This article is sponsored by Health Beacon. All thoughts and opinions shared are my own.
When I think back about the scariest moments I’ve experienced since my Crohn’s disease diagnosis more than 17 years ago, doing self-injections and the loading dose process tops the list. To go from being someone who didn’t rely on a biologic medication to function and treat my chronic illness, to mustering up the strength to inflict pain on myself, it took getting used to, to say the least.
I’ll never forget what it was like when I was first told I would need to choose between a self-injection and an infusion while lying in a hospital bed with a hardcore flare. It felt like trying to pick the lesser of two evils at the time. I chose self-injection for privacy reasons because at the time I was a television news anchor and hadn’t shared that I had inflammatory bowel disease (IBD) publicly. I also have terrible veins and the thought of having to get IVs and be hooked up for hours to a medication seemed less convenient and like more of a reminder that I was unwell. During that hospital visit it took 8 tries to start my IV, so the trauma of that helped guide my choice to do injections instead.
Going the self-injection route
When I started my biologic in 2008, there were only two medications on the market to manage and treat Crohn’s disease – Humira and Remicade. The injection (I was prescribed) at the time had a reputation for being painful and the loading dose involved four injections, back-to-back in one sitting. When my mom and I walked into my gastroenterologist’s office so the nurse could instruct me on how to give myself shots, I was shaking like a leaf. In the moment I wasn’t sure how I was going to muster up the strength not knowing how it would feel. My palms felt sweaty holding the foreign injector pen in my hand. I wasn’t sure how badly it was going to hurt. I was fearful of the side effects and what the heavy-duty medication was going to make me feel like. I wanted the nurse to do the first injection for me, and she wouldn’t. In the moment that made me upset, but now I am so grateful she put the onus and trust on me. I’ve never had anyone do my injections but myself.
I pressed the button and instantly felt the liquid fire pain shoot into my leg. I couldn’t believe I was expected to do that three more times. But I did. When the appointment was over, my mom and I hugged in the hallway. I felt like I had been through battle. It was terrible. Knowing that I had to do another two injections in two weeks loomed over me. Unfortunately, my initial loading dose made me very sick. As my body got acclimated to the medication, I felt weak and could barely walk up 13 stairs to my apartment. I had to miss work and social functions as my body got used to medicine.
Going through another round of loading doses
Fast forward to 2015. I had bowel resection surgery that involved the removal of 18 inches of my small intestine, appendix, and Meckel’s diverticulum. My care team had me go off my medication for three months—prior to surgery and after. Because of that, I had to do another loading dose and re-start the process. Even though I was already more than 8 years into doing the same injection, when my GI told me I would need to do another loading dose, my mind immediately raced back to 2008 and what I went through. I was so emotional I had to call into work sick that day. Luckily, this time around was a lot less scary, and I had more confidence in the process and knew exactly what to expect. I didn’t have any side effects after this loading dose, and I was back on track to my normal injection routine.
The shift to “pain-free” injections
The first couple years I did my injection, I would count down the days until the next one was due with dread and worry. I spent more than a decade on the painful version of the medication. In 2018, the formula for the medication was changed for patients in the United States, taking out the sting and making the gauge of the needle smaller. The loading dose now “only” involves two injections versus the four.
The “pain-free” version of the medication has completely changed my patient experience for the better. I no longer dread my shot. The process feels simple and nearly effortless. Even though I’ve been lucky to be afforded the opportunity and access to this version of the medication, I can still remember how it used to feel. The anxiety and emotions the injection would cause, and what I dealt with for 10 years of my life every other Monday.
Self-injection through pregnancy and motherhood
I am an IBD mom with three young children. Ages 5, 3, and 15 months. When I was first pregnant in 2016, it took a lot of guts and felt like an emotional rollercoaster injecting a biologic knowing there was a life growing inside of me. As the weeks turned to months and my belly got bigger and bigger it became more emotional feeling kicks and movement in my stomach while I was pressing the button to give myself the shot. Until my son was 1.5 years old, he witnessed how upset the injection would make me at times and would hug me and watch with empathetic eyes from a very young age.
When I tried the pain-free injection in 2018, I shot a video the first time I experienced it. This time around, I was pregnant with my second child. You can watch the emotional video here. As I express in the video, it was lifechanging to know that throughout future pregnancies and through motherhood, my children wouldn’t ever see their mom crying or scared while doing injections anymore. Now, when I do my shots, I have a big smile on my face and my children see their mom through a much different lens.
Keeping your eye on the prize
Whether you are gearing up for your loading dose or a veteran self-injector, it’s an experience that can be hard to put into words unless it’s your reality. It’s normal to grieve and be upset about your situation. Try to breathe. Go to your happy place. Get a focal point to focus on and know that you are doing all you can to help keep your disease under control and live the fullest life possible. Short term pain, long term gain in every sense of the word. Being scared no matter where you are in your patient journey is understandable, but like all pain and fearful experiences, they too shall pass.
Click here to learn more tips about self-injecting.
The article discusses how teenage girls and young women post upsetting footage and commentary on social media about their “invisible illnesses” to gain attention and “likes” and bashes “Spoonies” for giving people a behind-the-scenes look at the reality of their chronic condition. Hold UP. As someone who has lived with Crohn’s disease for more than 17 years, who is patient advocate, and works tirelessly to empower and educate others about life with inflammatory bowel disease, by candidly sharing on social media and through my blog, I find it incredibly disheartening and worrisome that a story of this nature is in circulation.
The ableist mentally shines bright
How disappointing that a “news outlet” takes the time to belittle people who are battling debilitating and unpredictable illnesses and sharing their struggles not for attention, but for support and camaraderie. Unless you have a chronic illness, you don’t have the slightest clue about what it’s like to wake up each day and not know what the next hour is going to bring. Unless you have a chronic illness, you can’t begin to imagine the stress, worry, and anxiety that comes along with diseases that limit us and often set us up for failure when it comes to trying to keep up with the rest of society. Unless you have a chronic illness, you have no idea how isolating and overwhelming it can be to be young and unhealthy, different than your peers, while fearing what your future is going to hold. Unless you have a chronic illness, you can’t fathom what it’s like to juggle multiple specialists, appointments, medications, insurance, specialty pharmacies, and screening tests… just to survive. It’s imperative those with invisible chronic illnesses share their stories and show others that what they are going through.
Articles like this are extremely damaging and triggering to those who suffer in silence, the newly diagnosed, and furthers the fear of what could happen if you decide to come out of the “proverbial closet” publicly and share about your health struggles.
Patient communities NEED you to share
When I was diagnosed with Crohn’s disease at age 21 in July 2005, Facebook hadn’t even been out for a year. No one was going on social media and sharing they had a disease. I felt like I was on a desert island, all alone with a diagnosis that flipped my world as I knew it upside down. As an aspiring TV journalist, two months out of college graduation, I had no idea how I was going to function and follow my dreams. Nobody wants a chronic illness diagnosis. Nobody asks for this. Nobody wants to suffer so they can have “likes” and attention on social media, trust me. Never in my life have I seen people encouraging others to lie to their doctors about getting the diagnosis that they want.
With diseases like inflammatory bowel disease, this is not something you can fake. A diagnosis is received after scopes, scans, and labs, reflect that this is in fact the case. You don’t just walk into a doctor’s office and say you aren’t feeling well and exaggerate abdominal pain. It’s not a competition of who is “sickest,” people are sharing what they are going through for a variety of reasons. When someone is in a hospital bed, they may share for support, advice, and prayers. When someone is gearing up for a colonoscopy, they may share so they can get tips for easing the prep or coping with the worry of the unknown. When someone is pregnant and flaring, they may share to hear from other IBD moms who have been there before. The examples are endless. Patients are not haphazardly concocting up social media content and lies about their medical struggles to see who is going to get more attention. This is not “attention” people want.
By claiming we share for attention it goes against everything we stand for and belittles the lifechanging work patient advocates are doing to support and comfort their peers. As a patient advocate myself, I do so much behind the scenes “work” to guide those in the IBD community and help them every step of the way. It’s about helping others from the bottom of your heart and being the voice you needed to hear upon diagnosis and through milestones in life. It’s genuinely finding connections with those who are not just strangers on the internet, but quickly become your closest confidantes and resources. Since coming out and sharing I had Crohn’s disease in 2015, I went from having family and friends who didn’t have Crohn’s offering me support, to an army of thousands of members in the IBD family I can rely on who “get it” and are available right at my fingertips. THIS IS PRICELESS.
