It’s no surprise 2020 was a dumpster fire for many reasons. It was a year of challenges, struggles, worries, frustrations, loneliness, and sadness for many. I don’t expect things to drastically change in 2021, as we’re still in the thick of the pandemic, but I do have some wishes for the IBD community as a whole as we look to the future and beyond.
I hope you…
*Live in the moment. Rather than get lost in the past and the way things used to be or where you could be or what could happen, focus on the now and the beauty that is still around us.
*Advocate for yourself. Use your voice and speak up about how IBD impacts your health, what changes need to be made in your care, and what you need to thrive.
*Don’t use social media as a crutch. While social media can be an incredible connector, especially as we stay home and remain socially distant, try not to base your reality off of it. It’s a highlight reel. You know which accounts and which posts cause you to feel a certain way. Protect your mental health and overall well-being by limiting the amount of time you spend on social channels.
*Go after that job, love interest, dream of having a child. Stop thinking you don’t deserve or aren’t capable of achieving your goals because of your chronic illness. The path to reaching the goal may have some detours or look different to you than expected, but go for the gusto.
*Be proactive with managing your health. Stay on top of all medical appointments, despite the pandemic. As chronic illness patients it’s imperative we manage our care and make it a priority. Leave no stone unturned. Give yourself peace of mind by knowing you did all you could to give yourself the best quality of life.
*Have the hard conversations. Confrontation and difficult talks aren’t anyone’s favorite, but the longer you let something stew, the worse it’s going to be on everyone involved. Internalized stress will only exacerbate your symptoms.
*Celebrate the small victories. These are difficult times, make sure you stop to realize all you are doing and all you’re going through. You may feel stagnant or like you’re not accomplishing much, but each day you’re learning something, growing, and brightening someone’s day without even knowing it.
*Get outside more. Fresh air does a world of good. Even in the winter months, when it’s cold, bundle up and try and go for a short walk for a change of scenery. Clear your mind and take in your surroundings.
*Stop feeling guilty for saying no. This entire pandemic our community has had to feel like the “bad guys” by saying “no” to social gatherings and functions. If you have to second guess something or if a decision doesn’t sit well with you, trust your gut. Don’t worry about disappointing anyone but yourself. Your health and well-being comes first. If someone wants to judge how you manage your safety, let them.
*Are mindful of what gives you energy and what zaps it from you. Focus on the people and activities in your life that make you feel refreshed, alive, and at home. Not everyone is going to love you, not everyone is going to mesh with you, don’t force it. Love the people who love you hard and don’t worry about the rest.
*Stop the comparison game and focus on all you bring to the world as an individual, despite your illness. Rather than feel like peers have what you need whether relationship wise, lifestyle wise, etc…know that nobody’s life is perfect. Everyone has their own struggles. Chances are you just don’t know about them. Practice gratitude and mindfulness exercises to keep yourself grounded.
In many ways our IBD has prepared us for coping with and handling with much of this pandemic. Despite the unknown before us, have confidence better times are ahead. With the vaccine available, hope is on the horizon.
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.
All it takes is one experience to alter how you respond and react to the way you receive medical care. For me, it was July 2008. I was getting admitted for an abscess the size of a tennis ball in my small intestine. No one could start my IV. I was in excruciating pain. It took eight tries to get an IV going. EIGHT tries. It was so emotional…and aggravating. It took two nurses, a rapid response nurse, and finally an anesthesiologist to get the job done. For many in the IBD community, we have medical PTSD. A term not to be taken lightly. It’s moments like the one I mentioned before that have scarred me in a way that impacts every single IV I receive. I get anxious, my mind reverts to the past trauma, and I don’t trust that the person taking care of me will be able to get me in one stick.
While this may not be fair to the medical professional, in my 15-plus years with Crohn’s, I can attest to the fact that no matter how many times you say, “you have bad veins” or that you’re a “tough stick”, you’re typically told “it will be fine” and that they “hear that all the time.”
