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!
Your disease is making the simple task of sitting in class alongside your peers an ordeal. While you may feel alone in this moment, thousands of college students around the world living with IBD can relate to this overwhelming stress and strain.
Balance is key. Health comes first,” said Aaron Blocker, a Crohn’s patient and IBD advocate. “It sucks to have to pause college because of your health, but school will always be there, and your health is important for long-term success.”
As a straight A student, now struggling to pass classes due to an awful flare, I was devastated that I needed to ask for help. I was appreciative of my professors’ extreme kindness and that I was granted accommodations (deadline extensions, attending a different lecture on bad days, rescheduling exams, etc). This was a profound moment that taught me it was okay to ask for help,” said ulcerative colitis patient and IBD advocate, Jenna Ziegler.
Ask for extra time, ask for a note taker. Get in touch with your school’s office for those with disabilities. Access the support you need to be on equal ground.”
I also can use the bathroom frequently without question, eat in class without any questions and I’m allowed more than the usual 2 absences allowed in most classes,” said Tina Aswani Omprakash, Crohn’s patient and IBD advocate. “If there are group projects and I can’t partake; I ask the professor if I can do something on my own.”
It took time and some trial and error, but as I navigate my somewhat new diagnosis, my wife and I have learned how to best monitor my symptoms to try and avoid future flares and take Crohn’s on as a family. In addition to my medical care, this includes some key strategies to how we approach parenting.
My wife is amazing and understands the physical impacts of a flare, but it’s my job to share with her if I’m feeling Crohn’s-y. Similarly, I have started a dialogue with my boss, so if I flare, I don’t have to pour every ounce of limited energy I have into work and come home completely empty.
Ziyad shares how his experience taking on Crohn’s inspired his decision to become a radiographer and show fellow patients they are much more than just a number. I’ll let him take it away…
I was afraid of what people might say, what they might think of me or if they might start treating me differently – I didn’t want to be anything other than the supposedly ‘healthy’ 17-year-old with a ‘normal’ life. As a result, I spent twelve years living with Crohn’s in silence. I was embarrassed, because let’s face it, talking about your bowel habits isn’t the most glamorous topic.
It can be easy to fall into the ‘conveyor belt’ motion of one in, one out, to try and manage the workload. But it is in these busy moments, where taking a few extra seconds to ask a patient who looks upset, scared or frustrated if they’re OK, that can make all the difference.
It’s not easy to be in constant battle with your body. It’s a challenge to feel pain often. It’s exhausting to always have a worry and a wonder in the back of your mind about how you’re going to navigate and overcome the next hurdle or setback thrown your way. This is why self-love is so important.
Since being diagnosed, this body of mine has still served me well. I managed to work full-time and live out my dream of working in television for the first ten years I had Crohn’s. I trained for and ran in 5ks, 10ks, 15ks and a half-marathon. I felt completely healthy and on top of the world on my wedding day (didn’t have one bathroom break!). My body was a safe haven for my children throughout pregnancy and allowed me to bring a healthy son and daughter into this world.
It’s when I felt invincible if only for a moment, whether it was crossing the finish line or holding my babies on my chest for the first time. It’s the victories along the way that help me push through on the difficult days and through the flares. Because while those times push me to the brink of breaking, I tell myself there’s only one option—and that’s to bounce back.
Pat yourself on the back for all the steps you’ve taken to rise up. Smile through the tears with the confidence in knowing you will get through this—one day, sometimes one hour at a time.
My daughter is 4 weeks old today and has been exclusively breastfed. I’m by no means writing this as an expert or to point any fingers. I am completely of the mindset that ‘fed is best’. No judgement here, ladies. 
I was worried about the lack of long-term studies on my biologic drug (Humira) and I was concerned about the risk of having a postpartum flare that would land me in the hospital and interrupt my ability to feed him. Being a new mom, I was worried the stress that comes along with breastfeeding could cause me to flare. I ended up breastfeeding him the first three days in the hospital, so that he could receive the colostrum. After that—he was given formula until he turned one. It’s a decision I was confident in, but that tugs at my heartstrings at times, especially now as I breastfeed his sister.
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That way—the baby did not receive a burst of the immune-suppressant drug through the placenta, the day she was entering the world and I would be at lower risk of developing an infection as well. Timing your biologic medication is key and a conversation you’ll want to have with your care team so it can be tailored to your pregnancy and your personal journey.
When it comes to breastfeeding as IBD moms, whether a child is going to latch or if our milk supply is going to be sufficient, tends to be the least of our worries. Our chronic health condition, plus the medications so many of us are dependent on to treat them—adds another layer of stress. In the end, you need to do what you feel comfortable with, what works for your body and for your family. Always know you are not alone in your struggles. Celebrate the parenting wins and accomplishments along the way—no matter how big or small. Lean on your support system—especially fellow breastfeeding mamas who can answer your questions and calm your fears. I can’t tell you how long I’ll continue my breastfeeding journey. For now—all I can do is take it one day at a time. What I can tell you—is how rewarding it is to see what my body is capable of, despite my disease and how amazing it feels to know I’m nourishing my little girl and providing her with a healthy start.
Try having a flare during the worst natural disaster in the history of your country. It happened to me. I survived.
One morning I decided to stop in my GI’s office. He had lost the A/C unit and the office was flooded during the storm. He ordered some labs, an emergency colonoscopy and a few days of rest. I was anxious, exhausted, scared. After the colonoscopy, I was prescribed prednisone for a month and then started Humira.
I hope my experience sheds light on what it’s like for those in the chronic illness community as they endure the repercussions of natural disasters. It’s a critical conversation that needs to happen—preparedness for the IBD community in the face of weather disasters. How can employers, government and society step up to the plate?
Currently, many patients and caregivers struggle to inject medications correctly, which means patients don’t always receive their full dose of medication. This can lead to symptoms worsening and a greater threat of a flare up.
There’s also an online study—available to anyone in the United States—going on right now for those living with an immune system or digestive system condition. You can earn $15 for a 15-minute, online survey. 
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