A Remicade Kinda Day

Yesterday was my first infusion.....this morning...I feel a marked improvement!!!!

 

I felt really tired as it was infusing and then spiked a fever...the nurse called it a 'Rogue fever'  ((to my Rogues- haha, I just had to laugh- even my fevers are Rogue- just proves that Rogue stays with you forever!))   The infusion center I went to was amazing!  It was such a good experience.  I go back in 2  weeks for another dose, then 4 weeks after that.  This could be it :)

 

Big day tomorrow

I get my first Remicade infusion.....wish me luck and send a few prayers up for me :)

On the road to Remicade

Still working on the insurance pre-authorizations.....but I should start my first dose in about two weeks.   I also started a strict 30 day Paleo challenge through my Crossfit gym.....strict Paleo seems to work best for me, if only pizza and cheese would just up and die so I wouldn't be so tempted!
Onward!!!!

The Day the Tube Came Out

The tube and all of it's evilness is GONE!
My doctor heartily agreed that this was not working as we had hoped and with a firm pull, that thing was out!  It certainly was easier coming out than going in :)
So, where do I go from here?  It is on to Remicade Infusions.
I start in a couple of weeks (insurance needs to get squared away, first) and after a couple of 'loading' doses, I should get infusions every 6-8 weeks.
My doctor is hopeful that I will see marked improvement after only a couple of weeks and stay that way.
I am a bit leery, as I have heard that one before.

Paleo continues to be a big part of our lives.  I truly believe I would be worse off right now if I hadn't gone Paleo in March. 

I am trying to be optimistic, friends, optimistic indeed.

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 :)

Making Progress...

I have been promising pictures from the beginning but have yet to post some.  Well, even though I am not at my goal, I wanted to show that I have made progress.  It seems like I am losing and gaining the SAME 3-4 LBS!!!  Those evil pounds!
So here is what 21lbs lost, more energy, and feeling good looks like.
Thanks to all those that continue to read my story, I appreciate each every one of you!

All Quiet on the Gut Front

I am three days off the steroids and so far so good!!!!!  No issues, no pain, no nothing.  I am cautiously optimistic :)

Here we go again

We are back from vacation and getting back into the swing of things.  I maintained paleo while I was away and didn't have any major issues.  YAY!!  So tomorrow I go OFF the steroid again.  Second times a charm, right?!?!?
So....here we go again!

Vacation!!!

Two weeks away....I'm excited and nervous.  It will be great to see friends and family after so many years away.  I'm worried about the whole Paleo thing, though.  I have no doubt that I will not attack a fast food place, I just don't feel like messing up my guts, but I worry about how to handle the food thing when it is not in my control- as it is here at home.  And always, in the back of my mind, will my Crohn's act up???   Deep breath....one meal at a time :)

Keep it up!

So I haven't blogged in awhile....sorry! 
I am feeling pretty good.  I was on a double dose of steroids for a week and felt like a CRAZY woman!  I am glad that is over with!  I am now on a low dose and everything is much as it was before.  I'll go off the steroids the first week of July....I admit, I am nervous.
I have hit 20lbs GONE!!!!!
Between Paleo and Cossfit, that fat didn't stand a chance :)
I Crossfit 3 times a week and am noticing all these muscles showing up, some I didn't even know where there before.
All in all, the set back was discouraging, but it made me come to the realization this is a life long illness.  Remission may not be what I thought it was..for me, anyways.  So I need to get to a place where I feel good and am on the least amount of drugs to keep me feeling good.
We are off to Idaho for a couple of weeks and when I return and go off the 'roids I'll let you all know how it goes :)

Set Back

Shortly after I went off the steroids I felt a little gurgle here, a small blip there.  I thought it was just something I ate, or that I was coming off the medicine...it wasn't.  Two and a half weeks after I stopped taking the steroids, the Crohn's flared again.  I am now back on the steroids, at a high dose, and am beyond upset about it.  My diet did not change, my blood showed such improvement, my symptoms were gone.  WHY?!?!?!?!?!??!
I really thought I had 'won the race', seems, though, that I am just beginning.....

Am I still Paleo??????

Haha!!  You must be wondering....
YES!!!!  I don't think I can ever really go back to the way I ate before.  It just doesn't seem worth it to risk falling back down into the black hole called Crohn's. 
Brayden continues to amaze me with his transformation and my Crossfit skills are slowly improving.  I am realizing that I am stronger than I thought.  That is a good feeling :)
Remission feels good!

The Details

I was so excited to post my news yesterday that I forgot to include the details.  The changes in my blood are truly spectacular and must be shared! 

My CRP's (c-reactive proteins- an indicator of inflammation) are with in normal range!!  This is HUGE!  If you look back at my first post, I noted that my CRP's have been continuously elevated since 2008.  This elevation eventually helped steer me towards a Crohn's diagnosis, but shows that I have been dealing with inflammation for YEARS!!!
In eight weeks, I was able to undo what was occurring for nearly 4 years!!!!!!

Next, my iron levels are normal!!!  This last December I had iron infusions.  My iron was so low that simply taking an iron supplement was not an option.  I had to have it intravenously given to me.  This did bring my iron up, but I was told to expect to have iron infusions 2 or 3 times a year for the rest of my life.  Because I had active inflammation in my guts, I was losing small amounts of blood everyday and that just builds to create an iron deficiency and keep the iron below normal, leading to anemia.  It would have been a never ending cycle.  BUT, it has been broken!  I was anemic for 3 years, but NO MORE!!!

My Vitamin B12 is within normal range, as well.  I have Crohn's in my terminal ileum.  This particular part of your small intestine is where we all absorb this important vitamin.  It plays a key role in the normal functioning of the brain and nervous system and for the formation of blood. I was on monthly Vit B12 injections but I no longer need them.  I am absorbing the vitamin normally!

Lastly,  My gut doc has taken me OFF the oral steroid!!!!!!!!  Extended use of steroids is hard on your body.  I have been on them, in a wide range of doses, for nearly a year. I can't tell you how happy I am about this.

Need more evidence that this Paleo thing works???????  Try it for 30 days and tell me what happens!!! 

BIG NEWS!!!!!!!! Cohn's Remission!!

That's right!!!  I'm in remission!!!
My blood work came back completely normal, my immune system is completely normal and my Crohn's symptoms are completely GONE!!!!!
Sweet, sweet remission!!!
Thank you for your prayers, concerns and thoughts! 

New Goals!!

This whole Crossfit thing is really challenging me.

I CAN'T do a pull-up
I CAN'T climb the rope
I waddle for days after I do any sort of squats
The weights I use on my bar are itty, bitty and really quite embarrassing

This is a pretty impressive list of can'ts, which I will turn into CANS!!!!  I'll be sure and post when they come to pass :)

8 weeks in!!

Time flies when you are eating healthy!!!  I am 8 weeks in and doing great!  My weight has stayed the same for the past two weeks, I have changed my workouts so I hope I can push through this plateau.  My Crohn's still has not been an issue.  I see my Dr. on Tues and I am looking forward to hearing what he has to say....hopefully it includes coming off some of the medicines :)
Brayden continues to ROCK! this Paleo thing and I am so proud of him.  I can not only see changes in his body, but in his attitude and energy levels as well.  He will be the first to tell you that he is glad he went Paleo.
Thanks to all that continue to read this blog....it has been such a great experience to tell you about this transformation and I look forward to keep this blog going!