To say I was going through a lot in the beginning of last year would be a ridiculous understatement. I was just figuring out life with an ileostomy after battling 12 years of ulcerative colitis and undergoing 14 major operations when out of nowhere I was diagnosed with another auto immune disease that greatly impacted the way the bag stayed on my skin. The only time I left the house for months was for doctors’ appointments where I needed to get steroid injections at the stoma site to deal with the pyoderma ganrenosum. At the end of January, someone in my life passed away which I wasn’t expecting either but because I was dealing with so much physically, I only mourned for the remainder of the day and that was pretty much it.
I was in a very bad place to say the least.
In an effort to pass the time between waking and sleeping, I was scrolling through some things on the internet when I stumbled across a blog post written by Brian Greenberg from the Intense Intestines Foundation. At the bottom were the words “Never Stay Quiet.”
I remember seeing those words and all of a sudden, instead of doing everything I could to bury my feelings, I felt a huge rush. Almost combustible. After I shut down my computer and walked upstairs to my parents’ room, I proceeded to scream and cry for almost three hours about… EVERYTHING! I was angry about my new diagnosis. I was livid that my friend passed away at the time he did because I wasn’t able to say goodbye given my health. I was destroyed from keeping so much inside of me for so many years. I just couldn’t stay quiet anymore.
I absolutely think the world of the Intense Intestines Foundation and their motto of “Never Stay Quiet.” It seems incredibly simplistic, yet it is something that I think those of us who suffer from Crohn’s disease or ulcerative colitis have an incredibly hard time with. It is very difficult to be open and honest about our lives given the nature of IBD. It has a lot of embarrassing components so it is easier not to talk about it. It is easier to isolate yourself from friends or family.
For a long time, I always kept my distance when I wasn’t doing well and since my health was an uncontrollable roller coaster, it was quite often. This led me to feel an enormous amount of hatred for the disease because I felt like it was preventing me from doing so many things; one of which was having the ability to be the open and honest person I always was prior to being diagnosed with ulcerative colitis. I was losing myself more and more each day by keeping the real parts of who I was a secret from most of the people in my life. It got to the point where I had no idea who I was when I looked in the mirror. I often described this feeling as though my soul was slowly dying.
The words “Never Stay Quiet” aren’t just about sharing your experiences with your disease with the people in your life. It extends far beyond that in my opinion although when you suffer from IBD that is usually one of the hardest things to be open about.
Being an open person requires you to show a certain amount of vulnerability. I have always had a difficult time showing that side to anyone other than those in my immediate family. It is a very tough to be able to show the world who you really are. I spent so much time and energy being fake because I never wanted to be viewed as a downer or complainer that it was amazing I had time for anything else.
After seeing those words “Never Stay Quiet,” they deeply resonated within me. My dad told me many times over the years how great it would be for me to share everything with everyone but I just couldn’t. But seeing these words under a post of a foundation that was committed to making the lives of patients suffering from IBD better was eye opening. It allowed me to see that other people were probably having some difficulty opening up if their motto was “Never Stay Quiet.”
I saw I wasn’t alone and I realized the steps I needed to take if I had any chance at leading a happy, peaceful life.
So I got involved. I shared my story with the world in the beginning of September and a week later I started my own blog which has been the most cathartic thing in the world to me. I am very active in the IBD/ostomy community and connecting with other people who “get it” has been a great gift.
I also began working with the IIF after being so inspired by not only their motto but their mission to help those with inflammatory bowel disease and ostomies as well. Founder Brian Greenberg is hiking the 46 High Peaks for IBD awareness.
Your support means so much to all of us who suffer from Crohn’s disease and ulcerative colitis.
Never Stay Quiet!