I have had Crohn’s for 23 years now and never in all that time have I thought I would want to advocate for the disease. In fact, I kind of denied that I even had it. I didn’t want to face it.
Earlier this year in January I was at the lowest point with this damn disease. I was going to the bathroom 30 times a day and having a lot of pain. Nothing, not even my meds, was helping. It was then that I realized that I had to face this disease head on and acknowledge it.
I went online to look for help for the first time in my 23 years. I thought I was so bad that I was going to have to have my intestines removed so I started researching ostomies. And that is when I found Maggie on YouTube. From there, I saw she watched some videos which I eventually did also…and that is how I found Sara (inflammed and untammed). Doing some more research led me to Kelly (I Have a Bad Tummy). All 3 women have a following and have different issues with IBD. They have a strong voice for advocacy and made me want to reach out to others for support. I then found a number of other strong women who advocate (Full Frontal Ostomy, The Great Bowel Movement, Blood Poop and Tears) and many other sites. One thing I started to notice is that every one of these people were women. Where are all the guys?
Within my search for support I have found some guys out there. Brian Greenberg of Intense Intestines is one. There is Jason from the Crohns Disease Support Network. Both are big advocators within the community. Another person who is a little low key but has a following is Patrick Leger aka SCDPat. He is known for spreading the good word of the Specific Carb Diet. I recently spoke with him on Twitter to get some insight on building a following. He gave me some great advice.
One of the things I mentioned was that I wanted to form a “Band of Brothers” Recently a bunch of the women I mentioned went to Chicago to advocate and they called themselves the Girls with Guts (or something like that). I thought that was great. They had always been separate..but banded together they can do a lot more.
So here I am. There aren’t many guys out there advocating and alone, we are just one voice. So I am reaching out. GUYS….if your reading this, help us out. I would love to get a group together to advocate. Patrick suggested “Crohnie Boys” but I don’t want to exclude our other IBD brothers. If you want to help raise awareness please let me know. Let’s get a group together. Together we can be powerful.
IBD Advocacy. It’s not just for women. Let’s show them how us guys do it. Let’s speak up and be heard.