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 IBD can be especially challenging in a professional setting. Prior to becoming a stay-at-home mom and freelance/blogger, I worked full-time for 12 years. For 10 of those years, my Crohn’s was not in remission. This week on Lights, Camera, Crohn’s, guidance on how to approach conversations with your boss and co-workers effectively so you can feel supported.
The more they know
Before I became self-employed, I worked at three television stations, a public affairs PR agency, and in Corporate America as a communications specialist for a natural gas utility. With each interview and onboarding process, I waited until I was hired to disclose that I had Crohn’s disease to my boss. The first week of work, in a one-on-one meeting I openly shared about my disease and tried my best to educate my boss and my team about my health. Since I did not start blogging or any patient advocacy work until 2016, there was nothing online about my journey with Crohn’s. If I were trying to get a job nowadays, I wouldn’t have that luxury since my story is publicly shared. Every single boss, all my co-workers, and each employer were extremely understanding and empathetic about my struggles. I was incredibly lucky in that regard.
While working full-time I had several hospitalizations and bowel resection surgery that kept me out of work for 2.5 months. I was grateful for bosses who were generous with sick time and that my corporate job had a solid short-term disability plan I was able to utilize.
Everyone has a different opinion about when and how to best disclose your health or disability status. While some people consider their IBD a “disability,” others do not. I’m often asked how to navigate answering that question on a job application. I personally do not consider my IBD to be a disability, but it’s understandable if you do. Answer as you see best fit and most comfortable.
Why It’s Important to Share
Accommodation Needs: Explaining your condition can help you receive necessary accommodations, such as flexible work hours or the ability to work from home during flare-ups. One of the major benefits of the pandemic is how it altered how we work. Back when I was in the workforce, working from home wasn’t utilized as much as an option. I had high symptom days where I worked from home once or twice every few months, but it wasn’t a weekly occurrence. Hybrid working environments or remote jobs are ideal for those with chronic illness.
The flexibility work from home jobs provide is huge—whether it’s being able to work from your couch if you’re dealing with abdominal pain and it hurts to sit at a desk, being able to work in comfortable clothes or pajamas if the fatigue makes showering a challenge, or worrying about the commute and being able to travel without a bathroom mishap or having to go multiple times in a public employee bathroom…the list can go on and on.
Understanding: Colleagues aware of your condition are more likely to be supportive and understanding during challenging times. One of the most important aspects of IBD to share with others who do not have our disease is the unpredictability of our health. Since we’re able to look perfectly normal on the outside, it can be difficult for an average person to fully grasp or believe the pain we’re dealing with. I remember countless days in Corporate America having to unbutton my work pants and having to tell my co-workers I was on the struggle bus. I can still envision myself on the news desk when the camera shifted to a weather segment and slumping over in pain. Everyone I worked with was aware of when I was having an “off” day. I’ve had co-workers drive me to the emergency room during the workday. I always felt supported and was never made to feel like I was less than because of my Crohn’s and for that I am still grateful.
Reduced Stigma: Talking openly about Crohn’s and ulcerative colitis can help reduce the stigma associated with chronic illnesses and foster a more inclusive workplace. People may question or wonder why you may have unique work accommodations, while it’s none of their business, being transparent, and really stepping up to the plate and going above and beyond when you’re able will show others that you never use your disease as an ”excuse”. If you have an infusion or a doctor’s appointment that makes you arrive late, it’s helpful to inform your boss and co-workers so they know why you may be strolling in during the middle of the day.
Preparing for the Conversation
Know Your Rights: Familiarize yourself with your workplace’s policies on medical conditions and accommodations. Understanding your rights under laws such as the Americans with Disabilities Act (ADA) can provide a framework for your discussion. Check out these tips from the Crohn’s and Colitis Foundation.
Plan Ahead and Explain Your Needs: Choose an appropriate time and setting for the conversation. Ensure privacy and sufficient time to discuss your needs without interruptions. I always had a face-to-face conversation with my bosses, and they were appreciative of knowing. Clearly state what accommodations you need to manage your condition effectively. This could include flexible hours, a work-from-home arrangement, or having a desk closer to the restroom. Emphasize your dedication to your job and how these accommodations will help you remain productive. For example, “Having the ability to adjust my work schedule during flare-ups will help me stay on top of my responsibilities.” If I was prepping for a colonoscopy or having a scan, I let my team know.
Gather Information: Be ready to explain what IBD is, how it affects you, and what accommodations or support you might need. A high-level explanation is often sufficient.Your boss doesn’t need to know your entire patient journey. For example, “I have a chronic condition called Crohn’s disease/ulcerative colitis that affects my digestive system. This can sometimes cause severe abdominal pain and fatigue.”
Offer Solutions: Suggest practical ways to implement accommodations. For example, “During flare-ups, I could work from home and communicate via video calls and emails to stay connected with the team.” Your boss may have questions or concerns. Be prepared to address them calmly and provide any necessary documentation from your healthcare provider.
Communicating with Coworkers
You don’t need to share all the details. A brief explanation like, “I have a medical condition called Crohn’s disease/ulcerative colitis, which sometimes causes me to feel unwell,” can suffice. Explain how your condition might impact your work or interactions. For example, “There may be times when I need to step away from my desk more frequently.”
Reassure coworkers that while you have a chronic condition, you are still capable of performing your job. For example, “Most days, it doesn’t affect my work, but there might be times when I need a bit of flexibility.”
Encourage an open dialogue. Let them know they can ask questions if they want to understand better, but also respect your privacy. While I was hospitalized, I would often send an email to my team at work to provide them with a high-level update, so they heard the information from me versus someone else. For example, “Hi team! I appreciate all your well wishes. It’s been a difficult few days, but I’m hanging in there. I hope to be discharged from the hospital by the weekend and look forward to seeing you soon.”
Final Thoughts
Talking about IBD with your boss and coworkers can seem daunting, but it is a crucial step toward ensuring you have the support you need in the workplace. By being honest, clear, and proactive, you can foster a more understanding and accommodating work environment. Remember, your health and well-being are paramount, and having open discussions can help you maintain your health, while staying on top of your professional responsibilities. When interviewing for jobs, pay close attention to how an employer manages insurance benefits, short-term/long-term disability, and whether you feel like your boss and co-workers would be people you feel comfortable sharing your health struggles with. You aren’t married to your job, if you ever feel unsupported, seek employment elsewhere. Along with your boss, it’s helpful to talk with Human Resources, so you’re aware of all the medical benefits and support that is available for employees.
While IBD complicates life, I hope you continue to go after your dreams. Sure, there are going to be setbacks and roadblocks along the way, but you are worthy of whatever job or career you want to set out and do. Less than 3 months after my diagnosis, while on 22 pills a day, I landed a job 8 hours away from all friends and family and went after my dream of working in TV news. I’m proud of that and it’s a reminder that this disease doesn’t need to rob you of all you hope to be and all you hope to do. You are not a burden on employers and the sky is the limit for you.
Chances are you’ve heard the song, “Who Runs the World (GIRLS)” by Beyonce. Think of that song and then imagine all the incredible women in the world juggling chronic illness, their careers, and their personal lives. It’s no small feat.
Until recently, there wasn’t a group to celebrate and support us. But now that’s changed thanks to the Chronic Boss Collective. It’s the first and only professional membership designed for ambitious businesswomen living with chronic health conditions to help women dream big in their careers while prioritizing their health without tradeoffs. The international networking membership includes monthly in-person and virtual programming rooted in three pillars: professional development, connection, and wellness.
This incredible group is the brainchild of Lilly Stairs, a well-respected patient advocate and entrepreneur. At the age of 19, Lilly was diagnosed with psoriatic arthritis and Crohn’s disease.
Making the concept become reality
The concept for Chronic Boss Collective had been on Lilly’s heart long before everything came into fruition. As an ambitious businesswoman who prioritizes her health and self-care, she had yet to find a space that holds these two statements to be simultaneously true. So, she created it.
“Throughout my career, I’ve met remarkable women whose lives have been turned upside down by a chronic condition, but they choose to keep going. They choose to give back. They choose ambition in the face of adversity. Every time I encountered a new woman who fit this profile, I couldn’t help but wonder how powerful it would be to get them in a network together,” said Lilly.
Because of her unique lens as a driven businesswoman living with chronic conditions and working in healthcare, she identified a gap that most people didn’t realize existed.
“For the past decade, I’ve had the privilege of watching extraordinary women transform their struggle into their strength. There’s an undeniable magic to these women living with chronic conditions who choose ambition. By harnessing that collective power, the Chronic Boss Collective is taking off like a rocketship.”
Currently there are 100 Founding Members. There’s an open enrollment period going on right now and new members are being accepted. Lilly tells me she expects to triple the membership over the course of this year. You can learn more and apply on the CBC website.”
Let’s talk Member Benefits
The Collective Membership is jam packed with benefits designed to help you level up in your health and wealth. Rooted in professional development, connection, and wellness, the Chronic Boss Collective offers the following benefits:
✔ Chronic Boss Mastermind
✔ Boss Boosts: Professional Development
✔ Boss Breaks: Wellness Events
✔ Monthly in Person Meetings (Boston Only)
✔ Private Online Community
✔ Member Directory
✔ Member Feature
✔ Affiliate Program
✔ Exclusive CBC Curated Resources
Detailed Benefits
Private Community
A custom online platform is complete with a private member directory, resource library, and buzzing chat rooms for you to network away with fellow ambitious members.
Chronic Boss Mastermind
Virtual mastermind with the entire membership! This jam-packed event includes:
Kickoff: Led by our Founder designed to amp you up and set intentions to get after your health and career goals this month.
Networking: Expand your reach and visibility and deepen your connections with the Chronic Boss Collective membership
Mastermind: Opportunity to submit a challenge you’re facing ahead of the meeting and then break into small groups to harness the power of the collective and mastermind it.
“Boss Round”: Lightning round of your top “ask” to get support where you need it most!
Boss Boosts: Professional Development
Monthly Boss Boost webinars lead by members and industry leaders presenting in their “Zone of Genius” designed to help you level up in your career. Think building your brand, negotiating your salary, starting a business while living with a chronic condition…and so much more.
