So this week is all about spreading Crohn's Disease Awareness. The Crohn's and Colitis Foundation of America has a website with tons of info on it, please feel free to check it out, just click on the logo or go to www.ccfa.org. Maybe it will answer some questions you have that are hard to ask the person suffering this personal and oh so sexy illness!
People ask me what Crohn's is and I try to figure out the nicest way to say I have a shitty situation. I haven't quite adjusted to the whole having to discuss bathroom issues so matter of fact and nonchalant. Crohn's is an Autoimmune Disease (AID) that mainly affects the digestive system, but does affect the rest of the body as well. I have to take a lot of medication daily, and also take biologics (chemotherapy). Yes they use chemo for Crohn's Disease. This is the way they keep the immune system compromised (simply put they keep it in check) and when its cut down to that level the symptoms calm down and you are given some quality of life back.
The daily issues you will deal with even when in remission depend on the severity and progression of your Crohns. I was blessed to be diagnosed in 2006, a previous GI doctor told me should I have seen him with the same problem a decade earlier surgery would be my only hope. So to complain about giving myself an injection of chemo seems ridiculous! I mean really, its not THAT bad! At least there is a lot of hope for me and for my future, and that is all thanks to chemo. To this day I have never had surgery to remove damaged intestines etc.. and for that I am extremely grateful!! So when most people hear the word chemo they have this awful feeling that comes along with it. To me it represents a second chance at life, and one with a possibilty of comfort and quality. At this point they will keep me on these chemo meds indefinitely, and I accept that fate.
I have had stomach issues all my life.. I remember being in preschool and feeling like I was going to vomit every morning before school. I have had what I call morning sickness my whole life. Every morning I wake up with a stomach ache and sick in one way or another. There are times that are worse than others, but never is there a morning free of stomach issues.
In 2003 I was diagnosed with Ulcerative Colitis. I thought it was no big deal. People talk about stomach ulcers all the time and my ulcers just happen to be located in my colon cuz I'm cool like that. Whateva! Don't hate cuz I am special! Maybe I was in denial or just plain ignorant and unwilling to do the research. So in my mind I played it off and ignored it. I saw no reason to take all these pills they told me I needed.. The Asacol alone was 9 pills a day! I went through a time I had no insurance at all and so I learned to deal. I researched a lot, saw a nutritionist, a nautropath, I mean I tried it ALL. In the end stress and time did me in and I was worse than ever.
In June of 2006 I was finally diagnosed with Crohn's Disease. When the call came I was shaking, crying, completely lost it. I did not know how to react!! I knew Crohn's wasn't a good thing but it was an answer to what was happening to me and in turn meant they could begin treatment! That initial flare raged on through nearly 5 years, I hit remission in February of 2011.
Unfortunately once my Crohn's cleared up I noticed my joints getting worse. In May I was diagnosed with Rheumatoid Arthritis which is still in flare. My Crohn's was getting jealous of all the attention my joints were getting so it came back to party it up this fall. This flare is different, but I know my doctors are on top of it and I do not think it will be long before they say I am in remission. I do my part and just pray things improve!
It is difficult handling life with both illnesses causing so much pain and discomfort. There is no escaping it. Even sleep gets interrupted by pain or having to vomit. You can medicate, meditate or find some way to make it tolerable. If you can tolerate it there is a chance at improving and maybe even enjoying life again. When the flare hits hard it feels like it will never end. You are constantly playing a waiting game as your body turns on itself and reacts to treatment. But in all that suffering are small gifts and blessings, you just have to keep your eyes open. Life is what we make of it and I am a firm believer in karma. My choice is to be a positive person and make the most of my life with these limitations. My choice is to be grateful for what I do have instead of counting everything I don't. And my choice is to speak up, even if it is a blog literally about poo I happen to do ;)
On May 12, 2012 I will be participating in CCFA's Take Steps walk to raise awareness and funds to support more research. Oh and don't you worry you WILL be reminded! My team is gonna be called "Rock Star Bellies" or something like that. We are gonna rock for the cure bitches!