This week—I offer up some tips for communicating your needs when getting blood draws and IVs. Sometimes it can be overwhelming when you feel as though your fears or worries are being downplayed. You may not want to be “that patient”—the one who speaks up and demands the care they deserve but are scared to ask for. This also goes for parents who are watching as their child may be stuck over and over and over again, and not knowing when the right time is to speak up and say something.
Ask for a butterfly needle for blood draws. As soon as you sit down to get your blood drawn, casually say you have tiny veins, and a butterfly works best. If the phlebotomist says you don’t need one (yes this happens)—say you have IBD and get blood draws all the time and know what works best for you, especially considering the number of vials that are generally taken in one sitting.
Give each person two tries. Once I experienced eight tries for an IV, I instituted this rule for my care from that point forward. I usually tell the nurse/phlebotomist nicely at the start that I give each person two tries, and after that someone else must try me. If they successfully give me an IV in one try, I make sure to give them kudos and thank them.
Know your spots. If you have bad veins like me, you know where your “good vein” is. If the antecubital is not working, go for one in your hand. If it’s an IV, try and do your non-dominant hand, as the placement can be challenging if it’s in for multiple days.
Ask the medical professional to break out the vein finder. This can save everyone (not just the patient) some time and energy. This has worked wonders on me in the past to help healthcare professionals locate and access which vein is best to go for. It’s completely painless. It’s like x-ray vision that shines light under your skin and shows the veins below.
Take advantage of numbing cream for pediatric patients (adults can also ask!) While the cream can be great for taking away the sting of the needle, it’s important to keep in mind it can take 30 minutes to activate (which feels like an eternity while mid-flare) and can also make the patient more anxious as they wait. The medicine is also known to shrink the vein underneath as well, which can make getting the IV started a little more challenging. You may consider putting a lidocaine cream on at home before you head to the hospital if you have some available.
Be hydrated and warm. If you anticipate the need for an IV, try and drink as much water as you can ahead of time. Have a heating pad or warm pack placed on your veins. Even putting the warmed-up hospital blankets around your arm prior to the stick can help get you prepped.
Breathe deeply. Try not to watch the needle going in. Focus on a focal point on the wall or go to your happy place to distract yourself from the initial prick of the needle.
The most important thing of all is to be your own best advocate. Don’t worry about hurting feelings or coming off as high maintenance. Offer up as much intel you can in a constructive and calm way as possible. Once you’re diagnosed with IBD and experience the hospitalizations, scopes, surgeries, scans, and lab work, you become a “professional” at being a patient and knowing your body. Unless you use your voice and communicate your needs, they may not be met. Rather than thinking of those caring for you as instilling pain or as the adversary, it’s in our best interest to work together as a team with our physicians and nurses so they can provide the best possible care and so we can build a long-lasting relationship based on trust, rather than fear.
For parents, try and stay as calm as possible and allow the medical professionals to work their magic in distracting your child and making them feel safe and at ease. Your stress level and energy (both positive and negative) will reflect onto your child. If you feel your child is being given the best possible care, try and go with the flow as much as possible. You’ll know when and if you need to speak up. Know that your child is watching. Be tactful, confident, kind, and direct if you believe something different needs to be done or tried. You are your child’s voice piece.
Through the years, whether it’s in the ER or getting a blood draw, the moment I say “I have Crohn’s disease” it’s like I just dropped major street cred. Medical professionals know when you have IBD you have to be tough as nails, you don’t have any other choice. So, when you say that—be confident that when you offer up advice pertaining to IVs and blood draws you have that going for you.
For many of us, when we’re initially diagnosed with IBD or when we flare, we experience weight fluctuations. The number on the scale may plummet during times when eating anything hurts or seems to make symptoms worse. The number on the scale may skyrocket when we’re on prednisone and not only retaining fluid, but also wanting to eat everything in sight.
