Calling all IBD patients and caretakers, the IBD Insider Patient Education Program is this Saturday (January 30) at 11 am CT. The virtual symposium will include IBD clinicians along with patient moderators. I’m excited to share I am one of three patients who will be speaking and sharing my experience during the live event.
The discussion will include updates from the Crohn’s and Colitis Congress, and we’ll talk about the following topics:
Getting the most out of your healthcare visit
Future therapies in IBD
Holistic Approach to IBD Care
Management of IBD Care during the COVID-19 pandemic
I’ll be teaming up with Dr. Brigid Boland, MD, Assistant Professor of Medicine, University of California, San Diego to talk about the future treatment of IBD. As someone who was diagnosed with Crohn’s nearly 16 years ago, it’s been extremely comforting to see how many therapies have become available since 2005 and all that is on the horizon. Below is a chart that was shared during the Crohn’s and Colitis Congress that shows all the therapies currently in research and clinical trials. When I started my biologic in 2008, I had two options. With each year that passes, we get closer to a cure and get more and more options to manage our disease if our current therapies fail us.
“I love the idea of designing a program with patient advocates where we are communicating to patients and their families about the latest breakthroughs in research and patient care. There’s never enough time in visits to talk about all the research going on that will impact their care now and in the future. Ultimately, all the research and future therapies that are being studied are ways to improve patients quality of life and provide a lot of hope for everyone affected by IBD (patients, caregivers and providers),” said Dr. Boland.
As people living with a disease for which there is no cure, it’s in our best interest to stay up to date on all the latest happenings and developments. IBD can feel like a beast of a disease to be up against day after day. When you participate in learning opportunities like this that are right at the touch of your fingertips you empower yourself as you make decisions and grow through your patient journey. It’s like the education saying, “The More You Know.” As you make decisions about how you manage your Crohn’s and ulcerative colitis, as you take on flares from a hospital bed, as you navigate life milestones like career and family planning, having resources like this in your arsenal of knowledge will only help you advocate for yourself and collaborate with your care team.
It’s not too late to register! Click here to sign up and can’t wait to “see” you Saturday!
She’s an ICU nurse who’s been braving COVID since the start of the pandemic and she has quite the story to tell. Abigail Norville, of St. Louis, is not only on the frontlines as a healthcare worker, but she also has Crohn’s disease and is immunocompromised from her medication. In mid-November, Abigail tested positive for COVID. This week on Lights, Camera, Crohn’s, she shares her unique journey through the pandemic and what she wants others to know.
Abigail’s IBD diagnosis story
Diagnosed with Crohn’s at age 16 in 2013, she remembers falling asleep in class everyday and experiencing abdominal pain that would keep her up at night. Teachers started giving her detentions for sleeping in class. After a few detentions, she started excusing herself from class so she could go into the bathroom, set a 10-minute alarm on her phone, and lay her head against the stall wall so she could rest and not get in trouble. Along with that, she dropped 32 pounds in one month.
At the start of her patient journey, Abigail was treated with steroids such as prednisone and budesonide, without a maintenance therapy in place. Before starting biologics, she was also put on Apriso, Lialda, Asacol, and Pentasa. When these medications didn’t cut it, she started Remicade treatments.
“The infliximab infusions greatly improved the disease presence in my intestines, but I was unfortunately experiencing new chronic joint pain, extreme fatigue, and skin rashes. At the time I assumed these were side effects from treatments. I told myself to “pick my poison” and I could keep my intestines or experience these unpleasant symptoms, so I of course continued with the infliximab infusions,” said Abigail.
Unfortunately, after a few years, a rheumatologist diagnosed her with drug induced lupus (infliximab induced lupus), and she was immediately taken off Remicade.
She started Entyvio in early 2020 while working in a COVID ICU and had to hold off the infusions due to the nature of the loading doses. Fast forward to today (Dec. 2020), and she has now finished her loading doses, in conjunction with prednisone and sulfasalazine daily.
Since diagnosis, Abigail has endured three surgeries and countless scopes.
Working in the ICU during COVID while taking on Crohn’s
Abigail currently works in a medical/pulmonary ICU and treats patients with multiple life-threatening comorbidities. Unfortunately for her, this is her first job. She’s a brand-new ICU nurse. While she could have thrown all her years of education and desire to be a nurse out the window to avoid the pandemic, she feels being a nurse is more than a job, it’s an obligation. Her GI told her she was his first patient to request a note to “continue to work” rather than asking for a note to stay home.
“When the pandemic started, many of us thought this would last a few months and we could return to the previous way of life by the end of the year. I remember having a conference call on a Sunday night with my manager stating we were the official COVID unit. I didn’t realize the depth of this pandemic until every nurse and physician stood in a circle one day and agreed that there was no emergency in a pandemic, and we were to always protect ourselves with PPE. Everybody around me was scared but… what were we to do? This was our job. We have bills to pay,” said Abigail.
Abigail recalls how her anxiety regarding her own immunocompromised conditions worsened as she witnessed her patients struggle with COVID and learned of nurses moving into hotels and dorm rooms to protect their families.
