The Inconvenient Truth

Life has been quite a roller coaster of relentless emotions since my last blog entry.  I can't believe it's been almost a year.  So much has happened.  I've grown more than I could ever imagine.  But it took me hitting rock bottom to get there.

I guess I'll start from the beginning...

After leaving the hospital last September my body was in complete shock.  My joints were extremely swollen, full of fluid and creaky, reminiscent of an 80 year old body, not that of a 29 year old.  My body ached.  I whimpered on the drive home.  My body was revolting because of the swift prednisone taper my doc put me on(going from 80mg of Solu-Medrol [intravenous steroids] to 30mg of oral prednisone in 8 days).  I was miserable but appreciated the quick taper.  I swore I would never go on prednisone again after 2008, and held out as long as I could in 2010, but ultimately it was the prednisone that saved both my life and my colon last September.

Two weeks post hospitalization my doc asked me how I was doing (I had to see him weekly for about a month and a half).  I said my colon was happy, but the rest of my body hurt.  It felt much older than 29.  It was during this time that I told myself I would never go on prednisone again.  To me, the side effects just weren't worth it.  And still aren't.  I have no plans on ever putting that drug in my veins or mouth again.  

After about a month and a half my joints returned to normal with the exception of my hands.  To this day I still occasionally feel like I have jugs in my hands.  It's a weird "full" feeling that I can't quite describe.  Occasionally, on cloudy days, random finger joints will ache, though that is slowly going away.  Let me remind you, it's been almost a year.  My ortho doc said it will take time.  I'm still being optimistic and know that it will all work out.

A combination of an achy body and unhappy hands sent me into my first bout of darkness.  I was so frustrated.  I wondered why the rest of my body should suffer simply to save my colon.  I was pissed.  I mean, I did EVERYTHING right.  I tried so many damn diets, ate as bland as possible, didn't drink anything but water and freshly juiced vegetable and fruit drinks, slept between 8-10 hours a day, and my colon still flared.  I had essentially let my entire life, and that of my husband, revolve around my freakin colon since 2006.  I felt so damn powerless.  I had no control, even after doing everything right.

These feelings bred bitterness.  And anger.  I swore that if my colon started to flare again, it was coming out.  I began to despise it.  I was done living my life around it.  I felt that it had robbed me of my career, my self confidence, my athletic ability, my health, and at times, my future.  I felt left behind.  It seemed that everybody around me was progressing and I was somehow stuck in a stagnant cloud, not able to escape.  I wanted to scream, and at times, I did.

In late December I hit rock bottom.  I lost it.  I just couldn't take it anymore.  The bitterness, anger, fear, jealousy, uncertainty, and sadness had gotten the best of me.  I curled into a ball on the couch and screamed, cried, and kicked.  I just could not take it anymore.  My wonderful husband curled around me and tried to calm me down.  Looking back, I feel for him as he probably thought he was going to have to drop me off at the looney bin.

During the darker times of this past year (most notably December) I found solace, peace, and God in the mountains of Washington State.  I also learned the biggest underlying struggle I have had in my life since being diagnosed in 2006.

It started when I told my husband that I wanted to summit Rainier for my 30th birthday and summit Everest for my 40th.  He then told me to take it one step at a time, but knew deep down that my stubborn nature was yet again taking me to the extreme.  We'd been through this several times with cycling.  I had such lofty goals that, due to illness, I could never quite achieve because my body was not ready for intense racing.  But, as usual, I always had to push the limits, only to fall short time and time again.  He did not want to go through this same vicious cycle with mountaineering.

It wasn't until we were at dinner with our good friends, Steve and Janelle, that the inconvenient truth came to light.  I told Steve and Janelle of my summit goals, but they knew the true driving force behind it.  Eloquently put, Steve said:  "Achieving the impossible is not going to make you happy."  And I began to cry as a great realization released itself from the depths of my inner being.

It now all made sense.

Since being diagnosed in 2006 I had pushed myself, to a fault, to achieve things that were far fetched in the hopes that I could prove to myself that Ulcerative Colitis did not run my life.  I felt that if I could win a bike race or summit numerous mountains than I would validate myself as an individual.   What I failed to realize is that those that matter most to me do not care about any of those things, they just want me to be happy and healthy and not waste my time chasing "dreams" fueled by misguided emotions.

I am forever indebted to Steve and Janelle for this very critical turning point in my life.  I would still like to summit numerous mountains,  but instead of being so focused on the summit, I want to enjoy every step of the journey.  If it happens, it happens.  If it doesn't, it doesn't.  Regardless, I'll embark on each journey for the right reasons.

Sometimes the truth hurts, but it changes each of us for the better.

Climbing my favorite mountain this winter!!

Home Tomorrow!!

I received the excellent news that I will be going home tomorrow!!

Today my doc switched me from the liquid diet to the low fiber-low residual diet...so we'll see how that goes!  As long as I tolerate the solid food, I'll be outta here!

My labs have been stable the past couple of days, my blood count has stabilized, my protein levels are back to normal (protein was pretty much non-existent in my body when I arrived), and I seem to be nourished enough to be able to go home!  I've had a few visits from the nutritionist and will pretty much be on the low fiber-low residual diet for the next couple of weeks before introducing more exotic foods into my diet.

