ImproveCareNow Pac
Dealing with COVID isolation as a high risk patient
As a high-risk graduate student who's been remote since March, I'm no stranger to the COVID isolation fatigue that many of us have been experiencing. It’s been a challenge to work, attend classes, take care of my health, and balance daily life without the usual in-person interactions I’m used to. The days can feel like a blur when we do everything from home - setting boundaries and creating some semblance of ‘normalcy’ has been tricky, to say the least.
A few of the things I’ve noticed help me cope right now:
It feels like we've really come full circle
Something that I don’t think a lot of people know is that I recruited Catalina Berenblum (Cat) to join the Patient Advisory Council (PAC), years ago. And now that she’s on-boarded me as the PAC's new Co-Chair, it feels like we’ve really come full circle. If I had known then, what I know now, it would have been an interesting sight to see: a high school freshman leading an orientation call to onboard a future PAC Co-Chair and eventual med student. Obviously, I didn’t know that Cat would become either of those things when I first picked up the phone, but I did expect great things from her right away. From our first conversation, I was sure Cat was going to do something amazing: she became an instant role model to me. That awe I felt was well-founded.
Crohn’s made it hard to participate in simple things
My name is Robbie. I’m 18 and a college student. I was 15 when diagnosed with Crohn's disease; luckily I am in remission now. An interesting fact that people don't know about me is that I captained my school's Trivia team and we went on TV for competitions!
IGNITE – It starts with us.
Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:
It's OK for IBD to take up space in my life
My name is Shira and I'm currently a junior in high school. I was diagnosed with ulcerative colitis in the fall of 2018 but I am being reevaluated for Crohn's disease at the moment. Something interesting about me is that my mom and a few other family members of mine also have IBD!
With IBD, I’ve gained a lot of empathy and perspective and learned a lot about privilege
My name is Seth. I am 17 years old and a rising high school senior. I was diagnosed with Crohn’s disease in sixth grade. I had a relatively typical path to my diagnosis. After a few years of worsening symptoms (stomach pain, constipation, and vomiting), I went into the hospital, where I had a gastric emptying scan and upper endoscopy, and then labs, a CT Enterography, and finally a colonoscopy. After a few weeks on Prednisone, I started IV Remicade, which I have been on ever since. Outside of Crohn’s, I play trombone and tennis. I’m also very involved in politics, and I was recently an intern for two congressional candidates in Ohio.
Crohn’s swept life as I knew it out from under me
Hi! My name is Mary and I am 19 years old. I am currently in nursing school. I was diagnosed with Crohn's in 2018. One interesting thing about me is that I have 3 nephews and a niece!
Patient Perspectives on Telehealth and In-Person Care in the Time of COVID-19
COVID-19 – the illness caused by the novel coronavirus (SARS-CoV-2) – has brought unprecedented challenges for both patients with IBD and their care providers. In this post, members of the Patient Advisory Council share perspectives on accessing telehealth and in-person care in the time of COVID-19, and recommendations for improving together.
We believe these perspectives are important for individuals with IBD to review and consider, because the quality of our care is directly tied to our long-term health and wellbeing. If we possibly have less effective care during a pandemic, it can have downstream effects on our health and our lives.
I can overcome obstacles
Hi, I am a 16-year-old high school student diagnosed with Crohn's disease. I am a part of the varsity tennis team, Model UN, French Club, National French Honors Society, and High Pride. The most interesting thing people don't know about me is that I was the champion child of the year for the Children’s Miracle Network at my local hospital.
I’m not sure it’s Crohn’s yet, but I’m building a strong support center within myself
I'm Lexi - a rising high school senior. In December 2019, I was having severe nausea, vomiting, and abdominal pain. The doctor at Urgent Care thought my gallbladder was the cause of my pain and suggested I go to the emergency room immediately to have it removed. At the ER, after many tests, they determined it was not my gallbladder but could not figure out the cause of my pain. I was referred to a pediatric gastroenterologist.