“My physician advised me to find a new job, but this was my first nursing job, and I did not want to burn a bridge early in my career. When we intubated my first COVID patient for her to be placed on a ventilator, she made me agree to call her daughter and repeatedly told me she was scared. When this patient did not make it and we continued to see death from COVID, I was worrying myself sick over my own health. The nurses around me were also scared, were quarantining from their families, and I felt out of place saying I needed to work elsewhere when they were also risking their lives.”
Ultimately, Abigail’s GI said she could hold off on receiving her loading doses of Entyvio, but that she would need to start steroids, again. She worked in the COVID unit, taking high dose steroids. Despite this, she was losing weight from the physical labor of working the COVID floor and the worry she felt about how her Crohn’s would act up if she ate while at work.
“I was working and not eating to ensure I did not have to leave a COVID room abruptly to be sick in the bathroom, when most patients were extremely unstable. Time did not permit you to think of your own health when your patient was dying. There were times I found myself in a COVID room for hours and would come out of the room sweating through my scrubs, wanting to pass out, and reminding myself I really needed to eat some food. My Crohn’s symptoms were worsening and my inability to care for myself was impacting the severity of these symptoms. I told myself I had to find a new job that allowed me to start my Entyvio treatments, even if I did not want to. If I do not care for myself, I cannot care for my patients.”
Abigail ended up switching jobs in June and started working at a different St. Louis hospital. Unfortunately, dodging the bullet of treating COVID patients was short-lived in the ICU and she inevitably was back to square one. At this point, she made the decision to start her Entyvio loading doses. She personally felt that no matter what unit she was working on, she was at risk working as a nurse.
Testing positive for COVID
Abigail tested positive for COVID in November. She wasn’t too surprised. Her symptoms pointed right to it. She was scared her chronic conditions would impact how severe her case would be and says she was anxious throughout her quarantine. She landed in the ER once, but luckily was ok and made a full recovery.
“The pain and suffering are real, whether you experience it or not. Watching people die with no loved ones present is happening every day. It’s on us to realize our lives are not the center of the universe. Just because you are not experiencing the effects of the virus, doesn’t mean it is not serious. I don’t know how to explain for people they should care for other people.”
How IBD shaped her career path
Abigail says she’s unsure if she would have ever become a nurse if she did not have IBD.
“My time as a patient has allowed me to understand what it is like to be the patient in a hospital bed, giving me a deep sense of empathy. While I have never found myself in the condition most of my critically ill patients are in, I remind myself that it could be me or a loved one in this hospital bed every day.”
Abigail told herself after her Crohn’s diagnosis that she may have Crohn’s disease, but it does not have her.
“There have been moments where I felt the disease definitely owned me, but ultimately reminding myself that this disease does not define who I am creates a sense of motivation to become who I want despite my health obstacles.”
As of now, Abigail has not received the COVID vaccine as a frontline ICU nurse in St. Louis. She’s anxious to get her first dose as the pandemic battle rages on.
This article was sponsored by SmartTab. All opinions and thoughts are my own.
The future of IBD care and treatment is constantly evolving and there’s a lot of hope on the horizon for the patient community. Think back to the moment your physician discussed starting a biologic for the first time and how daunting it was to imagine giving yourself an injection or getting an infusion for the rest of your life. It’s a heavy burden to bear for many reasons.
This is where SmartTab comes in. SmartTab is a digital medicine company focused on drug delivery and improving patient care, comfort, and compliance. Their main application, the InjectTab, would give people the option of using the current syringe or autoinjector used to give biologic medication or instead have a person swallow a capsule that would deliver the active ingredients to either the stomach or the small intestine. This initiative is making waves in a big way in both the patient, pharmaceutical, and technology industries. SmartTab was recently named a Tech Crunch Disrupt 2020 Top Pick.
As someone who has been giving myself injections for over 12 years, this is music to my ears. My next question was what this means for those on infusions.
Robert Niichel, Founder and CEO of SmartTab, says, “We will start with the biologics deployed through a syringe and needle and then move to biologic infusions. Imagine if you take that infusion dose and instead take a smaller dose of the same medication as an ingestible capsule once a day. You now have reduced the amount of drug to a daily amount, side effects would go down because you’re not having to process this entire bolus and keep in mind that some of these drugs, no matter what it is, when you have an infusion, whether it’s to treat Crohn’s or receive chemotherapy, your body has to process that out through the liver or the kidneys. It’s stressful on the metabolism and the organs. Our goal, is that one day, regardless of whether it’s an infusion or an injectable, that you’ll take those drugs via an InjectTab capsule.”
Keeping patients in mind every step of the way
SmartTab is determined to limit the anxiety associated with managing diseases like Crohn’s and ulcerative colitis. The diagnosis and living with a chronic illness can be challenging to cope with, no matter how many years you’ve had it. It’s exciting to think what the future will hold for the IBD family.
“If physicians could go to people and say, we are going to start you on a biologic, you will take one capsule, every week, that’s a lot less of a burden than finding out you need to give yourself injections or spend hours with an IV getting an infusion. Your compliance goes up, patient outcomes, go up. At the end of the day, we’re trying to figure things out so people can lead better and more comfortable lives,” said Robert.