I do have to say that the all liquid diet wasn't so bad.  This hospital has an amazing menu (everything is ordered a la carte, which totally rocks).  So, I had all the variety of broths, jellos, non-sweetened apple juice, and gummy bears (YES, gummy bears are part of a liquid diet) that I could have, whenever I wanted it!  

I was also switched from IV steroids (Solu-Medrol) to oral steroids (Prednisone) yesterday.  I'm still on Total Parental Nutrition (TPN)  and still have my PICC line in, but all that should be changing tomorrow!  Hopefully I'll be able to leave tomorrow evening, once I've been properly tapered off of the TPN and my PICC line has been removed.  I'll keep you posted!!

The below picture shows how the PICC line and TPN work together (the PICC line has been the best thing ever, considering I haven't been pricked with a needle since getting the PICC line put in on Tuesday evening)!!

I also just ate my first solid meal!  It consisted of sour dough bread, turkey breast (I was shocked that it was REAL turkey, like, Thanksgiving turkey slices), low-fat mayo and swiss cheese.  I also ate a scoop of mashed potatoes w/ a little bit of poultry gravy and a few scoops of white rice.  It tasted absolutely amazing!

Unveiling my first solid meal!!  Yum!!

Anyway, I'll definitely let you all know when I'm home!!  Again, thank you ALL for your kind words, support and encouragement!  It has helped Matt and I more than you'll ever know!!

Below are random pics of my hospital stay...

TPN and the huge triple pump giving me my nutrition!

TPN up close...the white bag is my fats, the yellow is all my nutrients/electrolytes/etc, and the clear is my fluids

Day view of downtown Seattle from my first room

Night view of downtown Seattle from my first room

Mt Rainier view from my second room

Busting free on Sunday afternoon to get some sun!!  I almost got stuck in the rotating door!!

Flooded In Light

I would first like to start off by thanking everybody for their encouraging posts on facebook, encouraging phone calls, texts, and emails.  You are each individually helping me find the strength and courage I need to continue down this difficult path.

A little background for those of you who don't know the series of events that has happened over the past couple of days: On Tuesday afternoon I was hospitalized by my gastroenterologist due to severe malnutrition and an uncontrollable bloody flare.  I was having roughly 20 extremely crampy, bloody, bowel movements a day.  I was losing a bit of blood and there wasn't any indication that it was going to get better.

The course of events that brought me to this point...

As I have stated on some of my earlier posts this year, I started flaring lightly towards the end of January.  The light flare was controlled by the suppository canasa, as all symptoms would cease when the suppository was used.  I was on a thirty day cycle with the suppository, and every time I stopped, the light symptoms would return.  Because this happened twice I was instructed to stay on the suppositories (in conjunction with the Remicade Infusions and daily Lialda use).  This routine worked great until I got food poisoning from an undercooked piece of chicken in May.  We have been unable to get complete control of the flare ever since.  

In the meantime, the Remicade was becoming less and less effective every time I got an infusion (I have received a total of 3 infusions for 2010).  Remicade is supposed to last for two months, but mine went from lasting 8 weeks every time I got it in 2009, down to 3 weeks at it's weakest this year.  This was not good enough for me, as I've never been one-hundred percent comfy taking a biologic.  

So, Remicade, this pic is for you, from me, with love:

Remicade is made out of mouse antibodies, hence the pic

Ah, how I digress.  

My curent update...

I had numerous tests done from hospitalization day one, and based off of the results have been given the most fantastic news one could possibly receive in my situation.  I mean, regardless of what happens from this point forward, nothing can take the joy, faith, and hope I have after receiving this news from both the colorectal surgeon and my gastro doc.    

All of my tests (including the colonoscopy I received on Thursday) points towards colitis NOT crohn's. This is HUGE for me.  HUGE!  I cannot quite put into words the genuine huge sigh of relief I made when I found this news out.  I'm still on cloud nine over it...and that is no over-exaggeration. 

For those of you not too familiar with the differences, I'll give you a little background.  Crohn's Disease and Ulcerative Colitis are chronic illnesses, both of which are classified as Irritable Bowel Disease.  This is completely different from Irritable Bowel Syndrome. 

Crohn's Disease can affect your entire digestive tract, from your espophagus all the way down to your anus.  Colitis, on the other hand, is restricted solely to your large intestine.  They are both nasty illnesses and are often misdiagnosed as the other since they both have similar symptoms.  

Another major  difference between the two are, colitis can be "cured," so to speak, if the entire colon is removed.  Because one cannot live without the entire digestive tract, surgery, though often necessary for crohn's patients, often gives temporary but not permanent relief.

So, you can understand my position being absolutely ecstatic about everything pointing towards colitis.  Like I said, even if the colon may have to go in the future, I can deal with that.  So I poop in a bag, who cares.  My friend Adrienne, my hubby Matt, and I already have plans for bags with some supa haute couture decorations, should that time come.  I'm one to always try to find the positives in the negatives, and, well, this will definitely keep me rolling.  Should the time come, you all will have a visual on what we've been talking about, as I'll proudly bare all (c'mon now, y'all know I'm not the shy type)!!