Andrew Jagim, PhD, CSCS*D, CISSN was diagnosed with ulcerative colitis in 2014 after being infected with an intestinal parasite (Giardia). He managed to remain in remission for a few years until things went downhill quickly at the end of 2016. He dropped 50 pounds over the course of 3-4 months, was going to the bathroom 15-plus times a day, was running constant fevers, severely fatigued, anemic, and had little appetite. In the spring of 2017, after two weeks on TPN and several days in the hospital, he decided that a sub-total colectomy was his best option at the time. Since then, Andrew’s battle has been a rollercoaster of ups and downs, resulting in 12 colorectal surgeries.
Sports and fitness have always been a huge part of Andrew’s life—so much so, that he made a career out of it. He has a doctorate in exercise physiology, is a certified strength & conditioning specialist and a certified sports nutritionist, so he has an extensive background when it comes to understanding the important roles of exercise and nutrition for health and performance.
“Throughout my life, a large part of my identity has always been tied to my physical appearance. I’ve always been known as someone who is athletic, big, and strong with a high state of fitness. I struggled immensely during my flares and surgery recoveries when I couldn’t work out, when I looked sick or couldn’t stop losing weight. It was like I was losing a sense of who I was and who I identified with. When I looked it the mirror, it pained me to see my hard-earned muscle just “falling off” when I was too sick or weak to workout. However, I have always been determined to rebuild my body and regain what I lost.”
This week on Lights, Camera, Crohn’s—a look at the impact disease flares and surgeries can have on body composition, and how you can try and counteract the changes through diet and exercise.
A cornerstone of the disease itself is a high state of inflammation – most of which is centralized to the gut; however, this can also have systemic effects thereby resulting in widespread joint pain, fatigue and even a state of anabolic resistance within muscle tissue. Essentially, this makes it challenging to maintain or increase muscle mass during a period of high disease activity. This can be coupled with a reduction in appetite which can exacerbate body weight loss and muscle loss.
Surgeries can range from minimally invasive procedures to treat a fistula to much larger and complex operations such as removal of sections of the bowel and placement of a stoma for an ostomy. Depending on the magnitude of the surgery, patients often must modify diet and physical activity based on the recommendations of the surgeon.
These modifications will likely lead to decrements in body weight, muscle, strength, and endurance in the short-term; especially individuals who may have been highly active prior to the surgery. However, in patients who may be extremely ill at the time of surgery, the procedure may help them regain lost weight and strength as their body may finally be able to heal and recover from the inflammatory cascade brought on by IBD.
The Case Study Andrew Conducted
A year and a half after Andrew’s colectomy, he decided to schedule the second step for the J-pouch procedure. However, prior to, he decided to take advantage of this unique opportunity and conduct a case study on himself to document the changes in body composition and performance throughout the recovery process. He was curious how a surgery like that would impact someone with his fitness state as most of the literature focused on smaller or more sedentary individuals. Leading up to surgery, he had been able to resume his regular fitness routine and got his weight close to where it had been for most of his adult life.
“As seen in the figure below from my published case study, there were significant declines in body weight (-10.5%), lean body mass (-9.9%) and endurance (-40.3%) 4-weeks post-surgery. At 16 weeks postoperatively, most parameters were near their baseline levels (within 1–7%), with the exception of my peak endurance, which was still 20.4% below baseline. Thankfully, I was able to leverage my educational background and expertise in exercise physiology and nutrition to use targeted exercise and nutritional strategies to retrain my body and build my physique back up,” explained Andrew.
The balancing act of trial and error
As many IBD patients know, there are a lot of nuances, misconceptions, and unknowns regarding how diet impacts disease. For Andrew, it has been a lot trial and error to find foods that worked for him and helped him achieve his goals.