Sorry not sorry for the “upsetting content”
The article states “thousands of teens are banding together on social media as part of the movement” to support the Spoon theory. Imagine what it’s like to be living this reality versus just having to view a post on social media. Can you pause and put yourself in the hospital bed or on the operating table or on the couch about to do a painful injection and think about the pain and suffering those with chronic illness are forced to endure just to survive like the rest of society? It’s privileged to lash out against those who are doing all they can to show others what their lives consist of rather than bottling everything up—THAT is damaging, THAT is not healthy. Must be nice to have the privilege to keep scrolling and living your healthy life and only see a few seconds on your screen.
Should chronic illness patients be smiling as they’re suffering in hospital beds? Is it not normal to be crying when you’re worried and scared and can’t help but get emotional with all that’s on your shoulders? No one is complaining. It’s the stark reality. It’s heavy. It’s no surprise that more than 30% of people with IBD also deal with mental health issues and anxiety because life with the disease is so heavy.
It’s not about the money
Can we all pause and laugh about the fact the article claims those with chronic illness post on social media for the money. Hilarious. Get a grip. Even as a well-established and trusted “health influencer” within the IBD community, when companies reach out to me, it’s often to try products, not get a paycheck. When I am paid for my advocacy work it’s working diligently like your job as a journalist to write articles, create social media copy, and educate others about what my life is like with Crohn’s. I get compensated like any other human for using my skills and expertise, along with my precious time and energy, to sit on advisory boards and offer input and perspective for marketing and awareness campaigns. My job is not to be a patient, my “job” is to take what I’ve learned and use it to make a difference and help others.
This is not for show. Digging up past medical trauma and flare ups is not enjoyable. If businesses and pharmaceutical companies want to collaborate with chronic illness patients, they should be paying us for our invaluable intel and understanding. The article states patients have adopted “victim mentalities” …wow…and “communities of grievances” … when medical professionals are out of line or treat patients without respect, you better believe your ass they should be called out. How is change going to happen and life for chronic illness patients going to improve if we sit quietly. Be loud, my friends. Don’t allow articles like this to stop you from sharing. We NEED your valid experiences. You deserve to be heard. You matter. Even though the rest of society may be rolling their eyes or trying to stop us, they won’t, and they can’t.
I don’t want to go back to 2005 when I was all alone in my struggles with Crohn’s disease. I want to stay in 2022 when I can post whatever I want, whenever I want about my trials and triumphs as a woman, mother, and wife with Crohn’s disease and not fear judgement. Sometimes I’m thriving, sometimes I’m struggling. It’s vital that those with chronic illness continue to honestly share their stories on social media to provide clarity, education, and connection to those who relate wholeheartedly.
So, dear Emma, from one journalist to another, please start sharing stories that matter—don’t go after stories for attention or follow the adage, “it bleeds, it leads.” Seems like you are the one going after the likes. You should know better.
Sign the Petition
There has been outrage in the chronic illness community about this article—many feeling triggered and upset by the accusations and the claims made about Spoonies. An online petition has been created to have this Daily Mail article taken down—you can sign the petition by clicking here.
They call themselves “Propellers.” They’re a team of volunteers, made up of IBD patients and caregivers who created a non-profit called Propel a Cure for Crohn’s in 2016. They are laser focused on preventing and curing Crohn’s disease and, on the heels of their first research project funded at Stanford University in the world-renowned lab of Professor Mark Davis, they’re now determined to make a meaningful difference through their Roadmap to a Cure for Crohn’s effort. During this month (September 2022), they’re aiming to raise $50,000 to help get their latest project off the ground and to provide a solid foundation to bring their global team together.
This is a grassroots effort fueled by patient and parent volunteers. Patients and caregivers have an opportunity right now to directly influence a brighter future without Crohn’s! This is a peer-to-peer fundraiser—it’s not just about the monetary donations, but also sharing the message with others far and wide. Not only are international researchers involved, there are people all over the globe participating. In addition to the English-language campaign, there are also Swedish and Portuguese online campaigns running as well.
The Patient/Caregiver Perspective
Ildiko Mehes recalls what it was like when her 9-year-old daughter received her lifechanging Crohn’s disease diagnosis in 2017.
“As a parent, a serious diagnosis like Crohn’s is a huge shock, and it’s absolutely devastating and heartbreaking. Even during periods of remission, we are always on high alert and waiting for the other shoe to drop. At diagnosis, my whole world stopped, literally and figuratively. As irrational as it sounds, as a parent, you wish the rest of the world stopped with you to help you address the crisis. You wish that all of modern medicine rolled up their sleeves and urgently worked together to precisely diagnose the problem and bring her back to long-term health.”
As a caregiver, Ildiko has a unique sense of urgency and determination. She feels we need and can do better for IBD patients.
“When an otherwise healthy child, with no prior medical history, suddenly presents with IBD symptoms during a routine winter virus, you ask yourself “what caused this switch to be flipped?” Not having any answers to the underlying mechanism of disease onset or perpetuation, having a trial-and-error approach to disease management, and being forced to consider serious immunosuppressive medications with modest clinical trial benefits feels unacceptable as a parent. This is what drives me.”
As a pharmaceutical executive with more than 20 years of experience, Ildiko uses that unique skill set to go after complex and difficult goals with Propel a Cure and feels a deep sense of obligation to help our community.
“While there is excellent research ongoing in IBD, it happens in silos. It lacks global coordination and a plan. We don’t yet understand many basic things about Crohn’s. We are all just hoping for a “eureka moment” that hasn’t come over the last 100 years. We are continuously enticed with headlines of a “promising” new pathway or new drug candidate, usually in mice. And then that great idea sits there, with no progress made, a decade or more later. I know we can do better,” she said.
Natalie Muccioli Emery was diagnosed with Crohn’s disease in 2011 and she’s also a Propel a Cure Board member. She started dealing with abdominal issues 26 years ago. Being a veteran patient has provided her with perspective about how far treating and managing IBD has come and how far we still have to go.
“Propel a Cure was the first organization whose mission resonated with me. I appreciate their mission to cure Crohn’s Disease, but I even more appreciate the fact that they have laid out a plan as to what the areas of knowns and remaining unknowns are in their Roadmap to a Cure for Crohn’s project. Complex issues like Crohn’s Disease will take a collaborative and systematic approach to address, and this cause has captured that,” said Natalie.
Not only is Natalie an IBD mom, she’s also an IBD aunt!
“I believe that as an adult with IBD, the way I embody the role of a “Crohn’s Warrior” is not for myself it is for the next generation. I have “been there and done all that” with Crohn’s. But just because I did it with Crohn’s doesn’t mean the next generation should have to. I grow increasingly concerned when I see the rising rates of IBDs like Crohn’s in younger people. I believe the rising rates of Crohn’s should create a sense of urgency and a desire for a better future.”
Putting the puzzle pieces together
The Roadmap to a Cure is an ambitious project but one that is needed to drive real progress toward cures and prevention of IBDs, not just talk about “cures” in some very distant future. Ildiko says the brilliant clinicians and scientists she has gotten to know all tell her that getting to a cure will take a grassroots effort, global collaboration, and involvement of patients and caregivers.
“We at Propel a Cure are deeply committed to doing exactly that. The first step in our project is to systematize what we already know about Crohn’s today. We know a great deal, thanks to research. But when we are talking about complex fields like genetics, epigenetics, immunology, microbiology, epidemiology, multi-omics platforms and artificial intelligence, etc. there is no way any one person or group can know everything. We need a large global group of dedicated and brilliant experts to put all the puzzle pieces we already have on one table so we can begin to then put the pieces together,” she explained.
Grabbing the attention of medical professionals and researchers
Propel a Cure grabbed the attention of Dr. Bram Verstockt, MD, PhD, Department of Gastroenterology and Hepatology, University Hospitals Leuven, on social media.
“I truly like the concept of joined forces across various stakeholders, including patients and caregivers. As clinicians and scientists, we can have ideas about how to move forward based on experiences and interactions with patients on a daily basis. However, the next step really is to involve patients actively in many of these projects, as is currently the case with Propel a Cure,” said Dr. Verstockt.
The “Roadmap to a Cure” aims to bring together expertise across many different fields and niches in IBD.
“Over the past decades, a lot of scientific evidence has been generated in multiple domains of Crohn’s disease, so now it’s time to bring all that evidence together and truly connect the dots. Only by doing so, one might unravel knowns and unknowns and highlight where the remaining key gaps are, and we can define the priorities and strategies of how to fill these gaps to significantly advance the field, to improve the lives of patients with Crohn’s disease,” said Dr. Verstockt.