My current course of action is now this:

My colonoscopy showed that though my colon is extremely diseased, it is starting to regenerate its tissues, cells, skin, etc.  It is trying to heal, and we believe this is due to the steroids that I am getting through IV.  Steroids have always put me in remission in the past, but should not be used long term (check my old posts to see what happens when you're on the "juice" for long periods of time).  When I was getting treated in Virginia the docs used steroids as a crutch, and should have never had me on them that long (on and off for 2.5 years).  My super awesome gastro doc here in WA is only putting me on IV steroids for a week, and that's it.  And that, my friends, is when the true test begins.  I was expecting the steroids to work, but what will happen when I'm off of them?  We shall all find out together.  

My doc is hoping that once I'm off the steroids the meds Lialda and Azathioprine will pick up where the steroids left off and help bring my colon back to health.  If they do not, then my colon will come out.  As of now I  still have a 50/50 chance of getting my colon removed.  We really won't know if it's going to happen until a few days to a few weeks once I'm off the IV steroids (which I get my last dosage of steroids on Tuesday).  The docs, myself, nor anybody on this earth has control on what will happen next.  It is all truly in God's hands.  That is how it is meant to be, and I am 100% okay with that. 

I want you all to know that I am at peace with the fact that my colon may have to be removed.  I am a realist, and this is what happens when you have a severe form of IBD.  I am OK with it.  Life moves on, and will move in the right direction.  

This year has been rough for me b/c I have had symptoms for pretty much the entire year of 2010.  It wasn't too bad until May, when my quality of life changed dramatically as I often times had trouble controlling my bowels.  Every time I got into a car I was terrified of having an accident.  To help calm my anxiety (which I'd never suffered from before), I made a makeshift toilet and put it in my car.  I'm quite proud of my toilet really.  I cut off 2/3rds of a paper grocery bag and placed a garbage bag inside.  It wasn't perfect, but it definitely would have gotten the job done!  I almost had to use it once, in fact I had my pants down to my ankles in public, but I'll save that story for another time!

Matt and I went to Hawaii with my parents in late June and I always had the underlying thought in my mind of having an accident.  Activities were tailored to bathroom availability.  I had to drastically limit what I ate to try and counter any type of possible bowel urge.  Beach time was somewhat stressful.  I mean, who wants to poop in the gorgeous hawaiian water?  I didn't want to be responsible for poisoned fish!  Sheesh!  In all seriousness though, it was nice getting some sun and spending time with family, but definitely wasn't the worry free, relaxing Hawaiin vacation that I was anticipating. 

The only relief I got in between bouts was the small blanket of time the Remicade Infusions got me through (which did get me through a quick trip to Vegas, too bad I hadn't figured it out yet when we went to Hawaii).

Fast forward to this past Tuesday, where I had not left my house for almost three weeks with very few exceptions.  My husband wanted to take me out for my birthday (August 17th) and I didn't want to go due to fear of having to constantly run to the bathroom at the restaurant.  It was a depressing day because not only did I have absolutely no control of what was going on with my body, but I did not even recognize my own reflection in the mirror after showering to go to my birthday dinner.  The girl staring back at me in the mirror was not a face I recognized.    

The only place I made a priority to go to was church, because I needed the spiritual nourishment of communion.  Without faith, hope, and love we have nothing.  I have kept my faith through the darkest hours, and have kept my faith when I've been well.  If this disease has taught me anything, it is to never, ever give up on faith.  

Once the more severe symptoms came in May I started to starve myself in order to get day to day things done.  Grocery store, starve.  Out to dinner that night, eat minimally in the morning and then starve.  Doctors visit in Seattle, starve.  That was the only way to guarantee that I would not have an accident.  And even then, I was scared one might "sneak out."  If I knew I was going somewhere I would either eat as minimally as I could or not eat at all, depending on how severe the symptoms were at the time and what time the scheduled event was.  That, my friends, got old REALLY fast.  I couldn't keep it up anymore.  It was breaking me, both physically and mentally.  It was really trying to break my spirit, but I didn't let it...

I have never struggled so much emotionally as I have since May.  But, I'm in good hands now.  And it has now come to an end.  One way or another, I will get well, with or without my colon.  It's all in God's hands now, and whatever the outcome may be, I will accept and welcome it with open arms.  

"Head Full of Doubt / Road Full of Promise" by The Avette Brothers has been my theme song through this ordeal.  If you haven't heard it, download it.  It's a good one!

I will keep you all updated via my blog as I hear anything else!  It took me a while to write this entry b/c  I often get tired and have to take several breaks in between.  However, now that all the pertinent info is out I'll update much more often with quick little posts!!  Again, thank you ALL for your support.  It means SO MUCH to both Matt and I!  Until next time...

Stripped

A lot has happened and changed since my last blog entry. As it turns out, yes, it was a flare that started toward the end of January (with very mild symptoms), exacerbated during the food poisoning incident in May, and never really went away.

