Well, I knew this would happen some time during the month. Life has gotten in the way and I find myself with not a lot of time to write a blog. So, for today’s story, I am going to reprint a guest post I did for The Gutsy Generation. I don’t think I ever posted it on my site so this might be the first time you are reading it. I really enjoyed writing this one so I am so happy to reshare it with everyone.
I look in the mirror and don’t recognize the man I see there. The grey hairs are starting to take over on top. I always seem to have a 5:00 shadow. And, are those wrinkles?? When did this all start? I am pushing 40 on the outside, but inside I am still 15. I can picture it like it was yesterday.
There I am, lying in my bed still in my pajamas. I am sweating from my fever. I am no nauseous that I can’t even think about eating…and come to think of it, when did I eat last. Oh no, time to run to the bathroom. Man, not diarrhea again. What is wrong with me? It’s been a week and I still feel like crap. So, now it is off to a new doctor that my pediatrician recommended. It is someone that is a gastroenterologist. What are they??
Ok, so this exam isn’t bad. Don’t know what he found so let’s go into his office to hear what he has to say. What is that you say…possible Ulcerative Colitis. What is that?? How can I have an ulcer..I am only 15? You want me to go to the hospital for a couple of days and get test done. This doesn’t sound good, but I am so tired, sick and weak that I will do anything at this point.
So, this hospital isn’t so bad. Been here for a couple of days. Everyone seems nice. Oh boy, time for another test. I have to do an upper GI. What is that?? Ok, drink some liquid and get x-rayed…I can do that. What flavor do I want? Can I have vanilla or chocolate…wait…all you have is strawberry?? I hate strawberry. Oh man, this is horrible tasting. There is no way I can get this down. Wait!!!! Don’t put that tube up my nose to force the liquid down…I will drink it. I promise. Just let me wipe the tears away first. I want this to be over.
What a day…oh, hi nurse. Enema? What? A colonoscopy. This can’t be good. But you’re a cute nurse, so I’ll let you give me one.
I will get Demerol and Valium. Ok. They will relax me and take away the pain while the scope is in…ok. Wait…I feel that. Ow, this hurt. Oh my god this really hurts. I can’t watch the monitor because there are too many tears in my eyes. When do the meds kick in? Should I be in this much pain?
Been here a week. When do I get a diagnosis already? Here comes the dr. Ok. IBD. Ulcerative Colitis. What is all this? Thanks for the pamphlet…but what is this disease I have??
That was my short version of how I found out I had Crohn’s Disease. Yes, I was originally told UC but after finding a good doctor, I was told I had CD. This was all back in the 80’s, before computers and the internet. I had no clue what I had. I read the literature from The Crohn’s and Colitis Foundation of America but it never really hit home of what I had. I couldn’t talk to others with the disease and I went through my teens and 20’s without any real knowledge of my disease. I was always told I had a mild case of CD, but going through the journey alone, I had nothing to compare my symptoms to.
Fast forward to January of 2012. I was in the middle of really nasty flare and going to the bathroom 30 times a day. I was on Humira 40 mg every week. I was so depressed that I had convinced myself I was going to need surgery. I thought I was going to need a “bag” and it hit me….I don’t even know what they look like. The internet had been around for a good 15 years now and I never looked up or researched anything about my disease…so here I go.
And that is how I turned my life around and became an online activist for IBD. When I started researching my disease I found a number of inspiring people that showed me that no matter what my disease brings me…it is not who I am. I have a life to live and I shouldn’t let some symptoms run my life. I felt like I was entering a new phase with my disease. I grew up alone with my Crohn’s and there is technology now that can make it so no one would have to ever go at this disease alone. So that is my mission now.
When I write or talk, it is experience and advice that I spew. I want to be able to help all the youth out there that have this disease. I know what it is like to be a kid and have all the problems that come with IBD. Inside, I am still that little kid. Because I lost my childhood at 15, I chose to hold onto it mentally. I have the knowledge of an adult, but the drive of a kid. I like to joke around. I like to explore. I like to have a fun and be carefree. There is time later to act like an adult.
I started www.aguywithcrohns.com
with one thought in mind…to help anyone that needed it. I try to give out advice on what I have learned throughout my life so others can learn from it. I want people to know that they aren’t alone and if no one else listens…I do. I am here to listen and help. Doctors don’t seem to truly care much. Friends seem to get annoyed to fast. Parents just want to do what they feel like they should be doing to help, whether it works or not. But online friends seem to listen no matter the situation and are always there. That is who I am. I am only a keystroke away. I might not always have an answer but together we can find it.
As I look back into the mirror, I can still see that 15 year old. The lines are growing. The hair is changing. But I can see him in the eyes. I see the twinkle. I have made it 24 years with disease. No matter what happens…I can live life. The disease hasn’t beaten me…and it never will. And that is the best advice I can give anyone….Never let it beat you…you are too strong.