Connection
Monthly in-person meet-up for chapter-based members – a mix of networking and fun!
Boss Breaks: Wellness
Quarterly wellness event centered on taking care of you. From mindful movement to gluten-free bake-alongs!
Member Spotlight
Get featured on the CBC social media and have the exclusive opportunity to contribute to media stories.
Resources
Proven methods, tools, and guides to help you level up in your career while maintaining your health.
Affiliate Program
Earn 10% commission when you refer new members to join!”
The priceless power of community
The Collective launched this past January (2023), and it is remarkable the impact it is already making on the lives of members.
“Every day, members are buzzing about the magic happening in Chronic Boss Collective. Women are connecting online and IRL to give each other valuable health support and share their best career and business advice. Our conversations skip the small talk and get straight to a point of vulnerability. The coolest part is that now our members are collaborating on projects that will make a real difference in people’s lives, like mental health resources and patient platforms.”
While CBC is seeking women who are ambitious, high achievers, and making an impact, fitting that description does not mean you have to be working as a full-time professional or running a large-scale business.
“For example, stay at home moms and chronic illness advocates who have monetized their advocacy work or built a side hustle (think Etsy shop, Amazon storefront, social media influencer, etc.) could be fabulous members,” said Lilly.
Requirements and cost to participate
The Collective is an exclusive membership for high achieving career women and all members go through an application and screening process before being accepted.
“Our virtual international membership is $397/year. Our chapter-based membership, which includes a once per month in person meeting, is $497/year. This is currently only available in the Boston area, but we have ambitious plans to scale to new cities in the coming years.”
Hopes and dreams for the future
Lilly says plans are in the works to massively scale the Chronic Boss Collective.
“Not only do we plan to scale the membership, but we plan to scale our offerings. In addition to the membership, we’ve already launched the Chronic Boss Scholarship which has awarded $31,000 to 31 students living with chronic conditions who have persevered and succeeded. We have big plans to usher in impactful programming that will serve the millions of women who choose ambition in the face of living with a chronic condition. Stay tuned…we’re just getting started!”
Feedback from CBC members
“The Chronic Boss Collective has changed my life in many ways. Since becoming a founding member and acknowledging my worth, my life has changed in ways I never could have imagined. The connections, opportunities, and immediate camaraderie amongst intelligent, inspirational, and courageous women has been my biggest blessing in 2024! The degree to which we draw strength from each other is something I have never witnessed in my life and I’m profoundly grateful to share my Chronic Boss journey with so many astonishing women.” – Lisa Z.
“This group is amazing. Thank you for launching this. I feel like this is the sisterhood that I didn’t know I needed whether for my health, business, or career and I’m just so thankful for it especially at this time in my life.” – Erika P.
“I can tell in just a month that I made the right decision to join. The connections I’ve made and leads already generated through the community will help me grow my design business and allow me to work with my people — authentic and adaptable chronically ill women who are changing healthcare.” – Sarah S.
This post is sponsored by Corra. All thoughts and opinions shared are my own.
For as long as Elya Lane can remember she had signs and symptoms of a health condition. It wasn’t until college that she received her official diagnosis of Ehlers Danlos Syndrome and POTS. She says her poor health started to spiral with other comorbidities popping up, the worst of which was chronic UTIs that left her whole body in crippling, burning pain and weak from the antibiotics. Elya’s personal journey with chronic illness inspired her to create the Corra App. This week on Lights, Camera, Crohn’s we learn about how she made her dream a reality and how she hopes to improve peoples’ lives.
The breaking point
“I was constantly plagued with fears of antibiotic resistance, infection complications, or complications from long term antibiotic use. I got to the point where I was so sick that I wrote letters to my kids and my family in case something happened to me. I started tracking all our passwords and making videos for my husband on where our important files were, how different things were stored, all the kids’ data, etc. While I tried to face this potential outcome bravely, I was devastated imagining my kids growing up without a mom,” said Elya.
As she navigated these dark and daunting days, the despair caused her to think about how she could fight back and regain control of her health.
“I started to religiously track my health in journals before transferring to Excel spreadsheets. I was so frustrated by how exhausting and impossible it felt to crunch that much data, so I turned to searching for a symptom track and correlative software to help me. I downloaded and tried every single one I could find – but none met my needs. Some even gave me back faulty data which made me angry. That’s when I decided to create a solution myself,” she explained.
In 2020, after losing access to all her healthcare management tools, and with her health declining rapidly, she decided to create Corra.
The meaning of Corra
There are quite a few chronic illness apps on the market, some that even attempt to offer correlative insights. Corra is short for correlations. Elya wanted to identify correlations in her health so that she could find her triggers and optimize her lifestyle.
Here’s what sets Corra apart from other chronic illness apps on the market:
The algorithm was custom built by Corra’s chief data scientist, Simeon Wilson, who has a master’s in quantitative economics from UCLA. “We are not aware of any software that exists that compares to what Corra is currently offering with our correlative algorithm.”
Corra was designed by individuals with chronic illness. “Not just me! While the idea and original designs are all mine, we brought on more than 200 beta testers with various chronic illnesses to provide their feedback and help us tailor the app to the needs of the chronic illness community. Even now, we continue to rely on the insights and feedback from the community to enhance and adjust the app. I want Corra to always be designed by and created for our community.”
We correlate with nutrition in an accurate and helpful way. “I believe nutrition plays a massive role in our health so one of our key focuses with our algorithm was to be able to correlate seamlessly with nutrition inputs.”
Corra does not sell user’s data. “We don’t scrape your data from your device or browsing history, we don’t use your data to sell you anything, we don’t share your data with third parties. Your data is yours alone. As an individual with a chronic illness who often feels more like a commodity than a person, making sure people can receive personalized insights into their health without signing away their privacy is incredibly important to me.”
Corra’s bells and whistles to check out
The ability to track health data in one place without having to use five different apps to log information. “My favorite part of Corra is of course the correlations, because getting detailed insights like that about my health is equivalent to having a team of data scientists run extensive tests on my health and provide me reports. It’s life changing to be able to learn about my health overtime and create a custom-built lifestyle that caters to my future.”
Discovering positive and negative correlations. “You may receive insight that something has x% chance of increasing or decreasing a symptom. I think being able to get data on the things that are helping is just as important as being able to identify triggers.”
The ability to log appointments, download PDFs of your data to share with my doctor, track medications and supplements, track mood and stress levels, etc. “I’m also extremely excited about all the upcoming integrations we have in the works! Soon we will be connected to Fitbit and Apple Health with Garmin, Cronometer, Weather data, and hopefully Oura coming shortly after! Over time we will continue to integrate with as many devices and apps as possible so users can have all their data in one location!”
A promising future
Elya says being able to learn what foods, activities, supplements, and medications help or cause symptoms has enabled her to have a much better understanding of how best to manage her health conditions.
“I’ve been told to go vegan, cut out red meat, don’t eat dairy, sugar, gluten, eat paleo, try a carnivore diet, go vegetarian, and try cutting out leafy greens… what I found with Corra is that I didn’t need to make these drastic nutrition changes, I only needed to cut out some foods in each of those categories. For example, I discovered that I have a high trigger correlation with ground beef. I can eat steak and other red meat, but not ground beef. Similarly, chicken thighs are a trigger for me, but chicken breast is not. Same with gluten, there are some gluten products that are triggering for me, but not all gluten triggers me. Being able to identify exactly which foods to cut out, rather than willy nilly cutting out entire food groups or going on drastic diet changes, has been an absolute game changer.”
Elya has also discovered that cold and flu medications like Mucinex are major triggers for her. This helped her realize why she would get a horrible flare a few days after coming down with a cold or flu.
“Now, I try to manage my colds and flus with other medicine to try to prevent the flare on top of the cold. It’s also important to note that I’m not cured! I have to manage my diet and my activities and my supplements every day. The difference is, I’m no longer throwing shots in the dark, I now have the information I need to manage my condition to the best of my ability.”
Information really is power, and it has given Elya control over her life and reduced her anxiety. Because of Corra, she is now coming up on two years without the need for daily antibiotics. It’s been over 2 years since she visited the emergency room.
“I’ve found that medical providers are far more willing to accept unbiased data from an algorithm than trust my verbal expression of my experience, so in that way Corra becomes my advocate and backs up my statements,” said Elya.
She says her health conditions have caused her to go through depression, isolation, and hopelessness. But her hope for Corra is two-fold.
“First, I believe it can help others identify their triggers and optimize their life so that their conditions can become more manageable, but I also hope that Corra can be a beacon of light for those struggling to see they are not alone. There are so many steps between the start of symptoms and any kind of treatment let alone cure (depending on if your condition is even curable)… and I want to be the one that goes into the trenches and helps people who are suffering the most. So many people in the chronic illness community get forgotten or left with “your test results are normal” when they know there is something wrong with them. I want to create a company that comes alongside them and lifts them up and allows them to have their voices heard.”
Downloading Corra
You can download Corra directly from the App store or the Android playstore. There is a free version as well as premium access. The premium version is $7.99/month or $24.99 if you enroll for a 6-month subscription. Elya is looking for Corra Insiders who are interested in getting free access to the app. By joining the Insiders group, you get a first look at upcoming features. This provides you the opportunity to share feedback on what you do/don’t like or would like to see improved or added in the future. Sign up for the Corra Insiders program here.
It’s the first of its kind program dedicated to training dietitians about IBD-focused nutrition. Cedars Sinai Hospital in Los Angeles, California launched its IBD Dietitian Apprenticeship in July 2023.
Registered IBD dietitian Stacey Collins was the first registered dietitian to be selected, participate, and complete the program. I’ve been amazed at all she does for our community and been excited to dig deep and learn what her key takeaways have been from this experience. As someone whose lived with ulcerative colitis since 2012, when she was 21-year-old, Stacey has a unique perspective and approach.