“Early in the recovery stage, just getting my appetite back and trying to eat more while not interfering with any post-operative dietary recommendations was always my goal. For me, this meant trying to eat about 2,500 – 2,750 calories and 150-170 grams of protein per day. In my opinion, these are the two most important dietary goals when it comes to regaining any weight (especially muscle mass) following surgery or during a flare. It will also help support the tissue and incision recovery following surgery”
Regarding exercise, strength training, is the most effective form of exercise to regain lean body mass following surgery. However, most colorectal surgeons (for good reasons) impose a lifting restriction of no more than ~10-15 lbs. for about 6 weeks following surgery to allow the incisions to heal and avoid the risk of hernia.
“For my larger surgeries, this was easy to abide by as I was in so much pain and was so fatigued that it was a struggle to just get dressed and ready for the day, so there was no temptation to get back in the weight room any time soon. But for the smaller surgeries, as I got closer to the 6-week mark, I was anxious to get back to my old routine. I took a very conservative approach and used a lot of alternative training techniques (i.e. blood flow restriction training, isometrics, resistance bands, etc.) to elicit an adequate training stimulus while not having to lift heavy weights and to avoid injury,” said Andrew.
Andrew’s main piece of advice about life with IBD? “Be prepared for a rollercoaster of changes to both your body composition and physical abilities throughout battles with IBD – especially during a flare or following surgery. Unfortunately this also will likely take a toll on your mental health as well, or at least it certainly did for me. However, just know that you can always get it back in time and more often than not, come back even stronger. Be patient and give your body rest when needed but otherwise keep grinding.”
Everyone has their own battles they are fighting
“I think my experience with IBD has taught me that everyone has their own battles they are fighting – even if they don’t show it. Additionally, it is also a reminder that not all disabilities are visible as a lot of people are probably unaware that I live with a permanent ostomy. I have chosen to keep a lot of my health struggles private and I think a lot of people will be surprised when they hear what I’ve endured over the past five years as I have still managed to have a successful career and not miss much work – despite all the surgeries and time spent feeling very ill.”
Andrew’s IBD journey also shifted his research focus a bit and challenged him to apply my knowledge of how to increase performance, strength and muscle mass in athletes towards a more clinical application.
“A lot of the strategies that work well with athletes can be modified and used in clinical settings as several of the benefits (i.e. increased muscle, strength, endurance, energy, etc.) may also help improve quality of life in patients will a chronic illness, those who are critically ill, or those recovering from surgery. It’s just a matter of making the appropriate modifications and fitting them to the current need,” said Andrew.
When you have IBD, the path to motherhood can look different for many. There is added stress about whether your body can create and sustain a new life successfully. There’s worries about flare ups and medications and how to stay well-managed while keeping the health of your unborn child in mind…just to name a few. For 30-year-old, Audrey Bolton, of North Carolina, adoption had been a calling in her life since high school when she stood at the airport and watched a family friend bring home their daughter from Guatemala.
She knew from that day forward, she would adopt one day. What she didn’t know is that she would be diagnosed with Crohn’s disease 10 months after getting married and struggle to conceive. This week on Lights, Camera, Crohn’s, Audrey shares her journey of becoming an IBD mom through adoption and what she wants others to know about the process.
NH: Many women with IBD fear their bodies are incapable of carrying a child/or are told they aren’t well enough. What would you like to say to them?
AB: “I would tell them that every journey to parenthood looks different, but at the end of the day, we are all moms. I think it depends on everyone’s situation and it’s a conversation they need to have with their doctor(s) and their spouse. For me, I was sick at the time my husband Crawford and I wanted to have a baby. I was not sick enough to where I wouldn’t be able to parent, but I do not think my body at that time could have been healthy enough to carry a child without problems. With that said, I’m nearing remission so I do still hope that one day we can have a biological child. If a person wants to be a mom, I fully believe that there are many different avenues a person can take to be a mother.”
NH: What are some of the struggles/challenges about adoptions that you wish other families knew?
