I Can Feel Them Breathing...

I thought FOR SURE I would be in remission by now.  My doc gave me steroids on Friday, and the 'roids have always calmed down my gut and kicked me into remission.  Not this time.  I am extremely frustrated but also pretty nervous.  The 'roids aren't working and I feel like something is wrong.

I already told you about Friday and Saturday's escapades.  Well, unfortunately, Sunday was no better.  I had about 15-20 episodes on Sunday.  I was very nauseous, weak, and definitely didn't want to eat anything!  I forced myself to drink an 8 oz can of "unflavored" Peptamen.  Let me tell you,  Peptamen is disgusting.  I have found that if I put it in a water bottle with a "squirt" top it is a little easier to handle.  I still can't help the uncontrollable contortion my face makes after I take a sip.  It's just that gross.  I'm not sure how to describe the taste, but can tell you that it tastes kinda like metal (whatever metal tastes like).  And I thought evaporated milk was bad! Please!

Well today I've managed to have thirteen episodes so far.  I'm weak, tired, dizzy, the list could go on and on.  Maybe I had a small glimpse of hope that with my lack of eating I would get better.  Well, I haven't, and that's why I'm concerned.  I'm just losing straight blood.  It looks like crushed up bloody oatmeal (I'm just trying to keep it real and tell y'all how it is).  But I shouldn't have any substance coming out, that's the problem!  I haven't eaten anything!  You know, it's days like this I feel like like giving up.  I feel like throwing my hands up in the air or burying my face into my hands and just completely breaking down.  I was doing everything right before this relapse.  I was so careful about everything.  I was eating healthier than anybody I've ever known, was exercising regularly, getting plenty of sleep, wasn't stressing out (too much)...and I still relapsed!  I mean seriously, what gives?

I'm not going to give up, though at times it does seem quite tempting.  I can't tell you how many times I've just wanted a piece of pizza these past few weeks.  I'm not going to give up because I constantly remind myself of the sacrifice my father made for me on December 29th, 2007.  My father walked nineteen miles in eleven degree weather in the mountains of New Mexico.   Let me tell you something about my dad.  He is 270 lbs and six feet tall.  He's also from Arizona.  Walking nineteen miles in the mountains in eleven degree weather wasn't exactly a walk in the park for him.  But he did it for me.  He made a sacrifice for me so that I will eventually be healed or stabilized.  He pledged a "Manda" for me at the Chimayo Sanctuary.  I had no clue what a Manda was or even what the meaning of true faith really was until December 29th.

Manda [Mahn'-dah], f. 1.  Offer, proposal.  2.  Legacy or donation left by virtue of the last will.

~Velazquez Spanish and English Dictionary

My dad went forth with a personal sacrifice in hopes that God would heal me.  And He will.  Just not yet.  None of us really know what God has in store for our lives.  I don't understand why He has chosen this path in life for me, but I have now learned to welcome it and just give up total control and trust that things will get better.  I have no control over the war in my gut.  I've done what I could and the rest is up to God.  And I know I will get better.  That's it.  It's taken nearly two years for me to get to this point, but I'm here now.  That's what matters.

"Learned quick, knew what to say

Then three Angels walked my way

In Spanish tongue they knelt to pray

And said, "God keep him safe

From screaming voices"

They became my family

Outstretched their hands are on my head

You know, I can feel them breathing

They actually knelt down and prayed for me

They actually knelt down and prayed for me"

~HRSA by Blue October

 

Hello Chipmunk...

I went to the doctor yesterday because I have been flaring for the past three weeks.  Due to the severity of my condition he decided to put me back on prednisone(steroids).  I can't say I was surprised, but definitely frustrated! Prednisone is the only medication at this point that actually keeps my body in remission, but the side effects are terrible!  Just look at the picture to the left!  Do you see my chipmunk face?!  That picture was taken exactly a year ago.  I went from 105 lbs to 133 lbs (I was 133 lbs in that pic) while on the 'roids.  At 5' 1.5'' 133 lbs isn't exactly flattering!  Oh well, I'm used to the weight fluctuation.  I just wish we could actually find a medication that works without me having to go back on the 'roids.  

Last night was pretty brutal.  Between 7pm last night and 8am this morning I had between 15-20 episodes.  I lost count after ten or so.  Continuously waking up in the middle of the night to have episode after episode definitely ruined my night and my Saturday plans!  It was, by far, the worst night I've ever had with this disease.  The good news is, at least I am now on the 'roids, so I should be in remission soon!

Today the weather was absolutely perfect, capping out around 64 degrees.  I am not happy to be cooped up in the house today!  The women and men of TriPower raced today and I KNOW did well!  There is nothing sweeter than winter training paying off!  It makes all the long cold training days worth it!   I would have been out there cheering my teammates on if I was not a slave to the pot.  