Where the roadmap can take us
After the initial step of putting together the state of the art, the next step is identifying gaps in our knowledge: what puzzle pieces do we still need? The third step is to develop the plan, or the Research Roadmap, to get from what we know today to developing cures and prevention strategies.
“We truly believe in a future where we can prevent and cure Crohn’s and eliminate so much patient and family suffering,” said Ildiko.
The reason this requires a grassroots effort and all of us patients and caregivers to fund it, is that otherwise the current system largely doesn’t provide incentives for new ideas or cures or global collaborative efforts of this magnitude. A recent paper discusses how the same ideas have been funded for decades, with limited progress and that we urgently need new directions.
Ildiko believes the current research incentive model is broken. “If we want true progress and cures for Crohn’s and other IBDs, we need a new collaborative model among IBD foundations/nonprofits, patients, caregivers, researchers, clinicians, and others. I believe this can become a model for other chronic and immune-mediated diseases.”
Click here to watch a video where Ildiko explains the Roadmap to a Cure project further.
Hopes for the future
“I would really like to see more key opinion leaders be brave about acknowledging the risks and limitations of current therapies, avoid putting lipstick on a pig when discussing some newer drug candidates in trials with lackluster results and the same mechanisms, dispense with biased headlines like “safe and effective” when the data is much more nuanced or unclear, and openness to “outside-the-box” ideas, like microbiome manipulation, including via diet, infectious triggers like Epstein-Barr virus in Multiple Sclerosis, vagus nerve stimulation, Fecal Microbiota Transplant (FMT), hyperbaric oxygen, etc. and also adopt routine monitoring via intestinal ultrasound for many patients,” said Ildiko.
As of now (September 12, 2022)—more than $26,609 has been raised!
“I have been overwhelmed by the response so far, as has the entire Propel team. People are really connecting with our mission. We are getting donations from so many states and countries! We have received more messages of profound thanks and hope than I can recount. This fuels us so much,” said Ildiko.
Natalie feels a wide range of emotions each time she sees a donation come in or the campaign shared across social media.
“I go from feeling hopeful, to introspective, to sad. I truly wish we did not have to do this campaign and that in 2022 we knew what the underlying cause(s) of Crohn’s are, and that safe, effective, reliable treatments were available for all Crohn’s patients. But here we are. Crohn’s is still very much part of the lives of patients and caregivers, and we need to take action to change that. I am so grateful for the outpouring of support we have received so far, but there is more work to be done!”
Propel a Cure has virtually no overhead fees or salaries, so every single dollar donated to Roadmap for a Cure goes to research.
“We are all volunteers who work out of our homes. The donations will be put towards collaborative research teams worldwide. Each team will lead a contributing area to the development of Crohn’s Disease (environment, microbiome, immune system etc.) and highlight where the gaps in knowledge remain,” said Natalie.
“The ultimate dream obviously would be to cure and if not, to significantly improve the quality of life for millions of patients worldwide,” said Dr. Verstockt.
Click here to donate to this incredible cause or to join their team.
Life with IBD impacts our careers in many ways. Our disease can often dictate what path our future takes. As students, teachers, and families gear up for another school year, I thought it would be interesting to hear from educators who have IBD about what it’s like to lead a classroom while living with an unpredictable chronic illness. This week on Lights, Camera, Crohn’s hear the inspiring stories and perspectives of four unsung heroes who don’t allow their IBD to rob them of their career aspirations.
Sarah Rife has been a teacher for seven years, she’s also an IBD mom and an ostomate. She’s currently teaching eighth grade math in the Chicagoland area, but previously taught high school Geometry and Algebra.
“I have taught through many highs and lows Crohn’s wise. For the first 5 years, there wasn’t a single year that I didn’t use every single sick day I had (and then some unpaid days). I believe four out of five of those first years, I had at least one hospitalization where I missed consecutive days, as well. In this time, I was on four different medications and tried a clinical trial.”
While this was going on Sarah says she rarely ate at school and if she did, she stuck to 3-4 “safe foods” to help get through the day.
“I constantly taught with an escape plan in the back of my mind. You can’t just leave a room full of 28-32 kids sitting unsupervised, so I constantly had to think about things like ‘Who will I have cover my class?’ ‘What if I am gone more than 5-10 minutes?’ ‘What can they work on that they will know how to do if I have to step out in the middle of teaching them something new?”
Sarah is open about her IBD with students and their families and says having IBD has made her a more compassionate educator since she understands when students need to miss school.
“When I was younger, I was the student missing multiple days of school. I remember the things that some of my favorite teachers did that helped me to not stress when I felt like I had mountains of missing work. Whenever I have a student gone for health reasons, physical or mental, my standard answer when they come back is “Worry about everything else first, and then I’ll talk to you about what we can do to bring you up to speed in math class. Don’t stress, I will work with you on it.”
One year while being evaluated by her principal during a drop-in visit. He walked into her room, sat down, and started typing. He was aware of her Crohn’s, but Sarah panicked when she knew she needed to make a mad dash to the bathroom while he was in her classroom observing her.
“I ended up going over to him and asking “I really need to step out and use the bathroom. Do you want me to grab someone like I usually do, or do you just want to watch them since you are here” He agreed to watch them, and I ran out to go to the bathroom. Whenever I had to step out, I was also conscious of what time it was. This time, there were about 30 minutes of class left. In my head, I needed to get back ASAP because THE PRINCIPAL was in there and he was supposed to be observing me. When I heard the bell ring and I was still on the toilet, I panicked – I’m talking instant tears. I was able to finish and tried to hurry back to my room. My path crossed his on the way back and I started to say, “I’m sorry, I didn’t know I would be that long.”
Sarah says her mind was racing with crazy thoughts about her abilities as a teacher and what she was capable of. The principal could see she had been crying and more tears were starting to fall, and he interrupted her and said, “Sarah, I am not worried about it. This is your third year here and we know this happens. I am worried about what I see when you are able to be in the classroom and what I saw meets and exceeds our expectations. Please don’t worry about it.” – This reassured her so much more than even he will ever know, but the story replays in her head every time an administrator pops in her room for an unannounced observation – even 4 years later.
When Sarah taught high school, she was nowhere near remission, forcing her to be extremely transparent with her students.
“I told them that I had a disease called Crohn’s and that in a nutshell, my immune system was attacking itself, specifically my intestines. They knew that me having to step out of class and disappear to the bathroom was a possibility and witnessed it multiple times a week, sometimes in the same class period. They were also aware that often these bathroom breaks would result in pain, nausea, and exhaustion.”
Whenever Sarah would have an episode, she says the students went above and beyond to be empathetic and understanding.
“I had students volunteer to work out examples on the board so I could sit down, and they were extremely good at switching gears and changing the plan if I needed to do something with less walking around, standing, or talking – for example work on a worksheet instead of doing notes or bringing questions to me at my desk over me walking around offering help. I really do think high school students are more resilient and compassionate than people give them credit for.”
Since her ostomy surgery, Sarah’s life in the classroom has changed for the better.
“I feel like a completely different teacher. My energy isn’t nearly as much of an issue, I can teach without constantly having an escape plan or worrying how long I’ll be stuck in the bathroom, I can eat lunch at school like a normal person, without worry or only packing the same 3 things, and for the first time in my teaching career, I had paid sick days left at the end of the year. I had a chance to worry about the content I was teaching first and my health second, which I had never been able to do in the past.”
Sadly, this past week, Sara’s ostomy leaked while she was in the middle of teaching 30 thirteen-year-old students. Luckily, she works less than one mile from home so she yanked her shirt down as far as it could go and told the admin she’d be back in 15 minutes.
Sara Margolin of New York has been a professor of psychology for 15 years, with a focus on neuropsychology, cognition, and aging. She says her experience with ulcerative colitis and two other autoimmune conditions has made her more understanding toward her students. Sara says, “Robin Roberts said it best, “everybody has something.” And she’s right. I’m not the only person with a chronic illness. Many of my students struggle or someone they love struggles. Understanding that they deserve the compassion that I wish to have has only made me a better professor.”
Sara has had to leave the classroom on multiple occasions to urgently use the bathroom.