AB: “Adoption comes from a place of brokenness, so while it is so beautiful that our son Camden made me a mother, it is not lost on me that his birth mother made a huge sacrifice that left a piece of her heart missing. It can be beautiful and heartbreaking at the same time.”
NH: Was the fact you had IBD ever an issue with adoption agencies?
AB: “Not at all! I love this question because I wasn’t sure what to expect when we started the process back in 2017. For all adoptions, you must complete a home study which includes health questionnaires, a physical, and several meetings with a social worker. In those meetings, we talked about my Crohn’s disease and how I was working with my doctor to treat it. If a person is well enough to parent and take care of a child, there are not any issues with having IBD and being eligible for adoption.”
NH: What are your tips for navigating the adoption journey with a partner/spouse?
AB: I could write a book on this one, but the truth is, Crawford has been my rock. He had no idea when he married me that I would be facing a chronic disease that would land me in the hospital multiple times a year for days on end. He has truly stuck by his vows “in sickness and in health.” I think the best tip I have for navigating Crohn’s with a partner/spouse is to communicate. Crawford knows when I’m not feeling well, the best thing for me is to rest and he makes it happen. He also is my voice of reason and tells me if I’m doing too much or if I need to say no to some obligations so that I can properly rest. Communication is key!
NH: What was it like when you first met your son Camden?
AB: “I always envisioned the moment we laid eyes on our son to be beautiful and the best moment of my life. When we arrived at the hospital, we had not slept in 24 hours and had driven straight through the night. We thought we would be meeting our son, but we were told he was being transferred to a Children’s hospital for further testing on his heart. He was hooked up to all kinds of wires and it was one of the scariest moments of my life. We only got to see him for about an hour before the ambulance came and took him to the Children’s hospital. It was whirlwind of a day, but God saw us through it and the next day, he passed all of his tests with flying colors and I was able to bond with my baby for the first time and have my “beautiful moment.”
NH: What’s been the most magical aspect of being an adoptive parent?
AB: “Most days, I forget that Camden is adopted. He looks just like Crawford and he’s been with us from his second day of life, so he belongs with us. Every now and then, I will have a moment and remember that he has another mom somewhere out in the world. I always say that she is my hero because she chose life for her baby boy and I would say that has been the most magical part for me. Knowing that I owe everything to a woman that I have never met. I pray that she has peace in knowing how loved he is on a daily basis.”
NH: If someone is on the fence about adoption–what would you tell them?
AB: “Pray, pray, and pray some more. If it is God’s will, he will give you that peace. I receive messages every day asking how the process works and people are scared about the cost. If it’s meant to be, don’t let the cost stop you! There are so many ways that it CAN be done.”
NH: You recently announced you’ll be adopting baby number two in 2021, you must be so excited! Did that process differ at all from Camden’s?
AB: “We are extremely excited. So far, it is the exact same because we are going through the same agency. I’m sure there will be some bumps along the way, but we are so excited to bring home baby #2.”
NH: How has already being an adoptive parent helped you through the experience this time around?
AB: “I know what to expect this time, so I am better prepared for the timeline and the traveling that is involved. With that said, our adoption with Camden was extremely quick. I was at work one minute, waiting for the phone call to meet a birth mom and the next I’m told that there is a baby waiting for us to come get him. There was no time to think or for anything to really go wrong. That makes me a little more nervous this time, as I know that it doesn’t normally happen that fast. I’m just praying that everything happens the way it should in the Lord’s timing.”
NH: How has faith played a role in how you navigate your IBD and motherhood?
AB: “I would be lying if I said I never questioned why God would allow a 25-year-old newlywed to be diagnosed with a chronic disease with no cure. It has been a tough journey, but I think God has shown me a glimpse of how strong I can be in tough situations and it ultimately prepared me to be a mother. Not long after we brought Camden home, I had a full circle moment one night while rocking him to sleep. I realized that Camden would not be in my life if it had not been for all the trials I faced with my health and months and years of seeing only one line on a pregnancy stick. While the journey was really difficult in the moment, it is the privilege of a lifetime to know God handpicked me to be Camden’s mother and that He was with me through all of the really low times.”
