Crohn’s fighters share their stories

One of our favorite things to share is the stories from folks struggling with Crohn’s, Ulcerative Colitis, ostomy bags, and other forms of IBD. The fight in them is such an inspiration to us that we feel compelled to share their strength to continue to spread awareness and hopefully to find a cure.

Image may contain: 1 person, smiling, standingJessica,  Clinical Psychology Ph.D. student

“I wish others knew that people with IBD (and really all patients with chronic illnesses) deal with so much more than the physical symptoms of their disease. Having a chronic illness can take a huge mental and emotional toll. This doesn’t mean that all patients with IBD have a mental illness, but some report anxiety, depression, insomnia, and difficulty coping with their illness. On a side note, I wish patients with IBD knew that it’s OK to feel this way and that seeking help from a mental health professional is not a weakness, it’s a sign of strength. You are not alone!”

 

Michelle Lynn Law

“My last link to show my fight and support”

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“My daughter 2 weeks ago at her Remicade Treatment. She has diagnosed 2 years ago 13 but We just started Remicade a year ago. Had no flares almost a year but now she’s experiencing what seems like an allergic reaction 10 minutes into the treatment last times. Been glaring since April so we are back on Prednisone Euceris. Hoping this isn’t a sign of Remicade failing.”

 

 

Kalee, NCCL Co-Chair

Image may contain: 1 person, smiling, standing, flower, outdoor and nature“I remember everything about the phone call from my doctor- where I was standing, who I was with, and what words my doctor chose when telling me about my diagnosis. I remember hurrying inside to look up the prognosis, treatment, and what my life might look like. To be honest, I was terrified and had no idea how I’d manage my disease in college. My Crohn’s Disease has brought me to some of my lowest points both mentally and physically, but it has also given me some of my biggest triumphs.

Life throws challenges your way but the Foundation and NCCL taught me several extremely valuable lessons. The first lesson is that you are not alone. I was introduced to one of the strongest and most incredible community of supports. The second lesson is that you are bigger than your disease and that your IBD does not define you. When I found out I was selected to be a part of the National Council of College Leaders, I was over the moon and originally visualizing what I could contribute to the council but it was the council that gave me the greatest gift possible- more than I could ever repay. The Foundation and council gave me the tools and confidence to recognize sub-par aspects of patient care and access to care and to actually do something about it. I’ve spoken to legislators about healthcare reforms, worked with FDA representatives and physicians about redefining the use of medical foods, and helped create calls to action.

These steps in the right direction and the hope that future IBD patients don’t have to travel the path I did are what have gotten me through some of my toughest moments in college. Now that I’ve graduated and am transitioning out of my role as council co-chair, I am forever grateful for the opportunity to be given a voice in the IBD community, to have been a part of a council that’s helped me grow more than I ever thought possible, and to start my journey as a future healthcare provider given all that I’ve learned through the Foundation.”

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