Monday, March 16, 2009

First Post. :)

Hello All,

As you can guess by the title of this blog, it is going to be about Crohns Disease.
In March 2008 I was first diagnosed and my life has been a crazy roller coaster ever since. Actually it is a blessing I was finally diagnosed. For the past 3 years I'd been living with terrible stomach pains and the first handful of doctors that I visited claimed that I had a stress induced ulcer or acid reflux. But no matter how many Zantacs I swallowed, this stomach pain just was not improving.

Starting in late 2007, early 2008 I lost over 40 lbs as my stomach pains became more and more intense. In Nov. 2007, I was unfortunately involved in a car crash. During the examination afterwards, a routine CT scan showed extreme inflammation in my guts. That gave me a starting point and for the first time in 3 years someone recognized that my stomach pain was not an ulcer.

That being said it still took over 5 months and 2 Gastrointestinal doctors, an endoscopy, an MRI, multiple CT scans and finally a camera pill before I was officially diagnosed. I was actually relieved in a way. I had a name for this evil stabbing in my guts and I was told there was treatments.

Immediately I was placed on the evil Prednisone. Side effects galore. I could hardly stand the adjustment period. I had the jitters, dizziness, mood swings, weight name it. Then in July 08, I had my first Remicade infusion. I was scared to death. There can be some serious side effects/reactions to Remicade and you don't know if you will experience one until you try it.
Luckily I did not have a reaction and I haven't had one yet almost a full year later.

Initally it worked well. About 3 weeks after my first infusion, my Crohns went into remission. Then in Dec, one week after my 7th or 8th infusion, I had a severe flare. This landed me a day in the hosptial and I've been fighting this flare ever since. I just tapered my self off Prednisone again but I am still flaring. Two days ago I woke up and the entire inside of my mouth was covered with ulcers. My bathroom frequency has increased. But I refuse to take Pred again. It took me from the begining of Dec to nearly April to wean myself down. It's obvious to me that Remicade isn't working for me anymore and Pred is only a crutch. A dangerous crutch.

I'm going to do something drastic. I'm putting myself on a full liquid/soft diet. I've read studies of folks over in the UK that have had great success on Modulen. (A liquid meal replacement.) It's expensive but insurance will cover it, but sadly it's not approved in the US. So I cannot get my hands on it. Apparently the FDA would rather have Crohns patients stay on chemicals, drugs and infusions rather than have simple diet changes. Modulen has a 90% remission success rate.

So while I cannot do Modulen, I can try my own version of a liquid diet. I can also try something called Elemental diet. Which I can get here in the states but first I want to try cheap and simple. Boost, Ensure, Herbalife shakes etc. For soft foods I will continue to eat tofu, puddings, oatmeal, soft cereals with soy milk etc. I just have ot make sure that I keep my protein and nuterients up.

It's my goal to put myself in remission without the help of Prednisone. This journal will be a testiment to my journey.

So if your a fellow Crohns cronie or a family or friend of a Crohns patient, feel free to pull up a seat, have a cup of coffee and stay awhile. I hope that this journal will help you in some way.

Many Blessings!


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