This week on Lights, Camera, Crohn’s we’ll hear about her firsthand experience and why this Apprenticeship program is just what our community needs. The hope is that registered dietitians who participate in the program can take their knowledge from the experience and be able to plug themselves into an IBD Center to build and strengthen an IBD program.
Going up against lack of education and funding
Stacey tells me there is little to no education that they receive in dietitian training on how to do nutrition specific to gastroenterology, much-less IBD, and she says this Apprenticeship program fills the gaps and then some.
“So much of what I learned was through self-study before this program. But in the Apprenticeship, whether I was part of the team rounding on patients in the hospital, or seeing a newly diagnosed patient in clinic, or sitting on the floor with a 3-year-old patient asking about their Paw Patrol toys, I left every encounter feeling that special kind of discomfort and gratification that comes with growth and learning. This was truly a hands-on learning experience from many different sides of the IBD rubix cube, and I’m so grateful I wasn’t learning it all by reading slides from a PowerPoint and taking a test- who learns that way anyway?!”
Addressing the unmet needs
Once registered dietitians complete the Apprenticeship they can work in an academic center or a private practice that values IBD nutrition and has the financial backing to justify the need for a dietitian.
“There are institutions and people in places of power who are advocates for the profession of IBD RDs, and this work is simply impossible without them. IBD RDs have the potential to support patients throughout their journey as an accessible, consistent member of their multidisciplinary care team. Unfortunately, a lot of this potential is systemically handicapped by the lack of funds: RDs are investments rather than quick money-makers for a clinic without physician advocates and creativity, and we NEED people at institutions to see our value,” said Stacey.
The main programmatic goals are to provide a structured, supervised training program for dietitians to learn a model wherein dietitians work together with physicians and advanced practice providers for the care of adults and children with IBD.
Places do exist (and many are coming) that support this multidisciplinary model of healthcare delivery, but there’s such an unmet need, especially for people who don’t have access to these IBD centers. The hope is for this Apprenticeship program to fill the gaps of that unmet need by signaling to physician advocates at these institutions that a nutrition professional with intense training and experience DOES exist, ESPECIALLY for more complex patients who have IBD.
So much to be done for patients Registered IBD dietitians can assess people for malnutrition regardless of their stage of IBD, which is common even in remission and linked to poor health outcomes, along with so much more. Stacey says:
We can help catch micronutrient deficiencies or insufficiencies that many other care team members might miss, and we can correct and monitor them.
We can help patients experiencing food insecurity find ways to nourish themselves within their budget constraints with an eye toward prevention of other comorbidities.
We can help nutritionally prepare patients for surgery.
We can help patients in need of a medical or therapeutic diet intervention find a way to make it a sustainable intervention for themselves.
We can help patients nourish themselves using a whole-person approach, whether they are juggling multiple diagnoses, starting a new job, headed off to college, or too tired to eat: we have tools for helping patients feeling like they can handle it all
We can help prevent re-hospitalizations from small bowel obstructions or dehydration by giving patients IBD-specific tools for understanding their body.
We can save physicians time by inheriting questions about nutrition and/or supplementation regimens, and we can personalize these for each patient.
We can even show GI or IBD Fellows what it’s like to feel spoiled working with an IBD dietitian, and hopefully they’ll advocate to hire one of us wherever they make their final clinical stop
She’s confident IBD dietitians can make nutrition an accessible tool when it so often feels inaccessible with IBD!
Stacey’s top apprenticeship moments that left a lasting impression
Six months is a long time to pick up your life, move to another state temporarily, and fine tune your knowledge and expertise on nutrition and IBD. Here are the key takeaways Stacey says she took away from the experience:
1. Patience with patients is key; everyone is on their own timeline.
“I got to see a doctor celebrate with a patient who finally quit smoking cigarettes for good. After that encounter, he told me that he had been pleading with that patient for 20 years to stop, but he never blamed the patient for having a tough time stopping. He really was empathetic to the fact that they had a lot going on, and he knew they’d get around to it once life allowed. That was really enlightening to see: patients really are doing their best. How can I support them, especially if their timeline looks differently than the expectations that I have?”
2. It doesn’t have to be all-or-nothing; don’t let perfection be the enemy of good nutrition.
“One day I was with Erin Feldman, RD (Cedar’s Pediatric GI and IBD RD). She was listening to a worried mom talk about how she didn’t want her kid to eat sugary cereal, but that’s ALL they would eat for breakfast: it was the sugary cereal, or it was nothing at all. The child was exercising their choice autonomy and exploring what that looked like around mealtimes, and it was a challenge for the parents. Erin had a rapport established with the family, and I could see that they really trusted her. Plus, Erin is a mom, too, so she speaks the same first language as parents, and she really empathizes with the fact that many IBD parents are blamed for their child’s symptoms or disease. She truly met the parents right where they were at that moment.”
“Instead of focusing on the PERFECT breakfast with beautifully-balanced macronutrients and color that the child certainly would refuse, she said, “What if you just added PLAIN Cheerios and a couple of raspberries to their sugary cereal, that way they’re getting some antioxidants from the berries and a more diverse source of grains into their breakfast?” It was TOO easy, and the parents were like, “YES. We can do that.” and just like that: not a perfect solution, but a practical intervention that would work for where the child is right now.”
And that’s the power in having multiple touchpoints to a dietitian: next time they see the doctor again, they’ll see Erin, too, and they can make more adjustments for how life is being lived around food at that stage, too. So often people have the ambitious idea of going from zero to specific carbohydrate diet (SCD) all in one encounter, and the reality is that often multiple conversations and coordination of resources are needed, and meeting patients where they are looks different for everyone.
3. Nutrition interventions can be hard, and multidisciplinary support really is key.
“So often as dietitians, it’s easy to get stuck in the weeds of research and to get excited over interventions that have promising outcomes. This happened with a patient needing Exclusive Enteral Nutrition, but ~5-7 days into it, they were uncomfortable, and they really missed food. I was able to have a conversation with the patient alongside their doctor in the same room, who patiently reiterated our rationale behind the intervention and said, “not if it compromises your mental health. Let’s stop it if your brain is telling you we need to stop- we need to respect that. You should be proud that you tried this, and now you know!” And I could tell the patient was so relieved to have reassurance from their doctor that no matter what THEY chose for THEIR body they’d be supported by their doctor and by their dietitian. It really does take a team.”
4. GI Doctors REALLY do not get exposure to solid nutrition in their training
Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director) arranged for Stacey to lead a learning session with the GI Fellows at Cedars, and in a room full of some of the smartest and most compassionate clinicians.
“They wanted to know all about the different nutrition interventions that we can recommend for patients. It felt like they had been rewarded for being the best of the best all by themselves their whole lives, and now they had an opportunity to learn more about how to collaborate effectively. They were all so enthusiastic.”
Stacey noticed after that session that the GI Fellows felt comfortable texting her while on rounds if she wasn’t there to ask if she’d stop by a patient’s room, or they’d text to ask about B12 supplementation after remembering to screen for a deficiency.
“They really understood the value that IBD RDs bring, and it’s not because I’m a great public speaker (I’m really not); it’s that they had this additional exposure to working with a dietitian with specialized training. This really made everything click for me: doctors don’t always know the right questions to ask patients about our nutrition needs, because most of them haven’t had the education OR the exposure to team members with the expertise to be truly helpful for patients. Working in silos keeps patients isolated, and I’m hopeful that the GI Fellows, when/if they leave Cedars become physician advocates to ensure that their patients have access to an IBD experienced RD.”
Plans for the future
When Stacey completed her Apprenticeship this winter, she did not envision returning full-time to her online private practice. She thought she’d start working at an academic institution, because the purpose of the program is for the dietitian to seamlessly integrate into a multidisciplinary GI care team.
“I am still holding out on hope that one day I could have both (but I’ll never give up my private practice- I love it so much). Truthfully, I’m thrilled to be back with such a passion for teaching patients how to implement some of the skills that I’ve learned into their own life, plugging it into their existing care teams, even if I’m on my own in private practice. I already helped patients through perioperative nutrition before this program, but now I’ve got some RICH resources to help make IBD surgery and nutrition really make sense for patients now in a much clearer way,” Stacey explained.
She’s able to take the research that they did from the perioperative IBD Nutrition program that exists at Cedars and put it into practice with her patients, and it’s a bit of a full-circle moment for her, having lived through IBD surgery with limited support.
“I’m a much better listener than I was before this program, a skill I learned from Kelly Issokson, MS, RD (Clinical Nutrition Coordinator, Course Director: DIET Executive program, Apprenticeship Director). Additionally, I’m more practical in my approaches and meeting patients where they really are, too, a skill I learned from Erin. I’m working on some ways to expand IBD RD accessibility, too. I’m a much more confident advocate on behalf of my patients now, too.”
Advice for the newly diagnosed
If you’re reading this and you or a loved one was recently diagnosed with IBD, ask your GI doctor to hire an IBD Dietitian. Stacey knows this doesn’t exist in most places, and as a patient, she understands how silly it is to constantly be burdening patients with requests. But the field of IBD Nutrition exists because enough patients asked, “What can I eat?” and enough doctors paid attention to it to be documented research. This is the next piece of the puzzle.
If your care team provides a registered dietitian who doesn’t specialize in IBD, that’s not going to cut it. Be assertive in asking your GI office to hire an IBD Dietitian, or invest in training their Dietitian, if they really want to help their patients.
Stacey advises patients and caregivers to stay off online forums. There’s so much food fear there, and life is bigger than that. Lastly, she advises reaching out for help. Even if Stacey may not be a good fit for you, she’s happy to provide patients with other RDs that she’d enthusiastically see, because an informed decision is a good one.
During her Apprenticeship, Stacey chose to do a research project to examine the effects of malnutrition and perioperative nutrition supplementation on surgical outcomes in people getting IBD surgery, whether that be for j-pouch, permanent ostomy, lysis of adhesions, or a resection.
“We had a small sample size (n=25). Regardless, we found that perioperative nutrition supplementation had a statistically significant impact on decreasing the length of stay, meaning that greater adherence to the nutrition supplementation protocol was associated with a shorter time spent in the hospital. Regardless of nutrition status (malnourished or not), everyone seemed to benefit from the nutrition supplementation protocol that we recommended for before and after surgery.”