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.
When you’re a parent keeping your kid(s) entertained and engaged throughout the day is a constant challenge, especially as most of us continue to hunker down at home. When you’re an IBD parent, throw extended bathroom breaks, overwhelming fatigue, and debilitating pain into the mix. Keeping up with your kids, while making sure they’re safe and not getting too much screen time can sometimes feel like an insurmountable task. Just as it’s imperative we are proactive at managing our IBD, it’s also extremely beneficial to be proactive as parents. This is where busy boxes come in.
I first heard of this concept when I was pregnant with my daughter Sophia. My son wasn’t even two when she was born. I had intentions of breastfeeding (and I did), but between nursing and pumping, that’s hard to do when you have a busy toddler running around the house, while managing the day-to-day of life with a chronic illness.
What’s so great about busy boxes is that you can be creative, tailor them to your child’s age and interests, and do so without breaking the bank. As a mom of a 3.5-year-old and a 22-month-old, with winter approaching in the Midwest in the middle of a pandemic, I’m starting to update my busy boxes for the long months ahead. I started this past weekend. I went to the Dollar Store and got this haul for a mere $14.
Whether you’re at Target, Hobby Lobby, or on Amazon, you can pick up little activities as you go to continue to keep the content within the busy boxes fresh.
Creating your busy boxes
Sensory busy box: Hide farm animals, dinosaurs, or cars in rice, pasta, or kinetic sand.
Themed activities. My daughter loves Frozen, so I included stickers, puzzles, books, and trinkets. My son loves dinosaurs and sea creatures so I will keep that focus in mind as I update his busy boxes.
Letters/Words and Numbers/Counting: Include items that help your child learn the alphabet, recognize numbers, spell, learn opposites, matching and rhyming.
Shapes: Puzzles, felt designs of food and people, and paint-by-sticker books, you get the picture.
Storing your busy boxes
It’s best to keep busy boxes out of reach from your children so it’s something that’s not always accessible. That way, it feels like a fresh new activity. We keep our busy boxes stowed away in the kid’s bedroom closets (where they can’t reach them). As an IBD mom, I recommend keeping a box nearby the bathroom so if needed, your child can sit at your feet and be entertained with little to no effort on your part. Busy boxes also come in handy when you’re trying to cook dinner or having to be on a Zoom call for work. I knew it was time for me to update Reid’s busy boxes this week when I looked over during a Zoom call and he was jumping up and down on a bag of opened pretzels. Fun times! 🙂
Helpful busy box resources
Still looking for some inspiration? Pinterest is a great resource to check out ideas and to come up with activities for your little ones.
Here are some Instagram handles that provide helpful activities and guidance about educating and entertaining your child at home (no affiliations, just giving them a shout out) in hopes of helping you:
As we gear up for the winter months and this pandemic drags on, I hope you find this useful as an additional tool in your chronic illness parenting arsenal. I know it does my heart good to know I have something fun and engaging to share with my kids, especially on the days when my Crohn’s interferes with my plans or expectations for the day.
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 was putting away the dishes after dinner when I paused, exhaled, and said to my husband, “Whew. I just got a major wave of fatigue.” He said, “Yeah, I feel tired right now, too.” This isn’t the first time a healthy, able-bodied person has responded this way—and I know everyone with a chronic illness can relate. I kind of laughed and tried to explain why chronic illness fatigue wasn’t the same as feeling tired, but I was coming up short for words and having difficulty explaining the difference. My husband, Bobby, genuinely wanted to know why I thought my fatigue was different than his and how I knew it was. I said I used to be healthy. I used to not have a chronic illness. I know what tired felt like then and what fatigue feels like now.
