Traveling with inflammatory bowel disease (IBD) is rarely as simple as packing a suitcase and showing up. It’s logistics, emotions, planning, and flexibility. It takes a bit of hypervigilance. This layered on top of a disease that doesn’t take vacation days. But it is possible. And for many of us, it becomes one of the most empowering reminders that life with IBD can still be adventurous, and rich with new experiences.
This week on Lights, Camera, Crohn’s you’ll hear from two incredible IBD advocates, Kelly Dwyer and Rachel Verbanac. They both open up about their diagnoses, their anxieties, their coping strategies, and their go-to travel essentials. Their honesty and wisdom offer a roadmap for anyone who wants to explore the world without letting IBD call all the shots.
Meet Kelly: 21 Years of Symptoms, 7 Years Diagnosed
Kelly may have been diagnosed with Crohn’s disease in 2018, but she’d been living with severe perianal fistulizing ileal Crohn’s since the early 2000s.
“Before diagnosis, I avoided significant travel whenever possible because I was so ill. And when I did travel, I tried so hard to plan for every single scenario that it became stressful for me and everyone around me.”
Now in deep remission thanks to medication, Kelly still plans intentionally, but the difference is that the planning empowers her instead of holding her back.
She structures trips around:
Her injection schedule
The time of day she flies or drives
What foods she eats before travel
How to pace her energy
And what she needs to stay healthy while surrounded by crowds
“I wear a mask, use sanitizer constantly, wash my hands as much as I can… it all helps me feel like I’m doing what I can to set myself up for success.”
Kelly on Travel Anxiety: The Trauma Stays with You
Despite years of remission, Kelly still carries fear rooted in lived experience.
“I constantly worry about not making it to a bathroom. Even though it has not happened in years, that trauma stays with you.”
Kelly also experiences nausea, anxiety and a whole lot of gas and burbling guts when she travels.
“Finding the right medication cocktail that keeps things calm and in order in my guts (and brain!) took a lot of trial and error, but was worth it for me to find a combination to give me confidence that I’ll feel like I’ve done everything I can to get the trip off on the right foot. I would recommend you ask your doctor or GI about Zofran, anti-anxiety medications in small doses, Gas-x, antacids, and other OTC medications that might help you to make sure they’re safe for you to take.”
She’s built a system that helps her feel confident when she’s traveling:
Depends or heavy-duty panty liners on days she’s unsure
Change of clothes and wipes in her purse, not her carry-on
Imodium and emergency meds ready to go
Small meals before and during travel days
Medication for nausea, anxiety, gas, and gut discomfort
“I had to learn to relax into the chaos of travel and not panic when plans change. Travel is unpredictable—but so is Crohn’s.”
The Power of Protection: Insurance (Both Emotional and Literal)
Kelly is adamant that travel insurance is non-negotiable.
“I have used travel insurance many times for flare-related cancellations. It can be heartbreaking to miss something important, but it’s not your fault. This is your reality, and you’re doing your best.”
She also communicates openly with travel companions, so expectations are clear and compassionate from the start.
“Find as much peace as possible. Asking for everyone’s understanding and compassion, is so important. I remind myself that it’s not my fault that I am unwell. It’s not anything I did to cause the flare. This is simply my reality, and I am trying my very best, even if it doesn’t always work out the way I’d hoped.”
“Treat yourself with compassion, always. Build in extra time everywhere. Your comfort is worth it. Having a few extra hours at the airport to sit and read a magazine is much preferable to rushing through security lines and not being able to use the bathroom before getting on the plane because you’re late.”
Meet Rachel: A Travel-Lover Who Refused to Stop Exploring
Rachel was diagnosed with Crohn’s disease in 2021, right as she was going back to nursing school. Before that, she spent months living a nomadic lifestyle in New Zealand and expected to spend her twenties exploring the world. Her diagnosis meant rethinking what travel could look like. Requiring infusions changed everything.
“Hiking the Appalachian Trail used to be a dream, but with the need for insurance, pharmacy authorizations, infusion clinics, and access to university health systems… that lifestyle just wasn’t realistic anymore.”
But Rachel didn’t stop traveling. She adapted.
How Rachel Travels Now
Rachel describes herself as someone who “packs her anxieties,” but in a productive way.
Her prep includes:
Bringing a med kit stocked with small doses of essential meds
Monitoring hydration closely on travel days
Planning meals and bowel habits ahead of time
Understanding bathroom access in each country
Carrying small local currency bills for paid restrooms
Bringing a letter from her provider outlining her diagnosis and meds
“After many international trips, I’ve proven to myself that how I feel at home reflects how I feel on the road.”
Rachel also buys comprehensive travel insurance that covers pre-existing conditions, often from TinLeg, and encourages others to read the fine print carefully, especially regarding upfront payment rules.
“I feel much more secure knowing all medical bills will be paid for should I need anything abroad. Beyond health insurance, I have used the insurance for trip interruption and costs of delays. I also have my provider write me a letter stating my disease, common side effects, and my current medications. This letter can be useful when seeking care at a new clinic or if TSA should ever give you a difficult time (I have never experienced this). I like having the physical letter in the med kit.”
Bathroom Access: A Cultural Learning Curve
When traveling with others, Rachel gives them a heads up that access to bathrooms is a priority for her. Especially when traveling in Europe.
“Europe often requires a purchase to use a restroom. You cannot just run into a McDonald’s.”
Her strategy?
Plan ahead
Carry cash: Having a few small bills in the local currency is helpful to make a quick sale or pay at public bathroom stations in some countries.
And she always tried to keep everything in perspective, even when the unexpected happens.
“Accidents are embarrassing, but you will most likely never see these people again. It is okay. You are okay.”
Travel Anxiety: You’re Not Alone
Rachel acknowledges the fears that come with IBD, but her message is clear:
Do not let IBD keep you from seeing the world. Start small and your confidence will grow.
She now travels to Mexico annually and cannot imagine winters without it.
Nurse-Approved Safety Tips from Rachel
Some of her favorite reminders:
Even healthy travelers get GI bugs—be cautious with food and water. Taking general precautions like only drinking bottled water in areas where the water might not be safe to drink, sanitizing your hands often, and avoiding touching your eyes and mouth are still the best ways to prevent infections.
Avoid buffet sushi
Choose made-to-order stations
Read resort and food reviews. She checks out Google reviews, TripAdvisor, and Hotels.com to see what people have to say before she books a trip.
Wear an N95 on flights to avoid illness and see if your travel companions will do the same to help keep germs at bay.
Advocate for yourself with travel companions
Read Google reviews quickly if you’re unsure of a restaurant, locals and travelers will share if they got sick eating there. Look for highly frequented places.
As a nurse, Rachel has these words of wisdom for our community, “Don’t let IBD keep you from seeing places and experiencing new cultures. Often as patients we have anxiety and unknown destinations can seem overwhelming and scary. Start small and your confidence will grow, promise.”
Rachel’s Travel Med Kit
She carries:
Doctor’s letter
Hand sanitizer
Tylenol
Imodium
Pepto
Tums
Fiber
Gas-X
Benadryl
Dramamine (also helpful for intense nausea)
Zofran
Liquid I.V.
Band-Aids that are a few sizes
Contact solution or small vial of artificial tears (I wear contact lenses)
A few doses of Dayquil and Zyrtec—when changing the container medication comes in, be sure to write the dose (mg or ml or the number of pills) and how often you take it.
A tube of triple antibiotic ointment and hydrocortisone ointment (for scrapes and bug bites)
Final Thoughts: You Deserve to Experience the World
Traveling with IBD takes more planning, more flexibility, and more courage than most people will ever understand. But as Kelly and Rachel show, it’s possible and it can even become empowering.
As someone who was diagnosed with Crohn’s more than 20 years ago traveling can still make me feel a bit uneasy. I always keep pain medication, Zofran, and Dramamine in my carry on. If you have to pack your biologic medication, keep that on you as well. It’s important to check how long your injection can be out of the fridge. Nowadays, Humira for example, can be unrefrigerated for up to 14 days. If you have to do your injection while away from home, make sure to have alcohol swabs and an ice pack (if you are used to using one).
I never drink caffeine prior to flights or long road trips, and I eat very light until I am at my destination. I try to dress as comfortably as possible, and do not restrict my belly in any way. The moment I get to my hotel room I take off my travel clothes and shower. If you are traveling and feeling symptomatic, it can be helpful to alert your care team at home and also do research beforehand about local hospitals so you have a game plan in place should you be facing an acute flare that may require a trip to the emergency room.
Whether you are taking a weekend road trip or boarding a long-haul flight, remember:
You’re allowed to take up space. You’re allowed to prioritize your needs. You’re allowed to choose comfort over speed. You’re allowed to protect your energy.
And most importantly:
You deserve to make memories that reach far beyond the walls of your disease.
Community and chronic illness can be thought of as a beautiful tapestry. Our lives and experiences, while unique, become intertwined, and once we recognize we don’t have to embark on the isolating journey alone, we are forever changed. We are so much stronger together. Johnson & Johnson’s published White Paper developed through IBD Social Circle entitled, “The Power of Community in Inflammatory Bowel Disease: Coming Together to Reduce physical and psychosocial impacts” highlights key touchpoints of the patient and caregiver experience and shows the ripple effect of Inflammatory Bowel Disease and how complexity and intricacies of Crohn’s and ulcerative colitis reach far beyond the gut. IBD impacts our careers, our relationships, our identities, our mental and emotional health, and it often dictates how our life stories unfold.
