If you threaten to pull a feeding tube out...

Things get done, FAST!!!!

Now, I am not normally prone to dramatic fits to get things done, but these last two days certainly brought out a little drama queen in me.

I have been going back and forth with my Dr.'s office, the medical supply company, and my insurance company. No one was submitting the correct paperwork to get my formula authorized.  The medical supply company had already sent me two cases with no proof it would even be paid for and I couldn't keep expecting this.  So, when I was down to the wire...meaning- if they didn't send the authorization by lunchtime I would miss the cut-off for the formula to be sent next-day air.  Once I ran out....well, nothing else can be forced down the tube and actually using my mouth and throat for actual eating is out of the question (oh!!! the gagging!)

So, I brought out the big guns.....  it went a little like this.

Me:"So,  I was just calling to get some instructions"
Nurse: "Instructions for what?"
Me: "Well, your office has failed to send the authorization that was needed for the medical supply company to send me more formula.  I have called and talked to three people, who have all assured me it would be done yesterday, and it still has not, so I am going to run out on Sunday.  So when I run out....I'll be pulling this tube out and I need to know...  Is it kinda a yank, or a pulling type motion.  Is there danger of aspirating it into my lungs????  I really need detailed instructions, since this is what I will be forced to do on Sunday.  Any tips you can give me???"
Nurse: "Uh, Uh, hold on....... "

Well, wouldn't you know my doctor comes on!!!  The paperwork was completed within 15 minutes and my formula is on it's way.

P.S.  I was secretly hoping she would tell me how, so I could just go ahead and do it....she never did:(

6 days in

Well, I've made it six days.  Six looooong agonizing days....
Here's a sneak peak into what goes through my mind throughout this whole thing

"Hey...you have a tube in your throat. Get it out."
(2 seconds go by)
"Hey...you have a tube in your throat. Get it out."
(2 seconds go by)
"Hey..."

Sprinkle in some violent gagging fits and there you have it.

I still haven't seen an improvement with my Crohn's.  This makes me wonder how I am supposed to reach remission with this.  I see my doc one week from today, which is about half way, and I hope I have a big turn around by then- or this thing is outta here!!!

What goes in the tube?

Breakfast, Lunch, Dinner, Snacks and Dessert.........blech :)

Is that a tube up your nose?!?!?!?!?!?

Well.....my Crohn's journey continues.  I have had a feeding tube placed and will be 'eating' this way for a month.  As shocking as it may be to some, I feel it is the lesser of two evils. 
Let me back up a bit and go over the last couple of months.
Once Paleo put me in remission, I stopped taking the steroids.  Things started to decline a bit and so, in trying to halt any progression, I went back on the steroids.  The steroids work as usual and a month later I could go off of them.  Well, again, symptoms start to peek through and I was back on the steroids.  Well.....this time, the steroids stop working.  My arthritis was intense, I started having eye issues (look up extra intestinal manifestations of Crohn's) , along with appetite loss and nausea.  My doc wanted to try Prednisone. (Uh, NO THANKS!!!)  The side effects of Pred are gnarly, I wanted to avoid it altogether.  There has been a lot of research lately showing that Enteral Nutrition (tube feeding) is nearly as effective as Pred!  It allows the guts to rest while returning the gut bacteria to where it needs to be. So here I am.
They inserted it yesterday, and I start the feeding today. It is a bit more than I expected and I must admit that I have had some doubts about this decision.
I'm still a bit gaggy and sore but that should let up in a day or two.
I'll keep my blog updated......thanks for coming over and checking up on me!

my old friend, steroids

Yep, I am back on the 'roids....
My guts are actually doing pretty well, right now.  It is the extra-intestinal manifestations that are giving me a hard time.  Namely, arthritis.
So, I am back on them and now really considering the Remicade.
Waking up every morning feeling like an 80 year old is getting old :)