Favorite Quote

"We cannot change the cards we are dealt, just how we play the hand."
-Randy Pausch

Friday, March 7, 2008

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!


Kevin said...

thanx for sharing your story.

and welcome to our club/team!

good luck with everything, and see you soon...


Emma said...

Thanx Kevin! Take Care!

Anonymous said...

God Bless Emma. Keep strong and always remain persistent in knowing you'll win!

Anonymous said...

Emma--YOU ROCK!! So glad to have you on the team. As always, keep shooting me emails or feel free to call if you need anything.


ReDinkyDink said...

I found your blog via a comment on my blog.

Gosh, you have been through a lot. Isn't it an awful disease? I really hope they find something that puts you into long-term remission.

I'm also starting to have problems with the 6-MP. My liver enzymes are high and my muscles have been extremely stiff. The Doc reduced my dosage and I'm going in for more labs today.

I'm surprised you can cycle. I told my GI doc that I was planning to train for a sprint triathlon and she said "no". I had no idea that anything more than a "brisk walk" could make my UC worse!

Emmas Matt said...

Hi Emma!!! I'm glad that I finally got to see your blog after you've put all those hours into it. I miss you tons and can't wait to see you. I'll be there soon!


maricela said...

hi emma this is mari thank you for sharing this with me god bless you keep in contakt love mari

grammy said...

My Baby Girl....Thanks for sharing this with me, I am still praying every day....NUESTRO PADRE ES BUENO CON SUS HIJOS...always remember that...may God bless you and keep your faith...love you mucho mucho...grammy

tia blanca said...

my emma jean! thanx for sharing your story. i wish there was something i could do to make this all better for you. know that tio paco and i will always be here for you. stay strong as ever and keep your positive outlook. i love ya!

Brian said...

Emma, I am glad to hear you are getting better, and the Docs are able to control it.
I can remember when you first were diagnosed when you and I were both are VAW-120.
You were really down about it then. Now, you have moved on, and I am glad to hear it.
Take care and the best of luck!!


Hayduke said...

Emma, you have an incredible story and as we discussed this morning, you have a super-awesome spirit! I am very excited to have you as our newest client at Fitwell Coaching. I am so happy you chose us to be a part of your life Emma. You won't be disappointed.
Chris Haddox

Kurtis Bartelt said...

Hey Turbo

Well the warm water surf season is soon comming to a end, the season missed you this year a few weeks left. Hey your pictures look great by the way.