Today we’re featuring an awesome Health Activist for the Crohn’s community – Jeffrey of A Guy With Crohn’s. He’s doing great things for the online Crohn’s community and brings the important perspective as a guy advocating. We can’t wait to see how Jeffrey continues to activate his community and raise awareness. We interviewed Jeffrey to learn a bit more about him and his Health Activist story.
How did you get started as a Health Activist? What took you from patient to leader in the community?
In November of 2011 I started to feel a little sick. I was starting to go to the bathroom a lot and was having some pain. Talking with my GI he thought I might have C Dif. Test for that came back negative. Over the course of the next month I would start to feel worse and I started going to the bathroom about 30 times a day. This was abnormal for me. I realized that another medicine I was on was probably causing this to me. I had an appointment with my GI for January and with the exception of the bowel movements I didn’t feel it was worth trying to see him. My the beginning of January I started feeling depressed. Nothing I did was helping my symptoms. I was on Humira shots once a week and this was not helping. I felt like the end result to all of this was going to be surgery to remove my colon.
About mid-January of 2012 was my A HA moment for me. I have had Crohn’s Disease for 23 years and never really knew much about it. I hadn’t really known anyone else with it and never seeked out companionship for it. So, I gave in and started searching the internet for Crohn’s related videos and chat rooms. While searching YouTube I came across some wonderful women who showed me that even though we have a disease, the disease shouldn’t have us. I started talking to some of them on Facebook and joined some chat rooms. I started learning so much more than I have ever knew about Crohn’s and found out just how many people there are out there with it. For 23 years I was alone and in denial of my disease. I realized I shouldn’t be and that is when I decided I didn’t want anyone else to have to go through that. I decided that I was going to take hold of my life and disease and help educate others and let them know just what IBD is.
One other thing that helped me make a decision to advocate is a little more to my heart. My father in law passed away on my birthday in 2011. He had Colitis and had an ostomy bag. He is the only other person that I knew personally with IBD and we never really talked about it. There was this big connection between us and I let the opportunity to learn more slip away. Because of the bag and the surgeries he had throughout his life, he developed some health issues that eventually lead to his death. I was hit so hard inside because I felt like that could be me one day. When I got sick, he would be in my thoughts every day. To help honor his memory, I do a lot of what I do for him. I don’t want anyone to have to be silent about their disease.
What do you wish other Health Activists (or doctors or family!) knew about crohn’s disease and living with it?
First I wish everyone would realize that IBD and IBS are two totally different things. Crohn’s in IBD (Inflammatory Bowel Disease) and is incurable. Nothing known to man can cure the disease. Diets and meds may put you in remission, but you are not cured. I see so many people online promoting that they had Crohn’s or Colitis and they are now cured.
Many people don’t realize just what we go through with Crohn’s Disease and we all wish for a cure. If there was one, we would know about it. People with Crohn’s Disease have so many symptoms and we all vary. We have weakness, soreness, pain in the gut, joint pains, pain in the butt. We can lose our appetite, have nausea and cramping. There are so many more things that we can develop. There are so many myths going around about the disease. I can go on for hours talking about them and many activists have talked about the myths. For anyone reading this, please before you make a comment about us, ask us how we are and believe in what we say. And again, if there was a cure, we would know because no one wants to go through was we Crohnies go through in a day.
If you could have dinner with anyone else from the crohn’s community who would it be?
This is a tough one for me because I am still new to learning who is in the community. I have met so many people that I wish I could meet them all. But some of them have really stuck out to me and even though they don’t know it, they have changed my life and helped me on this road I am now on. People like Sara from Inflamed and Untamed, Kelly from I Have A Bad Tummy on Facebook, Jackie from BloodPoopandTears, Charis from Full Frontal Ostomy, and Maggie from LetsTalkIBD. They were some of the first people I saw videos from and blogs I read. Their courage helped in my healing process more than they will ever know. I would be honored to not only have a meal with them but I would cook it myself.
What is your biggest wish for the future of Health Activist?
My biggest wish ultimately is that we disappear because cures are found. But until that happens, I want more Health Activist out there. I think everyone should raise their voice and speak out. We are all good as individuals but are much louder as groups. I want no one to be scared to say “I Have A Chronic Illness”. I think we need to change Health Activist to Health Group.