I am a little frustrated at this point but trust that things will get better soon, they always do. I haven't built my GYGIG fundraising page yet, but will post it on my blog as soon as I do. =)

My Story

As many of you know, I have been battling with Crohn's Disease for the past two years.  I have been hospitalized twice, and have almost lost a portion of my intestines (lucky for me, I dodged the bullet each hospitalization)!  Below is a "brief" description of my struggle with Crohn's during the past two years...

I first became ill in April 2006.  I started having bloody bowel movements and for some odd reason thought it was no big deal.  After a week of bloody bowel movements I finally made an appointment to see a doc.  After fecal testing and me getting so sick I couldn't hold anything "in" (even drinking a sip of water sent me running to the bathroom) he made me an appointment to see a Gastroenterologist.  By the time I got to the Gastro doc (about three weeks later) I had lost fifteen pounds, was having 10-18 bloody bowel movements a day, and looked like "a corpse" as my girl Christi put it (I love ya girl)!  My first colonoscopy showed that my entire large intestine (aka colon) was inflamed and full of tiny red ulcers.  I was then diagnosed (should I say misdiagnosed) with Ulcerative Colitis and given Asacol (mesalamine) and a huge dose of prednisone (steroids).  I instantly went into remission (thanx to the 'roids) and thought I was finally able to live a normal life...ha, little did I know!  After tapering off of the prednisone I relapsed.  I was then put back on prednisone and the vicious cycle began...

I was on and off of prednisone for seven months, only going into remission when I was on the prednisone and coming out of remission (relapsing) about 3-4 weeks after tapering.  My body was deemed steroid dependent and my Gastro doc put me on mercaptopurine (6-MP) which is a chemotherapy drug that doctors use to treat some cancers, especially acute leukemia.  6-MP did not kick me in remission but did make me very nauseous and fatigued.  I had to get my blood drawn every Monday for roughly three months because the 6-MP started attacking my liver and my Gastro doc had to keep an eye on it.  I eventually had to come off of the 6-MP because of my liver.  

Because my body was not able to stay in remission my Gastro doc decided to perform a second colonoscopy and found that I had anal fissures and some activity in my small intestine (I even got to take one of my own biopsies during the colonoscopy!).  I then became suspect for Crohn's and a capsule endoscopy was performed.  After my capsule endoscopy I was diagnosed with Crohn's Disease.  Unlike the tiny red ulcers in my large intestine, the ulcers in my small intestine were big, deep and white (eek)!  In an attempt to keep me in remission without the use of prednisone I was put on Remicade and currently get an infusion once every eight weeks. 

 Despite being on Remicade I was hospitalized in November 2007 due to an awful flare.  I was having 10-15 bloody bowel movements a day and was having the occasional "accident."  I lost 23 pounds and was severely anemic.  My parents came to visit and my husband did a phenomenal job taking care of me (he even gave me baths while I was in the hospital, I never once thought at age 26 my husband would be bathing me b/c I was not physically able to bathe myself).  I was on Total Parental Nutrition (TPN) for a week (I DIDN'T EAT FOR A WEEK)!  Luckily my intestines calmed down and I didn't need intestinal surgery (the colorectal surgeon was briefed btw).  After being discharged from the hospital my arms were severely bruised from the 24x7 TPN and prednisone IV's.  After being discharged I was again put on oral prednisone in conjunction with my Remicade.  

Unfortunately Remicade has not been able to keep me in remission without the use of prednisone.  It has now been six weeks since I tapered off of prednisone and unfortunately I have relapsed.  I have been flaring for the past two weeks.  The good news is, I haven't gotten worse!  I'm having about four bloody bowel movements a day.  My doc put me on entocort vice prednisone.  The entocort has definitely kept me from getting worse but has not yet put me in remission.  I can no longer take prednisone for a long period of time because the prednisone has caused osteopenia in my spine due to me being on and off of prednisone for the past two years.  I am staying positive and not allowing the disease to take control of my life!  I will keep you posted!

On a positive note,  after my serious hospitalization in November I decided to not let the disease control my life any longer and take my life back once and for all.  I joined an awesome cycling club, Team TriPower, and as a result have been motivated to ride and stay positive about my health.  The members on the team are not only fast but extremely supportive and wonderful!  Hopefully I'll be well enough to race with them soon!  

Most importantly, I will be riding 210 miles this August in Seattle, WA in the "Get Your Guts In Gear (GYGIG)" ride to help raise money to find a cure for Crohn's Disease and Ulcerative Colitis.  GYGIG is a three day event, with each participant riding 70 miles each day.  Please stand by for my online fundraising page (I am going to work on building my website this weekend)!  I am participant number S-4.  Both of my in-laws have decided to participate in GYGIG as well!  Each participant has to raise $1900, so between my in-laws and myself we have to raise $5700!  I am completely confident that we will go above and beyond this goal! 

 You all will be able to track my health/training status by checking my blog regularly!  Thank you for taking the time to read about my struggle with Crohn's Disease!