I saw that someone in our community passed away from a status on facebook over the weekend but honestly wanted to brush past it since it was too much to deal with at that time. I find that I need to keep somewhat of a distance from some of the things I hear about daily since I get triggered very easily. I love helping people and feeling connected to others in the community but I can’t take on the problems of the world, and I most certainly can’t be overly involved in the lives of people who struggle with so much of what I had gone through and continue to struggle with. It affects me deep in my very core and I can’t turn off the emotional pain. I start having nightmares and flashbacks of the hospital whenever I hear another IBDer say “Mt. Sinai Hospital.” I turn away from pictures of people lying in the hospital; not rudely but because I personally can’t handle the images. It resonates so much in me.
But when I watched a video from another IBD advocate, Sharon, my eyes began to completely fill with tears and I haven’t been able to stop crying.
Please click on the link below to view the video:
The reason why I think this video was particularly touching and why I think Sharon’s work specifically really grabs me is because she never seems to lose the personal connection with patients. She makes sure to check in with fellow IBDers as often as possible which I think is one of the greatest things a leader can do. So many groups and pages on facebook have so many members which leaves patients to either feel left out or like their comment or particular issues don’t get addressed/matter much.
This video also made me realize that I can’t really live in denial like I want to sometimes about the personal impact inflammatory bowel disease takes on a person and their loved ones. Sharon humanized this situation so incredibly well that I don’t think anyone with a personal connection to Crohns or ulcerative colitis can really walk away from this.
The bottom line is Crohns disease and ulcerative colitis has so many physical and emotional components. Every patient is different and their disease manifests in different ways. I have a good handle on the physical part I believe but I am still working out the emotional. I am still working on how to be a good advocate without being triggered by other people’s stories and/or situations.
Ulcerative colitis and Crohns disease have the ability to be fatal. Between the harsh medications, multiple surgeries patients need to go through, and other complications that can result from the disease, people can and do die. GET IT – patients with Crohns disease and ulcerative colitis DIE!
If I didn’t have parents who made sure I was cared for, I would have. I was bleeding so much my hemoglobin was 6 at one point (usual transfusion number is 8 and a normal level is around 12.) After my first surgery, I had such bad infection spewing throughout my entire body, I passed out and had my mom not been home and my dad been close by so he could carry me into the car, I don’t know what would have happened. I went months with doctors telling my parents I had an eating disorder when in reality, my intestines were riddled with fistulas causing abscesses in my pelvic area. Months and months of heavy duty antibiotics and multiple drains were needed and I was eventually okay. But without a competent medical team and a family who I could trust, I don’t even know…
In the video Sharon asks “how many more?” How many more people need to die before the public and medical community takes us seriously. There are almost three times as many people in the US alone with inflammatory bowel disease than MS and most people know what that illness is.
My heart goes out to Karrie Jacob’s family. She leaves behind two toddlers and a husband. No family should have to go through this, ESPECIALLY when it could have been prevented. With the right education and public awareness, I believe with every fiber of my being that IBD patients would be better cared for. They need to be taken more seriously. They need their pain managed without being made to feel like drug addicts. They need to be looked at as the strong, fighters we all are in the school and work force instead of “lazy” simply because no one has a clue what Crohns or ulcerative colitis actually does to a person’s body. We need more research and funds going towards IBD because Crohns and ulcerative colitis can kill.
As Sharon says, there is strength in numbers. It is time to stop believing the Crohns and Colitis Foundation of America alone will be our voice. They are huge and have a lot more resources, for sure, but they have tried and failed miserably.
We need to do something different and the time is NOW!
I want to thank my fellow IBD advocates for being such a strong force in the community and for being so passionate about making lives better for all of us and our families.