My last blog entry proved to be false. It wasn't just food poisoning that caused the awful reaction in May. It was food poisoning in conjunction with a flare. The flare was masked for three weeks after my Remicade Infusion, which left me (and my doc), to believe it was solely food poisoning. This proved false when I started having symptoms during my Hawaii vacation, exactly three weeks after my Infusion.

I have not blogged as it has taken me time to gather my emotions, thoughts, and spiritual being as a whole. This past month has been a real challenge on me physically, mentally and emotionally and has left me feeling stripped down to solely flesh and bone and thrown to the wolves for consumption. Thanks to supportive family and friends I am slowly starting to put the pieces back together.

As I figure out how to put this past month into words, I will leave you with an article written about me close to my one year remission date last November. The author of the article, David Longdon, was looking for cyclists with a unique story to tell. I was one that made the cut.

This article can be found at: http://blog.seattlepi.com/velocity/archives/184169.asp

New blog entry coming soon...

Twas Never A Flare At All

Hooray!! Lucky for me my symptoms completely went away on Monday (5/31)! I was thrilled. I got up, had normal poos (yay) and was even able to ride my bike! I was definitely looking forward to my docs appointment the following day and had tons of questions for him. The most important question was why I started flaring at all. In my mind there was absolutely no reason to flare to such a severe extent while on the mouse juice. I wondered if the medicine was becoming ineffective and what our next step would be if that was indeed the case.

Well, my docs appointment couldn't have gone better. In fact, it went so well I was shocked b/c I totally wasn't expecting his diagnosis. I learned that what I thought was a flare was actually a bad case of food poisoning from an undercooked piece of chicken. My doc never once called the near awful week of uncontrollable bloody bowel movements a flare. He explained that because my system is overly sensitive it reacted the way it did to fight off the food poisoning. He said that my body wouldn't have gone from 0-100 (no symptoms to full blown flare) overnight. He also said that if it were a true flare the symptoms wouldn't have disappeared so quickly. In total, it lasted almost an entire week. A seriously long week, but in the past nonetheless.

Note: My husband was also sickened by the undercooked piece of chicken. He had lots of diarrhea the following day but was still well enough to race (he's an animal). His "normal" system was able to fight off the virus in a day. My system, well, you know the story.

We are leaving my meds the same at the moment (Remicade once every two months, two Lialda pills a day, and continual use of the suppositories). Because I have stabilized I can now start weening off the suppositories, so I am now on the "every other day" regiment. Whatever, I don't mind it. Anything to prevent a true flare.

Though I am now stable and "back to normal" per say, I am still picking up the emotional debris of the scary food poisoning. I can't describe the emotional roller coaster I went through. I hit rock bottom. I cried a couple times a day. I couldn't figure it out. I almost let myself feel sorry for myself, but I reminded myself that I am still very much alive and that is all that matters.

I struggled with my "normal" life being stripped from me. I struggled with the fact that I couldn't just jump in the car and drive, that I wasn't riding my bike, and that ultimately food was my enemy. Again.

I then replayed in my mind over and over about how I had gotten so complacent with my food intake. I cringe when I look at my food intake that I blogged about last November. I cringed when I thought of my cookie, pie, cake, heavy sauce holiday food binges. Any poor food choice that I had made from last summer to that moment I replayed in my mind. And I felt so stupid. How could I? Why did I? How foolish of me to get so over-confident.

I guess you could say I blamed myself for flaring. I blamed myself for ignoring what I'd known all along about my inner self. I blamed myself for being foolish enough to think I could work a stressful job. I disgustingly laughed at myself for thinking I was well enough to come off of all meds.

I tore myself to shreds thinking about all the "bad decisions" I had made. I tore myself to shreds until all that was left was my inner core, exposed, and frightened. It felt as though I was barely hanging on and I no longer knew who I was. Uncertainty is a bi**.

The mind is a brutal thing, and I was my own worst critic.

Like I said in my last entry, Cindy helped me start to put the pieces together. I meditated while getting my mouse juice infusion (before falling asleep), meditating that the ulcerations were being pulled from my intestines and that the freshly pulled open wounds were being waxed over by healthy mucosa. As the cool, healthy mucosa was soothing the open wounds it was also sealing them with intestinal goodness, causing them to be scar free.

I made the decision at that point to be very strict with my diet once I again found health and stability. If anything like this ever happened again I did not want to blame myself and strip myself apart. I would want to know that I did everything I could.

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Since recovering from food poisoning and going back into a state of remission I am much more thankful for my medication and doctor. Literally the week of the food poisoning incident I was telling my husband how I knew I was ready to come off the Remicade and how my doc must have it all wrong. In my mind I didn't need it anymore. I can't tell you how quickly I recanted that thought process once sh** hit the fan. I couldn't wait for my infusion. I needed it. It was my first Remicade Infusion that I absolutely couldn't wait for.

This past weekend I told my hubby that I wasn't going to fight with the fact that my body needs the Remicade. I told him that I accept that I need the meds, and that if anything, this incident proved how effective they are. I was putting the struggle to bed. He softly smiled as in saying, "We'll see."

As for my food intake...