This week on Lights, Camera, Crohn’s, I’ll walk you through the valuable insights from the white paper and show what the research uncovered when it comes to stigma, mental health, online communities, and more. You’ll hear heartfelt reactions from IBD patients and caregivers about the findings and hear what two leading gastroenterologists have to say about the research.
Leaning on the lifeline of community
Jessie Magaro was diagnosed with IBD when she was 15 years old. Her reaction to the white paper speaks volumes.
“I was almost in tears reading this research. When I was first diagnosed as a child, there was no readily accessible community to lean on. It was isolating, depressing, and incredibly lonely. But when my disease returned in adulthood after years of remission, I realized the world had changed,” she recalls. “Suddenly, there was visibility. People sharing their stories openly online, entire communities forming on social media. For the first time, I could connect with others who were like-minded and like-bodied, people who understood my fears, my choices, and my fight.”
That connection wasn’t just comforting; it was lifesaving. It became essential to Jessie’s mental health and gave her the strength to make the hard, necessary decisions about her body and her health that helped her survive.
The white paper digs deep into how and why patients and caregivers crave additional information and resources within the IBD community. According to the survey, “Nearly all people with IBD (95%) are looking for IBD information and resources beyond what their physician provides or discusses with them.” The survey found:
42% of people with IBD have participated in online IBD support groups
37% have engaged with social media forums or group chats on platforms like Facebook and Reddit
28% have followed influencers who share their IBD journey on social media platforms.
Dr. Jami A. Kinnucan, MD, is an IBD specialist at the Mayo Clinic Florida. She says, “This research is profoundly impactful for the IBD community, as it highlights many of the challenges that patients experience but often do not share with friends, family, or even their healthcare team. It opens the door for important conversations within the IBD community and reinforces the need for clinicians to explore the broader effects of disease beyond physical symptoms.”
The pediatric caregiver perspective
Cindy Hancock’s daughter was diagnosed with Crohn’s at age eight, she tells me if there can be a “best” part of being an IBD caregiver, it is “absolutely the online community she’s been so grateful to find and learn from.”
As a result of how heavily her and her daughter have leaned on and benefited from the support of others who “get” the reality of life with IBD, Cindy was not surprised by the findings of this white paper that highlight the power of community.
“The courage to seek out a second opinion, and bring info shared by the second-opinion gastroenterologist to our established gastroenterologist? CHECK. Information about how to interpret iron blood work that helped me advocate for transformational care for my daughter, CHECK. Learning what intestinal ultrasound is, and why it presents an amazing opportunity for IBD care and joining forces with other patients to informally advocate for its increased usage in the U.S., CHECK. Anecdotes about drug interactions via lived experiences of other people with IBD, CHECK. Recommendations about favorite heating pads, CHECK. Learning from another Crohnie that gummy bears who aren’t red or purple are part of a colonoscopy prep diet, CHECK!! I could go on and on all day!” says Cindy.
She feels fortunate that her daughter has a good team of physicians, and they always seek their opinions first of course. But Cindy feels the tidbits they’ve gleaned from the IBD community online are what have transformed her daughter’s quality of life with Crohn’s. “The impact is incalculable.”
Cindy credits patient advocates for helping guide healthcare decisions, saying “the IBD community is akin to a warm blanket. We very rarely interact with people in the “real” world who live with IBD, but every day we get to interact virtually with people just like us who understand this life… and that sense of community is priceless.”
Bridget Brown’s daughter was diagnosed with Crohn’s two years ago when she was eight. She says, “Humans are built for connection—but when you’re handed a diagnosis that isn’t widely understood, it can feel incredibly isolating. Most families reach an IBD diagnosis after some really dark, confusing months and years. The IBD community brings the light back in.”
She says as a parent, hearing other people’s stories and experiences is everything.
“I don’t know what it feels like to live inside my daughter’s body, but the insight gathered from the online IBD community helps me support her better. There’s real strength in shared stories, and there is nothing more valuable than being heard from someone who truly gets it.”
Dr. Hilary Michel, MD is a pediatric gastroenterologist at Nationwide Children’s Hospital in Ohio. She says in reading this white paper she could not help but think about how the concepts also apply to children and adolescents with IBD.
“In addition to physical symptoms, youth with IBD are also at increased risk for anxiety and depression and school absenteeism. In a period of life characterized by marked changes in development, independence, and relationships, the diagnosis of a chronic disease like IBD can be incredibly impactful,” says Dr. Michel. “Access to the IBD community for education and support is likely to be equally as important to young people with IBD and already exists in formats including in person and online groups, advocacy efforts, and camps, such as Camp Oasis. Just knowing they are not alone with IBD is so powerful. Additional attention should be paid to privacy and safety concerns when developing interventions for young people.”
Dr. Michel also feels support for parents and caregivers of youth with IBD is essential.
“Parents are at risk for missed work themselves and experience immense guilt and stress related to caring for their child. Connecting with other parents who have “been there,” sharing tips and tricks to navigate their journey, or simply having a listening ear can go so far in allowing parents to feel supported.”
The Power of the IBD Social Circle: A Veteran’s Perspective
Suzy Burnett is an IBD mom of three and blogger at Crohnie Mommy was diagnosed with Crohn’s in 2008. She says when the white paper was published, she read, and re-read, the IBD Social Circle’s latest report.
“The first reading left me stunned by the raw reality encapsulated in the statistics. The second reading became a series of nods: “Yes, that’s me,” I found myself thinking with every single finding. I found the white paper to be fascinating, maddening, raw, and often heartbreaking. Mostly, because I have personally walked down, or known someone in the IBD community who has walked down, every single path described. Simply put, this report is SPOT ON.”
Suzy says her own patient experience deeply resonated with the segment that focused on the critical role our community plays in every aspect of life with IBD: from the shock of diagnosis and the struggle with relationships to the relentless search for answers and navigating new medications.
The Birth of a Community
“When I was first diagnosed, Crohn’s disease was relatively unknown. The internet was not the wealth of knowledge it is today,” explains Suzy. “I was handed a packet of paper, told there was no cure, and left to grapple with denial, depression, and severe flares for years.”
As Suzy grappled with her disease and the years ticked on by, she felt as though the IBD community was born.
“Or we all simply started emerging from the woodwork, bloggers, patient advocates, and a growing number of patients sharing their stories. It felt as if we made an invisible pact: to stick together, stay strong, and fight for each other. It felt like a window of hope opened: I found others. Others like me.””
Suzy says the research done in this report should be shared with every newly diagnosed patient and every “old veteran”.
“We are IBD warriors, and this white paper embodies that truth to the core. It is an invaluable resource for all who suffer from IBD, as well as for the caregivers and family members who stand by their side.”
Recognizing the importance of treating the whole self
Katie Connelly has lived with Crohn’s disease for more than 20 years. She says hearing that patients are afraid to share their emotional burdens with their HCPs is defeating and eye-opening.
“As someone who is lucky enough to have one of those GI specialists who sees me as a whole person, it is imperative that I let her know how I am feeling about my quality of life. It helps her gauge where I am both physically and emotionally with the treatments I am on,” she shares. “With the mind/gut connection being such a real thing, it needs to be instilled in every HCP’s practice to inquire on how their patients feel in life. The responsibility cannot always fall to the patient to disclose everything.”
As a woman living with perianal fistulizing Crohn’s disease, Katie knows firsthand how isolating and complicated the patient journey can be. She credits the patient community for helping her cope and get educated about the questions she has had about intimacy and sexual dysfunction.
“I have had fistula for six years now and have both dated and ended up married while living with them. It has been far from easy, and there is a lack of understanding and communication around it. I hope to start bringing up my own sexual experiences and helpful tips through my own community, Badass with a Bad Ass in hopes to help lower those numbers. I just want us all to feel less isolated in this.”
Being wary of misinformation shared online and in person
Kelly Dwyer says she’s benefited from both in person and online IBD communities over the many, many years of living with her disease. While she’s grateful for community support, she believes misinformation is one of the greatest threats to IBD patients.
“When I attended my first support group after I was diagnosed, I found a community of people who were anti-biologic and unsupportive of many questions I had about treatments and medical care for IBDers. I was so dismayed to see that they were the only in-person support community in one of the US’s largest metropolitan areas, and promoting non-science backed theories of IBD care,” recalls Kelly. “Commitment to strict content moderation and upholding science-backed information is one of the reasons that support communities affiliated with national IBD organizations are an essential part of IBD care and connection.”
While she agrees the online community is beneficial, she also wants patients and caregivers to always have their guard up and be aware of the misinformation and opportunists who go after vulnerable IBDers by attempting to spread fake cures and push “snake-oil” treatment to a make a quick buck.
“As with many chronic illness communities, the newly diagnosed are uniquely susceptible to bad actors because of the desperation and grief that comes with being diagnosed with this incurable, devastating disease,” says Kelly.
While she believes many patient advocates seek to promote accurate and data-driven information, such as advocates like Tina Aswani-Omprakash and Brooke Abbott Abron who are cited in this study, Kelly wants to warn others that just as many others are publicly sharing their support for dangerous treatments, unregulated supplements, and potentially harmful lifestyle and diet choices.