“I will either quickly show a film if I have one at hand or pretend to get a call from my children’s school and “need to leave to take it.” But in my smaller classes, where the discussion leads us there — in the discussion of medical trials, medications for chronic illness, or psychological issues stemming from chronic illness, I’ve discussed my condition. And there have been a handful of students over the years who have been diagnosed while in my class, and I share with them that I understand what they are going through. We bond over that.”
Now that classes are back to in person this fall, she has some concerns knowing she is not fully in remission and not able to teach remotely anymore.
“When I was teaching at home, I had a time or two where I turned my camera off and taught from the bathroom…. EEK! … and knowing that I may be in the position to need to do that but not be able to is nerve wracking. But I know that my colleagues will fill in for me if I do need them to.”
Madison Laspisa of New York has taught fourth grade for four years. She was diagnosed with Crohn’s disease in June 2020, during her first year of having her own classroom. Not only were schools shutting down when her severe symptoms began, but she was dealing with school closures and remote teaching, on top of being diagnosed with a chronic illness.
“My life was flipped completely upside-down to say the least. I was truly devastated at everything that was happening around me and to me. My first year in my own classroom should have been the most memorable part of my career (in a good way), but I sadly cannot say that. My life changed before I had a minute to truly process what was happening. However, since we were forced to stay home because of the Covid-19 pandemic I had the availability to see doctors and get procedures done as needed. Had it been a normal school year I would have had to take a leave of absence during my very first year of teaching.”
Since then, Madison says her IBD has impacted her experience as an educator in more ways than she’d like to admit.
“Aside from needing to take days off to receive my infusion, there have been days where I needed to take a last-minute half day because I desperately needed to see my doctor. At times, this can leave the main office scrambling to find a substitute for my class with an already existing shortage. Not to mention the schedule change my students have to now adjust to with their teacher leaving mid-day.”
Madison says the toughest challenge for her is the amount of time she needs to take off to receive her medication and meet with her care team. She does her best to schedule doctor appointments after school hours, but sometimes it’s not realistic. Right now, she receives her biologic every four weeks, which was changed from every eight weeks.
“This required change in my treatment plan will now require me to miss time in my classroom with my students twice as often. It’s not as simple as “taking a day off” as it is very time consuming to create thorough substitute plans on the days, I am absent. It makes me feel like I’m a “bad teacher” because I have to take time away from my students and classroom. I feel guilty when I’m making substitute plans because I know I am going to be absent the next day and my students have no idea.”
Madison says the weight of the unpredictability of her Crohn’s makes her anxious. She worries about waking up one morning and not being physically able to go into work and do her job.
“I love what I do with a passion and anything that can hinder my ability to do my job to the fullest breaks me. Having the summer months off allows me to slow down and take a break from my rigorous work schedule. In a sense, it provides me with some relief because I know being home, I don’t have to worry about missing work because of my IBD.”
Madison hopes that if someone reading this article aspires to work in education, that they don’t allow their IBD to deter them from taking the leap.
“Teaching and being with my students is my escape from my reality with IBD sometimes. IBD has robbed me of so much and I refuse to let it rob me of my dream job. Do not let IBD dictate what you can and cannot do. Being a teacher and having IBD are both full-time jobs and can be extremely overwhelming at times but loving what you do makes all the difference.”
Krista Deveau has been a teacher in Canada for seven years, she recently became a mom and is an ostomate. She currently teaches kindergarten but has also taught third grade and worked as an intervention specialist helping students with literacy and numeracy. She started her teaching career three months after having a bowel resection surgery. She ended up landing back in the hospital three months later, weighing under 100 pounds, in one of the worst flares of her life.
“My GI team told me that I had to work part time if I was able to or else my chances of being back in a hospital bed were quite high. Working part time has really given me a work- life balance where I can take care of my health and myself and also focus on my career.”
Prior to receiving her ostomy, Krista tells me it was difficult to teach, as she was having accidents almost daily and was vomiting in a garbage can outside of her classroom. During her first year of teaching, she had a meeting with an administrator after school and happened to have an accident. Krista had forgotten to bring a change of clothes.
“I was so embarrassed that I stayed behind my desk all afternoon so students couldn’t smell me. I cleaned up at recess as best as I could. After school I went to meet with admin and told them I had to leave because I had had an accident and didn’t have a change of clothes. I had already told them about my situation and how I was experiencing incontinence, so it wasn’t a big deal, but I was humiliated.”
Krista says teaching is a stressful and demanding job—and that it’s important to be honest with your admin team so there are no surprises along the way.
“Make sure to take care of yourself. Don’t stay late every day. Work smarter, not harder. Collaborate and share plans with other teachers so you aren’t reinventing the wheel. Lean on your coworkers. Find one good coworker friend that will have your back. Don’t work on weekends. Don’t take on too much of the extras, it’s okay to say no. Try to have a healthy work life balance. And find a school/school board that’s a good fit for you and where you feel supported.”
Helpful Tips for Educators with IBD
Be flexible and rework plans, not just in terms of being absent, but also what you can do instead if your energy level is too low to actively teachon your feet or if you need to talk for an hour straight multiple times a day.
For example: Create PowerPoint slides where every single step of a math problem animates itself with the click of a button so you can be sitting instead of standing up, exerting energy.
Teaching is a pleasant distraction. Teaching enables you to get your mind off your IBD and do what you love. Regardless of what you do professionally, your IBD is going to be a part of you, why let it take more from you than it already has? Enjoy the thing you can enjoy.
Make the appropriate accommodations for yourself. Once you are hired or work in a school district, provide school administrators with medical documentation as to why you are unable to work on a certain date. At the start of the school year, it can be helpful to turn in a letter stating your treatment plan along with a request to use the bathroom when needed stating your medical condition. Typically, teachers use the bathroom on their scheduled breaks, but this accommodation allows that in the event you need emergency use of a bathroom, someone will need to cover your class at any given time. This type of documentation for my district must be renewed every school year.
For example, if a typical teacher instructs five classes with an hour to plan and a 25-minute lunch, split with a 25-minute study hall, inquire about keeping your schedule consistent year after year and teaching two classes, then having a plan period, teaching two more classes, and then a ‘duty-free lunch’—meaning you get the entire 56 minutes for lunch, instead of having a study hall to give you a buffer for a bathroom trip along with minimal interruption to other classes.
Request a classroom close to a bathroom and department office so that there are people nearby in case you need someone to cover your class on a moment’s notice.
Try not to fear the worst. Being hospitalized is beyond your control and whether you have a chronic illness like IBD or not, life happens, and co-workers will need help from time to time. Rather than stress about who gave up what time to help you, focus on how to pay it forward and help other teachers when you feel well and when someone else is in need.
Teaching takes a village. Everyone is more than willing to help you out if you let them. Besides, it all becomes so much easier when you don’t feel like you must hide such a huge part of who you are. The sooner you realize people are willing to help you and you don’t have to try and keep it hidden, the easier teaching with IBD becomes.
**Disclaimer: This article is in no way meant to offer medical advice or guidance. Medication to treat and manage IBD is NOT a failure. Please understand this is one person’s experience and journey. Prior to going off medication, consult with your gastroenterologist and care team.**
She was diagnosed with Crohn’s disease in 1991 at 19 years old. As a veteran patient and IBD mom of two teenagers, Kelli Young says the COVID-19 pandemic, along with turning 50, inspired her to dig deeper into her health journey and look beyond the “cookie cutter” approach to treating IBD. After multiple surgeries and decades of biologics and other medications, she was determined to try a different approach.
Much like many of us in the IBD community, we often choose to hide our disease from others. Kelli says 15 years of that strategy often left her feeling misunderstood. Once she started sharing and opening herself up to support, her world changed for the better. Anytime someone is sympathetic and says, “you poor thing,” Kelli reminds them that Crohn’s disease molded her in the person she is today and that everyone has problems, hers just happens to be IBD.
“Having lived more than half my life as an IBD patient, I knew I didn’t want to live the second half of my life the way I did the first half.”
Taking a closer look into food sensitivities
It’s no surprise the importance of diet has become a larger part of treating IBD in recent years, but there’s still a lot of gray area.
“Diet is often the one thing that the medical profession overlooks or provides the same generic diet to everyone, assuming everyone is the same. Diet is the #1 factor that affects your health in every way imaginable. Your energy, sleep, weight, sex drive, bowel movements, heart rate, and mood, just to name a few.”