Six weeks before this incident happened I was incorporating more raw foods into my diet. I was about 70% raw, usually only eating a cooked meal for dinner. My food poisoning incident took place during my non-raw dinner time, in which I was sickened by an accidental undercooked piece of chicken.

I mostly survived on smoothies and vegetable drinks during the week my body was trying to fight off the food poisoning. I seriously believe that these raw juices/smoothies helped my body fight off the awful infection. Though my life was miserable at the time, I did avoid hospitalization and was able to fight off the food poisoning w/ no antibiotics.

I have continued to be strict with my diet as I refuse to fall back into a nonchalant stance when it comes to food. This week I will blog my food intake so you can see my food choices (and see how drastically different it is from last November). Incorporating more raw foods has been working out magnificently as my poos have been formed and look the best they've looked in months. It's exciting!! If my last statement worries your, remember, I'm a lil' (or A LOT) different...

I now feel as though I have picked up the emotional debris, and am ready to fully move forward. As I move forward I will not let the fear of the past control me, but I will also not forget the past so that mistakes will not be repeated. As the saying goes, what doesn't kill you makes you stronger...

Awake My Soul

Last Saturday I went into a full blown flare. I went from 0-100 with absolutely no warning. My husband had a stage race last weekend about an hour and a half from our house. As we were driving up to the race I almost had an accident and barely made it into the Albertsons (I was just thankful they were open at 0630 in the morning). The second bout came about 20 minutes later. I ran into a mom and pop breakfast place and used their bathroom. As a token of my appreciation I bought coffee, though I don't drink coffee. My body then went dormant until after lunch, where I almost had accident number three. I was briskly walking towards the port-a-potties (at bike races they have a plethora of port-a-potties for the racers). After quickly realizing I wasn't going to make it I ran into this local bar, instantly being out of place. You could have heard a pin drop when I walked into that place. The bartender must have seen the distressed look on my face and pointed me to the bathroom. Phew, I dodged the bullet a third time. Not cool. All in all, I probably went about 10 times that Saturday. Totally didn't see that coming.

Fast forward to Sunday. My husband had the final race that day, which was a road race with a really nasty climb. I really wanted to be there to support him and our team, so I decided that the ONLY way I was going to make it through the day incident free was to not eat or drink until I was close enough to home to be "safe." Sunday morning we again woke up early to make the hour and a half drive. My anxiety was high, and my palms were sweaty as we began the drive. I was, in short, terrified. I was also prepared to pull over on the side of the road and poo if I had too. We ended up stopping four times on our way to the race, but luckily for me, this completely purged my system. I was regretting eating dinner the night before each time we stopped, but was thankful that I had gotten everything out. I did not eat or drink anything from 0530am to 330pm. It was too risky. Once my system was purged I was golden until dinner time. Then the symptoms started up, totally out of control. Watching the race was definitely worth the small sacrifice of food or drink. My hubby and the team rocked and I would have done it over again in a heartbeat.

On Monday I again did not consume any food or drink until late afternoon. I had to go to the grocery store and had an appointment in the afternoon, so couldn't risk it. After I had my uncontrollable bowel movements in the morning and was confident there was nothing else in my system that would threaten an attack, I went to the grocery store. When I got home from the grocery store I juiced some much needed wheatgrass and waited to take anything else in by mouth until after my appointment. I went to my appointment, came home and ate, and awoke the beast. I averaged roughly 20 uncontrollable bowel movements on Monday.

On a positive note, I called my doc on Monday and he put me back on my suppositories (which I use at night before bedtime). Due to the suppository use on Monday night, my symptoms were cut in half on Tuesday, averaging about 10 episodes. On the not so plus side, my anus was (and still is) so cut up that it hurt like no other to stick the "silver bullet" up there. Yowza!! But I am willing do whatever it takes to calm my symptoms. Anal fissures got nothin' on me.

Also on Tuesday my cousin flew in and I was forced to have the shuttle bring him to my house (we live about 1.25 hours from the airport). I couldn't risk it, and boy was I glad I made that decision. Tuesday morning started out GREAT. I only poo'ed twice and thought that I was on the up and up. Well, come early afternoon it was a completely different story and I was running to the bathroom quite frequently. Had I chosen to go to the airport the results would have been disastrous. Frustrating. I was so frustrated I couldn't even drive to the airport to get my cousin. It was demoralizing and extremely emotional for me.

By Tuesday evening I had had a few breakdowns. I was an emotional wreck. A "hot mess" as I like to call it. I didn't have any warning that this flare up was coming. This beast reared its head out of nowhere and was getting the best of me. I felt kicked, beat up, destroyed, hopeless. I tried to pick myself up, but it was hard. I had gone about a year and a half in remission, what the freak happened? And now it was uncontrollable? I couldn't even drive or go anywhere w/out being paranoid I wouldn't get to a bathroom on time? Ak.

Wednesday definitely wasn't much better and I was extremely excited about getting my Remicade Infusion the next day, Thursday(today).

The thought about being excited about my Remicade Infusion was bittersweet to me. Two weeks prior I was talking to my husband about coming off the Remicade. I stressed how I didn't like being on it and that I thought my body was stable enough, or will be stable enough in the near future, to come off of the meds. Oh how wrong I was (again).