“National organizations, physicians, patient advocates, and support communities like IBD Social Circle are doing their best to create easily accessible, data-driven, and science-backed resources for education for IBDers at all levels of managing their disease, and from diverse cultural and racial backgrounds. Making sure these resources speak loudly and spread far online will be a vital step to combatting the harms of misinformation. We all need to do as much as we can to educate and inoculate fellow IBDers against the dangers of anti-science rhetoric,” advises Kelly.
The financial trade-off and workplace woes with IBD
Ian Goldstein has lived with Crohn’s since 16 years old. The white paper’s discussion on disclosing diagnosis in the workplace and requesting accommodations hit home for him.
“I was fearful of mentioning my disease on job interviews and at work because I did not know if my co-workers would view me differently, if they would think I was less equipped for my role or more expendable. For a long time, I had to get weekly iron infusions, and I don’t know if my employer didn’t like that I worked remotely because of this, says Ian.
The white paper highlights a 2024 survey from the Crohn’s & Colitis Foundation that found more than 40% of people with IBD have made significant financial trade-offs to afford their healthcare, including giving up vacations or major household purchases, increasing credit card debt, and cutting back on essential items such as food, clothing, and basic household items.
“YES! 1000% YES. If I ever take a vacation, it is a weekend trip upstate because I need to make sure I have money set aside to afford my one thousand dollar a month health insurance premium in addition to the deductible and copay costs. If healthcare didn’t cost so much, my life would look quite different,” says Ian.
Everything from career impact to diet resonated with Ian. The focus in the research on foods and beverages that are staples for most but may be on the list of foods people with IBD should avoid (such as fried or greasy foods, spicy foods, sugar-sweetened drinks, and whole-fat dairy). Ian believes it’s important that people understand that it is not just the “unhealthy” or “junk” foods that can exacerbate symptoms.
“For 10 years I avoided vegetables and nuts completely because they put me at risk of having a bowel obstruction. The same foods that would make me healthy could also send me to hospital,” explains Ian.
Falling back on community for overall well-being and treatment decisions
The white paper highlights that, through IBD community engagement and support, patients have reported positive impacts on:
Physical well-being and treatment decisions
39% reported that it has helped them identify ways to make improvements in their physical health and well-being
39% learned how to improve their ability to communicate with their HCPs
39% became more informed about IBD treatment options, including different treatment options they did not know about before
32% learned how to better advocate for themselves with their HCPs
Ian couldn’t agree more, “Community has been a game changer for me. Because of two friends I met from social media, I learned about an amazing surgeon in New York who did an outstanding job with me in 2025, and I haven’t felt this good in years.”
He puts on comedy shows in New York centered around healthcare and because of one show called, “The Autoimmune Saloon,” Ian crossed paths with an audience member who mentioned Intestinal Ultrasound. “No doctor had ever mentioned it to me, but this random audience member did. Because of her, I’m able to get this test, which is much less invasive and informative when it comes to my Crohn’s. This is how community makes an impact: we teach others what we know, things that doctors may never think to tell us.”
Facing the music and fighting the stigma across all races and cultures
According to the white paper, up to 84% of adults with IBD feel that there is perceived disease-related stigma against them, which results in social stereotypes making them seem unreliable or antisocial.
IBD has historically affected White populations at a higher prevalence than other groups; however, the research shows the incidence of IBD is increasing in all races and ethnicities across the US, including in people who are Black, Hispanic, Latino, and East or Southeast Asian. Research also suggests that Black, Asian, and Hispanic individuals with IBD may have a higher incidence of more severe disease.
Kimberly Hooks says, as a Black woman living with IBD, she knows exactly what it feels like to be dismissed, overlooked, and told that her symptoms didn’t fit the picture.
“I was diagnosed late, and even after that, there were delays in getting the medication I truly needed for my severe Ulcerative Colitis. That delay cost me my colon. My story isn’t unique; it reflects what so many Black and Brown patients experience when our pain is minimized or our symptoms aren’t taken seriously,” Kimberly shares. “That’s why this research matters so much. It confirms what we’ve been living. IBD does not discriminate, and our communities are being affected at rapidly increasing rates. This is why I advocate, because visibility saves lives, and every person deserves to be heard, believed, and treated with quality care.”
Kimberly went on to say how incredibly grateful she is for the IBD Social Circle creating a safe space for patient voices and grounding this work in real lived experiences.
“Partnering with advocates to highlight our real stories and pairing those stories with research exploring the physical and psychosocial factors impacting patient care is powerful. It shows the benefits of community and how connection can support people with IBD in every part of their disease management. This kind of work gives me hope. When patients and community come together, we don’t just raise awareness, we help shape a better, more equitable future for everyone living with IBD,” she says.
Acknowledging the struggles IBD can present in motherhood and beyond
As a patient leader and an IBD mom of two small kids, Michelle Pickens appreciates the white paper for a multitude of reasons, especially the notion that we can appear “fine” even while we’re struggling. She also valued the discussion around the wide range of symptoms patients face and how this variability can delay diagnosis and access to support.
“That “in-between” period—when someone is sick but unsure where they fit or where to turn—is incredibly challenging. You experience symptoms consistent with IBD, yet you don’t quite feel part of that community without a formal diagnosis,” Michelle explains.
The section of the white paper on remission really resonated with Michelle. There is often an expectation that once you begin treatment, you will immediately feel better, but that is not always the case. She says it’s important to acknowledge the need for community support when clinical measures indicate remission, but physical symptoms persist.
“I was glad to see the impact on the family unit addressed, especially in areas such as domestic responsibilities and parenting. These are areas where I personally struggle at times. In the workplace, accommodations can be requested to help manage IBD symptoms, but parenting offers no such structure,” Michelle shares. “As a mother, it can be difficult to find someone who can step in and keep things running the way you would, so the responsibilities often fall back on you, even when you’re unwell. This contributes to significant “mom guilt,” and while mom communities exist, the parenting experiences of those without chronic illness differ greatly from my own.”
Addressing mental health struggles
The white paper reveals that more than half (52%) of people with IBD consider the impact of IBD on their mental well-being as negative. Other research studies have shown that individuals also experience depression and anxiety—with as many as 40% and 30%, respectively, experiencing these comorbidities, even while in remission.
The body image issues that stem from IBD such as weight loss, hair loss, steroid-related weight gain, ostomy bags, fistula, and other extraintestinal manifestations make life feel like a minefield. We are constantly up against the unpredictable nature of living with a disease that can rear its ugly head at any given moment. We are constantly forced to pivot and make decisions that often have a direct impact on our overall body image. I remember when I was in college (prior to my Crohn’s diagnosis) that I loved being on camera, working in TV news. Fast forward to five months post-graduation and three months post-diagnosis, and I was mortified anytime anyone tried to take a picture of me. Looking in a mirror was a stark reminder of what I was now and what I used to be.
These photos were taken 3 months apart. Pre-diagnosis and while on 22 pills a day.
Please know that if you struggle with this, you are not alone. As the white paper notes, “as many as 75% of women and 50% of men experience body image issues because of their IBD.”
Final thoughts
This white paper is a gift to the IBD community. As someone who was diagnosed with Crohn’s in 2005, I would have given anything to have a resource like this at my fingertips to validate my struggles and recognize my fears. We are at a pivotal point in patient advocacy and leadership where we can help shape the future of what it means to live with IBD and thrive despite the dark days.
Dr. Matthew Ciorba, MD, a gastroenterologist at Wash U in St. Louis says, “This work offers patient-identified, doctor-approved insight. It brings together perspectives that clinicians alone often cannot fully grasp. The document fills a unique niche in the IBD space. It bridges the lived experience of patients with the expertise of leading clinician advocates. There is truly nothing else quite like it.”
Our community, everyone from patients to caregivers, and medical providers, is so unique. For many of us, these connections and friendships (whether online or in person) have helped us to reclaim a sense of purpose within our disease journeys. My hope is that medical providers and GI psychologists use this research to empower and educate the community by providing this incredible research to patients and caregivers.
Check out the Executive Summary of the White Paper
When you live with Inflammatory Bowel disease, there’s no telling if or when you’re going to need an NG tube (nasogastric tube) to help stabilize your symptoms, deliver nutrition, and help your body heal. In my 20-plus years living with Crohn’s disease, and despite many hospitalizations for bowel obstructions, I have never needed one (yet). Recently, a fellow IBD mama on Instagram shared about getting one as she’s hospitalized right now (with a new/additional diagnosis-Gastroparesis), and her experience inspired this article.
This week on Lights, Camera, Crohn’s, a guide that breaks down what to expect, what helps, and how we can best cope from fellow patients and caregivers who have lived through it. Whether you are facing your first tube placement or supporting someone who is, the fear of the unknown can often feel bigger than the procedure itself.
Understanding the Process (and Why It’s So Intense)
NG tube placement can feel overwhelming because it involves an extremely sensitive area: your nose, throat, and gag reflex. It is quick, but not exactly pleasant. Knowing what is coming can dramatically reduce anxiety.
An NG tube is typically used for:
Bowel rest and decompression during IBD flares
Relieving bowel obstructions
Nutrition support
Medication delivery
And while the experience varies widely, preparation and honest communication with your care team make a huge difference.
Before Placement: Preparing Your Mind and Body
Ask for numbing options: Most hospitals can use lidocaine spray or gel in your nostril to make the initial insertion more tolerable. It is worth requesting.