Stacey is hopeful that more research with an even larger sample size will help inform these results so that this can be a resource more widely available for patients!
The future is bright
“If I dared to dream about what this could look like in the future, the closest possible model in existence is at UCLA under Dr. Niru Bonthala who is the Director for Women’s Health in IBD. Basically, I see the RD’s role evolving to cover every nutritional aspect of IBD with specialized knowledge to support patients in each life circumstance: from surgical prehabilitation to home nutrition support (TPN or EEN) and transitioning back to eating; to the overlap of eating disorders; to fertility and perimenopause; from anywhere along the spectrum of LGBTQIA+ care and/or transgender care; from peds transitioning to adult care, and even adults to aging adults; even athletics and/or eating disorders.”
There’s a rich opportunity within all these Venn-diagrams for a specialist interest and training to exist in IBD Nutrition, and this learning opportunity exists at Cedars.
“I’d also love to see the RD in an outpatient clinic even able to do community outreach: teaching basic cooking skills, procuring menu items for their medical diet (and beyond), and even showing patients and their families what this could look like by partnering with local food banks. Again, this is just me dreaming here in a world that I think should exist for people who have IBD and for RDs who are trained in IBD Nutrition,” said Stacey.
The current IBD Apprentice Yi Min Teo (@herbsandfood) came from both clinical and private practice backgrounds like Stacey. Yi Min will finish her training in July 2024. The program is supported by a grant from Leona M. and Harry B. Helmsley Charitable Trust.
In addition to dietitians wanting more IBD nutrition education, there’s also an Executive Program for MDs/DOs, APPS, and includes both virtual and in-person learning opportunities. You can apply here.
When you’re diagnosed with Crohn’s disease or ulcerative colitis it’s a lot to process. When I started this blog in 2016 and after living with Crohn’s for nearly 19 years, my focus has always been to be the voice I needed to hear upon diagnosis and what it was like to experience young adulthood with a chronic illness. As a 21-year-old, fresh out of college, I had to navigate my career, finding love, and becoming a mom with IBD on my own. The first decade I wasn’t publicly sharing my story and didn’t know there was a patient community to tap into online for support.
The first week I started experiencing Crohn’s symptoms-March 2005, Senior Spring Break in the Bahamas
Often as the years go by and we get beyond the initial shock of hearing the news and what this means for our lives, we tend to forget the challenges we faced to gain our footing. This week on Lights, Camera, Crohn’s I share some tokens of knowledge I’ve gained along the way that I hope will help you on your own journey, no matter where you find yourself at this moment.
Healing—physically, mentally, and emotionally is not linear. We all experience IBD uniquely—some people’s disease course is milder, others have it severe. We all cope differently with knowing and living with a chronic illness. Give yourself grace in the difficult moments. It’s ok to feel resentment or anger. It’s understandable to wonder at times “why me.” It’s “normal” to feel scared and anxious whether you’re a few weeks or a few decades in. Sometimes it’s taking things one hour at a time, other times it’s taking them one day at a time. Because of how quickly a flare up can strike, I try to live in the now and not worry about tomorrow.
You didn’t have control of getting your chronic illness, but you can control how you react and choose to heal from it. It’s easy to feel like you may be to blame if your health takes a turn for the worse. But understand this is not your fault. The unpredictability of IBD makes it feel like we’re often in the passenger seat and spiraling in circles, but this disease cannot control how you react, respond, and choose to heal from it. No matter what, you’re in control of the healing process. Whether it’s finding support through fellow patients and caregivers or through professional therapy, you won’t look back and you’ll be setting yourself up to take this on to the best of your ability.
There is no comparison game. Since the majority of people are diagnosed with IBD in their teens and into their 30s, it can be easy to try and measure your timeline and accomplishments to that of your peers who do not have chronic illness. It can also be tempting to look at people in the patient community who seem to have the world by the tail, when you’re struggling to get out of bed each day. This isn’t a competition of the sickest or a ploy to see who can smile through the pain and get more done. The only person you need to answer to, is who you see looking back in the mirror. You determine what you’re capable of and what you want in life. Your roadmap is yours and you’re right where you’re meant to be.
You set the benchmark for what’s possible. Your IBD is part of you, but it’s not your entire identity. Remember that even patient advocates are posting somewhat of a highlight reel. Even those who are working, in love, and parenting are dealing with their own struggles, too. My best advice would be to think about what you hope for in life (don’t even think of your IBD as part of the equation) and go after it. Yes, your health may cause some detours and roadblocks, but you won’t find your way unless you try.
No one knows your body better than you. I don’t care how many letters someone has after their name, they aren’t living in your body and experiencing what you feel each moment of every day. Be vocal when you need to be. Communicate as much as you can with your care team and paint the clearest picture of your reality. If you keep parts of your struggles to yourself or dumb down the severity of your day-to-day life, the only person you’re hurting is yourself. Learn about nutritional bloodwork and advocate for yourself to be tested for a full iron panel with Ferritin and Vitamin D. Get labs every 3-4 months so you can keep a finger on the pulse of what’s going on with your body. If you feel like your provider is being lackadaisical, don’t hesitate to get a second opinion. Take ownership of your health and find a provider who in your darkest moments you would feel most comfortable by your bedside in the hospital.
Make sure your GI specializes in IBD. There are gastroenterologists and there are gastroenterologists who specialize in Crohn’s and ulcerative colitis. Once you’re diagnosed with IBD, it’s imperative you try to find a GI who is an IBDologist. This can be tricky if you live in a rural area, it may mean you need to travel several hours to find a provider who fits the bill. If you move or are unsure of a good GI to check out, it’s helpful to reach out to your local Crohn’s and Colitis Foundation chapter and often they can help point you in the right direction.
Diet and stress levels matter. Read that again. Any doctor who tells you diet, and stress doesn’t impact your disease process is wrong. There are incredible registered dietitians throughout the US who specialize in IBD, and many of them have IBD themselves! Before you start restricting yourself or your child, make an appointment—most provide virtual options and this will help you get educated on what works best for you. What is a trigger for one person, isn’t necessarily a trigger for another. There isn’t a one-size-fits-all diet or else we would all do it.
Emotions will strike when you least expect them. Even almost 19 years in, I’ll sometimes break down and cry when I think about my Crohn’s or how it makes me feel. Just because you become a veteran patient doesn’t necessarily mean you fully ever heal from the hurt life with a chronic illness causes. It’s ok to have these moments where you may feel like you’re allowing your disease to control your emotions, you’re not. You’re human. It’s healthy to feel frustrated and to get emotional about what your life is like because you have IBD.
You’ve endured more than you give yourself credit for. As chronic illness patients we go through so much that often we don’t even bat an eye over experiences that would be extremely painful or stressful to the average person. Think about what a bad ass you are and how that carries over into each and everything you do in life. If you’re newly diagnosed you will get there—but even those initial weeks and months, you’re enduring more than the people who have their IBD under control and have a good handle on their body. No matter how many surgeries, scopes, scans, and IVs I’ve had, I always get a little teary eyed because it brings me back to 21-year-old me and then all the trauma that comes along with living with Crohn’s for 19 years. While those tears are sad, they also come from the strength of reflecting on what I’ve gone through to bring me to now.
Stay in tune with how your body is speaking to you through symptoms, do not ignore them. It can be challenging to communicate what you’re feeling to someone who does not have IBD. I get that. But by protecting loved ones, friends, and doctors from what you’re experiencing you’re preventing them from stepping in before it’s too late and before you know it your flare has gotten out of control and requires hospitalization. I used to be that person all the time. I would always internalize the pain, silently fighting through each day, doing anything possible to stay out of the hospital until the symptoms were simply unavoidable and required medical intervention. One hospitalization always sticks out in my mind. It was May 2009. I was a 25-year-old morning news anchor in Wisconsin. I was solo producing a 2-hour morning show dealing with horrible abdominal pain that kept making me throw up in the garbage can next to my desk in the newsroom as I struggled to put together the show. Finally, I couldn’t take it anymore and I had to call my co-anchor, who rushed me to the hospital. I was released from the ER hours later after my parents had driven from Chicago in the middle of the night only to return to the hospital that afternoon and have my dad carry me in his arms through the automatic doors. I was finally admitted and given the medical intervention I needed. Take it from me, you’re creating even more of an uphill climb for yourself if you don’t start speaking up when you initially notice something is awry.
The worst moments are just that, moments. When you hit your breaking point, when the pain seems overwhelming, and you can’t see the forest through the trees try to breathe. Go to your happy place. Recognize this is one day, one moment, I always tell myself “This too shall pass.” Go to your happy place mentally. Do mindfulness exercises. Shut out the outside world and focus on your breath. Detach from your body as best you can. Think of people who inspire you and bring you joy. Everything is fleeting. Each flare, each recovery, each prep, procedure, and surgery…it has a start and a finish. One day it will be a memory you talk about.
Pay attention to who is there when you when are quiet and when you’re going through the thick of it. IBD is too big to deal with alone. Lean on people you can trust, who you genuinely feel safe sharing your health woes with. This will be fewer people than you’d ever imagine. Be prepared to realize that many of the people you thought would be front and center to support you will be non-existent. It’s fine to mourn those friendships or relationships, but don’t waste your time or energy on them. Your disease will give you the ability to see who loves you and who wants to be present in not only the good times, but the bad. You can’t change people. Hold on tightly to the people who show up consistently, expecting nothing in return. Those are your people.
Emmanuel Acho shared a reel on Instagram recently that really hit home for me and caused me to reflect a bit on the people in my life and their roles. In the video he explains that friendship is like a house. You have your window, door, and floor friends. Window friends are outside looking in, they don’t know what’s going on in your house. They don’t have intimate access to what’s going on in your life. You can only let so many people into your house. Door friends come in and out of your life depending on the season. When life gets too hard or when your world turns cold, they might exit. Your friends might not be equipped for that season. Floor friends—aren’t going anywhere. You might track mud, but they will last regardless of the season. They are there to catch your tears and hear your fears. Remember—a house has more windows than it has doors and more doors than it does floors…if it has one good floor, you’re set.