Getting InjectTab FDA-approved
SmartTab has the technology of the capsule finalized and they are starting a pre-clinical animal study next month. The InjectTab will inject an active ingredient into the side of the stomach.
“We will then do blood draws to collect the different levels of the active ingredients. Once that is complete, we will move on to human clinical trials and then onto FDA clearance, meaning approval of a device. Once we have that clearance, then we can combine our InjectTab with other active ingredients. Then we would seek out strategic partners to combine a prescription drug with our InjectTab. We would then do human studies.”
A lot of the heavy lifting for the actual technology has been completed, now it’s all about the clinical studies. Robert says the good news is that they’re not working on getting a new drug approved, since existing biologics will be used with the InjectTab technology.
“We believe that five years from now, if you take a biologic, you will no longer need to be doing a self-injection, there will be more options than syringes or needles to get your medication. You could just take a capsule. Whether it’s once a day or once a week, it will be as easy as taking your vitamins and moving on with your day.”
The cost benefits of a capsule vs. an injector
Right now, autoinjectors are typically hundreds of dollars. The InjectTab will range from $10-$50 a capsule, so right away there’s a significant cost reduction per use.
Robert says SmartTab is really counting on the insurance companies to look at this and say they’ll reimburse for the technology to deploy the drug because now patients are compliant and have reduced office visits and disease progression that can lead to hospital stays and surgeries.
SmartTab is currently in talks with several pharmaceutical companies, because that is the path to commercialization and making InjectTab a game changing reality for patients. Initially, the capsule technology will be available in the United States and then Europe. InjectTab will be geared towards the adult population first.
Life with IBD can be a tough pill to swallow, but the future possibilities surrounding InjectTab may prove otherwise. As someone who has given myself injections for more than a dozen years, this type of technology blows my mind in the best way. When my GI walked into my hospital room in July 2008 while I was battling an abscess the size of a tennis ball in my small intestine and he told me I had two options—Humira or Remicade, I was devastated. I didn’t want to give myself injections and I didn’t want to sit with an IV in my arm and feel sickly. It was a lot to process then and is still not always easy now. Hats off to companies like SmartTab innovating and changing the landscape for the future of IBD and beyond. As a patient, it means the world to me to see the tireless work going on behind the scenes that will change the future for those living with Crohn’s disease, ulcerative colitis, and other conditions.
Interested in learning more about IBD innovations? Check out the virtual IBD Innovate: Product Development for Crohn’s and Colitis conference November 17-18. Register here.
Click here to learn more about Tech Crunch’s Top Picks for 2020.
If you live with chronic illness, you may often find you sugarcoat your struggles. For 26-year-old Marissa Spratley of Maryland, this is nothing new. She battles Crohn’s disease, psoriatic arthritis, ankylosing spondylitis, and interstitial cystitis. She manages her conditions with Stelara and sulfasalazine. This week she openly shares what she wishes healthy people knew about life with IBD. I’ll let her take it away.
In the chronic illness community we all know how incredibly difficult it is to have Inflammatory Bowel Disease (IBD), or any other chronic illness. We know what it feels like to get hit with a wave of fatigue so hard you have to lay down immediately. We know what it feels like when our gut is on fire from something we ate. We know what it feels like to have nausea so badly all we can do is curl up in a ball on the bathroom floor and cry. We know these things, yet when we communicate with a healthy able-bodied person, we downplay our struggles and pain.
Why are we afraid to be honest about how much pain we’re in on a daily basis? Is it because we don’t want to make others feel bad for us? Is it because we don’t want to show weakness? Or maybe it’s because we feel like by explaining how much we suffer on a regular basis, people might know the truth about us. That even though we are incredibly resilient, we live a hard life. We struggle and we cry and we ache and there are days where we wish IBD didn’t exist at all.
The truth is, hell yeah we are strong. But we are also weak, and we are tired. We are exhausted from always having to be strong in the face of pain. We are sick of having to downplay our symptoms and our suffering to make the healthy, able-bodied people around us feel less uncomfortable. We are tired of saying, “I’m good,” when someone asks how we’re doing and we really want to say “I feel like death.”
So, in the spirit of honesty and opening up to the very ableist world around us about what it’s like to live with IBD, here are four things people with IBD wish healthy people knew.
There are days when it hurts just to breathe.
No, I am not being overdramatic. Yes, IBD affects more than just your gut. There are days when we wake up and everything about us aches. The way I describe it, is that I feel like I just got hit by a bus. My whole body aches deep in my bones, and it can take me an hour just to get out of bed and stand up straight. Those days are some of the hardest because on the outside we look perfectly normal. Please remember that not all illnesses are visible to the eye.
Good intent doesn’t always mean good impact.
We know you’re just trying to help when you make suggestions about things we could do to try to feel better. But the truth is, we know our bodies better than anyone else, and trust us when we say — if there was something we could do to make us feel better, we’d do it. When you comment about things we should try (like juicing or yoga or going paleo), it makes us feel like you think we aren’t doing enough to feel better. Our healing and health are our business, and while we know you care, if we want your help or advice, we’ll ask for it. We appreciate you understanding this.
Having a chronic illness is really hard on our mental health.