Practice slow breathing: Focusing on deep, steady inhales through your nose helps decrease the gag reflex and keeps your body relaxed.
Sit upright with your chin slightly tucked: This position straightens the path the tube travels and can make the process smoother.
Have emotional support: Whether it is a partner, parent, friend, or even someone on speakerphone, having a familiar voice can ease anxiety.
During Placement: Strategies That Actually Help
Swallow as the tube advances: If the nurse allows, sipping water and swallowing as the tube moves downward helps guide it into the esophagus rather than the airway.
Anchor your eyes on one spot: A visual point of focus reduces the instinct to pull back or panic.
Choose a mantra: Something like “This is temporary” or “Every swallow gets me closer” can center your mind.
Ask your nurse to narrate the steps: Knowing what is happening and when it will be over prevents surprises and makes the process feel more controlled.
What Patients and Caregivers Have to Say
Hindy: “I would say to request the thinnest tube possible. It is really awful.”
Ashley: “It’s a horrible experience. I’m glad I didn’t know what to expect before getting one placed, because I don’t think I would’ve been able to handle it. I don’t think there’s anything that could have prepared me for it.”
Amy has IBD and her four-month-old daughter does not, but she has had an NG tube for two months, due to issues with strength, stamina, and desire to eat after being born prematurely.
“She was diagnosed with Failure to Thrive, and her NG tube has been lifesaving! I can guarantee she gets the nutrients she needs to grow and thrive. She tolerates the NG tube very well. She has pulled it out multiple times, but thankfully we live close to the GI clinic and a great Children’s hospital.”
Amy has found there are certain strategies to limit the number of times she pulls the NG tube out, such as taping it closer to her nose. She says it can be stressful at times, but luckily with her medical background she knows how to clean the tube 8 times a day. Even though her daughter has handled the NG tube like a champ, Amy and her husband have decided to transition to a G-tube, since their baby girl will need nutritional support for a little bit longer, which Amy thinks will aide in comfort and speech development.
Alexis: “Get a little white board so that you can write what you want to say as talking is so uncomfortable.”
Karen: “Taking anti-anxiety + pain medication to help with the uncomfortable pain and anxiety that NG’s cause. I refuse NG tubes now without serious meds, the trauma, pain, and discomfort they cause must be treated and I think providers really underestimate how traumatizing it is to have one, especially if it’s put in while you’re awake.
Amanda: “Ask for some nebulized lidocaine before insertion.”
Abbie: “Ask for throat numbing spray!!! I was given it my first time and then every other time I’ve had to ask, but I’m so appreciative the first nurse I had gave me some so I knew to ask for it in the future.”
Sarah: “I didn’t even know what an NG tube was until it was already inserted. I suppose the shock of how quickly the insertion went shielded me from the pain and discomfort. Numbing spray was the only way I could cope with the tube irritating my throat. Mine was in for three days while I had a bowel obstruction and the day it came out felt like FREEDOM.”
Becca: “They are the f***ing worst. You can quote me.”
Melissa: “I had one they put in while I was awake and after SIX tries, I was adamant on getting something to relax me. They put a little something in my IV and then it went down without an issue. I also had a smaller one, more child-sized than adult.”
Dana: “I wish I had something positive to say about NG tubes, frankly I didn’t cope at all until they gave me Ativan and eventually a muscle relaxer. Sometimes they can give you a numbing throat spray to help with irritation. After the first few days, it gets little more tolerable as your body gets used to it.”
Jennifer: “OMG. 26 years with Crohn’s and nothing traumatizes me more than the mention of an NG tube. I was about 95 pounds the first time I got one. I’m almost 5 feet tall, and after two tries of me not being able to breathe they realized I needed a child-size tube.”
Mayara: “When I had my NG tube, I used to suck on ice chips/cubes to help ease my sore throat.”
Claire says she’s been through the wringer with NG tubes. There was a point where she had 10 in one year!
She says, “Regardless of how awful NG tubes are and the damage (long or short term) they can do, they have saved my life repeatedly. I am no stranger to bowel obstructions. Developing strictures seemed to be a favorite past time for my small intestines. The NG tube is supposed to decompress the obstruction and stop or at least reduce the amount of vomiting (also helps to prevent aspiration). I will never forget how nervous I was before my first NG placement and even now as an NG vet, I still get very nervous. I always ask the doctor for IV Ativan or IV Valium beforehand.
Claire also says even if a doctor does not want to give a benzo after an opiate that they will usually give her a dose right before placement.
“Don’t be afraid to ask for what you need. I also won’t sugarcoat it; you will most likely gag and vomit during the placement. Ask for an emesis bag or basin. It sounds counterintuitive, but if the nurse doing the placement is experienced, they will be able to utilize you gagging/vomiting to get the tube in faster. Nosebleeds are also very common.”
After NG Placement: Getting Comfortable
Secure the tube well: Do not be shy about asking for gentler tape, extra adhesive, or adjustments. A well-secured tube is less irritating and less likely to tug.
Soothe nasal irritation: Saline spray, warm compresses, or a tiny amount of water-based lubricant around the nostril can reduce soreness in the first day.
Experiment with sleeping positions: Many find sleeping slightly elevated or on their back with a supportive neck pillow helps keep the tube comfortable.
Be comfortable: Wear loose tops, zip-up hoodies, or scarves if you want to conceal the tube and prevent snagging on straps or bags. Obviously, many people are choose to stay in their hospital gown.
Protect it in the shower: A bit of cling wrap or a small waterproof dressing keeps the tape from falling off.
Move with intention: Sharp head turns or bending forward quickly can tug the tube and cause discomfort. Slow and steady helps.
Support for Caregivers: What Helps Most
As a caregiver, it can be easy to feel helpless on the sidelines as you watch your child or a loved one or friend go through this. Here is how you can help ease that burden:
Watch for tension or kinks: If the tube starts pulling, the patient may feel nausea or pressure.
Track symptoms: Be mindful of any changes you may notice with coughing, reflux, or fullness. This can mean the tube has shifted.
Learn how to flush the tube: If this is a long-term situation, educate yourself so you can help prevent blockage and avoid urgent care visits.
Offer emotional space, not pressure: Let your loved one set the tone. Everyone is different. Some want distraction, others want quiet, some want humor. Follow their lead. You know them best, trust that instinct and know that even if they may seem frustrated or short, that anger is not geared towards you, but rather the difficult circumstance and situation they are enduring.
The Emotional Side: What We Don’t Talk About Enough
Having an NG tube can stir up fear, embarrassment, frustration, sadness, or anger. All these feelings are normal.
Many patients say:
They feel “less like themselves.”
They are worried about how they look.
They are afraid to sleep.
They are overwhelmed by the sensation of the tube at first.
These feelings tend to ease within 24–48 hours as the body adjusts. Give yourself grace. This is a medical tool, not a reflection of strength, identity, or dignity. It is ok to feel all the feelings.
Celebrate the small wins
Take this one like you do with all things IBD. Give yourself credit where credit is due! It is not easy and it is important to celebrate all the wins, no matter how “small” they may seem. You are making strides and growing through this journey, whether you realize it or not. What you are experiencing matters and your resiliency deserves celebrating!
The first time you swallow without noticing the tube
Sleeping through the night
Getting out of bed more comfortably
Tolerating feeds or feeling abdominal relief
When to Call Your Care Team
You may wonder what is “normal” and what deserves pushing the nurses light or alerting your care team. You should reach out immediately if any of the following happen:
You have trouble breathing or persistent coughing
The tube appears to be slipping out
There’s significant nasal bleeding
You feel intense nausea or vomiting
The tube becomes clogged and flushing does not help
You should never hesitate to call. NG tubes are temporary but important, your team expects questions. Classic example of better safe than sorry. You are not a burden to anyone.
Final Thoughts
An NG tube can feel intimidating, and while extremely unpleasant, they can help give you some relief while allowing your doctor to keep finding answers for you. With preparation, the right coping strategies, and the support of a caregiver or medical team, you can make the experience more manageable. Always remember you are never alone in your fears and setbacks and that your ability to cope and your voice matters.
It is an exciting and transformative time for the IBD community when it comes to family planning and pregnancy. For years, patients and providers faced uncertainty and conflicting guidance about everything from fertility to medication safety. Now, with the publication of the Global Consensus on IBD and Pregnancy, we finally have a unified, evidence-based roadmap created by leading experts worldwide.
This groundbreaking research, jointly published across multiple top journals, is more than just a collection of data—it’s a lifeline for patients, caregivers, and clinicians seeking clarity and confidence. And for the first time, that guidance comes to life through a series of 12 videos now available online. As the sole U.S. Patient Ambassador and Group Lead for patient advocates worldwide, I was honored to contribute not only to this historic project, but also to share my own journey in the video series—bringing the patient perspective directly into the global conversation.
Grateful for Dr. Uma Mahadevan and the entire team for their incredible work on the Global Consensus.
Check out the video series
Following the release of the research from the 2025 Global Consensus Conference on IBD, a series of 12 videos were also published on the PIANO (Pregnancy in IBD and Neonatal Outcomes website), featuring experts speaking on best practices, emerging data, and consensus statements.
Among those 12, my Patient Perspective video is unique. It’s the only video in the lineup where you hear firsthand experience from an IBD mom. During my unscripted 18-minute video, I share openly about the tough decisions I faced personally, the hopes and worries I encountered while bringing babies into this world, and what I want fellow patients and doctors to know. As an IBD mom of three kids (now ages 8, 6, and 4) who were all exposed in utero to Humira, I have a unique perspective to share.
