Hi, it's Vanessa from the PAC! School is busy right now, but fellow-PAC-member, Fionna and I made time to sit down and record a podcast episode where we chat about personal experiences we've each had changing our IBD treatment plans and how this fits into school and life for us.

My name is Nikhil and I am 17 years old. I am currently a junior in high school, and I was diagnosed with ulcerative colitis in September 2016, when I was 12. One thing most of my friends don't know about me is that I absolutely love going to school. There is just something about learning new information that makes me feel great. 

IBD treatment plans are as varied as the patients who live with and follow them. Vanessa shares her experience with IBD and how her treatments impact her daily life:

LOOP is a place for ICN Community members to share their stories – experiences, perspectives, wisdom. Since the blog was created in 2012, hundreds of stories have been shared by patients, parents, clinicians, researchers, collaborators and friends. We've recapped our top five, most read stories from patients about life with Crohn’s disease.

Ella and I want to thank you all for your incredible response to our first blog post where we introduced the IV Sweatshirt Project! If you haven’t read our story yet, we encourage you to start there – in it we share about Ella’s diagnosis with Crohn’s disease, our journey to find a treatment that worked for her, and how her experience ultimately led us to create something together to help kids like her stay warm and comfortable while getting infusions.

After a few trials and some delays due to COVID-19, we are excited to share that we have received a solid prototype of our IV sweatshirt design and have been able to test it at our infusion center!

We believe everyone’s story matters and is important and can change someone else’s story. In the midst of the current global coronavirus pandemic it feels more important than ever to share our stories, experiences, knowledge and know-how widely, to stay connected virtually and to continue reminding each other - we are not alone!

Thanks for sharing your perspective, Jen!

Hi, my name is Ella and I am 12 years old. I am currently a 7th grader who likes spending time outdoors and hanging out with my friends and family.

When I was nine years old, I started feeling sick. I was nauseous all the time, had trouble eating without pain and was so tired I could barely get through the school day. By the time summer arrived, I couldn’t even walk an entire block without feeling ill. We didn’t know how serious it was until I was diagnosed with Crohn's disease at age 10. By then, I had stopped growing and was severely underweight. It was very difficult for me, especially in the beginning. The first rounds of medication were not successful; I couldn’t tolerate them. In August of 2017, I began receiving IV infusions (Remicade) at Yale New Haven Children’s Hospital. I am now in remission and feel great but going for IV infusions as often as every four weeks, as well as taking oral medications, is my new “normal” and the inspiration for an innovative project I’m working on.

An infusion during Thanksgiving week?

Yeah, I’ve had to get infusions on or close to Halloween, Cinco de Mayo, New Years, my birthday and other holidays too. Turns out my health doesn’t really consider fun, festive or eventful times in life as suitable excuses to delay my infusions. So, I’ve learned to roll with it, scheduling infusions that I know will wipe me out for a couple of days every month for almost six years now. I’ve had a lot of infusions in my life, so it’s pretty routine for me, but I wanted to write down step-by-step what my experience is like in case it’s helpful to others.

Three years ago my son started on Humira in an attempt to get his Ulcerative Colitis into remission. Although it quickly became apparent that Humira was controlling his UC, my husband and I were struggling to successfully administer the drug. Our process consisted of 30 to 40 minutes of negotiation along with bribes and other unsuccessful attempts at minimizing the injection pain. We tried our best to allow our son to have some control over the situation by waiting for him to tell us when he was ready.  In the end, we were just getting frustrated.  That is when we found Buzzy.