IBD is hard, period. Folks with chronic illnesses not only have to struggle with our physical health, but IBD also has a huge impact on our mental health. Being chronically ill makes you question a lot about yourself — Am I a burden to those around me? Am I worthy if I can’t work? Does my chronic illness make me hard to love? It also makes you question a lot about your worth — Am I lesser than because I can’t work as long as healthy people? Will employers not want to hire me? Do I bring enough to a relationship? These are all real questions I’ve asked myself at one time or another, and I can guarantee they are things other chronically ill folks have thought about as well. The way that IBD can affect your mental health is one of the most challenging parts of being chronically ill, because it is not talked about. So, what can you do to help us with our mental health? You can remind us we are inherently worthy, no matter how “productive” we are. You can remind us that you love us for who we are in our hearts, and not what we can do with our bodies. That means more to us than we can even put into words.
Ableism affects the chronically ill, too.
Many people with IBD and chronic illnesses struggle to claim themselves as disabled, and this is something I could go on a tangent about. But here’s what you need to know: IBD affects our bodies in ways that make us less able, or disabled. The truth is, in the able-bodied centric society we live in, we believe it is offensive to call someone disabled because it means they can’t do something. However, to the actual disabled folks in our community, it is not offensive at all. We own the fact that we can’t use non-handicapped restroom stalls or walk up stairs. We are not afraid to say that there are tasks we cannot do as chronically ill, disabled individuals. It is our ableist society who thinks the term disabled is offensive. It is the ableist mindset that believes by saying someone can’t do something, we are being hurtful. Because to the chronically ill and disabled community, we know that our disabilities do not affect our worth. We know that our health does not affect our worth. But now we need you to know that, too.
To all my IBD and chronic illness folks: I see you, and I hear you. I hope that the next time you have a conversation with someone and you want to be real about how much it truly sucks sometimes, you can send them this article.
To the healthy, able-bodied folks reading this article, thank you for showing up and reading to the end. I hope you learned something new about how to better support your loved ones with IBD or chronic illness.
Connect with Marissa on Instagram: @mindbodycrohns
I remember the first time I put glasses on in fourth grade and no longer saw the world unclearly. I can still recall the first time I wore contacts sophomore year of high school and experienced how crisp life is supposed to look. Prior to glasses and corrective lenses, I thought my vision was how everyone else saw. I recently came across a discussion on Twitter by Jessica Caron (ChronicallyJess) about how you would describe your IBD journey at the beginning—in one word. One woman, Emily Morgan (@EmMorgan27) replied with the word blurry.
That response got me thinking. It’s spot on for so many reasons. Take yourself back in time to the first week you were diagnosed with Crohn’s or ulcerative colitis and the clarity you’ve gained and continue to gain with each year that passes.
When I was diagnosed with Crohn’s in July 2005 at age 21, I remember sitting almost stoically in my hospital bed because I was so overwhelmed by not only what the next day or week would bring, but the next hour. All my plans, all my goals, all my dreams that were once crystal clear became incredibly hazy. The thought of thinking beyond that moment almost made me feel dizzy with dread.
What does this new world of chronic illness look like?
What would be possible with IBD? Who am I now? How has my identity shifted? Where do I go from here? What will my friends think? What will future employers think? What’s it like to be on medication for the rest of my life? Will anyone ever love me? The list goes on. The vision that I had the first 21 years of my life was forever tainted.
But as the years rolled by, I came to realize the rose-colored glasses I wore prior to diagnosis didn’t give me that clear of a reality about not only my own life, but those around me. Prior to Crohn’s I just expected everything to go my way. Prior to Crohn’s I felt invincible. Prior to Crohn’s I didn’t think twice about my health and what a gift it was.
Now life is anything but blurry
Looking back over the past 15 years, my vision of life with Crohn’s is anything but blurry. As I grew older and more mature, this disease of mine made me see the world clearer than I had ever before. The darkest days have led me to the brightest, shining moments. Nothing is taken for granted. Nothing is expected, but rather overly appreciated. This disease forced me to see the strength inside myself and the resilience that I never knew existed. This disease has demanded a lot out of me and still does, but it’s enabled me to discover a newfound gratitude for life’s simplicities and provided me with superhero strength vision of who is genuinely in my life, and who is not.
It’s gotten to the point where I don’t even know if I would have been the same adult if I never got Crohn’s. My IBD is not my identity, it’s only a part of who I am. Now I credit not only my contacts, but my Crohn’s, for improving my vision.
I paid for my groceries and casually pushed my cart full of food through the automatic door when I saw it. The bathroom where I experienced one of my scariest and most painful moments. The bathroom I had to run into after pulling over on my way home from work because I was in such debilitating pain, I couldn’t handle sitting upright in my car to make it the extra five minutes home. The bathroom where I lost all feeling in my arms and legs and where my fingers locked into painful contortions. I couldn’t even hold my phone to call my boyfriend (now husband) to tell him we needed to go to the hospital. The bathroom where I unknowingly happened to call my mom after accidentally hitting “Recent Calls” with my elbow. All she heard on the other line when she answered was me screaming. She didn’t know if I was getting raped, she didn’t know what the hell was going on and she was in a different state. God was watching out for me because she was able to call Bobby and let him know I needed help and I needed help fast.