Just because you need medication does not mean you’re taking the easy way out. I’ve been where you are. I remember lying helpless in a hospital bed and what it felt like to be told I needed to “break out the big guns” and start a biologic medication back in 2008 when there were only two options on the market for those with IBD. In that moment, we all naturally want to learn about side effects and what this could possibly mean for the long term. But please try and focus on the actual risk versus the benefit. As someone who has been on Humira since July 2008, I’m so grateful for my medication for allowing me to live a full life, bring babies into this world, and be a present, able-bodied, and active mom. It’s not all medicine, or all diet and lifestyle, often for many of us who have moderate to severe IBD we need a mix of both, and that’s ok. You can still thrive and be healthy, despite being on a medication with a black box label.
You are not a burden, and you deserve love. Any romantic partner who makes you feel less than, isn’t present when you need them most, or doesn’t show any empathy or interest in your daily reality isn’t going to stand the test of time. Use your IBD to your advantage to see your partner’s true colors. Be honest and upfront when you start dating and if you ever feel like you need to defend their actions or make excuses consider that a major red flag. Dating and marrying a person with a chronic illness isn’t for everyone, and that’s fine—but when it comes to people like you and me, we need a partner who is willing to take the challenge on beside us every step of the way. Find someone who you feel comfortable communicating openly with, who sees you for more than your disease.
IBD is not a battle to be “won” or “lost.” One of my pet peeves with any health condition or disease is when people say “so and so lost their battle”…they didn’t lose shit. Diseases are not a game. Oftentimes reaching remission is due to luck, disease severity, or surgery. I spent a decade of my life with active disease and have been in remission (thanks to surgery) for almost nine years. I don’t give myself credit for that, I’m not “winning.” It’s because of my efforts to stay diligent with my biologic, vitamins, safety labs, daily decisions, and check-ins with multiple specialists, but I also don’t think I’m at this point because of something special I’m doing compared to someone else. We’re all dealt a different hand of cards in life. Your IBD isn’t a win or lose situation—you’ll celebrate big victories and small ones, too, your disease can rob you at times, it’s a never-ending exchange and game of back and forth. You are not less than because you are flaring. You are not lazy for taking medication or failing because you struggle to follow a strict, regimented diet that may or may not help you. Once you stop thinking of everything as a “fight” it takes a bit of the stress, anger, and onus off your shoulders. IBD is a chronic illness, until there’s a cure, we’re in this situation until the day we die…that’s simply too long to be “fighting” anything.
Get ready to be extra proactive with your health. Due to the nature of our IBD and the medications many of us take, we are at greater risk for additional health problems. It’s important to get annual skin checks at the dermatologist. Make sure whether you have good vision or not that you’re seeing an eye doctor. Get cleanings at the dentist at least every six months. If you’re a female, make sure you get your well woman visits. We are greater risk for cervical cancer because many biologics don’t allow our bodies to fight off HPV, this may mean annual Pap smears. We’re also at an increased risk for breast cancer, so don’t delay your mammogram. Get a bone scan every 3-4 years, get one as close to diagnosis as you can so you have a baseline. Your GI may say it’s not necessary, it is. Steroids put us at risk for osteopenia and osteoporosis from an early age, this may mean you need to see a bone health doctor (yes, those exist). Those of us with IBD are at greater risk for pelvic pain, it can be helpful to see a Pelvic Floor Therapist who addresses those unique needs.
Faith can give you added strength and comfort. I understand faith is very individualized and looks different for each of us, but I can tell you as someone who is Greek Orthodox who has always been a faithful and prayerful person that I rely on my faith to guide me through my IBD each and every day. There’s a sense of comfort and hope that comes with believing God is watching over you through the good, the bad, and everywhere in between. When you’re diagnosed or flaring, it can test your faith. Hold on tightly to what you believe and lean on that (however it looks for you). I truly believe God gives his toughest lessons to his greatest teachers. One of my biggest fears as an IBD mom of 3 is that one of my children will get my disease one day. Each night before bed, I always pray with them and say, “keep my babies healthy, safe, and strong.”
My why. My motivation to push through each and every day.
Family planning takes time and effort. Just because you have IBD does not mean you can’t be a biological mom or dad one day. The journey will look a bit different, but this disease does not necessarily need to rob you of the experience if that’s what you want in your life. Communicate these desires with your GI so they can help prep your body for a baby. This can mean starting a prenatal vitamin and folic acid several months before trying. I had a colonoscopy before every pregnancy so that I could be given the ‘green light’ by my GI that we were cleared to try for a baby. When I was pregnant, my care was overseen by my OB, a maternal fetal medicine OB (high risk), and my GI. Unless you have perianal disease, you can have a vaginal birth, but oftentimes this is a discussion left to you and your care team. I personally chose to have 3 scheduled c-sections, because while I don’t have perianal Crohn’s, I didn’t want to risk tearing or causing a fistula to form. I would make the same choice if I had to do it all over again. I also stayed on my biologic through conception, pregnancy, and breastfeeding. These are all personal choices but there are many, many research studies available that show the safety and efficacy of doing so. If you feel you could have internal scarring due to past surgeries that could hinder your fertility, check in with a fertility specialist and have them help you investigate if there could be issues.
Educate yourself on insurance, prior authorizations, specialty pharmacies, and Pharmacy Benefit Managers (PBMS). Unfortunately, with IBD we are forced to do so much behind-the-scenes work to simply receive treatment and medication. You will waste countless hours and endless energy on the phone as these people give you the run around. Nobody ever seems to want to take ownership. Work with your gastroenterologist if you are denied a medication so they can write an appeal letter to insurance and go to bat for you. Stay on top of everything, don’t worry about annoying anybody. You gotta hustle. You gotta be frank and assertive. It’s not about hurting feelings; it’s about making sure people are doing their jobs and ensuring your course of treatment doesn’t get delayed because someone fumbles some paperwork. Our medications are time sensitive. Light a fire under people’s ass if you’re not getting responses you deserve. One of my friends on social media posted this over the weekend, “Managing specialty medications in January is an annual slap in the face to chronically ill people.” It sure is. This week will mark the first time I’ve ever received my injections late in the mail, due to a misstep in my GI office that I had to follow up on for over a week. Be extra proactive at the start of each year. Make sure your GI informs you about all the patient savings programs available, these can help you not only emotionally, but also financially.
You get the final say. No one but you gets to say what you do with your body. If a doctor wants you to do an enema before a scope and you don’t want to, don’t. If you don’t feel comfortable with taking a certain medication and your care provider keeps pushing it, they can’t physically make you pop a pill, take an injection, or receive an infusion. You must do your research, educate yourself every day, feel empowered by all you know and be ready to deal with the ramifications if you go against the grain or determine you want to try something differently. There’s not one “right” way to live with IBD. Be honest with your provider. Don’t say you’re taking a medication and then not take it, that’s not helping anyone or anything. Be a compliant patient, but an educated and empowered one at the same time. Measure all the risks and benefits and what your hopes and dreams are for your present life and for your future. Don’t ever feel like someone else can or should dictate what path your journey takes. Just because one biologic is a magic bullet for one person doesn’t mean it will be for you. You never fail treatments, they fail you. If a provider says “oh, you failed Remicade” … please correct them. “No, Remicade failed me.”
I write this as a 40-year-old mom of three—ages 6, 5, and 2.5 years old, married for almost 8 years, who has been on a biologic since 2008, who was diagnosed at age 21 in 2005. So much has changed for the better regarding the patient experience since that time. My perspective has come a long way. I used to be right where you are, so many are living your current reality. Instagram is the bread and butter for the patient community, that’s where you’ll find the most patients and caregivers transparently sharing. Follow the accounts, send a DM, comment on reels and posts, get engaged. Never hestitate to connect and reach out to me–natalieannhayden. Educate yourself through lived experiences and people who have paved the way for you, rather than Google. You don’t need to recreate the wheel, but this is your experience and your story. You get the final word on how you want each chapter to play out. Know each time you fall you will bounce back and that there’s a massive community of support here to catch you and cheer you on every step of the way as you rise once again.
It’s not surprising there’s stigma that surrounds gut health. Even though “everybody poops” it’s still a bit of a taboo topic, and don’t even get the general population to think about getting the dreaded colonoscopy. This is where the GH Foundation comes into play. Co-Founders, Dacia Heck and Kristin Lynn Grubehave both been personally impacted by gastro health in unique ways and their journeys inspired them to create a non-profit to help break down barriers and start critical, life-saving conversations.
According to the Crohn’s and Colitis Foundation, “patients with IBD appear to be at notably increased risk of colorectal cancer compared to the general population, with one recent study demonstrating a 7% colorectal cancer risk after 30 years of the disease. I had my first colonoscopy at age 21, which confirmed my Crohn’s disease diagnosis. Since 2005, I’ve had more scopes than I can count. I typically get a colonoscopy every year. While it’s not an enjoyable experience, it gives me peace of mind that I’m being proactive about my health. I’ll be getting my next scope in the coming months.
This week on Lights, Camera, Crohn’s we hear from Dacia and Kristin to learn more about their mission, the difference they hope to make, and how you can get involved and feel supported.
The personal connection
Until your gut starts causing health problems, chances are you don’t often think about it. Kristin was diagnosed at age 27 with Serrated Polyposis Syndrome (SPS), which is characterized by the occurrence of multiple polyps throughout the colon and/or rectum that can develop into colorectal cancer (CRC). She discovered this through a colonoscopy.
Kristin Lynn Grube, co-Founder of the GH Foundation
“My diagnosis has taught me to be my own relentless health advocate and speak up for myself. I continue to learn how to cope with SPS’s ongoing effects – emotionally, physically, and spiritually. Some days are easier than other days.”
Dacia lost her healthy, active sister from Stage IV colon cancer. Her sister was diagnosed at age 43 and passed away less than 4 months later.
Dacia Heck, co-founder of the GH Foundation.