I know what it’s like when you’re 32 weeks pregnant and have to do a biologic injection while you see your baby’s foot kicking at your belly. I know how stressful it is when you don’t know if you’re going to flare while pregnant or shortly thereafter. I know how complicated and overwhelming it can feel when you’re juggling a chronic illness along with pregnancy and motherhood.
Having a patient video placed alongside expert commentaries is a statement: our lived experience is essential to understanding how guidelines work in the real world. I hope my words leave you feeling seen and empowered.
Preconception Counseling and Contraception for Patients with IBD
The Patient Perspective
Why These Videos Matter
Each video is a piece of a bigger puzzle. Together they tell a story about where we are now, where we need to go, and how patients can be—and must be—central to that journey.
Bridging gaps between patient, clinician, and researcher. These videos are designed not just for patients, but for caregivers, physicians, policy makers, and anyone interested in improving IBD care. Seeing things through the patient lens can spark better communication, more empathic care, and guidelines that address what matters most.
Empowerment through shared experience. Whether it’s coping with symptoms, navigating treatment decisions, or facing uncertainty, this research will make you feel more confident in every decision you make along the way. Rather than feeling like there’s an overwhelming amount of gray area, you can see the roadmap of decision-making created from the Consensus that will help you each step of the way.
How to Watch & What To Do Next
Watch the videos: Listen firsthand and educate yourself. An educated patient is an empowered patient. It’s one thing to read a published medical study, it’s especially helpful to see these videos and watch the research come to life.
Join the conversation: Use these videos as conversation starters, take what you learned into clinic visits, have conversations with your partner/family/friends, or on social media. When you’re talking about family planning, make sure your GI and Maternal Fetal Medicine doctors are aware of the Global Consensus on IBD and Pregnancy to ensure they are up-to-date on the very latest research.
Join the PIANO study. This is a great way to become a citizen scientist and use your journey to motherhood as a way to pave the way for others. I participated in PIANO with my youngest child, and he will continue to be “followed” until age 18. It does my heart good to know we’re helping bridge the gaps in understanding so women with IBD now and in the future can feel more comfortable about staying on medication in pregnancy and during breastfeeding.
Too often, patient voices are an afterthought or an add-on. Being featured as an integral voice, not a sidebar, is a powerful shift. The fact the Global Consensus Conference team made such a point to incorporate patients like myself who are IBD moms, from around the world, goes to show just how inclusive and comprehensive this research is.
Final Thoughts
Living with IBD means navigating uncertainty, physical challenges, and emotional strength, but it also means being part of a community that continues to push boundaries in care. These videos highlight not only the science and data, but the lived realities that bring those numbers to life. Patient voices don’t just complement medical expertise, they help shape the future of care. By placing my perspective alongside global experts, the Consensus reminds us that guidelines are most powerful when they reflect both evidence and experience.
As an IBD mom, I think about what this progress means for my three children and for the next generation of families impacted by this disease. I volunteer my time and energy for these projects because they are at the heart of my patient advocacy and genuinely matter so much to me. The inclusion of patient voices today paves the way for a future where no one feels alone in their decisions about pregnancy and IBD. Together—patients, clinicians, and researchers are building a roadmap that will make the journey clearer, safer, and more hopeful for those who come after us.
Living with Inflammatory Bowel Disease (IBD) often means juggling more than one health condition. For some, that includes managing Attention-Deficit/Hyperactivity Disorder (ADHD). Both conditions can significantly impact daily life, and when it comes to treatment, it’s important to understand how ADHD medications may interact with IBD and its therapies. This week on Lights, Camera, Crohn’s we hear from more than 25 people who are juggling both and share their impactful advice.
The Overlap Between ADHD and IBD
While ADHD and IBD are separate conditions, research shows that people with chronic illnesses, especially those that begin in childhood or young adulthood may experience higher rates of ADHD or ADHD-like symptoms. Brain fog, fatigue, and difficulty concentrating are also common in IBD, which can make it challenging to distinguish what’s driving certain symptoms.
For those diagnosed with both conditions, ADHD medications can be life-changing, improving focus, energy, and daily functioning. But because IBD involves a sensitive gastrointestinal (GI) system, it’s important to weigh the potential effects ADHD medications can have on digestion and disease activity.
Appetite suppression: Stimulants often decrease appetite, which may be concerning for IBD patients who already struggle to maintain weight or adequate nutrition.
GI side effects: Nausea, abdominal pain, and diarrhea can occur, sometimes making it difficult to know whether a flare or medication side effect is to blame.
Sleep disruption: Poor sleep can worsen IBD symptoms and overall inflammation. Timing doses earlier in the day can help.
Slower onset: These may be less likely to cause GI upset but can take weeks to become effective.
Potential side effects: Constipation, abdominal pain, and fatigue are possible, which can overlap with IBD symptoms.
Impact on Gut Motility
Both stimulant and non-stimulant ADHD medications can influence gut motility (how fast or slow food moves through the digestive tract). For those with Crohn’s or ulcerative colitis, this may complicate symptom management, particularly if diarrhea or constipation is already a challenge.
Key Considerations for Patients with IBD
Collaborative Care is Essential Make sure your gastroenterologist and psychiatrist (or prescribing physician) are aware of all your medications. This helps prevent drug interactions, especially if you’re on biologics, immunosuppressants, or steroids.
Monitor Nutritional Status If stimulants suppress appetite, work with a dietitian to find calorie-dense, IBD-friendly foods and snacks that can help you maintain strength and body weight.
Track Symptoms Carefully Keep a journal noting when you take your ADHD medication, what you eat, and how your GI symptoms present. This can help differentiate between medication side effects and IBD flare activity.
Adjusting Doses and Timing Sometimes, smaller, or extended-release doses can reduce side effects. Timing medication with meals or adjusting when you take it can also ease GI discomfort.
Mental Health Matters ADHD itself can heighten stress and anxiety, which are known triggers for IBD flares. Finding a treatment balance that supports both brain and gut health is critical for overall well-being.
An IBD mom and therapist shares her advice
Sammi is an IBD mom who works as a therapist. In her experience, both personally and professionally, she has valuable input to share about taking ADHD medications when you have Crohn’s or UC. Sammi took a low dose of Adderall (5 mg, sometimes 10 mg) in graduate school for her anxiety and ADHD.
“My appetite was extremely impacted I’m sad to say. I did not feel hungry until my stomach was physically giving me intense hunger cues. I was only a couple of months into Humira at that point so I too, was struggling with maintaining my weight and didn’t want that to be impacted.”
Here are a few things Sammi did to make it manageable:
1. ALWAYS eat before you take ADHD medications. Eat a big breakfast, if possible, protein and carbs (if you can tolerate generally, of course). As a therapist, many of my clients struggle with taking meds early enough at times. And inferring a good meal ahead of time can feel like a barrier so I just want to hold space for that. However, it is so imperative to be really fueled and in a good place stomach wise / eating wise before taking for the day.
2. Plan your meals out as much as possible. Since hunger cues were lessened for me, I was in the mood for nothing. So  it would be hard to decide what I was going to eat, and then I would not have to decide when I was feeling fatigued and overwhelmed.
3.Snacks are clutch. I say snacks because sometimes that’s just the easiest thing to eat, especially when you don’t want to think about food or you’re not actively thinking about food because your appetite is suppressed. I have Crohn’s disease and one of my biggest triggers is my stomach getting too empty whether it’s because I’ve waited too long to eat or I haven’t eaten enough that day. It will give me such a bad stomachache so that was happening to me pretty frequently when I first started taking the Adderall.
4.Take your ADHD medicines early in the day. This is my BIGGEST piece of advice and clinical recommendation for anyone who is considering taking ADHD medication. Take it early in the day so your sleep isn’t impacted. As we know with IBD- sleep can already be difficult this is so important!
More from the patient community
“My advice is to take it early in the morning so that you can eat more in the afternoon and evening. I don’t have a problem with dropping weight; I had the problem of retaining! Transparently, now I’m on GLP-1 (GI approved) medication, and I’ve lost 38 pounds. Best I’ve ever felt! But, when I take my Adderall too late in the day, I don’t eat and that’s not good either. I take my ADHD meds twice a day, as prescribed. Once at 7 am and once around noon.”
“I have IBD, and I currently take Adderall for my ADHD. I have been on it for a few months, and in my experience, my biggest issue is that it suppresses your appetite for quite some time. I’ve been struggling to gain weight for awhile due to my IBD, so taking something that makes it hard for me to eat all day has been a big challenge. I am thinking about asking my doctor to switch me to a new treatment plan to hopefully find something that doesn’t suppress my appetite!”
“I feel like it never affected me very much with eating and I don’t think there was any interactions between anything with ADHD meds and my UC!”
“I’ve heard fellow moms with kids on these medications recommend eating a big breakfast before ADHD meds kick in, having a snacky lunch, and a late dinner after they wane.”
“There are non-stimulant ADHD meds. Stimulants are the ones that suppress appetite. You can ask your doctor about these and ask to start on the very lowest possible effective dose, if stimulants are required.”
“I don’t take ADHD medications now, but in college I did. I did not find it impacted anything with my Crohn’s. Depending on the ADHD med, it could impact appetite but didn’t interfere with how I manage my IBD.”