Prior to changing her diet, Kelli connected with her longtime friend of more than 20 years, Dr. Sean Branham, a chiropractor who specializes in functional medicine. Dr. Branham ordered the Oxford Food Sensitivity Test. The test measures inflammation in the body on a cellular level. Food sensitivities are unique to each person, so it’s impossible to determine what your sensitivities are without getting tested. Reactions can also be delayed or be dose dependent.
Kelli says, “The Oxford Food Sensitivity Test looks at all types of white blood cells (Neutrophils, Lymphocytes, Monocytes and Eosinophils) and measures release of all pro-inflammatory chemicals like Cytokines, Histamines, Prostaglandins and Leukotrienes. Certain groups of foods are pro-inflammatory to humans because we may not contain all the enzymes to thoroughly break them down (like dairy). Other foods are pro-inflammatory because of their processing, like many different forms of sugar. Some are inflammatory due to genetic modification like gluten. Some healthy foods can create inflammation once digestive damage has been done and these partially digested foods leak across the digestive barrier and trigger an immune response.”
Customizing diet with Food Sensitivity results
Kelli’s tests results showed mushrooms, cashews, trout, mangos, green peas, coconut, among other foods, triggered an immune reaction. Once Kelli had her Food Sensitivity results in hand, her and Dr. Branham started to customize her diet.
“We first started by removing the bigger classes of pro-inflammatory foods like; dairy, sugar, gluten and soy and then assessed specific foods that were causing a problem for me individually.”
Along with removing these food groups from her diet, Kelli did a whole-body digestive cleanse that involved a specific diet with supplements, a shake, and a cream to rid the body the body of toxins, decrease inflammation, and cleanse the liver and digestive tract.
“Testing revealed that there were more than just digestive issues going on. I also had a blood sugar regulation problem, Estrogen dominance, nutrient deficiencies, a need for: digestive enzymes, immune support, and microbiome support. Once I completed the cleanse, we customized a supplement regimen specific to me based on my test results. We started with what Dr. Branham considered the most important things first and then as we corrected those issues, we moved on and tackled the next issue and so on.”
Celebrating a “new way of life”
As a single mom of a 19-year-old and a 16-year-old who have supported her through her IBD journey every step of the way, Kelli calls these lifestyle changes her “new way of life”.
“When my son was between the ages of 8-12 years old, he was showing IBD symptoms, but he didn’t have IBD, he was experiencing empathic pains. He watched me, a single mother, battle with the daily struggles. I tried to hide it, but he saw right through me. Today he is 16, growing, thriving, and enjoying his healthy mother. My daughter, 19, the age at which I was diagnosed, is thriving as well. I am now able to truly be present in both of their lives.”
When Kelli and her husband divorced, her children were only 8 and 5 years old. As an IBD mom it made an already challenging time that much more complicated. She never dreamed she’d be at this place in her life health-wise.
“Back then I wondered how I was going to give myself my own shots, how I was going to care for two small children 50% of the time when I was always sick. Being a single mother with IBD forced me to take a good hard look at my life, not only for me, but for the sake of my children. My motto used to be “expect the unexpected” and “no expectations.” Today, I no longer worry about the future bad days or wonder if I’m going to be around to be a grandmother someday. Yes, it’s difficult at times to follow such a structured lifestyle, but it’s even more difficult living a life being chronically ill.”
Going off all meds
Kelli has been off all IBD medication since May 2021. She says her GI of 30 years is reluctantly supporting her decision to go this route on her patient journey. Kelli had a colonoscopy in June 2022, and after the scope in recovery he said, “Well Kelli, your new way of life is working. I’ve never seen your scope results look this good.”
While this lifestyle may seem “extreme” to some or difficult to follow, Kelli says she was sick and tired of being sick and tired.
“The definition of “remission” varies depending on who you ask. I am celebrating three years of a “disease free” diagnosis. The Crohn’s will ALWAYS be very much part of my life, but now, the only time I have a “bad day” is when I cheat on my new way of life, eating something I shouldn’t be eating, not getting enough sleep, not exercising, and not managing my stress.”
It’s been 6,207 days since my life changed forever. On July 23rd, 2005, I was diagnosed with Crohn’s disease at age 21. Since that time, I’ve evolved and changed in ways I may not have if it weren’t for my IBD. After living in silence with my condition while working in television news for a decade, I decided to use my love for storytelling and speaking to be the voice I needed to hear upon diagnosis as I navigated the many crossroads of young adulthood (finding love, a fulfilling career, and having a family).
July 23rd also marks the day I launched my blog, Lights, Camera, Crohn’s. Since 2016, I have shared fresh content, every single Monday (sometimes even twice a week!). 336 articles on my site alone. More than a quarter-million visitors and more than 387,000 views.
It’s been a labor of love and a mission project that continues to fill my cup and implore me to constantly want to learn more and shed light on topics that are often not talked about. Every day of every week since my blog began, I’m constantly thinking about story ideas, topics of interest, people to interview, ways to word content, images that are needed…the list goes on.
The weekend I started my blog in 2016, I was one month into married life and found out days later I was pregnant with my first child. Since then, I am now a stay-at-home mom of three children (ages 5, 3, and 1). Life has gotten way more hectic and busier with each year that passes, but I’ve held tightly onto fulfilling my promise to the patient community, and to myself, to deliver new content each and every week. I’ve been organized through the years—often having an article written days before my Monday deadline, but this past year, with another baby added to the mix, it’s been more of a stress on me. I’ve spent many Sunday nights finishing my articles. At times it’s felt like a lot to juggle. I haven’t wanted to let anybody down, including myself. And I haven’t wanted my content to start lacking in any way.
Don’t worry, Lights, Camera, Crohn’s is not going anywhere
My blog has grown into more than I ever thought possible. It’s so rewarding to know my words have helped comfort and guide so many in the IBD community. I need to cut myself some slack and give you a heads up that moving forward there may not always be an article on Mondays. It pains me to say that, but at this point in my life, in this season of IBD motherhood, I need to start taking time to rest and relax. Since having my third baby last summer, I get my kids down for the night and START to work around 830 pm. It’s just constant. I truly rarely get a break. I’ve been in remission since August 2015, and I don’t want the stress to get the best of me.
You may not be aware—but my blog is only one aspect of my advocacy work. I also spend a great deal of time working with digital healthcare companies, patient-centered non-profit organizations, sitting on advisory boards and patient engagement teams, communicating with patients in need online and over the phone, and do freelancing work on the side, all without childcare.
I laugh as I write this because I already have three articles lined up for August…so there will be months where there IS an article every Monday. Just not always. My commitment and desire to serve as a patient leader is not waning in any way—I just want to be honest with you, my loyal readers, that this mama needs to lighten the load and take a little self-imposed stress off my shoulders.
I started contemplating this a few months ago, and almost changed my mind this week about sharing, but it’s time. We had an AMAZING 6-year streak of constant new content. I’m excited to see what this coming year brings in the way of patient stories, research, and perspectives. Having extra time to work on articles will really allow me to do more special reports and expand my “IBD Motherhood Unplugged” and “Patient Experience” series.
Thank you for giving me so much to talk and write about, always. There are endless topics that need to be brought to the forefront and I love providing a platform for others to share their journeys and experiences with the community. As always, please reach out if you have a story idea you want me to cover. Lights, Camera, Crohn’s has truly evolved from being a blog about my IBD experience to an award-winning and well-respected site that has highlighted hundreds of different patient stories and physician perspectives—and I love that. There’s no greater compliment then when I hear a gastroenterologist uses my blog to educate their patients.
Excited to see what 2022-2023 brings! Thanks for the love, support, and understanding and for making the first six years of Lights, Camera, Crohn’s what it was.
Take yourself back to the very first time you needed medical attention for your IBD (but didn’t know it yet). Close your eyes for a moment. Who was that person? Do you know them anymore? How have you changed and transformed since that life changing day?
I was diagnosed with Crohn’s disease July 23, 2005, at age 21. I was blindsided by a chronic illness after growing up as a literal picture of health. A three-sport, in shape athlete, who had never even had an ear infection or been to an emergency room. As a recent college graduate, my world flipped upside down as I struggled to find my way in the real world.
Now, 17 years later, I can tell you firsthand what I, you, and so many others have endured on our patient journeys and how each experience (even the mundane) serves as monumental touchpoints for gaining independence and confidence in making you a more empowered and direct patient.
Let me paint the picture clearly for you
The first time you bravely laid in an emergency room bed and every time there after—not knowing the tests, pokes and probs, and physical scrutiny you were about to go through.
