Had to share

A great friend and fellow IBD'er posted this and it so explains the junk we go through daily!

Hope this helps make sense of my insides on a bad day!  And gives you a chuckle like it did me!

Surviving....

Just a little over a year after my set back - I think I am mastering new life.  I just came home from a 10 day vacation with my family and am proud to report I SURVIVED!   Ask me this time last year if I ever thought I could travel for 10 days and I would have for sure answered NO!

I'm so thankful for the amazing doctors and nurses behind me.  And more so my amazing Family and Friends!  The medicines I am currently on seem to be doing the trick for the most part.  I'm not going to lie - I do have to be careful and watch what I do and eat.  But I am managing it!  New normal right?  That was what I was aiming for!

So - I now live my live in 8 week cycles.  I receive my Remicade infusion and then the 8 weeks begins!  Plan as much as possible the important stuff in the beginning of the 8 week cycle.  Kind of sucks when you think about it - having to plan that much and always be counting weeks!  But I will take it for now because I am in such a better place than I was last year!

My doctor is ordering a new set of tests this cycle - he wants to check the levels of the Remicade in my body at the 4,6 and 8 week marks.  I am hopeful that if it shows very small amounts as early as 6 weeks then I can get my infusion cycle time frame increased.  That would mean feeling better more often!  Yeah for that!!!!

Here are a few pics of me with my family on the vacation I not only SURVIVED but had a great time and created so many Magical memories!!!!

Money down the drain....literally!

So with the new year starts new deductibles too! January was a shock when I went to pick up my monthly prescription of Lialda - $760! Yickes!!!!! I then called my GI doc and asked for a few samples to help delay the next big hit hoping that some of my other bills would go through so my deductible would be met. I had an infusion in the beginning of february and was simply waiting for Hoag to bill Blue Shield.

Last week I finally saw the Hoag bill went through and now my deductible was met...so off to the pharmacy I went to pick up my Lialda. It was reduced to $360. I was hoping for free but I was $550 away from my max out of pocket for the year still so they only took care of part of it. :(

Anyway - I had to pay again for this month!

Last night I was taking my 4 pills just as I always do after I brush my teeth. One pill slipped out of my hand and down the drain it went! i was so frustrated. After all that I have been doing to make these affordable I go and drop 1 precious pill! That was $6.33 down the drain! UGGGHHH!

Lesson learned - now I will now close the drain plug to my sink!

Just another trial and tribulation to life with UC!

2012.....fresh starts - I hope!

2012 began with a colonoscopy for me! Fun times huh? I know you are jealous. I was actually really looking forward to it. It had been a little over a year since my last one. In December 2010 my colonoscopy was bad - very bad! My doctors words to me were "we can't let your colon keep looking this way!" So - flash forward to January 2012 - words from doctor this time were more like "if I didn't know better I would say you had no disease in your colon at all!"

Well - what does all that mean?

Basically it means that the Remicade infusions are working well! They seem to be healing my colon to about 90%. That is very good news. My lovely insurance company will still only pay for them every 8 weeks though. So - for about 2-3 weeks out of every 8 weeks I have increased pain and sometimes extreme discomfort but for the most part I am fighting through this lovely disease.

My new years resolution this year consisted of one main thing.......BEING HEALTHY AND STAYING OUT OF THE HOSPITAL! So far so good! Lets prays that I can maintain this state and push though the bad times....because finally the good are out weighing the bad!

Thankful

As the holiday season begins to hit with full force I find myself feeling sorry for myself and my inability to function at the level I desire to. The busier schedules, fuller daily task lists, parties, cookies, baking, wine, over eating, special kid activities.....they all add up to complete exhaustion and aggravated gut!

But - as I was having a pity party in bed last night, I flashed back to how I felt this time last year. 100 times worse than I feel right now! I still managed to get through it all last year and create amazing memories with my family. So - with that ah-ha moment I now move to extreme gratefulness for what I DO HAVE right now!