“I’m on mental health meds for anxiety and depression, along with ADHD meds, and I do think I’ve had a slight decrease in appetite. I also naturally have a lower appetite than most. A family friend of mine has been on Ritalin for longer than me, and I think he has struggled more in that aspect than I have though.”
“I have a j-pouch with a post-pouch diagnosis of Crohn’s, and I take Vyvanse for ADHD. I take 30 mg a day, I don’t feel like it impacts my appetite at all.”
“I take stimulants for my ADHD, and I don’t have any decrease in appetite. It just depends on the person.”
“The best advice is eating a big breakfast, having snacks for lunch, and then eating a big dinner. I have also reached out to my Crohn’s dietitian to have more creative ideas for small meal ideas! The issue with choosing what medicines is that they all aren’t covered immediately—I’m starting on Adderall, which is one of the suppressants—my doctor doesn’t plan to keep me on that long term, but due to insurance, I have to start there. I have also have to find out what exactly is covered and is not covered (as IBD patients we’ve been there before, right!?)”
“I have Crohn’s and just started to take Vyvanse about two months ago. Even on a low dose, while also being on a high dose of prednisone, I’ve had little appetite. It has helped me to eat something small as soon as I’m able in the morning, before taking the medicine. It helps me have more of an appetite throughout the day, though I have smaller meals now.”
“I have Crohn’s and ADHD. I take an extended release 10 mg Adderall and find that my appetite is fine, a little less, but not dramatically so. I hadn’t really thought about it until my GI went through my meds. I have found that if I take 20 mg (we played around with the dose to find which works best), I do experience a loss of appetite. I think if you can find the therapeutic dose, it should be ok! I’m just a case study of one, but I would also add that ADHD meds have the benefit of supporting healthier time management skills, so I’m more inclined to stop and eat, which my scattered self sometimes didn’t do.”
“I don’t take my ADHD meds every day, but I take Vyvanse and when I do take it, I notice appetite suppression, but it’s nothing severe. I don’t have a j-pouch or struggle with being underweight. When I take them, I usually notice mid-day appetite suppression the most. I tend to eat breakfast before it’s fully kicked in and the effects have waned by dinner time.”
“I have been on Vyvanse, and it has been the best on my stomach and ADHD. I was diagnosed early this year. I tried Adderall, and it made me anxious and over stimulated. Concerta had me nauseated all day, everyday…Vyvanse is the way to go!”
“I have been on Ritalin for the last 2.5 years (finally) and even started an anxiety med that also helps with my chronic pain.”
“I’m on 10 mg of Focalin for ADHD and on Imuran (max dose), Entyvio infusions, and other meds for anxiety and depression. I never had a big appetite regularly, so I haven’t noticed a big difference. The benefit for me has been that I am calmer now and don’t get that ADHD stress. I’m 45 and was just diagnosed with ADHD last November. I’ve had Crohn’s since age 14 with many surgeries between then and 2022.”
“I have IBD and take ADHD meds. I never had the lack of appetite side effect, so I might be an outlier. I usually eat breakfast before taking my pills. Sometimes I need to set timers to eat though if I’m hyperfocusing.”
“I recommend keeping snacks in view. If you don’t feel like eating, drink a protein shake. My Crohn’s symptoms improved a bit with ADHD meds, too.”
“I can’t speak to the loss of appetite, but I was diagnosed with ADHD a few months ago. I tried Adderall for three days, but each day it upset my gut. I had way more bowel movements than normal, even though I was not flaring, and my gut was sore after each one. So, I stopped taking the Adderall and everything went back to normal. I’ve just been self-medicating with caffeine ever since.”
“It helps to eat when you take your ADHD meds and then eat smaller meals throughout the day. It’ll make you not thirsty, so make sure you’re mindful about hydrating. I recommend taking little breaks from it, during weekends and things.”
“I just started my ADHD medications again post-baby and have noticed a huge drop in appetite. I tried a few different meds before settling on extended-release Ritalin. I will say immediate release Adderall severely exacerbated my Crohn’s and gave me horrible stomach cramps. The stomach cramp thing is common with that one, even if you don’t have IBD.”
“I stopped my ADHD medication. It absolutely destroyed my belly. They are a stimulant and make you go to the bathroom more an also affect blood flow to the colon. It’s been awful.”
“Personally, it’s never been enough to make me lose weight. But I do tend to front load—eat my biggest meal in the morning. Also, the come down from stimulants will have you ravenous by the end of the day.”
Finding the Right Balance
Every person’s IBD and ADHD journey looks different. What works well for one person may not for another. The key is to be proactive, keep your healthcare team in the loop, and advocate for adjustments when needed.
Managing IBD is already a full-time job. Adding ADHD into the mix can feel overwhelming, but with the right treatment plan, many people find that their ADHD medications not only improve focus but also help them feel more in control of their health overall.
What do you get when you mix chronic illness, dark humor, artistic storytelling, and a deeply broken healthcare system?
You get The Out-of-Network Network — a sharp, satirical, and heart-achingly relatable newsletter born from the experiences of patients who’ve seen (and survived) the absurdities of the American healthcare system firsthand.
Founded by Ian Goldstein, a Crohn’s disease patient and comedy writer, and Amanda Lehr, a writer navigating ankylosing spondylitis (AS) and mast cell activation syndrome (MCAS), OONN is more than a newsletter. It’s a lifeline. A laugh. A community. And most importantly — it’s a call to action, cloaked in clever cartoons and short, punchy stories that make you feel less alone in the madness of it all.
Meet the Founders
Amanda Lehr may not have Crohn’s, but as she puts it:
“I’m a fellow member of the ‘My Body is an Autoimmune Fight Club’ community.”
She’s lived with ankylosing spondylitis since her teens and recently received a diagnosis for MCAS — a condition that turns everyday encounters into allergic warzones.
“Being in my body is like trying to live in the booby-trapped Home Alone house: if there’s not a real intruder around, I’m the one getting hit by swinging paint cans and having my head set on fire.”
For Ian Goldstein, Crohn’s has been a two-decade battle, from bowel resections and obstructions to navigating biologics like Humira, Skyrizi, and Rinvoq. His life revolves around the proximity to hospitals, navigating insurance loopholes, and, like many chronic illness patients, learning to laugh at the chaos.
“I find so much humor in the world of healthcare. Not in the pain we patients deal with. But in the absurdity of interactions and situations that doctors, insurance companies, and people ignorant to our plights bring.”
How Out-of-Network Network Was Born
It all started with what Amanda and Ian lovingly refer to as “The Luigi Incident.”
A moment of internet virality around a meme, combined with a groundswell of people sharing stories about healthcare trauma… it lit a spark. They saw an opportunity to make something lasting.
“Knowing how fast the news cycle moves, we didn’t want this conversation to get lost in the shuffle,” Amanda shared.
So, they built OONN: A weekly Substack newsletter that pairs short healthcare horror stories with custom illustrations — funny, heart-wrenching, eye-opening, and artfully absurd.
“The situations we face aren’t inherently funny,” Ian says. “But how incompetence plays out — lazy doctors, power-hungry insurers, $70,000 hospital bills for inedible food — that’s darkly hilarious.”
Amanda, meanwhile, loves the diversity in voice and style across their contributors.
“As a writer, I enjoy collaborating with such distinct voices and artistic styles. As a human, I’m moved by how we all come together around this common belief: healthcare should not be a luxury product.”
The Common Denominator
So, what’s the throughline in the stories they receive?
“It’s a combination of incoherence, incompetence, and institutional hostility,” Amanda explains. “Sick and disabled people end up spending hours fixing mistakes that could bankrupt them.”
“People are crushed by sky-high bills and red tape,” Ian adds. “And those burdens pile onto lives already made difficult by chronic illness.”
More Than Just a Newsletter
For both Ian and Amanda, OONN is as therapeutic as it is informative.
“The first word that comes to mind is catharsis,” Ian says. “Reading someone else’s story — and laughing through it — tells me I’m not alone, and I’ll get through it.”
Amanda agrees, “It’s not better medicine than my biologics, but it’s still pretty damn good.”
Want to Share Your Story?
The Out-of-Network Network is always looking for contributors — writers and illustrators alike. If you’ve got a healthcare horror story, a cartoon-worthy insurance mishap, or just want to laugh (and cry) with the community, you can email Ian: ianscottgoldstein@gmail.com or Amanda: amanda.lehr@yahoo.com.
Final Advice from the Frontlines
Ian shares one last nugget of wisdom — a survival tip for navigating healthcare:
“Record everything. Record your doctor when they give you results. Record your call with your health insurance. Just make sure you’re legally allowed to. It helps you remember things, and it protects you if you need proof later.”
You’re Not Alone
Whether you’re battling Crohn’s, AS, MCAS, or just trying to make sense of a $3,000 copay for a basic test, Out-of-Network Network reminds us that laughter really is the best medicine (after your biologic infusion, of course). And that in this broken, bureaucratic mess of a system, solidarity and storytelling might just help us all stay sane, one cartoon at a time.
You can also subscribe to their weekly newsletter on Substack and follow them on Instagram: @out_of_network_network, @iangoldsteinyes, and @amandamlehr.
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.