He rushed to the grocery store and whisked me out of the bathroom and straight to the hospital where I found out I had a bowel obstruction.
I’ve been going to this same grocery store for nearly seven years. It’s been nearly six years since that dramatic experience occurred. But even now, five years into remission, I always go out the other doors because seeing that bathroom is a trigger. A trigger to one of my lowest points in my patient journey with Crohn’s disease. A trigger that caused my IBD to act up right in that moment this past week.
I was forced to go out of the grocery store that way as part of COVID-19 safety procedures to keep all incoming traffic through one set of doors and all outgoing traffic to another.
Coping with psychological triggers
When those of us in the IBD community hear the word “trigger”, food usually comes to mind. We casually say “oh that’s a trigger food for me”, but we often don’t pay much attention to the physical triggers in our lives that can exacerbate our symptoms—such as locations like that grocery store bathroom, relationships with certain friends and family members, the pressure of being enough and doing enough in comparison to our peers, the list goes on.
I interviewed Dr. Tiffany Taft, PsyD, MIS, a Research Assistant Professor at Northwestern University Feinberg School of Medicine, and a fellow IBD warrior to get some clarity on this subject and to learn more about what steps we can make right now to protect our mental health and prepare for the unknown.
NH: As chronic illness patients–how can we best navigate triggers that instigate a stress response? (Other than avoidance)
Dr. Taft: “While avoidance feels like the safest option when it comes to situations that trigger our stress response, it simply kicks the can down the road in terms of the effects these situations have on our bodies. People living with chronic illness may collect multiple situations that trigger the stress response – doctor’s offices, hospitals, certain tests or treatments, making avoidance very risky if it means not managing the illness and staying healthy.
Try the “Exposure Hierarchy” exercise: Dr. Taft recommends making a list of activities or situations that are stressful, ranking them from the least stressful to the most stressful and picking 10 things. Rate those 10 things from 10 to 100 (100 being the worst). After making the list, she has patients start with number 10 and practice that task several times over the course of a week.
Before that, though, she teaches relaxation strategies such as deep breathing and grounding to help when the anxiety goes up. She says, “With repeated exposures to the feared situations and working through the anxiety, each time we do activity 10 again, it will feel easier and confidence grows. Once the patient is ready, they repeat with 20, 30, etc. until we get to the dreaded 100 which will actually feel less scary because of all the other work we did before.”
**NOTE** If you feel you have symptoms of Post-Traumatic Stress Disorder (PTSD) which include vivid nightmares, flashbacks, and feeling on high alert most of the time, you should seek treatment with a trauma therapist. The good news is research on treatments for PTSD show they are just as effective when delivered via tele-medicine.
NH: Can you explain (in layman’s terms) what goes on when we’re “triggered”?
Dr. Taft: “Triggered is setting off our body’s fight-flight-freeze response, and results in a cascade of physical sensations and emotions. The most common ones are muscle tension, sweating, shallow breathing, and heart racing. Unfortunately, this response can also trigger our guts to start acting up because of the brain-gut connection. It’s a completely normal process but when you have IBD it can trigger symptoms. Your thoughts may be all over the place and littered with “what if’s” and “I can’ts”. Your mind may revisit the worst aspects of past experiences or come up with even more catastrophic possibilities in the future.”
NH: As people with IBD–I know many of us are nervous about flaring and needing to be hospitalized all alone during this pandemic, while being at greater risk for getting COVID. Do you have any advice on how to cope/mentally deal with that worry/concern?
Dr. Taft: “Facing a flare and hospitalization was stressful in the “before times” so facing this during COVID19 is an extra level of stress. While we have video chat, it does not replace the comfort of physical closeness and touch we would get from supports who could be in the hospital with us. The good news is hospitals have figured out COVID quite well and the odds of contracting it while hospitalized for IBD are lower than they were at the start of the pandemic.”
If you’re facing hospitalization, think about your resilience in these circumstances. There were probably times you felt like you couldn’t handle it, or it was never going to end or get better, but here you are today reading these words. You made it through. It may not have been pretty, it was probably incredibly hard. Anxiety has a great ability to negate our memories of how much we’ve navigated in the past.
Feeling anxious? Do this: Write down the ways you coped before, what worked and what maybe didn’t. Evaluate your thoughts about being hospitalized. Are they accurate? Are they helpful? What are some alternatives that could help you feel less anxious? If that doesn’t work, sit with the anxiety, and try some deep breathing to calm your nervous system. The sensations will likely pass and then you can retry evaluating your thinking when you aren’t feeling so keyed up.
NH: What advice do you have for people during these already complicated and challenging times when it comes to managing mental health?
Dr. Taft: “This is truly a unique time in that we are all in this COVID19 boat together. We all came into the pandemic with our own life challenges, and those probably haven’t gone away and even may have been made worse. We’re coping with a lot of information, new rules every other day, grim statistics, and people bickering over who’s right or wrong. I’ve told every patient I see to turn off the news. Get out of the comments on social media when people are arguing the same points over and over.”
