Caring for Crohn's & UC

Recap from IBD Social Circle

May 28, 2015 at 11:30 am Rebecca K. Leave a comment

As I mentioned previously, I recently spent four days in Washington, D.C. as part of the IBD Social Circle, sponsored by Janssen Biotech. The IBD Social Circle is the online movement dedicated to bridging communications gaps and inspiring and educating the IBD community. It was formed a year ago with seven activists and is now comprised of a group of about 20 IBD activists from across the country.

Watching the procedures & surgery webinar with #IBDSocialCircle #IBD #Crohns #UC pic.twitter.com/tLyy0ZqYai

— Rebecca Kaplan (@RebeccaHKaplan) May 16, 2015

Participating in the IBD Social Circle was an incredible experience- to be surrounded by so many determined, passionate individuals who have battled so much in their lives with Crohn’s disease and ulcerative colitis was inspiring to say the least. I was one of two individuals there who was not an IBD patient themselves but instead was a caregiver for a patient with the disease (the other one, Frank, is the father of a 10-year-old boy with Crohn’s disease who has had the disease since he was born).

I have experienced life with these diseases peripherally by caring for my husband and friends with IBD. But even going through surgery with my husband and supporting one friend through her three-year battle to heal from her proctectomy did not prepare me for how debilitating and devastating Crohn’s disease and ulcerative colitis can be. At one point during the weekend, people were asked to share their IBD stories. Each person had a different story and each one shocked me to my core.

my 1st surgery memory at 16 started w/an enema-screaming, passing out & woke up to parents telling me surgery was needed. #IBDSocialCircle — #purpleproject (@girlsgotguts) May 16, 2015

After hearing all of their stories and learning how much they have overcome, I was in awe over the strength exhibited by the other members of the IBD Social Circle. Case in point- my friend Ryan. Just a week prior to when we were to be in Washington, Ryan was hospitalized and had surgery due to an abscess. Despite having a drain and not feeling great, Ryan traveled to Washington and participated in all of the IBD Social Circle events. He may have been uncomfortable and not felt great, but he never let on to his discomfort. I am so thankful he was there because we got to watch a documentary that was made about his attempt to swim across Lake Erie last summer to raise awareness of IBD. (Side note: if you haven’t seen it yet, I strongly encourage you to check it out here.)

Q & A after watching documentary about @ryan_crohnsguy attempt to swim #LakeErie. Inspiring is an understatement. pic.twitter.com/LGo0B1bLa5

— Rebecca Kaplan (@RebeccaHKaplan) May 17, 2015

Between the horrible DC heat and humidity and discussing IBD all weekend, I was physically and emotionally exhausted by the end of the IBD Social Circle (I can only imagine how utterly spent those with IBD must have felt). But the weekend was an experience I am so thankful to have had. It will continue to inspire me to advocate for those living with these diseases and educate others who have not heard of them before.

Stay tuned for more IBD Social Circle & Digestive Disease Week posts in the coming days/weeks!

*Disclosure: My travel arrangements and attendance for the IBD Social Circle was paid for by Janssen. All thoughts and opinions expressed here are my own.*

Entry filed under: Advocates, Caregiving, General, General Disease. Tags: advocates, caregiving, Colitis, crohn's, crohn's disease, Crohn's Sucks, ibd, IBD Social Circle, inflammatory bowel disease, uc, ulcerative colitis.