Sunday, August 19, 2012

Let the poop storm begin!

The eve of the Colonoscopy prep... 2 table spoons of MoM.

More updates to come.

Friday, August 17, 2012

It's back.

After 3 years of remission, it's back and with a vengence.

I can't even bend over properly because my gut hurts so bad today. I have a colonoscopy scheduled for next Tuesday.

Oh joy indeed.

I feel so poorly infact, that I can't even catch up on my life in the last three years.  Lets just say, 2 beautiful children, a house and a minivan.

Friday, March 27, 2009

Oh joy!

I've just gotten word that a co-worker that n one is really a fan of is takening up residence next to my desk. This is going to be an exciting next 8 months. (His expected stay in my area.)

In other news, I've discovered that eating tiny amounts is helping. I still haven't gone full liquid, being that I lack the self discipline to do so.

And I'm still working on my writing. The hardest decision was deciding on what PoV to write from. I am pretty certain now that the story will follow a third person omniscient. That being said, deciding on the subject matter is also a problem. I have two stories in my head right now and both battle upon my wits equally. I'd like to combine both but I'm not sure how Angels and Vampires would work out together in one story. (I know two cliche subjects right?)

Thursday, March 26, 2009

Mouth Ulcers!

My mouth for the past few days has been covered in varies degree's of ulcers. There are tiny ulcers, big yellow pussy ulcers...painful ulcers...and one I keep inadvertently biting on the side of my cheek!

This is my first incident of having mouth ulcers with Crohns. I know its possible to have them from mouth to anus and I guess if this is what's going on in my gut, I can understand why it feels like knives stabbing me down there. This is miserable. I had a case of thrush waaay back when I was a young teenager (caused by antibotics) and this is it all over again. Heck I almost choked myself trying to swallow some warm tea!

Looks like I won't be eating much today. (Which is good because I hate food btw...)

But my hubby wanted to go have lunch at Quiznos to try their new torpedos. I suppose I can have some of their soup.

In other news, I've recommitted myself to writing more. I really want to get a book out there before I die and preferably while I'm still young enough to reap the rewards!

Wednesday, March 18, 2009

Another day...

Nothing really exciting to report over the last two days. I've been slowly transitioning myself into liquid soft. I should just bite the bullet and do it but its hard. Everyone loves food. You need food to live, so it's not like you can go cold turkey.

Today I ate a bit of fried fish. My stomach rebelled. Obviously not a wise idea. So for dinner tonight I had some hummus and pita bread with a touch of salad. Normally I would eat the whole salad but with my stomach acting out...

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!