It’s no surprise IBD impacts so much more than just our guts. Not only is there the gut and brain connection, but also the complex nature of our chronic illness(es) that can cause serious anxiety, depression, and mental health issues. The isolating nature of Crohn’s disease and ulcerative colitis, the unknowingness of what the next day holds, and the never-ending laundry list of procedures, labs, scans, and surgeries, year after year is a lot for any person to go through.
Even though I’ve lived with Crohn’s disease for more than 18 years, and have seen three different gastroenterologists in that time, not once has my mental health been brought up during a clinic appointment. When treating a person for IBD, the health of the whole person needs to be considered. I ran a poll on Instagram asking the IBD community if they’ve ever been to therapy. Out of 185 respondents, 70% seek therapy, 18% have not, and 12% are considering it.
I did an article in September 2020 about why a specific public bathroom at a grocery store I used to shop at triggers me and shared tactics for coping. You can read the article that featured Dr. Tiffany Taft here.
This week on Lights, Camera, Crohn’s we hear from those in our community about the advice that’s resonated with them the most since receiving their IBD diagnosis.
The words that have made a lasting impact
Olivia: “3% effort is still effort. You’re not going to be able to give 100% every day and that’s OK. Your best can look different from day to day.”
Julie: “It’s not your fault, you didn’t do anything wrong.”
Kristen: “You can’t drive forward if you’re always looking in the rearview mirror.”
Sarah: “Medical trauma is trauma and to give myself credit for all I have overcome.”
Cindy: “Remove all IBD related stressors from the bedroom to avoid impacting sleep. In our case, this meant no Humira injections for my daughter while sitting on the bed or nearby it.”
Tina: “Imitation is the best form of flattery.”
Lauren: “Don’t Google things you’re worried about, like symptoms.”
Jennifer: “Stay in the present.”
Heather: “Sometimes you just need to take a nap!”
Myisha: “If it’s not going to matter in five years, don’t give it five minutes of your energy.”
Kate: “It’s not your fault.”
Susan: “I’ve never seen a therapist, but I always tell myself it could always be worse.”
Stacey said: “You can’t control how seriously people take Covid. You can only control how you protect your physical and mental health. You have to put your health first. And, if people don’t agree with your choices, then that’s their problem. You can’t risk your health just to make it easy for others or to placate them. You come first in your life.”
Robin: “The “things” I do—my work advocating for others, supporting others, helping others face challenges with their diseases—I deserve that, too. Not from other people, but from myself. The beauty in therapy is that you’re receiving a non-biased/outsider opinion. This person that has no side and will sometimes say something you’ve heard 1,000 times in a way you’ve never heard before or even in a better way that allows you to really listen to what’s being said. To absorb it. Even to say it multiple times with no judgement if that’s what’s needed. Also, EMDR, which is a whole other thing and only part of the therapy experience.”
What is EMDR therapy?
Several people said EMDR therapy was their favorite and has been lifechanging. So, what exactly is it? Eye movement desensitization and reprocessing (EMDR) is a fairly new, non-traditional type of psychotherapy that’s popular for treating post-traumatic stress disorder. EMDR focuses on the natural tendencies our brains have for healing from traumatic memories. There are mental blocks (such as feelings of self-esteem issues and powerlessness) that can prevent us from healing. During EMDR, you are allowed to process the bad memories and experiences to start healing yourself. This helps our brains process challenging thoughts and feelings in a healthier way. Chances are through your patient journey you’ve endured several vivid and significantly painful moments that you haven’t been able to process and heal from.
Supportive Resources about managing mental health and IBD
Mental health often takes a major hit when you’re diagnosed and live with a chronic illness like IBD. I ran a poll on Instagram and Twitter this past week and the results were extremely eye-opening. Not only for the patient community, but for any caregivers, friends, or family who know people with Crohn’s disease or ulcerative colitis.
On Instagram—out of 350 people polled over 24 hours, a resounding 93% responded “yes” to IBD impacting their mental health and causing depression and anxiety. On Twitter, I ran the same poll for 48 hours, of the more than 205 votes, 86% of people responded “yes”.
Dr. Yezaz Ghouri, MD, Director of Inflammatory Bowel Disease Services, University of Missouri School of Medicine at Columbia, offered helpful insight on the topic. I had the pleasure of meeting “Dr. ZaZ” (as he commonly goes by) in person at the Crohn’s and Colitis Foundation’s Mid-America Chapter Gala in November. Dr. ZaZ was awarded the 2022 Catalyst for Mission Advancement award and I was so inspired and intrigued by his work as I was emceeing the event, that I knew we would have to collaborate on Lights, Camera, Crohn’s! We made it happen.
Here’s my interview with Dr. ZaZ about how our IBD can impact our mental health.
NH: “During the first day of the Crohn’s and Colitis Congress 2023 conference it was shared that rates of anxiety and depression are about twice as high in the IBD community compared to the general population–why is that?”
Dr. ZaZ: “The exact cause of IBD is not known. There are some common theories that have been suggested, these include genetic factors, changes in gut microbiome, alteration in immune function of the body, and effect of certain environmental factors. Interestingly, some of these factors have also shown to be associated with mental disorders like anxiety and depression. The gut-brain axis is a nervous system-based pathway that connects the nerve cells from the brain to the gut. This gut-brain axis has been found to play a role in the release of nerve cell chemicals (or neurotransmitters) in the intestines. One such neurotransmitter is Serotonin, which has a well-established role in several psychiatric disorders like anxiety, depression, bipolar disorder, etc. Studies have pointed out an alteration in serotonin activity in the intestines of patients with IBD 1.
The gut microbiome comprises of trillions of species of organisms mainly consisting of bacteria. The healthy gut-microbiome is altered in individuals with several conditions like anxiety, depression, Alzheimer’s, Autism, etc. This alteration is also seen in IBD and has been a subject of active research to better understand the various changes in the bacteria of the gut. Some of these bacteria produce chemicals that can serve as neurotransmitters in the gut. It is unclear if these chemicals could influence the gut-brain axis and contribute towards the occurrence of mental disorders. Last year we published a study that showed this association of increased prevalence of anxiety and depression among IBD patients 2. The added burden and distress was not just limited to IBD patients, the study also showed an overall increased healthcare cost and burden to hospital systems. It is in the best socio-economic interest of the government and the public to address mental health issues in society, especially among those with chronic illnesses like IBD.”
NH: “How can patients best articulate their concerns and communicate with their doctor about their mental health?”
Dr. ZaZ: “IBD patient sometimes suffer from anxiety, depression, sleep disturbances, and other mental conditions like eating disorders. Your GI doctor hopefully has established a healthy physician-patient relationship where you are comfortable to bring up any issues that you would like to discuss with your GI specialist. During my clinic visits apart from addressing the medical aspects of IBD, I frequently have a friendly conversation about my patient’s life in general with a focus on their overall well-being, including talking about their mental health. In addition, several individuals have a primary care provider (PCP) with whom they generally have a good relationship and feel comfortable bringing up any health-related concerns.
Psychiatric conditions can manifest with sleep disturbances, fatigue, loss of appetite, lack of interest in activities that you previously enjoyed, depressed mood, suicidal thoughts, etc. Sometimes IBD flares can contribute to some of these symptoms, especially sleep disturbances due to night-time diarrhea or constant abdominal pain. Use of biological medications can be frequently associated with fatigue that may last a day or two after taking the biologic. In a large-scale UK based study, presence of a diagnosis of IBD was associated with a higher likelihood to cause deliberate self-harm, anxiety, depression, and insomnia. Interestingly, the risk was higher among those with Crohn’s disease than with ulcerative colitis 3.
Remember, mental stress can also contribute to an IBD flare. Frequently I see some of my IBD patients go through an uncontrolled spell of psychological stress, maybe related to personal relationships or their place of employment. This when unchecked can precipitate an IBD flare, and in some cases develop psychiatric illnesses like anxiety or depression. Hence, it is important to have a stress-free life or mitigate stress to minimize its effect on your mind and body.”
NH: “I know you see a lot of college students; how do you navigate these concerns as their care provider? Do you tend to see this more with your younger patients—or is it across the board?”
Dr. ZaZ: “College life of a freshman can be quite stressful. The move away from the comforts of their homes to a new city or town and being surrounded by strangers can be overwhelming. This can cause psychological stress which may precipitate an IBD flare. Moving to college can also disrupt the continuity of care received from their established pediatric or adult GI specialist. Students may skip their medications due to storage issues, changes in insurance, feeling of shame of having IBD or fear of not being able to ‘fit-in’. All these factors can contribute to inadequate management of their underlying IBD. We at the University of Missouri try our best to accommodate college students in our clinics so they are cared for and IBD flares are prevented from occurring. The student health clinics are efficient in recognizing students with chronic illnesses and referring them to GI clinics. I frequently encourage students that they continue to see their primary GI specialist but also establish care in our clinic/hospital system, so in case there is a medical emergency or if they experience a flare, we will be well-informed beforehand about their medical history and have a plan in place to adequately treat them.
In a large study comprising of more than one million IBD patients, it was shown that being a female, having diagnosed with IBD as a child or a young adult and having a diagnosis of Crohn’s disease have been associated with higher likelihood of suicide attempts and suicide death 4.