Steps you can take in your day-to-day: Dr. Taft advises not to spend more than 15 minutes a day on the news, so you can stay informed but not get into the weeds. Take social media breaks, especially if your feed is full of the same tired arguments. Focus your attention on meaningful activities that align with your values. Those are what will bring you some stress relief. And those are unique to you, so no list on the internet of how to cope with COVID is going to solve everything. Sometimes these lists make us feel worse because we’re not doing most of the recommendations. Be as kind to yourself as you would be to your best friend or a beloved family member. Nobody has it figured out right now even though some people like to say they do.
When I started my blog, Lights, Camera, Crohn’s, four years ago, my main mission was to be the voice I desperately needed to hear upon diagnosis. As I reflect on my 15 year diagnosis anniversary, I thought it may be helpful to give you a behind the scenes look at some of my email archives from 2005…days after finding out I had Crohn’s disease. I’ve never shown these to anyone (other than the recipients, of course!)…but my hope is that in sharing private feelings, you’ll be able to see how my perspective about life with IBD has shifted and evolved since I was a 21-year-old girl feeling up against the wall with nowhere to turn.
Photos taken in May 2005 (prior to diagnosis) and September 2005 (while on 60 mg of prednisone).
This article is dedicated to the newly diagnosed. We’ve all been in your shoes. What you’re thinking. What you’re feeling. What you’re struggling with. We get it. It’s not fair to compare where you are in coping to someone like me who has been dealing with Crohn’s for 15 years and been in remission for nearly five.
Here are snippets from my emails to friends. Reading the pain in my words and re-living this difficult time can be a trigger, but reflecting and seeing how far I’ve come is also incredibly empowering.
“I’m having a really hard time with this, harder than I ever could have imagined or dreamed…and I’m having a hard time trying to act like everything is great on the exterior. I feel like I’m on the brink of a breakdown…the drugs are getting to me so much. I woke up with visible shakes this morning and have been shaking all day. My moods aren’t me. I feel like I am a different person and that as much as I want to be the old Natalie, it’s just so hard to wake up smiling and happy. I’m getting tired of my family constantly asking me if I’m doing ok and feeling ok and everyone staring at me while I eat…I just feel like a pity case to so many people. I feel so alone in all this. I’m trying to be upbeat…and I know that it is going to take time to get acclimated to the lifestyle changes and everything, but right now I’m just having a difficult time figuring out who I am and where I’m supposed to be in life. The insomnia has left me up every night just thinking and wondering what the future holds and if I am ever going to feel normal again.”
“I try so hard to be strong and tough about this and it just all stays bottled up and I just started crying and am having a hard time stopping. It’s just so hard. I look at pictures and think back to even graduation time and it just freaks me out that I went from living a carefree, healthy life…to this. I know it is something that I will always have and that I have to get used to it…but it’s hard for me to handle at times. I don’t mean to complain or worry you or anything, I just feel as though I need to get out some of this frustration before I go to bed. I’m scared of getting sick again and having to go in the hospital sometime again…and I just feel like I can’t go a day without a thinking about all the what ifs. You know I analyze so much…haha…it’s like a living nightmare!”
“I’m sorry if I talk about this too much. I’m sure it isn’t the most appealing or attractive thing to have to hear from your gf…but sometimes it becomes a little overbearing on me…and I can’t hide my fears when it does. I mean I refuse to let this change who I am and the life I will lead, it’s just at times it seems so much bigger than me, and so much larger than life. I know I have been complaining a lot about my puffy cheeks and stuff…and I know that prob gets old…I just get so self-conscious about it…and it just sucks that I have exactly 2 more months left on the steroid. As my dosage gets lower and lower the side effects should stop and start to go away…I’ll believe it when I see it! I guess it’s just scary to me to see the effects of a drug that are helping me on the inside and hurting me on the outside. I just want to look the same to you as I did the last time you saw me.”
“What I won’t ever apologize for is this summer, because I was going through a living hell, and I saw which friends were there for me and which weren’t. I was ridiculously ill from June 5th-my bday (August 24) and you were angry with me for not keeping in touch. I couldn’t even stand to get myself a glass of water for weeks and was hospitalized for days. I never heard anything from you. I know that people handle those types of situations differently… but that was the hardest thing I’ve ever gone through in my life, and I really needed a strong support system. Battling with a disease and feeling like I completely lost myself has made me have to be a little selfish these past few months. I’m just coming to grips with it all now and thank God I’m feeling well…but it is still an adjustment and has given me a complete different perspective on life.”
You guys. I’m sitting here crying. I’m that girl. I wrote those words. That was 15 years ago and thinking about that time still feels like a knife in my chest. Even though this disease has enabled me to gain so much gratitude and perspective, it still robbed me of a lot. It still hurts…sometimes more emotionally than physically these days since I’m in remission. These diagnosis anniversaries stir up a lot of memories. While I choose to think of it as a time to celebrate another year of taking this disease on with all the strength I can muster, it’s also a time that takes me back to some of the most challenging and difficult moments in my life.
I colored this in my hospital bed after being diagnosed with Crohn’s.