“My sister’s diagnosis was a complete shock, as we didn’t have a family history of colorectal cancer and she was well below the screening age of 50 at the time of her diagnosis.”
The inspiration behind the GH Foundation
While Dacia and Kristin have different stories and experiences, they are both passionate about bringing important resources to the general public and are adamant about making gastrointestinal (GI) conversations not only more accessible, but also more mainstream, in order make the path to GI wellness and cancer prevention easier for others.
“We truly believe we can make a difference – one conversation at a time. As Kristin and I discussed where we wanted to focus our time and energy, we kept circling back to the “stigma” associated with GI diseases. That stigma often delays people talking to their family or medical provider about GI-related conditions. We decided the way we could make the biggest impact was to create GH Foundation and focus our mission on breaking that stigma,” said Dacia.
The GH Foundation’s main mission is to destigmatize conversations around GI, or gastro, health issues. 1 in 16 people in America will get CRC and 0 in 16 like talking about it. The GH Foundation encourages everyone to start the conversation. True prevention starts with educating the public on what is normal GI health and when to speak with a medical provider.
Discovering the loopholes in gastro health
As Dacia and Kristin did their research and spoke with different folks from all walks of life, they kept noticing that the conversations around gastro health have to start with a younger audience. Young adults in their late twenties to early forties are not discussing the importance of gastro health with their medical providers.
“We believe this is mostly due to the deeply rooted societal stigma surrounding gastro health. Given the uptick in early age onset (EAO) CRC, it may be too late to prevent a late-stage diagnosis once they qualify for screening. We want to focus on the very beginning and origin of it all – the conversation, whether it is with your family, friends, or network. Take that first step and reach out to someone, ask questions, make that list of symptoms you are experiencing, find out if you have a family history of GI diseases,” said Kristin.
While it’s intimidating, Dacia and Kristin guarantee that the first step will go a long way and may improve your quality of life, or even save your or someone else’s life.
“Our goal is to bridge the gap between the medical terminology and the general public’s knowledge about GI health. We are finding ways to make medical terminology and information accessible to the public. We encourage everyone to listen to their body, and to get the tools to empower them to speak up if they have issues,” said Dacia.
Taking their mission into action
The GH Foundation works to meet people where they are and find different ways to overcome the stigma. For some people, it’s learning about the basics of gastro health through an educational webinar, for others, it is hearing a survivor’s story and becoming inspired to take that first step.
“It’s connecting at a social gathering and finding a space where you can share your day-to-day challenges that you thought you were experiencing alone. Other times, we just want to have fun – we play GI trivia games and entertain each other with the Poo Squad mascots (more on that later in this interview). With all our events, we create an environment where it is safe to ask any questions. There is never TMI; we can talk about poop all day if you like,” said Kristin.
The Three Main Pillars of the GH Foundation’s Advocacy
Gastro Health
Inform and educate the public about the importance of GI health. So far, the GH Foundation has focused on the human GI anatomy, common myths and facts about GI health, ostomy facts, and CRC-related information. You can find out more about resources and past events on the GH Foundation website.
Proactive Advocacy
Proactively provide information and strategies to create positive shifts in how we communicate and influence others. Using what they’ve learn from other organizations, medical providers, patients, and cancer survivors, the GH Foundation has created educational content to then share with the public. Be on the lookout, you may just see their Mascots or Bristol Stool Charts popping up more and more near you!
Impact/Prevention
Educate and inspire people to take action to live a healthier life by fostering an open environment where no topic or question is off limits. Kristin and Dacia lead by example by first sharing something about themselves or asking someone at an event if they would like to share their experiences. They want to help people become as comfortable as possible about talking with their medical providers so they can get the most accurate information about their symptoms and find the best treatment for them.
Making a Difference
Since launching the GH Foundation, Kristin and Dacia have heard from many people that they scheduled their colonoscopy after attending one of their events or receiving one of their resources.
“People have also spoken with family members about their family history to get genetic testing and have said they felt more prepared about what to ask their medical provider at their next visit. People have approached us and expressed a sense of relief that we are creating an environment where they can ask any question, as uncomfortable or personal as it may be. Our mascots have received positive feedback as well. Seeing Sir Colon has taught them what the “colon” looks like,” said Dacia.
Through their initiative “GHF on Campus” they bring gastro health conversations to the forefront of young adult minds through a series of captivating events exclusively tailored to undergraduate students.
“One of our main approaches at the GH Foundation is targeting who we call the “pre-screening community”. Young adults under the age of 45 need to be made aware of common myths and facts on GI health, CRC signs and symptoms to keep watch, and what to ask if CRC symptoms emerge. GHF on Campus has a dual impact: Not only are they learning for themselves, but they can go back home and share what they have learned with family and friends. They can ask about their family history and encourage their family members to act, like scheduling a colonoscopy,” said Kristin.
So far, the GH Foundation has collaborated with the vibrant student communities at the University of Iowa and Northwestern University. Kristin and Dacia are looking to expand campus programming—if you’re reading this and would like to learn more, click here.
Finding humor through the message
You must meet people where they are. One of the ways they are doing that is with a sense of humor.
“We have designed our GHF mascots that bring some fun and lightness to topics that can be very overwhelming and serious,” said Kristin.
The GH Foundation’s mascot crew features: The Poo Squad (from left to right)—Ms. TP, Plungy, Mr. Poo and Sir Colon.
They will show up in different ways. One of the ways is our “Check your Colon” t-shirt with our very own Sir Colon. You can purchase a shirt here.
You can register now for a virtual webinar panel discussion entitled, “Destigmatizing Ostomy 101” taking place Tuesday, February 20th, 2023 at 6:30 pm CT. The discussion will feature Wound Ostomy RNs Jennifer Bart, MSN, RN, CWOCN, and Aimee Sheddan, BSN, RN, CWOCN.
Getting Involved with the GH Foundation
Talk – Initiate the conversation with your family, friends, and colleagues. Educate your loved ones about the risk of neglecting their gastro health. It may seem like a small step but can change the trajectory of life.
Volunteer – Help connect your community to life-saving resources about GI health.
Donate – Your donation directly funds our efforts to distribute educational materials and health guidance to the public.
Engage – Reach out to us! We welcome new ideas on how we can break the stigma.
Follow us on our socials so we continue to reach more and more people.
Connect with the GH Foundation on social media and follow the amazing work they’re doing:
There’s no doubt life with IBD brings on financial, social, and emotional pressure. These constant looming stressors can contribute to flares and unpleasant symptoms. This is where Project Crohn’s comes in. It’s a ministry that supports young adults with Crohn’s disease and ulcerative colitis. The main mission of this 501(c)3 non-profit, which launched in 2022, is to offer free access to mental health counseling, financial planning, and 1-1 mentoring. Anyone with IBD ages 18-30 is invited to apply for support programs that are possible thanks to generous donors.
This week on Light’s, Camera, Crohn’s we hear from the creator of Project Crohn’s and learn more about his mission to make a difference in the IBD community.
How Project Crohn’s came to be
Two weeks after John Christian Kuehnert’s 18th birthday, he started to experience intense gastrointestinal pains.
“It culminated in me passing out and being rushed to the hospital. A surgeon performed an emergency bowel resection, after finding a mass the size of a grapefruit on my intestines,” said John. “My surgeon saved my life, and I spent the next week in the hospital recovering. It took another eight months of slow recovery and meeting with gastroenterologists to discover I had Crohn’s disease.”
For the next 7-8 years, during college and after, John dealt with chronic pain that disrupted almost every aspect of his life. In recent years, he’s reached remission, but it took him a long time to get to where he is today.
“In college I started to see a clear connection between highly stressful situations and flare-ups of my disease. Sometimes, the internal pain would start less than a minute after being put in a stressful situation. Humira and 6MP have been crucial for me reaching remission. However, learning how to manage the primary stressors in my life has had a major impact on me reaching remission. I created Project Crohn’s to help others manage their stress and flare-ups more effectively,” said John.
The debilitating and unpredictable pain from IBD can lead to depression and anxiety and cause college students and young adults to have difficulty managing stressful coursework, while trying to juggle the debt from medical bills and college combined. John is determined to help ensure that no college students with IBD in the US face IBD alone. Project Crohn’s was created to provide the support his younger self could have benefited from.
Putting Mental Health and Financial Literacy in the Spotlight
Mental health is the primary focus of Project Crohn’s. The mind-to-gut connection is strong. This year, Project Crohn’s goal is to raise $100,000 to cover program costs for 25 young adults in the United States who are taking on IBD. Every penny from every dollar donated to Project Crohn’s is given to program recipients. By reducing stress and helping those with IBD learn to navigate life while managing their mental and emotional health, Project Crohn’s focuses on providing counseling and therapy services, while also building other helpful resources.
Here’s a look at the three main pillars of support that Project Crohn’s provides:
Personal mentoring: Ask helpful career-specific questions to help process challenging situations, while putting life’s crossroads in a positive perspective.
Financial advising: 1:1 virtual meetings to discuss your current and future financial situation, explore options, and suggest changes.
Counseling therapy: Promotes positive attitudes and develops effective coping strategies.
How to get involved and apply for assistance
You can apply for support directly on the Project Crohn’s website. It takes about 60 seconds. John wants people in our community to apply ASAP. Everyone who is accepted receives a scholarship, but currently, there are a limited number of scholarships available.
“We’re building a world where every young adult with IBD has full and free access to the secondary health resources they need to reach remission,” said John.
One of the worst aspects of life with IBD (in my opinion) are the side effects of the devil’s tic tacs aka steroids and what they do to your outward appearance. It’s a shock to the system to go from looking malnourished and thin to having a moon face and an insatiable appetite coupled with irritability, the shakes, acne, and insomnia. The weight fluctuations patients endure throughout their journey is a rollercoaster of unexpected twists and turns. Our bodies transform from being thin and sickly to healthy and in remission with weight we’re not used to. While IBD is called an “invisible” illness, our outward appearances take a hit more often than most might think. Those around us often compliment us when we’re “skinny” and stay silent when we’re a normal weight—this is detrimental because there is SO much more than meets the eye.