With all that I have I am going to live in the moment this holiday season. Yes- there will be gut issues, an infusion mid way through it all, Dr's visits, meds to take.....but again - 100 times better than last year!

So for any of you with Gut issues big and small - try to put it all in perspective this Thanksgiving week especially. Save the pity parties for another day because this week will be gone too quickly. We all are here for each other - my amazing family and friends and especially my amazing UC support group! I find strength in everyone of you daily! I am beyond thankful for all the special people in my life who support me during my rough times. It is for those same people that I am choosing a different attitude for the rest of this year for too!

Blessings and prayers to everyone! Treasure Thanksgiving 2011 and all its ups downs and in-betweens! I know I am going to!

The great wonder of what is around the corner

So now that I received my infusion (10/13) and have come back around from feeling yucky....I'm doing pretty well! Why is it that when I am feeling well I can't just focus on that? I try so hard to enjoy the days of feeling "normal" but somehow multiple times each day I find myself go back to...."when am I going to feel bad again?" And there are some days when I even go all the way to..."what if it hits me hard again and I end up in the hospital?"

These feelings do limit me. The best solution that I have come up with is maybe it is time for some acupuncture again. Maybe I need to recenter my thoughts on a more regular basis. I DO want to be 100% present and these "what if's" take that away from me all too much!

On another note...I attended the CCFA conference this last weekend at UCI. The biggest thing I left there with is....I will take what I have right now. My disease isn't the worst it could be! I am very lucky I have avoided surgery to date and I'm going to do my absolute best to continue down the surgery free path!

I survived New York!

I got back from a 3 day trip to New York on Saturday night. I has been very worried about how I was going to feel the entire trip seeing that I was so close to next infusion time. Well - happy to report I felt pretty good the entire trip! Only had some pain and discomfort on the last day. So - I questioned myself - how did I do that???

Come to think of it - we really didn't eat much....and we did eat it was sharing a meal. It comes back around to eating less is better on my tummy! Now that I am back home and to my normal routine that is proving harder to keep to. I have to make sure the kids eat as normal as possible and that proves harder for me again. I've already had more stops in the restroom in 24 hours then I did in the 72 hour New York trip!

I hate that - but I guess all in all I can't complain....I survived New York pretty care free...that I what I wished for! I can grin and bear it here at home!

Infusion is in 3 days!!!! Yeah.....time for some good feeling days!

Not a Happy Camper...

Well - just got the call from Blue Shield rep - the audit yielded a NO response again! No luck with changing my infusions to every 6 weeks. YUCK!!! I at at week 6 1/2 right now and have had increased symptoms every day! The worst part about it is it is causing me to miss out on things and make different choices than I would had I received my infusion last week.

For example - my kids had no school last friday - it was a 3 day weekend!!! Normally that would be yeah!!! Time for fun and games. But it ended up physically exhausting me and not allowing me to do it all! We began the day by going to Disneyland...the plan was only for a few hours. We were there under 3 hours and I was dragging the last hour for sure. Came home and was in bed for 3 hours that afternoon...only got out because my daughter had to be at her cheer practice and I was the only one around to drive her!

Saturday we stayed home and did a whole lot of nothing, hoping I would be recovered and we could do something fun sunday! Well - Sunday came and I had to cancel taking my kids to the local carnival because I just wasn't up to it!

This is the part of the disease that isn't talked about! It is the stuff in life that I, a 33 year old wife and mother of 2, miss out on! It is not fair! I know I need to stop complaining and just life what I can do! But - it really isn't fair. I don't feel like I am asking for too much. These 2 1/2 weeks of a downhill roller coaster ride are not fun! And now as I wait out the last week my concerns go towards what is this doing to my colon? I work so hard to keep it healthy. The Remicade helps to heal it....what is it doing now as I wait? How many times can my body be "ok" with this roller coaster ride before it stops dealing with it? I want to keep my colon!!!!