Today I woke up and was thrilled I was getting my Mouse Juice (Remicade). I hoped that it would be just what I needed, in addition to the suppositories and my daily dose of Lialda, to completely kick me into remission. I did not eat or drink anything this morning as I knew we were going to make the long haul to Seattle. I only had to stop once while driving (thank goodness). When I got to the Infusion Center I was absolutely thrilled to find out that Cindy was going to be my nurse. From the waiting room I heard her say my name and sparked up. I was definitely going to be in good hands. Because I was severely dehydrated I was a little skeptical about my veins being readily available for the IV. Cindy got it the first try. She rocks. She also called my doc to let him know that she recommended hydration via IV. Like I said, she rocks. And cares. And is awesome. I broke down when talking to her, as I was still in a very fragile emotional state this morning. I was overwhelmed, delicate, and felt like I was, in a way, rolling over and playing dead. How could I have let this happen?

When she started talking to me it felt like a million pound brick was released from my inner being. She reminded me I did nothing to cause this. She also knew that I was up to something that didn't necessarily fit with what my body wanted. And she was right. For the past few months I had seriously considered going to Law School. Everything in my gut and inner being told me that being a litigator was definitely not the right fit for me. But I persisted. Maybe I felt insignificant amongst other young professionals. Perhaps I was allowing myself to once again fall into the mainstream American view that to be successful and important in life you must have an important job, be the number one competitor, and make lots of money. If you can win the pissing contest as far as importance goes than you're a success, right?

Not so.

Cindy grounded me and encouraged me to let the "Type A" part of my life go. And she's right. And I've known this for a long, long time...I just didn't want to accept it. Every time I consider going back to the Intelligence Community, getting a Masters Degree, or going to Law School, my body tells me something different. And deep down I knew that none of those things were the best fit for me. I just didn't want to accept it.

I felt a deep calling for yoga, meditation, and writing. This all just seemed right for me, but for some reason I was unwilling to embrace the obvious. I was unwilling to let go of my old career and old life. I felt strange around peers. I was becoming what I used to make fun of. I sometimes felt weird and out of place. So, I tried to pursue the normal mainstream life. Or kept getting ridiculous ideas about going back to that type of lifestyle. I can now attest, after this experience, I have put that part of me to bed. Perhaps my body was telling me that enough was enough. My inner being was telling me to embrace who I was meant to be and not be ashamed of my not so mainstream lifestyle.

I now accept and embrace the fact that I'm just, well, different.

Derailed

It's been an interesting past couple of months. First off, I want to start out by saying I have truly missed blogging. I know I have been a sporadic blogger, failing to have any type of consistency. I have learned that, in order for me to stay sane and keep a grip on my life, I need to be consistent with my blogging. So much has happened since my last blog entry five months ago (ouch). Now, where to start...

I made my one year remission date on Thanksgiving day. It felt great. I had been, so it seemed, "normal" for an entire year. To explain my current derailment I must go back to what life was like when I first went into remission, on November 26th 2008.

Every morning I woke up I would be paranoid that I would poo blood. EVERY morning. I was scared that my true remission (w/out prednisone) would be short lived. This went on for six months. I was in remission, but trapped in my own fear of relapsing. Being in remission felt so good, I couldn't imagine going back to uncontrollable bowel movements. As is the normal course of things, I slowly started becoming less and less paranoid. I started getting bolder w/ food, and started eating things that I normally wouldn't touch w/ a ten foot pole (heavy cream recipes/fried fatty foods/desserts). I was still consistently eating my brown rice bread, baking my chicken or fish lunches, and consuming my goat products, but added in foods that, if I was flaring, I wouldn't dare eat. Heck, the first four months of my remission I was paranoid to eat anything bad. How things change when life seems somewhat normal.

I feel that my true derailment came during Christmas 2009. By this point I had been in remission for a year and a month, and, naturally, felt untouchable. BIG mistake. This was perhaps the beginning of the end. I ate so SO many Christmas cookies, desserts, heavy cream food dishes, high fat appetizers/entrees. It was nuts. My food intake during Christmas 2008 and Christmas 2009 was like night and day. Literally. But, after a year of remission, I thought I was over the whole Crohn's thing (though I was "inconveniently" reminded of it during my Remicade infusions once every two months).

In fact, I was so confident that I decided it was time for me to come off of Remicade. I didn't think I needed it. I had been stable for a year. I brought this idea up to my doc, and he politely told me that it wasn't going to happen and that plenty of Crohn's patients have been on Remicade for years because their bodies needed it. I was a little angry and thought he was wrong. In my mind, I didn't need it anymore. I decided that I was going to bring it up to him again in a few months, and if he said no, I was going to shop around for a new doc. Little did I know how right he was.

In mid January, Crohn's symptoms returned. It started w/ a puss like poo w/ light bleeding. The first time this happened I pushed it off. After that, it was touch and go. Sometimes I would have bloody poo, other times I wouldn't. This "touch and go" made it easier for me to justify to myself that I was not going into a flare. This went on for a few weeks. Well, the final straw was in late January. I ate baked seafood au gratin, and upon finishing dinner, had to run to the bathroom. Run to the bathroom as in if there wasn't a bathroom readily available I would have had an accident. Puss and blood was present, and that's all that was present. There was no other substance (poo). I've been around the block long enough to know that puss and blood when accompanied with poo are bad, but when alone, is worse. I called my doc the very next day and scheduled an appointment for the following day.