How it feels to be wheeled by a stranger through stark hallways to CT scans, MREs, and scopes, wondering what the results will be on the other side and the repercussions for more medications, a longer hospital stay, or surgery.
What it’s like when you say goodbye to loved ones and they roll you into the OR and you’re shaking like a leaf, all alone and feeling frail and broken, alone with your thoughts and prayers.
The number of moments you’ve watched nurses and even rapid response nurses fumble with IV’s try after IV try and when it’s been more than five, you find your voice from that point forward and start only giving medical professionals two tries before it’s on to the next.
How it feels at the butt crack of dawn when the world is sleeping and the hospital is bustling, waking you abruptly to get more vitals and more labs and you lay alone, haggard, frustrated, and delirious.
The moment when your GI has a heart to heart with you about starting a biologic and having to determine for yourself what route is your preference—infusion or self-injection. Would you rather sit for hours hooked up to an IV drip or sit on your couch with your kids looking on as you inflict pain on yourself.
The times you’ve sat up in the middle of the night wide awake thanks to the prednisone kicking in while the rest of your world is asleep wondering if you’ll ever regain some semblance of control of life.
What it’s like trying to eat meals inconspicuously with your family while they not so subtly watch each bite and every trip to the bathroom with sadness and worry in their eyes.
How it felt driving to a first date or a job interview and feeling like your IBD is a dark secret looming over the conversation and not knowing when to take down your walls and share.
Listening to your friends make comments about health and energy without considering what your experience with a chronic, debilitating illness may be like since you look well on the outside.
What it feels like to look at your reflection in the hospital bathroom. Battered arms, sunken in eyes, a shell of who you used to be. But as soon as you walk out of the door, putting a soft smile on to protect your visitors from worry.
What it’s like to sit on an airplane or be on a road trip with others and silently worrying about whether you’ll be able to make it and what your game plan will be.
When you’re up in the middle of the night doing the second half of colonoscopy prep and wondering ‘why me’ in your 20s and 30s, feeling isolated in the physical, mental, and emotional anguish the process puts you through year after year.
What you’ve internalized each time someone dumbs down your IBD, offers up ridiculous remedies or goes into a discourse about their aunt’s brother’s cousin who “healed” their Crohn’s this way.
When you’ve waved the white flag and alerted family and friends that you needed help or to be seen in the hospital after doing as much fighting as you could against your own body.
The first time you bravely looked down at your incision and saw your body forever changed and came to see your scars as battle wounds.
Waking up each day not knowing what the next 10 minutes will feel like for you and getting after it anyway.
Not knowing if you’ll find your person, but meeting people and having the courage to share about your health issues, even if there are heartbreaks and disappointments along the way.
Deciding to have a baby and discussing family planning, despite all the what ifs and becoming a parent because that’s what you hoped for prior to your IBD.
Landing that dream job with your IBD in your back pocket, not letting the detours stop you from finding the path you were meant to go on.
Celebrate the independence you’ve discovered
The list goes on and on! No matter how old you are when diagnosed with IBD, in that moment we are robbed of our naivety and thoughts of invincibility, and we’re forced to go on a lifelong war and conquest. Our bodies no longer feel like ours. Our dreams feel in disarray. Our people may change and not be who you thought they were. Our hearts may break, but like a phoenix this disease can build you up just as much as it breaks you down.
The reprieve of remission, while not perfect or without symptoms has enabled me to breathe and regain my grounding. In 2015, after three back-to-back bowel obstructions and 18 inches of my small intestine, Meckel’s diverticulum, and appendix removed, there was only one way to go and that was up.
Give yourself grace. Celebrate the independence you’ve discovered that you may not be able to have realized until you’re years out like it took me. And when you’re in the hospital, in for a routine clinic visit or for labs, taking your meds and balancing every daily decision against how it will make your IBD feel, you’ll come to realize what you take on and all you accomplish every day just to survive and thrive, makes you something special. While you may feel dependent on others—and the support of caretakers and a support system can’t be understated, neither can the endless strength that lies within you.
Chronic illness forces you to wear many hats and approach life in ways you never thought possible. One of those hats is being an investigative journalist or sleuth. Each time something starts going awry with our health we immediately start the mental gymnastics about what could be going on and if the symptoms are linked to our IBD.
I find that even though my Crohn’s has been in remission since August 2015, that the next flare always looms in a cloud of worry when I’m not feeling my best.
This past week I experienced this firsthand when my eyes both started twitching nonstop, along with headaches. I started thinking about what I could have done to trigger this bodily response. Was it Crohn’s related? Hormonal from breastfeeding weening? A mineral deficiency? A problem with my eyes or vision? Sleep deprivation or stress? The laundry list of possibilities and worries weighed heavily on me. After consulting with my GI, OB, and having an appointment with my eye doctor, I learned the eye twitching was a result of allergies. I now do eye drops once a day to help. It was such a relief to get an answer and physically be able to do something to make myself feel better.
When you notice an uptick in IBD symptoms or health issues in general how do you get to the bottom of what’s going on?
Here are my top tips for getting answers:
•Be proactive. Don’t let things fester and let your anxiety get the best of you.
•Take physical notes, not just mental ones. As the hours turn to days it can be difficult to remember when symptoms began and if they progressed. Keep a simple log of what is happening, how often, the severity, etc.
•Reach out to care providers early and often. Send a quick message on the patient portal informing your GI about what is going on. With IBD, I find it helpful to always loop my gastroenterologist in since so many issues are often related to Crohn’s.
•Be seen. If symptoms don’t resolve in 3-5 days, it’s a good idea to be seen in person or at least a telehealth appointment. You can always get on the books and cancel an appointment if you start to feel better.
•Try not to Google too much. While this is always tempting and can feel like a quick way of gaining understanding, it also can lead to going down a dangerous rabbit hole of what ifs that possibly aren’t even relevant.
•Listen to your gut. You know when something feels off. Don’t drown out how your body is speaking to you through symptoms.
•Practice mindfulness and calming exercises. It’s not unusual to feel up against a wall or like you’re taking two steps forward and one step back with chronic illness. Remember to breathe. Take a walk outside to clear your head. Do all you can to rest your mind from stresses that can trigger your IBD.
I get how exhausting it is to constantly feel at odds with your body and worry about what could be going on. Suffering in silence and not communicating health challenges only sets you back from feeling your best. Be mindful of how you feel each day and feel empowered by collaborating with your care team and giving them all the necessary intel to have the full picture when figuring out your health story past and present.
Stay tuned for a special discussion on IBDLyfe, Wednesday June 29, 2022, at 1 pm CT about “How to Be Your Own Best Advocate in a Provider Setting.” I’ll be speaking alongside fellow patient advocate, Tina Aswani Omprakash. Register here.
Moving away for school. A future career. Relationships. Discovering your identity. Switching from a pediatric IBD care team to adult providers. All while living with a chronic illness. This is the stark reality for young adults living with Crohn’s disease and ulcerative colitis. Juggling all these major life milestones and having to get acclimated to new physicians while taking the lead on disease management is often met with anxiety and worry from young patients, their parents, and caregivers. IBD is a family disease. Even if only one person in the household personally lives with the issue, the disease impacts each person.
This week on Lights, Camera, Crohn’s we hear from patients and caregivers who have lived through the experience and from pediatric GI’s about how best families can be supported through the changes to make them as seamless as possible for everyone involved.
Input from those who have made the switch
Aging out of pediatric doctors can be a stressful time for everyone involved. Let’s start with input from those with IBD who have made the switch along with what some parents and caregivers had to say.
Start researching doctors early. Do your homework and see what insurance providers accept and what hospitals they are affiliated with.
Ask your current pediatric doctors for recommendations/referrals.
Before the first visit make sure the adult GI has received copies of medical records.
Have healthcare proxy and power of attorney papers on file.
“I just turned 20, but I’m still in pediatrics and plan on staying until I graduate from college, as that is the norm at my hospital. However, as an adult in peds, I found it important to have healthcare proxy and power of attorney papers on file so my mom can still help me and if something were to happen like while I’m away at school she is able to get information. I broke my arm this past fall and my body went into such shock that I couldn’t give the hospital any information. My friends were with me and contacted my mom, but because I was 19, the hospital couldn’t even confirm to her that I was in the building. This was a wake-up call. We started thinking about, “what if this was my IBD?” and decided it was necessary to have the papers on file just in case. I still ask my mom to be involved in my care, but we both have the understanding that I have the final say.”- Anna
Navigating the switch through college
Heidi was diagnosed with Crohn’s when she was 9. She’s now 41. When she reflects on the transition from a pediatric doctor to one who treats adults, she recalls the process being fairly simple and a change she welcomed with open arms.