So now that I have ranted and raved....I'm choosing to end this with the good stuff happening right now! I'm not bleeding! I still can go out and function semi normally. I can eat solid food still (only in smaller portions). I'm home with my family everyday and not in a hospital. I have medical insurance that will pay for Remicade every 8 weeks! I have an amazing set of friends and family behind me willing to fight the fight along with me!

With all that said it really could be MUCH worse!!! I will take what I have been given and push ahead! But I still wish Blue Shield would listen a bit more to me!

Life on Remicade

Well - its been 9 months on Remicade now! It has had it's ups and downs but for the most part - I'm feeling good. It took until July for it to fully kick in. I had to really fight through symptoms such as nausea, extreme fatigue and muscle aches. I lived on mints.....slept about 12 hours a day and stayed off my feet as much as possible. I was pretty desperate in June and did a month of acupuncture to help me get through week 4-8 of my infusion cycle.

The acupuncture was a great experience. Dr. Albertson at OC Acupuncture was amazing. So kind and caring - she really took the time to listen to all my complaints and help me. I went 2 times a week and began to feel a small amount of relief. It was my infusion at the end of June when I think longer term relief began.

I felt great the day after my infusion....and the best part was I felt GREAT for 5 more weeks - all in a row! That was something I had not felt since October - 9 months prior! At week 5 I started getting the same symptoms back....luckily not as bad. I then received my infusion in mid August at the 8 week mark. This one took about 2 days to kick in....then once again I was back to feeling GREAT!

At my follow up infusion appointment with my GI we discussed the roller coaster my body went through in the 8 weeks between infusions. He decided that there was no need for that and suggested that we move my infusion cycle to every 6 weeks instead. That was the best news I had heard in a long time.

The ironic part of this is that I was excited to be going to the infusion center more often! Really excited! The opportunity to feel better more consistently gave me something to celebrate! I did flash back to when I was first diagnosed with UC in 2003. Back then the thought of taking 8 pills a day devastated me. Now nearly 8 years later I'm over the moon to have an IV stuck in my arm every 6 weeks and receive medicine intravenously for 3-4 hours! Funny how life changes!

Life was great....that was until about 2 weeks later I got a call saying Blue Shield had denied the request for moving my infusions to every 6 weeks! WHAT? How can they do that? It had to be a mistake. Did they not see the notes my GI doctor sent them as to why this was NEEDED? Here is where my fight began! I started calling Blue shield - filed a audit request immediately and followed up daily! Finally they gave me the name and number of my audit worker. I thought this was a small victory. Sadly I have learned it is getting me no where. Now 4 weeks later I still don't have an answer.

My 6 week infusion that I was so so excited for should have been 3 days ago! I should be feeling great right about now! No symptoms, increasing energy....NORMAL! But, unfortunately thanks to Blue Shield I have symptoms. Not only do I have the typical nassau, fatigue etc....I also have increased bowel movements, stomach cramping and problem eating normal meals.

Monday is 1 day away...back to calling my audit rep and praying that I can get an answer. Not only do I pray I get an answer....I am praying that I get the answer I need! The approval for my infusions every 6 weeks!

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 room...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!

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!

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

*6MP

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 :(

Where my fight began.....

I was formally diagnosed with Ulcerative Colitis (UC) in October 2003 - I was 25 years old. My symptoms began in September 2003 - I was about 20 weeks pregnant with my 2nd baby! As anyone with UC knows, the symptoms all pretty much start out the same. Frequent diarrhea, bloody stools, stomach cramping, fatigue, nausea, dehydration, and that’s the short list! Well - being 4 months pregnant and experiencing all of this - landed me in the emergency room! After 10 long hours in there - I was admitted. During my 11 day stay - I had preterm labor twice, too many meds to remember, morphine 3 times, and ended up with a PICC (permanent IV) line for nutrition for me and the baby!

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!