I wish I could hug that girl and tell her it was going to be alright. The career, the love, the family…it would all happen. If you’re in that difficult space right now coming to terms with your newfound identity following diagnosis or getting over a flare up, please know this disease ebbs and flows. It’s not a constant. The good and the bad moments are fleeting, but your resilience and your confidence in coping becomes so much a part of who you are, it’s hard to recognize who you were before.
This blog post is sponsored. All thoughts and opinions are my own.
Coping with chronic illness is complicated. When it comes to IBD, no two people have the same experience, but there are often many parallels and overlaps. Crowdsourcing is now being used to understand how to best treat chronic conditions, such as Crohn’s disease and ulcerative colitis. By empowering patients from all around the world to share information on a large scale and leveraging the power of advanced artificial intelligence to analyze and organize that data, StuffThatWorks is revolutionizing how medical research is done.
Chances are you’ve heard of the popular app, Waze, which allows people to build maps and share data with other drivers to bypass traffic. It’s an app my husband and I use all the time! One of the members of the Waze founding team, Yael Elish, started thinking about how crowdsourcing could be used to understand how to best treat chronic conditions. Yael’s daughter started to struggle with a chronic health condition and wasn’t responding well to treatment. Her illness was taking a heavy toll on the entire family.
“It seems like almost everyone dealing with an ongoing medical condition dedicates endless hours researching, speaking with others, and scanning groups in search of something that can help us feel, and live better. We want to know if there are treatments that will work better, if our side effects are unusual, or if diet or lifestyle changes could make a difference. We look for people like ourselves and seek to learn what works (and doesn’t) for them,” said Elish, Founder, CEO, StuffThatWorks.
When it comes to managing chronic illness, it’s much like trying to find the needle in the haystack—the one treatment that will work best for us. The power lies with patients. We are the people who have tried various treatments and know what’s worked best. Crowdsourcing puts patients in the driver seat. Large amounts of information can be gathered from millions of people worldwide.
“I want people to feel empowered – and validated. To realize that their point of view and experience is not only legitimate but is extremely valuable to helping the world understand illness and treatment effectiveness,” said Elish. “I want StuffThatWorks to be a place where patients can share their collective voice and be heard by the medical community. Where patients themselves are able to impact and drive the research that is being done about their condition and play an active role in finding solutions that will help everyone with their condition feel better.”
StuffThatWorks Currently Serves 85 Condition Communities
As of now, more than 125,000 people are contributing members within 85 condition communities. Over 6.5 million points of data have been shared! One of the biggest communities (fibromyalgia) has over 15,000 members. PCOS has 12,000.
StuffThatWorks is looking to grow the IBD community.
Right now, there are three communities, IBD in general, ulcerative colitis, and Crohn’s. Of these three, Crohn’s is the biggest with 729 members who have reported their experience with 270 treatments. The ulcerative colitis community has 409 members and 155 treatments in the database.
On average, Crohn’s community members report they have tried 6.2 different treatments, and 37% describe their Crohn’s as “severe.” By sharing treatment experiences, our community members can use data to help one another figure out which treatments are best for different subgroups of people.
“The power of this database is that it can reduce the years of searching for the right treatment or combination of treatments. Our platform lets people explore how different treatments work effectively together, and we’re able to analyze everything from surgery and medications to alternative treatments, changes in diet, stress reduction and more,” said Elish.
StuffThatWorks is in a unique and powerful place to help advance the research on COVID and understand how it impacts people with different chronic conditions. Who is more at risk? Does the virus present differently in people with certain conditions? Do certain treatments work better/worse for them?
“We are currently prioritizing COVID-19 research by inviting everyone with a chronic condition to contribute to the research by answering questions about their experiences related to the coronavirus pandemic, even if they do not have the virus. We are also inviting all current StuffThatWorks members to fill out the coronavirus questionnaire and contribute to this new research,” said Elish. “We’ve also set up a dedicated coronavirus discussion forum, where doctors are answering questions and providing important information about the latest research.”
In a time when many people are feeling anxious and alone—discussion boards are helping to bridge the communication gap and allow for people to connect with one another. StuffThatWorks community members are seeking support about decisions: Should I cancel my doctor’s appointment? How much am I at risk if I am taking immunosuppressants? How can I help my partner understand my anxiety about coronavirus?
The world is suddenly realizing that crowdsourcing is the holy grail of how to gather health care data on a large scale. The real-time nature of it is particularly important, and the ability to get data from such a vast number of diverse sources.
Crowdsourcing research is limitless: The hope for the IBD community
You’ve heard the adage “strength in numbers”. Once large numbers of people with IBD sign up and become members on this free platform, everyone from the newly diagnosed to veteran patients can find something new and continue to evolve and learn about their patient journey.
“I want people with IBD to feel empowered – that this community is THEIRS, not OURS – and that they can determine what it’s used for and how it can be most helpful. They can add new research questions, post personal discussions or experiences and ask others specifically what works and doesn’t for them,” said Elish.
As members of the IBD family, by joining this platform we immediately become part of a supportive community where we can talk with others just like us, either collectively, or one on one, about how we manage and handle the day-to-day with our IBD.
Driving Research through Patient Reported Outcomes
Patients like you and me have power to influence the research direction of the medical world. We are all a piece of the puzzle and play a critical role in helping with the future development of medications and treatments, and hopefully one day a cure.
