Sunday, July 24, 2011

Hospital Stay

Once it was determined what was happening - it was decided that a few days in the hospital were needed and test run. I don't remember all the tests but I know it was a few various x-rays and a TB test. The TB test was to make sure I was clear to start Remicade. That was the next medicine my GI wanted to start me on. I guess that it is hard on your immune system so they need to make sure you are clear of TB first! I was along for the ride at this point.

I had blood drawn daily. 3-4 doses of Morphine daily. Liquid diet (for the first 4 days) and lots of other fluid like things going in me!

Tuesday was my daughters 9th birthday - I was so sad to be missing out on her big day! My family came in from Arizona to swoop her up and spoil her in my place. They ended their afternoon with a stop to see me. We celebrated with cake in my niece Amelia even came along. I am so thankful to my family for picking up the pieces while I was in the hospital. The hardest part of the day was missing our traditional family birthday dinner! Luckily everyone stepped up and Abbie had a great time - even minus mommy!

My birthday girl!!!

Eating cake with Daddy - Great Grandma smiling in the background!

Happy girl - all smiles!

Wednesday I received my first does of Remicade. It seemed ok - the LARGE dose of benedryl knocked me out for nearly 3 hours! I was still in a fair amount of pain though. Then - to make matters worse - after 3 days my bowel movements settled down - and pretty much stopped! Yes - from one end of the spectrum to the other! Now I couldn't go at all! They put me back on a soft diet to try and help things but nothing was getting me going. So - my GI prescribed Go Easy - and A LOT of it! Finally Thursday evening I was able to go a little bit - it was determined to go home and try to recover there.

So - home I went on Friday - 8 days after I was admitted. Not sure if I was any better than when I went in. But that seems to be the case with this disease. Time to create a new normal all over!

What I wouldn't do at this point for the 8 pills a day plan!

Thursday, July 14, 2011

6MP and Me

My 6MP journey began on January 5, 2010. The plan was to take the meds for 2 weeks then have blood work done and re-evaluate where to go from there. I guess that the blood work was to make sure nothing crazy was happening! So - wednesday (1/5) took first dose...felt ok - but by the evening was pretty nauseous. Day 2 - more nausea and now fatigue. But - on the good side - the frequent bowel movements were become a little less often!

January 8th was my 11 year wedding anniversary!!!! Since I had been in a flare for nearly 3 months by this time we didn't plan anything big for our anniversary! Tim (my amazing husband) booked us into a hotel in Los Angeles for an overnight get away and arranged for the kids to go to his parents house for the weekend! His plan was to have a nice dinner and then go to the club on the roof of the hotel! It was so sweet of him to plan something like that - and normally I would have been super super excited! Well - seeing the way I had been feeling - I suggested a more low key location a bit closer to home! So - Pelican Hill Resort in Newport it was!!!! I was very excited for it because I had heard amazing things about it! Every room is a private bungalow!

So Saturday was day 4 on the 6MP - the nausea was still in full effect as was the fatigue. I was still having cramping that came and went too! But - 11 year anniversaries only come once so I was determined to suck it up and have fun! Even bought a new dress :)

Some friends met us for cocktails and appetizers by the pool - we were all dressed up! It was so fun! I even splurged and had 2 glasses of champagne (probably not smart on the meds but I didn't care!) Here is a pic of my amazing husband of 11 years and I that night!

It was a nice night - wish I would have felt better - but it was still a great celebration!!

After I managed to get through that weekend the nausea and fatigue continued to get worse everyday. I re read the pamphlets the pharmacy gives to you and it said those were standard side effects. So I never called my GI to report it. After all - he said it would take time for the medicine to work! I plugged away! Just surviving! The cramping was still on again off again - still fairly frequent bowel movements but the nausea was slowly taking over everything!

Did I mention that not only is our anniversary in January - but both our kids birthdays? And it is the start of the competitive cheer season for my daughter too! So through all of this I was planning 3 birthday parties (Brady had 1 large one but Abbie had 2 smaller ones-one for cheer friends and one for school friends) and getting Abbie ready for a cheer competition.

So January 15th - Brady's actually birthday - rock climbing party for 20 of his friends then family birthday dinner later that night! Then Sunday the 16th - Abbie's (all day) cheer competition! Ok - so I love pictures so I have to post one from each of those events!

Brady coming down from climbing to the TOP!
Abbie is the 2nd one from the left!!!
By the time the cheer competition hit, I had gone to carrying lots of mints with me (they helped with the nausea) and wearing the seasickness bands! I was game to try anything. I know - at this point I should have called the doctor - but I had too much going on and I kept telling myself that the pamphlet says this is normal! I survived it but barely! One more event to go - Monday the 17th was a holiday from school (Maritn Luther King) and it was Abbie's cheer friends birthday party!

My birthday girl!

OK - so I survived all of those events! The kids went back to school Tuesday and I collapsed. Wednesday the 19th was the 2 week mark - off to the lab for blood work! Thursday I was in bed most of the day just resting - telling Tim I over did it form the weekend and I would be fine with some down time!