I explained to my doc what happened and he decided that he wanted to do a colonoscopy since it had been a few years since my last one. He had also never scoped me himself, as they were all done in Virginia, previous to my move to Washington. We scheduled my colonoscopy for the next week, and I got my Remicade Infusion a week early. The day after my infusion my symptoms calmed down. There goes my overconfident theory of getting off the Remicade. Yes, my seasoned doctor, Harvard grad, was right. But of course he was, he's been doing this for years.

At this point, I was thrown into an abyss of emotions. I wanted to scream, kick, cry, pull my hair out, whatever would evict the frustration, sadness, unknowingness, and fear out of my soul. This disease was back. Just when I thought I was done with it, it showed me otherwise. When I thought I was well enough to go back to working full time in the Intel community, it was back. When I was convinced that I could come off of the Remicade, it was back. NO NO NO. Why?

I went through a brief moment where I actually felt sorry for myself. A moment where I asked, "Why me?" And then, I quickly realized that I am blessed. I am blessed because I am alive. Blessed because I don't have cancer. Blessed because when not in remission my only issues are pooing blood and occasionally pooing myself. Life really isn't that bad. I can still ride my bike. I can feel the wind on my face. I can walk my dog. I can go out with my husband. As the late Randy Pausch stated, "We cannot change the cards we are dealt, just how we play the hand."

I accepted the fact that, though I had hoped and hoped and hoped, Crohn's was still present. It was controlled for almost a year and two months, and then decided to act up. Luckily I didn't make the rookie mistake and hope that it would just go away. I called my doc right away and got properly treated. My colonoscopy revealed that 6-8 inches of my large intestine was inflamed, but everything else looked great. That was GREAT news. The fix? A suppository!! OH BOY. Lucky, lucky me! And no, I wasn't that excited, I just thought it was kinda funny and should be interesting.

Well, there is nothing fun about the lil "silver bullet" formally known as Canasa. Oh, don't worry, there will be a blog entry dedicated to my suppository experience. It is definitely interesting...

Anyway, I was on the suppository regiment for 30 days and was having absolutely no symptoms. I swore to never fall back into an overconfident state. If my body decided to act up again, I didn't ever want to wonder, what if...

Unfortunately, three weeks after stopping my suppository regiment, I began to have another minor flare. Luckily this happened the day before an annual check-up with my doc. When I saw my doc I blamed it on a homemade chicken taco with way too much cholula sauce on it, thinking that it was the hot sauce for sure that burned my intestines up causing me to have a minor flare (talk about denial). He smiled and asked me when I took my last suppository. I told him three weeks prior, and he told me that, if the symptoms don't go away after getting my next scheduled Remicade infusion to start my suppository regiment up again. It was not the cholula filled homemade chicken taco (though I'm sure it didn't help).

To make a long story short, three weeks after getting my infusion my symptoms returned, so I am currently in the middle of a new suppository regiment. I am currently stable. Can I get a woot-woot for the magic silver bullet? Oh, just wait for the post. If it doesn't gross you out you'll be rolling on the floor laughing your ace off, guaranteed!

So, here we are. I am, again, incredibly anal about what I eat. I have accepted the fact that a career is not in my best interest at this time. I have incorporated more "raw" foods into my diet. I am getting plenty of rest. I'm doing more yoga and riding my bike. Hell, I even raced last weekend. It was incredibly painful but awesome at the same time because I have some of the best teammates one could ever hope for. Much, much more blog entries will come soon.

I've realized that I NEED to blog at least once a week to stay sane, and, hopefully help other Crohn's and Ulcerative Colitis patients along the way. Until next time...

Nothin' Fancy

Here are my Wed/Thurs/Fri meals...

Wednesday

Breakfast: 2/3 slice of brown rice bread w/ organic peanut butter

Snack:      1 Banana

Lunch:      2/3 piece of baked organic chicken breast and cup of vanilla goat yogurt

Snack:      2 ounce shot of wheatgrass

Pre-Dinner Snack:  Smoked Goat Cheese w/ wheat thins

Dinner:    Roasted Turkey (White parts only), steamed veggies, wild rice, sour dough roll

Dessert:    Yummy pear dish over one scoop of french vanilla ice cream (made by Matt's mom)

Thursday

Breakfast: Bowl of oatmeal w/ cut up banana and hint of brown sugar

Snack:      1.5 ounce shot of wheatgrass

Lunch:      Baked chicken spinach salad w/ hard boiled eggs, carrot, cucumber, celery, red bell pepper

Snack:      Roughly one cup of goat yogurt

Dinner:    A combination of chicken nachos and thai chicken penne pasta (we went out to eat    at our local brewery)

Dessert:    Freshly made pumpkin cheesecake

Matt and I met up with some friends for dinner on Thursday night.  I am a firm believer of ordering, within reason, what you want from the menu and not worrying about taking the "healthy" option.  Truth be told, most "healthy" dishes in restaurants aren't healthy at all...including salads and fish!!  Think of it this way, The Cheesecake Factory's grilled salmon ranges between 825-1,861 calories w/ 11g of fat...yowza!  I guess what I'm trying to say is just enjoy your night out and get what you want (within reason)!!  