These photos are three months apart. Pre-diagnosis and on 22 pills a day (60 mg of prednisone).
This week on Lights, Camera, Crohn’s we peel back the layers of complexity regarding body image and self-esteem with IBD. Hear the candid commentary and often heartbreaking reality from 27 patients and caregivers.
The steroid struggle
I always know that after 3 weeks of prednisone my face and looks change dramatically. I went from someone with aspirations to work in TV news, on camera every day, to not letting my mom take pictures of me. I started in the TV business as a producer and once I was off prednisone and well managed, I got promoted to an on-air role, talk about messing with your head. I used to dread being a morning show anchor and returning to the news desk after being out for weeks. Nobody knew I had IBD or what my health struggles were, but they could see something was up. The calls to the newsroom and the comments were mortifying. I used to chew gum all day long while on prednisone to try and curb my appetite. My former GI told me to be careful doing that because the ingredient Sorbitol can cause stomach upset and diarrhea.
Katie: “The moon face with prednisone really did a number on my body image. I was in seventh grade and the kids and teachers would ask me what happened and why my face was like that. My school nurse, after I was out for two weeks because of a flare, came up to me and said, “Glad to see you, but honey, you look like crap.” I was in middle school when this happened, so I always just associated having Crohn’s with being ugly and that has been a long and hard battle. When you’re relapsing and you lose a lot of weight, people tell you that you look great, but when you’re healthy and in remission and you’ve gained weight back, people stop commenting about how good you look.”
Katie’s awful experience as a middle schooler inspired her to go into education. She is now a high school teacher. She says half the reason she went into teaching was to make sure students who have chronic illnesses, or who were absent, had someone who could empathize with them and just try to make sure that the experience never happens to anyone.
Danielle: “Prednisone destroyed my body image. When you look in the mirror and don’t recognize yourself, it’s really an emotional experience. In so many ways, prednisone is amazing, it got me out of my flare, but it turns my face into a swollen balloon. I can’t look at pictures of myself during that time. I am always so self-conscious when I’m on prednisone and feel like everyone can see it. IBD does many things, one of which is controls how you look which is a difficult part of the disease. I just got married and am in a minor flare and I delayed starting budesonide because I didn’t want to risk any moon face.”
Ross: “For me, what’s had the biggest negative impact is the side effects of steroid use, specifically back acne. This developed the first time I took steroids for my Crohn’s six years ago and it still has never gone away. It has had such a negative impact on my body image even though it’s not something anyone would really see. It has stopped me from taking my shirt off during summer months in public, or I’m self-conscious of having my top off at the gym changing room or even around friends or anyone I was dating. It’s something that I would almost always be conscious of these last six years. Even now, when it’s not too active, the scars and pigmentation and redness would stop me from taking my shirt off or make me very self-conscious around other people. I don’t think it will ever go away. It used to get me so down when I was already struggling with flare ups, etc.”
Laura: “Long-term steroid use was the most damaging for me. I was unrecognizable to myself and to others. I never found much support for those body changes and the mental health impact from ‘roids.”
Chanel: “I have struggled much more with weight gain from steroids and other medications than I ever have with the weight loss that is oftentimes common in IBD. Many informational graphics and articles out there about IBD always mention weight loss, but never the issue with weight gain. I’ve always had an unhealthy relationship with my body image because of the constant weight fluctuations due to medication.”
The fluctuations from being thin to gaining weight
I’ll never forget back in 2012 noticing that I was getting thinner and thinner by not eating any differently or increasing my physical activity. I was a morning news anchor at the time in Springfield, IL and I remember weighing myself each morning and seeing 1-2 pounds drop off each day…for weeks. At the time I wasn’t very well informed about IBD and didn’t realize that was a sign I was flaring. I was in my late twenties and gearing up for a trip to the Dominican for a childhood friend’s wedding. To be honest, I was happy, and I liked how my sickly body looked.
Fast forward to 2015, I was engaged and had bowel resection surgery. I had never weighed more than 127 pounds in my life and had dropped to the teens when I was unwell. My first post-op appointment with a new GI I gained seven pounds, and I wasn’t happy about it. My GI said, “this is what happens when you’re healthy and finally absorbing nutrients.” When you’re planning a wedding, healthy weight gain hits a bit differently.
Ever since then, I’ve been in remission and I’m so grateful for that, but my weight has been something I think about now—not only because of my IBD being in check, but after having three kids. My self-confidence and how I feel about my reflection in the mirror has taken a blow as the years have gone on.
Madison: “ When I was in a severe flare in 2020 after being diagnosed, I dropped 20 pounds unintentionally. I was normally around 127 pounds and during my worst flare I was down to 107 pounds. It was absolutely horrifying. I was devastated. I remember going to American Eagle to buy shorts in a 00 size because none of my clothes fit me. I felt sick and looked sick, which made everything 10 times worse. Not being able to eat food and constantly running to the bathroom in pain led me to be malnourished. I remember being at my GI appointment when we were trying to figure out a treatment plan and my nurse said after taking my blood pressure, “Madison are you eating?” I started to cry to her and said “everything hurts me. I can’t eat.”
While Madison was growing up, she always thought being thin was attractive. After being so severely sick, she now personally affiliates being thin with being sick.
“Being on prednisone to help was both a blessing and a curse as it helped get my flare under control, but also led to unwanted weight gain in my face, which makes me super self-conscious, especially in pictures. I know that side effects are temporary, but it can really hurt someone’s self-esteem.”
Fast forward to now—three years later, Madison is on a treatment plan that works for her and she’s proud of her body. She says she looks forward to being weighed at the doctor and at infusions appointments just to see a healthy weight.
“Weight and IBD is very fluid, and I constantly remind myself to give my body grace. When you’re losing weight on top of being sick, it can be detrimental to your mental health. You look in the mirror and see someone you don’t recognize.”
Ashley: “I’ve kept three different sized sets of clothes with my ulcerative colitis. My normal size, a smaller size for when I’m extremely sick, and a larger size for when I’m on prednisone. I’ve always been super self-conscious about my body size because a lot of time it’s out of my control. I also feel self-conscious when I’m so sick and lose weight and people comment about how good I look. I’ve felt guilty because I didn’t work out to “earn” that body. Then, I’ve felt frustrated because it made me mad that to look a certain way that got me compliments, I had to be extremely sick and unhealthy. Now, I have a permanent ileostomy. I am more confident in my body than I have ever been. I think that’s mainly because I’m so healthy now and I have more control over my body and life.”
Danielle: “So many things come to mind. I was 14 when I was diagnosed, and while I was sick prior to being diagnosed, I was judged for being too thin and accused of being anorexic or bulimic. Then upon diagnosis, I gained 30 pounds in 2 weeks from prednisone. At 14 years old, I was swollen and chubby and self-conscious. Since being diagnosed, I haven’t struggled with being “too thin” again, but with weight gain from prednisone and other medications. I’ve been told far too many times that “anyone can lose weight by eating right and exercising” but it’s not that easy with a chronic condition. Some mornings, I’m so fatigued and achy, I can’t get out of bed, and it takes my energy to get ready for work. My diet is extremely limited as I had a bowel resection and I’m allergic to dairy products. So, I live off protein and carbs which are not ideal for weight loss or even maintenance.”
Amber: “I have been on Stelara and have reached remission, but the thing people don’t talk about is after being in constant flares, you have no idea how much weight you might gain because of not flaring. It is a great thing and I’m so happy to be in remission, but now I must learn how to work on the nutrition aspect of it all. To be honest, all these years of being sick, I never had to worry about weight gain. I had to worry how much weight loss affected me and most people do more posting about that. Not the up sides of remission, but also what we do now to get onto a new lifestyle change. We have to learn a whole new way of nourishing our bodies.”
Stephanie: “I have found that when I’m flaring at my worst, I lose weight from not being able to eat and my body not retaining anything that I eat. I get so many compliments about the weight loss, but it breaks my heart because I might look good to others, but I’m at my sickest.”
Jennifer: “It’s crazy to know how jarring it can be to see your weight fluctuate so much so fast. Diagnosed with UC about a year ago and went through a huge flare, lost like 35 pounds. I hated looking at my body because I was under 100 pounds as an adult woman. Fast forward to now and I’m back to my “normal” weight, but still have issues with how my body looks as weight came back. It’s softer and less toned than before. I’m sure it’ll get back to the place where I was, but what if it doesn’t? Our bodies can go through so much and I’m thankful for its resilience, but the mental toll the fluctuations can be a lot to try and manage and reflect on as we navigate this journey.”
Louise: “I’m newly diagnosed and dealing with my second flare. I worry about the impact it has on me mentally because I am happier with my body when I’m very ill, and unhappy with it when I’m on steroids and feeling better. It can’t be good for us. Negative comments (from my mother!) when my face gets chubby on steroids and compliments from people when I’m not eating and very unwell are difficult to process. I get angry when they compliment me on how well I look just because I’m skinny, because I feel like it minimizes how bad things are and how unwell I am. I also like it because I like being slimmer. It is so messed up! When I get my appetite back, I try to fight the cravings and then binge and then feel awful for it. I have never been this way pre-IBD. I was always fit and healthy and in control of my relationship with food. There’s also a weird part of me that wants to look thinner because it’s an invisible illness, I want people to see how unwell I’ve been, so they don’t think I’m lying.”
Louise said it felt good to let it all out and that she’s never said any of this. Coping with big health issues comes first, but this annoys her during quiet moments. Her sentiments ring true for so many of us.
Myisha: “I struggle with body image a lot. I’m naturally 127 pounds, but with prednisone I got to 210 pounds and no longer recognized the person I was staring at in the mirror. I cried for weeks unable to recognize myself. I still cry now and I’m down to 139. My clothes still don’t fit, and I still have clothes that are a size 12-14 because I know that prednisone is an ongoing possibility and that I might get back to that size if I have a bad flare.”