Articulating pain with IBD and fatigue can be so challenging—even though it’s something that is so much a part of our day-to-day experience. Unless you live it and it’s your reality, it’s difficult to put the experience into words.
I called upon the IBD family on Twitter and Instagram to see how they describe their own personal fatigue. Here are some of the responses:
“Imagine your car being on empty and you put $5 worth of gas in the tank until you’re running on fumes. Then you put $5 worth of gas again, and you continue this process for months at a time…while sometimes running out of gas completely multiple times along the way.”
“Having to run a consistent marathon without stopping while carrying a toddler in the front and a backpack with a week’s worth of supplies on your back…in flats.”
“Mentally feeling like you have the energy to do simple tasks, but your body physically won’t let you. Knowing I need to walk 100 feet to get in my work building and having to give myself a pep talk to do it because I’m not sure I’ll make it without having to sit down.”
“You’re tired from being tired. You are just over everything and the day drags on and on. A nap doesn’t help because you “waste” your day, but the truth is you can’t even take a shower because the thought is way too much energy.”
“Like you’re walking with ankle and wrist weights on 24/7. There are days I feel like I’m walking through a fog so dense in my head I can touch it.”
“When I think of chronic fatigue for me it means faking being well. When getting out of bed or getting a shower is an accomplishment or needing to rest after taking a shower. No matter how much sleep you get you still wake up tired. Chronic illness fatigue is physical, mental, and emotional exhaustion.”
“Trying to motivate yourself when you’re fatigued and having brain fog is how I imagine swimming in syrup or molasses would be.”
“It’s the feeling of exhaustion, hopelessness, and loss. You’re beaten down from managing your condition and the various negative side effects that come with it on top of trying to function in whatever role you’re trying to play on a daily basis (for me: wife, mother, employee, and friend). It’s trying to make the most out of life but knowing you’re limited. It’s mourning the person you once were and want to be at that time. It’s physically, mentally, and emotionally draining.”
“I explained the fatigue to my students that just thinking about lifting my legs to walk or the mechanics of moving my limbs is exhausting…let alone the act of doing it. Everything feels heavy.”
“Down to the bone, exhaustion in my core, something that is impossible to push through.”
“I like it’s like first trimester fatigue! But, with no end in sight and nothing hopeful to show for the symptoms like a baby!”
“Like your body is made of bricks. Your mind knows you need to get up and do something—change over the laundry, send an email, but your mind cannot make your body move.”
“Living in a constant state of exhaustion. No amount of sleep or rest seems to shake it.”
“For me…I would describe chronic illness fatigue as KNOWING your car has no more fuel and having to get out and push it home yourself.”
“Heaviness in my body. Just surviving, not thriving. Frustrating because I want to do more things but can’t always.”
“Being tired as soon as you wake up, until you go to bed. Never fully feeling rested. Planning naps throughout a day. Heavy eyes. Mood swing when beyond exhausted.”
“Like constantly living under 10x gravity.”
“Like someone pulled the plug out.”
“Like moving through the mud. It can also creep up on you when you least expect it, sort of like this year’s global pandemic—all encompassing and has no sympathy.”
“Like I’m wearing 100 pounds worth of sandbags that don’t go away even when I get lots of sleep.”
“Waking up and still being tired. No amount of coffee can fix this tired.”
Stop the comparison game
After reading these descriptions, my hope is that the next time you try and compare your fatigue or tiredness to someone with a chronic illness you pause and be selective of your words. Of course, everyone is entitled to be and feel tired, but it’s not an even playing field energy-wise when you’re a healthy, able-bodied person. Coffee, naps, and sleeping in help most of the population feel energized and re-charged, but fatigue with chronic illness is often untouchable. A full night’s rest can still leave you feeling exhausted. A coffee may have no impact. A nap may cause the fatigue to be even more pronounced. As an IBD mom, it can be frustrating to hear someone without a chronic illness try and diminish my personal struggles by equating them to theirs when there is truly no comparison.
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.