Monday, February 22, 2010

Living with Crohn's Disease

I have Crohn's disease.

I was first diagnosed in July of 2005.

For as long as I can remember, I have always had trouble with my stomach.  I just always chalked it up to something I ate causing the pain.  Little did I know that I suffered from a far more serious and possibly life-threatening condition.

For most of my life I exhibited only minor symptoms, ranging from occasional diarrhea and mild cramping to more severe abdominal pain and tenderness.  It wasn't until the summer of 2005 that things really started getting bad.  I remember spending most weekends in bed, curled up in the fetal position because I was in so much pain.  These once ocassional minor symptoms were suddenly getting worse and beginning to interfere in my daily life.  It fact, when it was at it's worse, I was going to the bathroom between 10-15 times a day.  And to make matters worse, all of this was happening while I was at work.

How embarrassing??!!!

I was scared to eat.  I was scared to leave the house.  I was losing weight FAST and I was in serious pain.

Luckily, my family doctor was familiar with my symptoms and suggested that I see a gastroenterologist.  A colonoscopy confirmed the diagnosis.  I had Crohn's disease and I had it BAD!!  There were basically open sores or blisters all along my large intesting.  No wonder I was in so much pain.

I started on a 28 pill drug regimine immediately.  Unfortuanetly, I was in such bad condition and had lost about 20 pounds in a week, that I also spent two weeks in the hospital getting fluids and steroids to get the disease under control. 

Fast forward 4 and a half years later.  I still have Crohn's disease.  There is no cure at this time.  Right now it is under control.  That doesn't mean I don't have the ocassional bout of pain and diarrhea, but I'm not in constant pain like I once was.  I have learned what foods I can and cannot eat.  Too bad these can change regularly and no one knows why.    

It is such a frustrating disease because there is so much of the "unknown". 

I am currently taking only 6 pills a day to keep this disease under control.  I also get a 2-hour IV infusion every 5 weeks to help with the constant joint pain that comes along with the disease. 

There are still times when I'm scared to eat.  It is especially hard when we are out at a restaurant or at a friend's house.  Not the two most convenient places to have an episode.  I still deal with some joint pain but nothing near as bad as it was in the beginning.  There are times when I go weeks with being able to eat whatever I want.  And then there are days when I want nothing more than Cream of Wheat because I know that's all I can handle.

I try my best to keep a positive attitude.  I try to keep my chin up.  Even though it's hard at times, I REFUSE to let this disease rule my life.

I can't.

I have too much living to do and too much to live for.       



The Beaver Bunch said...

I can't imagine. I just can't. Here I am being whimpy and whiny about a stupid cold that's taken my vocal cords captive and you live with this every day.

Thanks for reminding me that my sorry little pity party is just that...sorry and stupid.

Emmy said...

Wow, I am so sorry.. that would be horrible. That is a lot of pills in one day. Glad they were able to figure out what was causing all of that pain, and hopefully medical science can figure out more better ways to fix/treat it.

Momma Fargo said...

My brother was diagnosed when he was 14 and told he would not live past 32. He is now 39. After finding a wonderful doctor and working with the Mayo Clinic, he has been living a normal life. The only thing he has stayed away from was alcohol. Keep up the good attitude, I think that is most of people's success.

Shannon said...

Can't imagine either! I'm a big wimp about stomachaches. I would be in the nuthouse :) You're a strong person!

Summer said...

Thanks for sharing your story! You have an amazing outlook! I am the same way I have to much to live for and I refuse to let my disease take over! I have Dermatamyositis which is a rare Auto Immune Disease! I was diagnosed a little over 1 1/2 ago! I go to JHU and am on Chemo drugs....the next step is the infusion once a month! The hubs gives me injections once a week and I am on 17 meds! I am sooo glad they have yours under control! You are such an inspiration to me and I truly thank you for sharing your story! You little one is just to precious for words!
Have a Happy Tuesday
Summer :0)