“The best thing was being talked to directly and my opinions mattered more in my later teenage years with the new doctor. Of course, my parents had my best interests at heart, but appointments were so frustrating as a young girl. Another reason for the seamless transition was that my new doctors were amazing. I switched at 18 and then again at 22 when I graduated college and moved away from home. My care team listened to me and saved my life. I know I’m lucky to have found such a wonderful team of doctors.”
Katie wishes there had been a support group (even online) for teenagers back when she was phased into an adult GI. She says when she was diagnosed with IBD at age 15, she often felt uncomfortable discussing her symptoms and didn’t feel her pediatric GI was that great with kids.
“I felt detached from my GI until I was in my 20s and had the confidence to advocate for myself. I was so lost and refused to tell classmates what was wrong with me for fear of being made fun of. I ended up missing so much school I decided to drop out, get my GED, and go straight to college. It was a terrible time to be honest.”
The difference in pediatric vs. adult care
“The transition happened quite fast as I was being referred to an adult surgeon for my complications that the pediatric team were not experienced or educated enough to treat for Crohn’s. I was thrown in the water with no guidance when I started seeing physicians who treated adults with Crohn’s. The pediatric GI team would dumb some things down for me and make my problems not seem “as bad.” As soon as complications started arising, they threw the towel in and basically told me they couldn’t help me anymore and would be better off seeing a care team with more experience with my symptoms and complications.”-Chrissy
Natasha experienced the transition about 13 years ago. Her pediatric team helped her choose an adult GI. And the guidance didn’t stop there.
“My pediatric GI told me who she wanted for me and then went with me to interview the doctors in the adult team. Once I chose, my pediatric GI attended every appointment with me until we all agreed I was ready to move into the next step of my care, which luckily was quickly. And the two doctors stayed in communication. My advice—be open with your doctor.”
Natasha recommends asking yourself the following questions to help streamline the process and make it less nerve-wracking.
What are you looking for in your next step of care?
What are you looking for during the transition process?
What is important to you in a physician?
Do your own research
“I had an AMAZING pediatric GI when I switched, and I just went with who she recommended. Looking back, I wish I did my research because he is not who I would have chosen for myself. I would recommend doing your own research and make sure whoever you find is willing to work with you and thoroughly go through your medical history and all your results. Too many doctors seem to just think they know everything, but we know our bodies best and need to have a medical team who lets us advocate for ourselves.”-Danielle
Jennie has lived with IBD for nearly 20 years. She has a PhD, works in IBD care, and recognizes she has the privilege of a strong support network and insurance. As an IBD psychologist she recognizes how difficult the system and transition can be for everyone involved.
“I was diagnosed with IBD at 12 and transitioned to adult care around age 18. I was extremely sick at the time and ended up having a proctocolectomy within months of transitioning. I think the biggest things for me were the notable shift in culture between the peds and adult world, and the insurance pieces. It’s so much for kids and families. Lastly. I’ve noticed the transition is nuanced for my parents who were so good at being my advocates, they will still offer to call the doctor if I tell them I am not feeling well, and they have a tough time not having the same significant role they did when I was younger.”
Allie was diagnosed with Crohn’s disease when she was 12. Her mom attended all her appointments until she turned 18, and only stopped going then because she was out of state for college and seeing a pediatric GI there until she turned 22. Allie’s mom kept a medical binder of all her procedures, lab results, and details about her patient journey. She says when she phased out of pediatrics and started taking matters into her own hands, she found the binder her mom made to be beneficial—Allie found herself referring to it when she couldn’t remember everything.
“What helped the transition the most was going to appointments on my own when I turned 18. I felt more prepared to speak for myself when I switched to an adult GI.”
Allie’s mom also inspired her to ask the tough questions. After witnessing how her mom spoke up to doctors it empowered her to speak up and stop minimizing her struggles. By watching how her mom handled appointments, it inspired Allie to write down all her questions and concerns before doctor appointments, so she doesn’t forget anything.
“My mom asked me what fights I wanted her to fight for me and what I wanted to do myself. She guided me on what I might need to ask about when I had no clue—even as an adult she still offers to help call insurance companies to fight authorization battles. She gave me space to live my life when I turned 18. She worried, but she never hounded me for updates (are you taking your medication?, how are you feeling? Are you eating ok?”…but she always conveyed support (both my parents did) when I needed it most she showed up.”
Sari recommends young adults with IBD to ease into taking control of their care as early as possible.
“Things like refilling your own meds, scheduling your own appointments, and driving yourself to appointments goes a long way when it comes to learning how to stay organized and advocate for yourself. You don’t want to be doing all those things for the first time when you go to college or a start a new job—too many scary or unknown things at once!”
Check out what pediatric GI’s have to say about bridging the gap and ensure continuation of care.
Dr. Sandra Kim, MD, Associate Professor of Pediatrics, Director, Inflammatory Bowel Disease Center, UPMC Children’s Hospital of Pittsburgh, says, “Transition is the preparation process while the young adult/teens are still under the care of the pediatric team. Transfer of care is the actual “handoff” when the young adult moves from the pediatric GI team to the adult GI providers. Teens want independence but struggle with disease knowledge and self-management skills. Therefore, the pediatric GI team needs to help the teen (and the family, too!) by being active listeners, communicators, and educators. The healthcare team also should utilize things like transition tools.”
Dr. Kim went on to say that GI doctors need to assess how teens are doing on the road to greater independence and that shared decision-making helps build partnerships between adult and pediatric GI providers.
For the adult GI team:
Collaborate with the peds team in the initial stages of care transfer.
Anticipate existing gaps of knowledge and self – management skills
Prepare for more time during appointments for questions, additional education, and working with the family. Parents need help during this time of care transfer, too!
Dr. Jonathan D. Moses, Assistant Professor of Pediatrics, Director, Pediatric Inflammatory Bowel Disease Program, UH Rainbow Babies and Children’s Hospital, explained how his hospital has a multidisciplinary pediatric IBD team that engages patients in a Health Maintenance Education Clinic as early as 11 years old.
“This allows them to build up the self-management skills needed for a successful transition to adult GI, when they are ready. In lieu of this resource, parents can engage their health care providers about ways to get their child more involved in their care and provide them with the autonomy, and support, to take over aspects of their care over a period of time.”
Dr. Hilary Michel, MD, Assistant Professor of Clinical Pediatrics, Nationwide Children’s Hospital, says a successful transition from pediatric to adult care requires that young folks have developed the knowledge and skills needed to understand and manage their disease independently.
“This knowledge and skill is not gained overnight, and ideally should be obtained gradually. Transfer to adult care should be planned in advance, when a patient is feeling well and has a good grasp on their disease management, so there are no gaps between peds and adult care. Parents and families can help the process by allowing teens to speak with their healthcare providers alone, gradually share care responsibilities, encourage them to learn about their disease, and highlight their successes.”
How this works in real time:
Patients can listen and participate in their visits.
Set goals with your healthcare team and work toward them, ask questions and share your opinions.
Healthcare teams can help by providing a non-judgmental space, listening attentively, encouraging young people’s success, engaging patients in decisions, checking for understanding, getting to know patients as people (talk about school, friends, activities), and connecting patients with resources
Dr. Whitney Marie Sunseri, MD, Pediatric Gastroenterologist, Assistant Professor of Pediatrics, UPMC Children’s Hospital of Pittsburgh, says “I always encourage a step-wise approach to transitioning to the adult world. I encourage patients to know their diagnosis, what medications they take and when, to recall their last scopes, and to be able to report all of their symptoms without the assistance of their parents. Then as they get older, and closer to the time of transition, I encourage them to look into different adult doctors. I give recommendations as well.”
Dr. Sunseri advises caregivers and patients to be proactive and look at reviews of doctors and who is in their insurance network. She says the most important visit is the one where patients follow up with her after their first adult visit to make sure it was a good fit and that they are in good hands.
“It’s bittersweet watching these children grow in so many ways and head off into the hands of another provider. Your heart swells with pride and breaks at the same time.”
“Peer support during this transition is critical, so we host seven virtual community meetings. We have hosted over 250 of these peer support meetings over the last two years. I think peer support should be seen as essential during this transition period and it has been the best thing to come out of living with IBD.”