Jessie: “The constant weight fluctuations have always made me self-conscious. It messes with your head too because when you lose weight from a flare, people say “oh my gosh you’re so skinny you look great, what did you do?”…but then when you gain weight (from medications not from becoming healthier) no one comments and you’re just self-conscious about it.”
Celia: “Before I was diagnosed, I was happy with losing weight. I was 13 and hated my body. I remember I had my diagnostic colonoscopy and the day after I took a picture of my stomach, it was as flat as it’s ever been. I felt good about how I looked, but keep in mind I was barely 100 pounds and 5’5’. I felt awful and I was tired all the time. As I started Humira and was gaining weight, I missed my old (very unhealthy) body. I constantly am reminded by loved ones that this weight gain is good. I just returned to the weight I was pre-symptoms almost 4 years later and I feel good overall! I still struggle with how I look and have developed a connection between food, weight gain and loss, and pain from Crohn’s that I still need to work on, but I’m doing my best. As a 17-year-old, we all tend to struggle with how we look, and I need to remember all my body has been through and done for me.”
Kindra: “Along with IBD, I also have Primary sclerosing cholangitis (PSC), so when I flare or I’m unwell, I lose weight and I can’t do anything to keep it on. I will eat all day long and you can count my ribs and see all my chest bones sticking out. I get compliments from people who don’t know me well about how thin I am/how they wished they could eat like me, and I never quite know what to say. When I am healthy and can gain weight and I have to shop for bigger clothes, I get a complex thanks to years of the American media diet culture.”
Leah: “I feel like weight gain after a flare has been challenging. All the body yo-yo and knowing the weight coming back on is so healthy and just what your body needs, but I believe it can be tough at times.”
Kelly: “I’m scared to go below a certain weight in fears of having a flare, but on the backside, I feel unattractive for my partner and fight with self-image.”
Bloating is a bitch
Even in remission, bloating is one of my main IBD symptoms. I often tell my husband, friends, and family, “you can physically see my pain right now. Feel how hard my stomach is. I look like I’m 5 months pregnant.” The reaction is always one of shock, raised eyebrows, and a bit of sympathy. Because of this I usually wear elastic waistbands or dresses. You’ll rarely ever see me wearing pants or shorts with a button. When I used to work in corporate America, my Crohn’s was out of control, and I would repeatedly have to unbutton my pants in the board room and lean back in my chair during meetings with co-workers. It was humiliating, but I always tried to make light of it. It’s amazing how we can wake up with a flat stomach and have a distended belly that truly looks like there’s a pregnancy going on by dinner.
Courtney: “Being emaciated from poor nutrient absorption, but bloated from gas and inflammation at the same time can lead to a confusing relationship with food. I don’t think it’s quite the same psychology as an eating disorder, but when eating causes you pain, or makes you literally change your pant size pre and post meal, it can be easy to want to postpone meals if you have plans, eat little in social situations, and can create an unhealthy relationship with food. Food is not the enemy, it’s a necessity—it’s all about finding the proper treatment and lifestyle to manage your IBD.”
Courtney adds that living with an ostomy is a huge adjustment with major impacts on how you perceive your body and appearance.
“My first ostomy was such a shock to the system. It feels almost surreal to see a piece of your intestine outside your body. If you have no control over output timing, which can leave you feeling broken and helpless during bag changes. It wasn’t until my second ostomy that I was able to recognize and be grateful for the benefits it affords me. I now live a healthy, active, pain-free life and couldn’t be more grateful.”
Patti: “My everyday bloated belly is like a giant dark cloud that blankets my self-image. I really try to embrace the rest of my healthy body and be grateful that I’m able to leave the house and do some functional activities and can sometimes hide my ugly belly if I’m completely emptied out, but my typical mantra is that I look disgusting because of my belly. I know this is negative thinking and messes with my mental health, but after dealing with Crohn’s for the past 51 years, I’m not sure I can ever stop that thinking.”
Alyson: “Bloat makes a girl feel AWFUL. Add in intestinal dysmotility with Crohn’s and I literally start the week at a size 8 and end in a size 10. Then we just switch to those wide leg pants with the elastic. Prior to my diagnosis, I never had to unbutton pants before or after eating. Now, it’s the first move the second we get in the car to leave because, ouch. It really makes you feel cute.”
Alannah: “For me weight fluctuation is my biggest struggle. One week I’m slim with minimal bloating then the next I’m bigger and bloating more. My partner has always struggled with confidence with his stoma due to weight gain even though he’s perfect as he is. He will never go without a top off ever.”
Naima: “Bloating is the worst. I am getting married in three weeks and I’m so worried about being bloated or gassy or having a minor flare. It’s hard to feel pretty when you can’t control how your body is feeling. Some days I feel strong and look lean—other times I hate how I look.”
Post surgery swelling, scars, and ostomies
Sabrina: “I’ve struggled with my body image after being diagnosed and going through three surgeries in a matter of two years. Seeing myself with a bag was hard and the changes that came with post-surgery swelling, scars, and fluid buildup. Body image and my new body will always be something I struggle being comfortable with.”
Mark: “I’ve had Crohn’s for more than 37 years and in that time multiple operations. I have many scars, but they are a part of my life and badges of honor in my constant battle with this disease. My IBD has thrown everything at me including short bowel syndrome, liver failure, osteoporosis, broken vertebrae, septicemia, lymphoma, coma, hepatic encephalopathy, and the list keeps growing. When I see my scars, it reminds me to keep fighting. Crohn’s will not win or stop me from living a full life. If someone asks me about them, I don’t hide. I tell them it’s battle scars. Body image is important to me, and it reflects how strong I am, and no one can take that away. I’ve worked all my life and traveled the world. This year (one year after coming out of a coma) I’ve been on a Pole-to-Pole journey.”
Martin says body image is both how you feel and how you look to others, as well as yourself in the mirror. In his early days post-diagnosis, as a young adult starting a career, he felt anxious and angry, but looked normal.
“Post surgery and with time came the additional stress of looking and behaving differently and additional comorbidities that accompany IBD. This included dental and bone issues. I was hugely lucky to have found my lifetime soul mate before my Crohn’s became active, illness and surgery haven’t changed anything for us. I have been various shades of ill with Crohn’s all my adult life and it hasn’t helped self-love, including self-image on any level. I survived and thrived because of my family’s support and very little real-world commentary on my body from others, although I sometimes preempt this by joking about looking like Homer Simpson these days. I now face further life changing surgery and I worry about the impact of my quality of life on my family. I no longer care about how others see me.”
From a caregiver perspective
Cindy: “My daughter is so deeply at war with her body, and I know thanks to chronic illness it’s so much more complex than simple teenage-girl-in-the-age-of-Insta feelings of “I don’t like my shoulders” or “I should watch my calories” (both of which are things she thinks). It is rooted in a real fear of and discomfort with her body and what it puts her through. She has so many years to live in her body and I wish more than anything I could give her peace with it…the same relative peace and confidence I have always had with my body. I just can’t relate.”
Keyla and her teenage son have IBD: “The struggle is real. Not only do we have a condition that there is stigma about, then we have constant weight issues, scars, bruising, and so much more that leaves us with body image issues. Our bodies have been through enough and done so much for us. Let’s care for it, nourish it, nurture it, and be kind to it.”
Taking on body image one day at a time
Focus on strength and resilience. Recognize your ability to navigate through challenges and adapt to changing circumstances. Once you’ve been through the flare and recovery process once, you know what to expect. Find comfort in knowing you’ve done this before and know most of the unpleasant side effects are temporary.
Seek support. Surround yourself with a strong support system of family, friends, or support groups who understand and empathize with your experiences. Sharing your thoughts, concerns, and emotions with others who have similar experiences (hello online IBD fam!) can help you feel heard and supported. Surround yourself with people and media that promote positive body image and self-acceptance. Be selective in the content you consume, ensuring it supports a healthy perspective and challenges unrealistic beauty standards.
Educate yourself. Learn more about IBD and its impact on the body. Understanding the reasons behind changes in your body and recognizing that they are a result of the disease, not a reflection of your worth, can assist in developing a more positive body image.
Practice self-care. Engage in activities that promote self-care and boost your self-confidence. This can include hobbies, exercise, meditation, or anything that brings you joy and helps you connect with your body in a positive way. Oftentimes our fatigue can hinder what type of daily activity we feel capable of, take everything in stride and don’t overdo. Start with a 10-minute walk and build up from there. The fresh air and simple movement will do wonders.
Focus on what your body can do. Shift the focus from how your body looks to what it can do. Appreciate the functionality of your body, such as its ability to heal, fight illness, and carry you through daily activities.
Reece was diagnosed with Crohn’s disease in 2014. Since then, he’s endured countless surgeries, flares, and setbacks, but chooses to focus on the beauty his life still bestows despite the challenges.
“I’m a shell of my former self, but I am okay with it. I’m grateful for my life. I have people who love me and care for me. When I look in the mirror, I see a fighter. All of the marks and scars are just evidence of my battles. It was not easy to get here, but here I am. I will never be the person I was before Crohn’s, but my disease has taught me so much about myself and life.”
Communicate with your healthcare team. Discuss any concerns or insecurities related to body image with your healthcare team. They can provide guidance and offer resources to support you in addressing these concerns. Therapy may help you cope with these struggles and provide helpful tools for living with the uncertainties and challenges.
Remember, your worth is not defined by the physical changes caused by IBD. Surround yourself with positivity, celebrate your strengths, and prioritize self-care to foster a positive body image and improve overall well-being. Most importantly, after reading this I hope you feel seen and realize that your struggles and insecurities are not unique to you.
There’s not a magic bullet for helping us cope with these insecurities, I know it can be a daily challenge. I truly believe we are our own toughest critics. If family members or friends compliment you when you’re unintentionally thin, respond by saying it’s because your IBD is out of whack. Speak up and inform those who have no idea what’s going on in your mind, with your body, when you look in the mirror, get on a scale, or have to think about how your outfit choice could impact your physical symptoms every day…it’s a lot. You are beautiful. You are strong. You are capable. There’s no one like you in the world. Your body, no matter the size, is working overtime with IBD, please take a moment to show yourself and it, some love.
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