So much medical research is done using small groups and funding for large-scale research is extremely hard to come by. The opportunities are endless with crowdsourcing, in terms of the research that can be collected and the solutions we as patients can only provide.
Whether it’s shortening the amount of time it takes to get an IBD diagnosis or helping people find optimal treatments quicker, by sharing our experiences we gain invaluable insight into improving our quality of life and managing our chronic illness. It’s truly a win-win for everyone involved.
Check out StuffThatWorks and sign up for free as a member. Take part in building a knowledge base aimed at figuring out which treatments work best. Your story. Your experience. It’s powerful and it all matters.
Life was much different for Michelle Manasseh and her family of Orange County, California, one year ago. For starters, her daughters had not been diagnosed with IBD and we weren’t living in the middle of a global pandemic. This week, Michelle shares what it’s like being a parent of two kids newly diagnosed with Crohn’s Disease, while trying to navigate everything that is COVID-19.
It hasn’t even been nine months since Eve (age 11) and Ruthie (age 9), BOTH of our kids, were diagnosed with Crohn’s, and BOOM—COVID-19 happens! So yeah, let’s pile pandemic on top of chronic illness, on top of school being cancelled indefinitely, on top of no contact with any. other. human. soul. for. weeks. on. end. What do we call this? Grief.
There’s no other name for it. Our whole culture is grieving. One important lesson that the kids’ diagnosis has taught me is how to grieve. And I mean how to really grieve. Parents of kids with IBD know a thing or two about grief. We went through it when our kid was diagnosed, when the next kid was diagnosed, when the flare hit, when the medication changed, when the game plan failed. It comes in waves and it comes out of nowhere.
Our culture has taught us to numb and distract – don’t do it! Don’t miss the chance to be refined by the pandemic fire. Yeah, it’s uncomfortable, but we need to let ourselves feel emotions so we can come through this with true peace and wisdom. If we avoid the fire or pretend it isn’t there, we are doing ourselves – and our kids – a disservice. We need to teach them that grieving is normal and ok. It’s ok to cry. It’s ok to be angry. It’s ok to be sad. We need to remind them that we are all feeling the same things and we will get through it together.
We can’t fix this
Something I realized pretty quickly after my girls were diagnosed with Crohn’s Disease is that I couldn’t fix it. There wasn’t a single special diet, mix of herbs, supplements, exercise, tincture, oil, weed, seed, handstand, or flip that could fix it. And this was a painful truth to learn. As a parent, our natural instinct is to fix things for our kids. We’re stocked with band aids, kisses, and unsolicited advice.
Crohn’s is beyond my control. This has been very humbling for me. Likewise, COVID-19 is humbling our culture. I think it’s revealing a huge blind spot. With the rise of self-proclaimed health experts and medical misinformation circulating broadly across our connected culture, people have believed that they can fix all their own medical problems. Now that blindness is obvious. Just as IBD is not a stomach ache, COVID-19 is not a common cold. We can’t fix it. People are feeling helpless and turning to doctors in desperation. I hope a silver lining is that it invigorates the medical profession and brings to our culture a profound respect for doctors, nurses, and all healthcare workers.
For the first time in several decades, the whole world is living under a bleak cloud of uncertainty because of COVID-19. A similar dark cloud rolled over our home last summer when Eve and Ruthie were diagnosed with Crohn’s. I learned that with great uncertainty comes deep discomfort. It forces us down tunnels of self-examination, to take stock of our lives and our purpose. It illuminates our utter dependence on God.
Crisis also has a way of illuminating our deep-seated motivations. Who are we seeing on TV and across social media lately? People with the purest motivations. Doctors. Actors reading sonnets and bedtime stories. Public officials creating guidelines to protect us. Musicians playing across balconies. This is a great teaching moment for our kids. Become a financial advisor to help people. Be a writer to reveal truth. An artist to bring joy. A doctor to bring healing. A musician to bring beauty. An actor to tell stories that need to be told.
What can we do?
Parents – we are navigating a global pandemic with immunosuppressed kids with chronic illness. Let’s be honest, we have massive fears. I had to bring Eve in for an MRI two weeks ago. In my mind, the machine was basically a plastic tube crawling with yellow spindly germs. Never mind a mask – why didn’t someone plastic wrap my child?!?
We are dealing with a heck of a lot, and none of us is perfect. I’m quite certain that my kids will never again ask to be home schooled. The main skill we’ve mastered so far is how to do a Zoom conference while driving to infusions! On Friday night I sipped wine while the girls smeared Nutella on crackers after eating only half of their dinner. Two days later I inadvertently put Eve’s daily Miralax in Ruthie’s water bottle. (Oh gosh, is she flaring!?!) I, for one, would relish a shirt that says “WORK IN PROGRESS” printed in bold neon letters.
No, we aren’t perfect, but we do have something to give. We have a unique perspective and experience. We can be a voice. More importantly, we can be an ear—for our kids and for others. Call a friend and listen. Tell people the good things you’re thinking about them. Tell them you love them. And very importantly, take the time to thank your kids’ teachers, doctors, and nurses for all they have done and continue to do—they are real life heroes.