Generation Patient: Instagram–@generationpatient
Join the American College of Gastroenterology Thursday, May 4, 2022 at Noon and 8 pm ET for a discussion about “Empowering Patients Through the Transition of Care in IBD”. Click here to register.
There’s no black and white approach when it comes to managing and treating inflammatory bowel disease. Newsflash—you don’t need to choose between medication and diet (nutrition). You can do both! This week on Lights, Camera, Crohn’s, we hear from registered dietitian and ulcerative colitis warrior, Ashley Hurst, about how her personal patient journey inspired her to look into targeted strategies for improving quality of life with IBD.
Ashley was diagnosed with ulcerative colitis at age 24, but she remembers symptoms starting when she was 7 years old. She lacked support for a long time, so her symptoms became her “normal” reality. When she was in college, she sought help for two years before she finally was able to get a diagnosis.
“I went to several doctors who dismissed my concerns thinking the bleeding was just fissures or hemorrhoids. It wasn’t until I was in a nutrition class in college, that I realized it might be something more. I remember reading about Crohn’s and ulcerative colitis and feeling like I was reading about all my symptoms.”
Finally, the fourth doctor she went to diagnosed her with IBD. She experienced a gamut of emotions ranging from relief to disbelief. More than anything, her diagnosis was a huge financial burden. At the time, she was working 2-3 jobs without health insurance. She couldn’t afford medication or even a colonoscopy bill.
“Since I couldn’t afford medications, I relied on nutrition and my own protocol. Once I was more financially stable, and had health insurance, I was able to start mesalamine rectal enemas and oral tablets, while sticking to my nutrition plan.
A preference for finding the balance between diet and medication
“Nutrition and medication have been lifesaving for me at times and I’ve found I prefer doing a bit of both (and so does my gut!). When choosing what route to go for IBD, often we feel a sense of guilt around taking medications. However, it’s important to remember that with whatever treatment route we go, we must weigh the risks versus the benefits.”
An uncontrolled flare is a risk and can impact our quality of life significantly. If you aren’t comfortable with medications your doctor has recommended, you can always ask what other options are available. It’s important to feel good about whatever treatment route you are taking and remember it’s your body, and your choice—just be prepared to face the consequences of active disease and hospitalization if you attempt to go against medical advice and take matters into your own hands. There is a fine balance distinguishing what triggers you and how best your disease is controlled.
The story behind The Crohn’s and Colitis Dietitians
When Ashley initially worked as a registered dietitian, she didn’t specialize in IBD. But as the years went by, she realized Crohn’s and Colitis patients were her favorite people to work with.
“I felt drawn to supporting IBD patients like myself and saw what a need there was for IBD specialized dietitians. Four years ago, I lost my cousin and close friend who had Crohn’s, and he left a lasting impact on me that further increased my desire to make a greater impact in the Crohn’s & Colitis community. He inspired me to be open about my diagnosis and get more connected with others who have IBD.”
Once Ashley decided to specialize in IBD, she quickly discovered how fulfilling it was to do work that has a lasting impact. Ashley says many people seek their support for IBD nutrition, but often feel like they need to choose one or the other.
“Most IBD research studies on both dietary strategies and targeted supplementation for IBD look at participants that are also on medications. Research continues to show that a combined approach using both medications and nutrition is the best path and can help increase chances of remission. It can be tempting to try and experiment by doing one thing at a time to see what works. However, there is currently no one cure for IBD, so treatments typically do involve a multi-faceted approach.”
As business started booming, rather than create a wait list, she brought on three other dietitians. Ashley and her team specialize in providing medical nutrition therapy for Crohn’s and Colitis patients, but also tackle SIBO, acid reflux, allergies, EOE, and much more. All four of the dietitians on the team have IBD, so they understand the patient perspective and the urgency to reach relief.
“As a team, we’ve had the privilege of working with hundreds of patients with digestive challenges, and we have witnessed the remarkable transformations that are possible. We are passionate about helping people not only find relief but make peace with food again.”
Like a fish out of water concerning diet
Many of the people with IBD who Ashley speaks with express that they were dismissed when asking their provider for a dietitian referral.
“The most common thing I hear is- “I Googled what to eat for IBD and Google left me with what NOT to eat for IBD and I feel even more confused with all the conflicting information!” It’s true, the internet is filled with conflicting information on this topic. This leaves people feeling afraid of food and often only eating just a few “safe foods”. Oftentimes these self-imposed food restrictions are unnecessary and lead to malnutrition, loss, low microbiome diversity, poor gut health, and ironically more symptoms!”
This is where Ashley and her team come in. They help those with IBD sort through all the nonsense and get to what really matters most and what works on an individualized basis.
“We are interested in supporting IBD patients, not just while they work with us, but for the long haul! We equip our patients with tools to learn so that they feel confident navigating nutrition even after they leave. We also offer a variety of free and low-cost educational resources on our website and Instagram for those people who just need a next step.”
How to know if you’re truly “healing” your IBD with food
The first question Ashley asks fellow patients she consults with is—is your nutritional approach working? The only way to know is to confirm through colonoscopy and inflammatory lab or stool markers.
“Symptoms alone are not always a great indicator of how our IBD is doing. It is important to monitor your IBD even if you are feeling better to make sure your disease is not progressing.”
Medication is not the “easy way out” and is not a sign of failure
Ashley and her team work with many IBD patients who are on biologics and utilize nutrition as a complementary approach to allow their medications to work better.
“Medications often lower certain nutrients, so one way you can support yourself long term is to check for deficiencies regularly. Some nutrients like zinc and vitamin D we need to regulate inflammation and help support our digestive tract lining. Ensuring they are at appropriate levels can help prevent flares. Vitamin D especially tends to get low with inflammation and is correlated with flare frequency and severity.”
Many patients avoid fiber because they fear it will trigger symptoms. Personally, I remember the first decade of living with Crohn’s, I was told I couldn’t have more than 5 mg of fiber per serving, which I now know is not the case.
“Understanding nutrition can help with expanding your diet. Research shows the importance of fiber for IBD for inflammation reduction, preventing flares and also complications. However, fiber is the most common thing IBD patients avoid. There are many ways you can approach expanding your diet without triggering symptoms and working with an IBD dietitian can help you navigate this better.”
The Roadmap of Nutrition
On average, Crohn’s and Colitis Dietitians helps clients reduce their IBD symptoms by 50-75%. Most report that their other big takeaways are improved energy and feeling more at peace with their food choices.
“We help you achieve this through working with people in a group setting and one-on-one. With one-on-one work we see people for a total of 6 months. It starts off with an intake session where we get to know your goals and your whole story with IBD and outside of IBD. After this session we put together a customized treatment plan that is your roadmap forward.”
The process includes dietary guidance (what to prioritize in the diet) and often targeted supplementation recommendations too. After this session, Ashley and her team see people each month in sessions to monitor progress and troubleshoot anything that comes up.
“We also offer access to us through chat throughout the whole 6 months for any questions that come up. We offer customized meal planning and video modules designed to help you.”
IBD is not your fault. It’s important to remember you didn’t sign up for this and you shouldn’t have to carry the weight of it alone.
“It can be incredibly helpful to have a team around you to support you through flares and the ups and downs of IBD. An IBD focused dietitian can help you navigate what to eat, treat nutrient deficiencies, sort through best options for targeted supplementation and help you reduce IBD symptoms.”
Outsource your stress. It’s overwhelming to juggle all the proverbial IBD balls in the air.
“Having a support team alleviates stress. It’s calming to know you don’t have to think through every decision and worry by yourself. It helps to have someone to lean on and takes the weight off your shoulders.
Don’t base your journey off what works for others. Just because you see someone proclaim their success by treating their IBD with food, doesn’t mean you’ll have the same experience. Before making any rash moves with your treatment plan, it’s imperative you communicate with your care team and get medically guided advice vs. following what you see someone post on Instagram. Same goes for medications—just because one person has had a great response on a biologic, does not mean you’ll have the same response.
Here are what some patients have to say about their experience:
“I’m so glad I started this program. I had to stop biologics due to developing antibodies and have been off biologics for over six months and since starting with the Crohn’s and Colitis Dietitians, I feel better than when I was on them. I only wish I found this program earlier.” -A.T.
“During the 6 months I was with Crohn’s and Colitis Dietitians- my symptoms of diarrhea and urgency reduced significantly, I have more energy and my inflammation decreased from over 100 to 38 (fecal calprotectin). Even my doctor was surprised and curious about what I had been doing with my nutrition!” -S