understand and be stronger because of it.”
Pie: “Mum guilt will chew you up on the days that you can’t get out of bed. It’s okay, your little one will grow up to be empathetic and understanding of others.”
Amy: “I was completely well for the 8 years I was pregnant and breastfeeding my three boys. Almost a year after finishing feeding my youngest, I immediately went into a massive flare and have not managed to recover yet (10 months now). I felt betrayed all over again by my body, just at the time when I needed it to be strong. I would tell her that the most important thing is that you’re well, so that you can be the best version of yourself. Children are beautiful, they will take you exactly as you. Try to follow their lead. You are enough. They will forget at times you were absent due to resting, appointments, etc. But they will remember how hard you fought for your health. My middle school boy now seems to be suffering with gastro issues and it’s essential to me that I show him that I have the disease, it does not have me (enough though some days that doesn’t quite work out).”
Megan: “Some days are hard, but you can do it! You will be shocked at how much compassion it gives your children. They understand “mommy doesn’t feel well” at such an early age and really want to help take care of us. Vivi asks me daily, “Mommy, does your belly hurt today?” and says, “I’ll take care of you, Mommy.”
Kara: “Don’t forget to take care of you before it’s too late! You are doing your best and your children will only remember that later. My kids are 8 & 10 now, but when I was pregnant with my youngest, I went into a flare and refused to tell anyone or acknowledge it, thinking it would make me a bad/weak mom…so dumb right? By the time my youngest was 1, I was making an appointment for a temporary ileostomy bag. But my kids only remember the sweet stuff.”
Stephanie: “Simply, it’s possible! It was worried for so long that it wasn’t possible, especially once on a biologic and your Instagram page, Natalie, gave me so much hope! Now, less than 2 weeks from delivering my second baby (but my first pregnancy on a biologic).”
Marnie: “I would tell my kids your disease becomes part of your everyday routine, but it doesn’t define you.”
Crystal: “Make sure your baby learns to take a bottle in case you end up in the hospital with a flare.”
Leslie: “Don’t be scared to be on all the medication you need. You’ll get pregnant one day like you always dreamed.”
Keyla: “This journey will be hard but no matter what your little one becomes stronger through it with you.”
Christine: “Here I am celebrating my 47th birthday with my teenagers! One of the first questions I asked my doctor, according to my mom, was will I be able to have kids? That was when I was 23 years old. Here I am at 47, and they have seen me at my best, and unfortunately, my worst. They are truly the reason why I keep going and want to keep fighting at the worst of times.”
Amy: “Your journey might look different than others, but you can still have a family. Also, accept help when you need it.”
Robin: “My kiddos are 27 and 25 now and I was diagnosed when the 27-year-old was 2.5 and the 25-year-old was a baby. She turned one and took her first steps in the family visiting room at the hospital. So, I have the benefit of living with the fruits of my parenting labor. My IBD has taught me that life is precious. Each moment is precious. Because of this, I really tried to take advantage of life when I was feeling well. AND ALSO, I tended to push through when I wasn’t feeling well if something was important to my family, specifically my children. Your first instinct as a parent will be to protect your children from what you are going through – but it’s ok to be open about what you are experiencing in age-appropriate ways. There is no one perfect way to be a parent, much less be a parent with a chronic illness. Give yourself some GRACE.
If dads, or aunts, or family friends, or grandparents are jumping in to chauffeur your kiddos and/or take them to do fun things that you can’t do – IT STILL COUNTS! Your kids are still getting to do the thing. Your kiddos will benefit from having other adults they know and trust in their lives.
Parenting isn’t for the faint of heart. Connect with people that can share the burden. It’s ok to ask for help. I write this while remembering my mantra was “suck it up and figure it out” when they were little. Granted – I was a single parent for a lot of their young life, and I was fortunate to have a strong support system. Even with the support it was difficult to ask for help. SO, ASK FOR AND ACCEPT HELP.
I don’t know what kind of mom I would have been without IBD, but based on who my girls are now, I’m ok with the mom I was and am with IBD.”
Final Thoughts
Hearing this firsthand perspective from all these incredible IBD moms is so inspiring and comforting. It’s a reminder we are not alone in our struggles or our fears—and let’s face it, motherhood isn’t all sunshine and rainbows. But the beauty motherhood brings to our lives and the unbelievable love you feel for your children is the sunshine and the rainbows that makes it all worth it. When you’re an IBD mom, yes there’s a lot of internalized pain and worry. But there’s also so much motivation and joy found in looking into the eyes of your children and knowing that you are enough and will always be enough for them because you’re you.
There are times when their diapers and bathroom habits may set off alarm signals in your head. Don’t think I haven’t brought one of my kids to the ER because I was fearful, they had IBD…wasn’t that. There have been moments where I’ve been bent over making school lunches. There are times I’m on the couch with a heating pad during bedtime stories or in the bathroom mapping out my game plan of how life will go on if I’m hospitalized, and all the moving places I have to orchestrate if I’m out of commission. But SO much overshadows those moments.
As an IBD mom of three, my kids give me such purpose to celebrate each day and soak in each experience I’m blessed to share with them. They provide me with renewed faith in my body and all that I’m capable of. They remind me to laugh and not take life so seriously. When I’m in pain or going through prep for a scope or an uncomfortable procedure my thoughts float to their sweet faces and the incredible memories we’ve shared and it’s the best reprieve from my painful current reality.
When you’re a mom with chronic illness, sure the days can feel long and the years short…but you have a different level of gratitude for what may seem mundane to others. You will second guess yourself more than your children ever will. They are sponges, watching and soaking up their lived experience with you and without even doing anything you’re raising a children with innate empathy and compassion that you’ll see play out as they grow up—I’ve seen it for YEARS with my kids—and while I wish they weren’t the way they are because of my health, I also wouldn’t have it any other way. IBD is a family disease, it impacts way more than just the patient and know that if you choose to carry children, adopt children, or have babies through surrogacy, you are never a burden to your family. You are enough and always will be to your beautiful babies.
My family planning advice for you
My advice family planning
Have the discussion about your future 3-5 years out (if possible) so you can get a game plan in place. Something as simple as letting your provider know…”someday I hope to be a mom”…is sufficient. This sets the stage for what makes the most sense medication wise, targeting and tracking remission, planning scopes so you can get the ‘green light’ before conception, etc.
Do not try and conceive if you haven’t been in remission for at least 3-6 months. Sure, pregnancies are not always planned and can be a surprise but try not to get pregnant while you’re flaring or have active disease as that increases the likelihood of flaring during pregnancy and after delivery.
Once you find out you’re pregnant, alert your GI the same day as your OBGYN and get the ball rolling on finding a maternal fetal medicine (high risk OB) to be part of your care team.
Do not try and go rogue and go off all medications for pregnancy. Talk with your care team. Do the research so you can see firsthand about the safety and efficacy of most IBD meds in pregnancy and breastfeeding and be confident that by keeping yourself well and your disease controlled in pregnancy, you are helping you and your baby.
Check out the PIANO study and MotherToBaby research opportunities so you can help pave the way for future IBD moms and contribute to research. It’s so rewarding, and your voice and input makes a world of difference. My older two were part of MotherToBaby studies and my youngest is part of PIANO, he’s being “followed” until age 18!
Never hesitate to reach out to fellow women with IBD on social media who are moms and receive firsthand advice about their journey so you can feel a bit more at ease about yours.
lights camera crohn's 