Mental disorders in IBD are seen across all age groups but are somewhat more pronounced in those individuals whose disease is not well controlled or have not achieved remission since their initial diagnosis. Majority of IBD cases are generally diagnosed at a young age, several times in college students. Unfortunately, we also see frequent occurrence of mental disorders in younger age groups. Students have additional mental stressors when they have a chronic bowel condition like IBD. Many feel that they the lack of freedom in choosing to eat anything they like when they go out with friends or their need for frequent bathroom breaks, which can sometimes hinder them from participating in activities they choose or in making new friends. Many feel embarrassed to disclose their medical conditions to new friends or acquaintances, this perhaps cannot be stressed enough among those with an ostomy bag.
This leads to a state of inadequate social/family support which may push at risk students into developing mental conditions like depression, anxiety or eating disorders.”
NH: “Any advice for caregivers of young patients–who may have concerns about their child/teen/young adult and are unsure how to make sure their child is not dealing with anxiety/depression, but don’t want to overstep or upset their loved one?”
Dr. ZaZ: “It is very important for not just the physicians but also the caregivers involved in managing IBD in young patients to recognize signs of depression or other mental disorders. Do not always assume that if an individual is constantly tired, has disturbed sleep or looks depressed, that it is due to their IBD. Several times these are early signs of depression, and these young individuals need the support and help that they deserve to address these issues. Perhaps adult patients who have depression may recognize it and seek help, but kids or teens generally do not perceive these signs as an abnormal expression of behavior and may not even disclose them to their loved ones. Caregivers who attend clinic visits with pediatric specialists should bring up any unusual behavior they notice about their child and discuss it with the provider.”
NH: “How can mental health issues exacerbate IBD symptoms?
Dr. ZaZ: “Studies have shown that individuals with mental disorders who have IBD have a higher chance of developing IBD flares, they require escalation of their therapy and have increased incidence of death 5. (See Reference 5) This is quite alarming and should be brough to the attention of providers who take care of IBD patients. “Providers are not just prescribers”, simply writing prescriptions for medications, some of which are very expensive, is not enough to heal the patient. IBD is a chronic disease which lasts a lifetime, and medications alone cannot be the solution. Providers need to step up and participate in the mental well-being of their patients. If they are not able to address the mental health related issues themselves then referring to experts in the field is perhaps the best alternative approach. Depression may cause patients to skip their infusion visits or physician visits, uncontrolled anxiety or paranoid states may make them apprehensive about any therapy that they have been appropriately prescribed and may even stop the treatment. IBD patients with eating disorders may starve themselves or eat uncontrollably causing worsening of their bowel condition. These eating disorders are commonly present among young and female IBD patients who have body image disturbance 6.”
NH: “How is anxiety and depression typically managed in patients with IBD? (Medication, talking to a psychologist, etc.?)”
Dr. ZaZ: “The first step to treating anxiety and depression is to approach a provider with whom you are comfortable to freely express your medical complaints, problems, or any issues that you would like to discuss. Psychotherapy or behavioral therapy is probably the preferred approach in mild cases but in individuals with more profound symptoms, medications may be preferred in addition to psychotherapy. Finding a good therapist and setting up sessions at frequent intervals is important. In severe cases with suicidal ideations or attempts perhaps hospitalization may be required.
Multiple medications are commonly used for treating anxiety and depression. A PCP or psychiatrist may be able to find the right one for you, and please make sure you follow up with these providers since these medications may need to be monitored for their side effects and to adjust the dosage. Sometimes GI physicians may feel comfortable to prescribe these medications, but that may generally not be true for majority of gastroenterologists.”
NH: “As a GI, how do you try and facilitate positive relationships with your patients to help ensure they feel at ease with taking on their disease, managing it, overcoming flares/surgery, etc.?”
Dr. ZaZ: “My first step towards approaching IBD is to make sure that the symptoms that my patients are complaining of are truly from IBD and not from IBS or any other illness. Once IBD is diagnosed, I have a detailed visit with my patient with their new diagnosis. I usually encourage them to read up as much as they can and write down questions about their illness prior to this clinic visit. During the visit I start by giving a broad overview of what IBD is and the mechanism of disease process.I do this little exercise of talking about mechanisms by which IBD develops because I have noticed in my experience that several patients feel guilty about having their illness, and believe that in some way it was ‘their fault’ that they developed IBD. We then focus our attention on what are the available treatments why I think the recommended treatment would be a good fit, so the patients can make an informed decisions about their choice of therapy. I highlight the signs or symptoms they need to look out for that could suggest a complication or flare up of IBD. We provide them access to communicate with our clinic team if they have any questions; if they are concerned about a flare or if they suspect side effects from their therapy. Next, I answer questions they may have come up with during my discussion or from their personal research prior to the visit. Once the questions are answered I provide them with written material about their illness. I frequently encourage our patients to join patient support groups and direct them to online sources for information about IBD like the website for the Crohn’s and Colitis Foundation.”
NH: “Why is it so important to focus on whole person care–and recognize that IBD impacts more than the GI tract?”
Dr. ZaZ: “If we understand the mechanism by which IBD develops in the body, we can say that a dysfunctional immune system perhaps has the central role in the disease process. This immune system is connected to the entire body, it’s in our blood, guts, and other organs. Abnormal functioning of this immune system is likely to affect the entire body, although in IBD this abnormality primarily targets the bowels. But we frequently encounter what are called the “extra-intestinal manifestations of IBD”. These are referred to conditions that cause joint pains, skin rashes, eye redness, oral ulcers, liver disorders and other symptoms or signs that can be encountered in patients with IBD. Beyond these, patients with IBD are shown to be associated with higher incidence of mental disorders, pregnancy-related complications, chronic fatigue, and vitamin/mineral deficiencies. The effect on the bowels by this disease has a major impact on what one can eat, thereby limiting their nutritional intake. It is only fitting to treat these individuals as a whole, and not just their bowels. In terms of methods of treatment, apart from allopathic medical therapies, several other modalities of treatment are now being explored and accepted. Addressing diet and exercise is an important aspect to maintain healthy lifestyle in general, and especially so in patients with IBD. Running or other forms of cardio-based exercises have been shown to have a positive impact on the disease. Consuming healthy dietary supplements, like probiotics have been shown to be beneficial. Relaxation techniques and meditation also help keep oneself stress free, and perhaps prevent development of mental disorders as well.
One last thing we must also remember is that in today’s world social media can contribute to a lot of mental stress and anxiety, especially where disinformation campaigns can lead to confusion and poor choices in life. Hence it is important to have reliable resources to gain knowledge about IBD and its therapies. Sources like the Crohn’s and Colitis Foundation and its members like Natalie have been leading in educating several individuals through various platforms. In summary, eat healthy, exercise regularly, educate yourself about IBD, try to relieve stress and follow up with your doctor for medical care.”
I hope this article sparks a conversation and allows you to feel less alone in your mental health struggles. The findings show it’s anything but “just in your head.” Your feelings, fears, and struggles are valid. You are loved. You are not a burden. You are worth it. You matter. We need you here. Remember that.
If you’re thinking about suicide, are worried about a friend or loved one, or if you would like emotional support, call 988 any day of the week, any time. The 988 Suicide and Crisis Lifeline (formerly known as the National Suicide Prevention Lifeline) provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, 7 days a week, across the United States.
Reference Guide List
1: Coates, M. D., Mahoney, C. R., Linden, D. R., Sampson, J. E., Chen, J., Blaszyk, H., Crowell, M. D., Sharkey, K. A., Gershon, M. D., Mawe, G. M., & Moses, P. L. (2004). Molecular defects in mucosal serotonin content and decreased serotonin reuptake transporter in ulcerative colitis and irritable bowel syndrome. Gastroenterology, 126(7), 1657–1664. https://doi.org/10.1053/j.gastro.2004.03.013
2: Tarar, Z. I., Zafar, M. U., Farooq, U., Ghous, G., Aslam, A., Inayat, F., & Ghouri, Y. A. (2022). Burden of depression and anxiety among patients with inflammatory bowel disease: results of a nationwide analysis. International journal of colorectal disease, 37(2), 313–321. https://doi.org/10.1007/s00384-021-04056-9
3: Umar, N., King, D., Chandan, J. S., Bhala, N., Nirantharakumar, K., Adderley, N., Zemedikun, D. T., Harvey, P., & Trudgill, N. (2022). The association between inflammatory bowel disease and mental ill health: a retrospective cohort study using data from UK primary care. Alimentary pharmacology & therapeutics, 56(5), 814–822. https://doi.org/10.1111/apt.17110
4: Xiong, Q., Tang, F., Li, Y., Xie, F., Yuan, L., Yao, C., Wu, R., Wang, J., Wang, Q., & Feng, P. (2022). Association of inflammatory bowel disease with suicidal ideation, suicide attempts, and suicide: A systematic review and meta-analysis. Journal of psychosomatic research, 160, 110983. https://doi.org/10.1016/j.jpsychores.2022.110983
5: Fairbrass, K. M., Gracie, D. J., & Ford, A. C. (2022). Relative Contribution of Disease Activity and Psychological Health to Prognosis of Inflammatory Bowel Disease During 6.5 Years of Longitudinal Follow-Up. Gastroenterology, 163(1), 190–203.e5. https://doi.org/10.1053/j.gastro.2022.03.014
6: Stoleru, G., Leopold, A., Auerbach, A., Nehman, S., & Wong, U. (2022). Female gender, dissatisfaction with weight, and number of IBD related surgeries as independent risk factors for eating disorders among patients with inflammatory bowel diseases. BMC gastroenterology, 22(1), 438. https://doi.org/10.1186/s12876-022-02526-0
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