Tim usually rides his bike every Friday morning - Friday the 21st I asked him not to go (when the alarm went off at 5:30) because I didn't think I would be well enough to drive the kids to school! He stayed home - got kids ready and took them to school! I told him I just needed to sleep it off - maybe I was getting a bug! He left me with some Sprite and a bagel and said he would check back on me later. Thank God he did! By 11 am I had a 104 degree fever and could barely move. Pain level at a 9. Off to the ER we went!

It was determined that I had a reaction to the 6MP and that it was no longer an option for me to take!

Back to the drawing board we went!

Sunday, July 10, 2011

7 year itch

I guess that is what I had!

I was very lucky for 7 years.....I know I bitterly complained about 8 pills a day as a 26 year old....but all in all I felt good! I had a few flare ups here and there - but all in all I was good!

My GI had me on a every 2 year colonoscopy routine. So - December 2007 I went in. All looked good - all the biopsies came back ok - plan was to continue with what was working! And to repeat colonoscopy in 3 years! Woo Hoo - felt like I graduated a bit!

In spring of 2009 I began a new diet plan. The lady who was training me convinced me to try to live a gluten free life. She showed me all sorts of studies that said it would help my UC. I reluctantly gave it a go! It was very hard in the beginning but it did make my tummy feel less bloated and I could eat more salad and veggies without so much pain! So - I stuck with it. I did have a few cheats here and there - particularly at weddings and such - but all in I was gluten free!

Jump ahead to October 2010 - not feeling great! Wondering why the Gluten free plan was not working as well! The list of foods that were super painful kept getting longer and longer. It was 2 months till my scheduled colonoscopy. I figured to ride it out till then - it would be ok! I was also in the middle of running the largest fundraiser for my kids school. The big day was the first weekend in November - I chalked up my feeling awful to the stress from that event. I kept telling myself that once that was over I would be just fine again.

The fundraiser came and went (super successful though I might add - raised over $100,000 for the school) and I was still feeling awful - actually some days awful was a nice word to describe how I felt. It was finally colonoscopy time! My GI said after looking at my scope that my insides can no longer look this way - we needed to try something new! He told me I had 2 choices:

*Infusion based medicine

The infusion based medicine scared me a bit - started to get memories of the PICC line! So I said lets try the 6MP. After all - I have a girl friend who has Chrohns and has been on 6MP for 3 months already and was feeling great! I immediately text my mom with the news and she got on the computer and started the research on the drug. What we then found out over the next few days was a bit scary! 6MP was a form of chemotherapy? Could that be true? Could that be good for me?

I had the required blood test done to see if I was a candidate for 6MP - this was right before christmas. The doctors office called a few days before the new year and said the 6MP was a go! So - I filled my prescription and began taking it right after the new year! I said 2011 was going to be a great year - and I was hopeful that this new medicine would make me feel good as new! I was looking forward to another great 7 years!

Here is Heather and I toasting to 2011. I rallied for New Years Eve - didn't feel great but was determined to ring in 2011 the right way! With great friends and the love of my life!!!! Didn't get a pic of Tim and I together that night though :(

Thursday, July 7, 2011

Where my fight began.....

I was not given a diagnosis in these 11 days. No colonoscopy was ordered. The initial thought the crazy doctors approached me with was AIDS! They asked me if it was ok to run an HIV test! I had no problem authorizing that because i knew it was not what was wrong. The infectious disease doctor was reaching for anything. When that came back negative (DUH) the plan became get me stable enough to send home!

I was sent home with a list of medicines, a list of doctors to schedule appointments with, an appointment for a home nurse to come to my house that night to teach me how to care for my PICC line and hook up to the nutrition I needed.

After about 2 weeks home the GI doctor the emergency room assigned me finally ordered a colonoscopy. Being pregnant, I could not be given the good medicine they normally do - so I was awake for the entire thing! Fun huh? Ulcerative Colitis was the final diagnoses. Steroids, Colozal and what ever other magic stuff they put in my TPN (bag of nutrition) was the plan for the next 4 months!

Skip ahead to delivering a happy, healthy, 8 lbs 10 oz baby boy - and that was 3 1/2 weeks early! Brady Patrick Harris was the best thing I could have gotten out of those 5 months of agony!

Couldn't find a picture of him at birth - this is him at 1 year old!

After Brady was born - I announced I was all better - they removed the PICC line and I began a normal life! That was until October of 2004 - it all came back! Another colonoscopy and another confirmation of my disease! Back on Colozal. It seemed to do the trick. 4 pills in the morning and 4 pills at night! I complained profusely about it - hated being 26 years old and taking 8 pills a day! Little did I know what was ahead of me!

Why the blog?

I've decided that it is time for me to have a place to jot down my struggles, triumphs, successes and failures when it comes to my battle with Ulcerative Colitis. I have found so much strength in reading so many other blogs in regards to my disease. I have found myself spending hours reading the ups and downs others have experienced. i sit at my computer crying because I have been there too! If anything - it is reading these other blogs that makes me feel a bit more normal!

I don't plan on advertising my blog - but if you find this and it helps you - then that will be an added bonus!