Friday

Breakfast: Bowl of oatmeal with a hint of brown sugar; 1 slice of brown rice bread w/ organic  crunchy peanut butter, cup of vanilla goat yogurt, and a small glass of goat milk

Lunch:      Leftover baked chicken spinach salad 

Snack:      Veggie drink consisting of 1/2 cucumber, 1/4 beet, 2 large carrots, 2 celery stocks, 1 apple

Dinner:    Cheese pizza, 4 homemade chicken wings

Dessert:    Homemade brownie w/ a scoop of french vanilla icecream and a hint of raspberry sauce

I ate a larger breakfast than normal this morning because I was not going to be able to eat a snack between breakfast and lunch.  Tonight Matt and I are watching Bruno for the first time with our super awesome friends Andy and Sara.  Bruno wouldn't be complete without pizza and some fatty munchies.  Tonight's dinner is an anomaly for me as I normally wouldn't eat any of these foods (besides the occasional cheese or veggie pizza once every now and then).  I've heard crazy reviews about Bruno that has left me more than curious...

Oohh Salmon!

As the week progresses you'll see that my meals get pretty uneventful.  The highlight of my food intake today was eating "island style" wild coho salmon for dinner.  Wild salmon has become one of the most important foods that I eat.  It is incredibly healthy, contains essential fats, and also serves as an anti-inflammatory.  I am, by no means, a salmon expert but do know that it has helped me get, and stay, healthy.  

I only eat wild salmon.  Wild salmon has a great (non-fishy) flavor and healthy red coloring to it.  In my opinion, farm raised salmon tastes fishy, doesn't have the dark red coloring, and is just yucky (to me).  I mean, they swim around in huge nets and eat each other's poop...yeah I really want to eat a fish that does that.  And yes, I'm sure wild salmon eat poop too, but at least they're not trapped in a net and they taste wwaaayy better!  Again, just my opinion...

Here's what I ate today!!

Pre-Breakfast:  2 ounce shot of Xango

Breakfast:  Oatmeal w/ banana and a touch of brown sugar

Snack:  2 cups of Vanilla Goat Yogurt

Lunch:  A cup of leftover pumpkin soup and Baked Chicken Spinach Salad

Snack:  Vegetable Drink!  This veggie drink consisted of two large carrots, 1/3 of a large beet, ginger root, and two celery stocks.

Dinner:  Island Style Wild Coho Salmon.  The salmon is cooked in coconut milk and chicken broth seasoned with curry powder.  Leeks, cauliflower, broccoli, garlic, and onion are sauteed in the broth before the salmon is added.  This is an incredibly tasty meal!  You can cook whatever veggies you like in the broth...it will come out tasting great!!  As an added bonus, curry+salmon is a great anti-inflammatory blend!!

Dessert:  Pumpkin Pie Smoothie  (Canned Organic Pumpkin Pie mix, frozen vanilla yogurt, vanilla soy milk, pure maple syrup, cinnamon, and nutmeg blended).  

Snack:  Vanilla Goat Yogurt

With that, I'll leave you with something random.  I want to see a black bear in it's natural element before I take another vacation out of the United States.  There you have it...

Brown Rice Bread/Monday Meals

After being diagnosed with Crohn's I needed an alternative to whole wheat/whole grain breads, raw fruits and veggies, cow milk products, and a variety of other food products.  Later on in the week I will talk about my alternatives to raw fruits and veggies, cow products, etc.  Today I will give you the low down on my alternative to whole wheat/whole grain breads...

After going to the local organic store or "crazy people organic store" as some of my friends would call it, I learned that brown rice bread is not only easily digestible, but would also give me the carbohydrates I needed to sustain me for long (bike) rides, or any hard workout.  So, in short, brown rice bread became my alternative to whole wheat/whole grain breads as I could no longer digest either of the two.

When I first grabbed the frozen "brick" of brown rice bread from the organic store's freezer I definitely didn't think it was going to taste very appetizing.  It was seriously like grabbing a frozen, packaged brick out of the freezer.  At that point, however, I didn't care.  I was open to try anything and everything that would potentially work and give my body something it could digest and also the fuel it needed to get through day to day activities.

A few things I've learned about brown rice bread...

Brown Rice Bread is stored in your refrigerator once you bring it home from the market.  I have found that microwaving or toasting the bread prior to consumption will make for a better tasting piece of bread.  Brown rice bread is pretty bland, but again, gets the job done.  I also put organic jelly or organic peanut butter on my slice of bread aka slice of "brick" to make it more tasty.  Once you get used to it, the blandness sorta disappears!  Now, I love it!

Two years later, I still rely on brown rice bread.  I can now digest whole wheat/whole grain breads but still choose to eat a slice of brown rice bread prior to working out.  It's worked for me this long, so I might as well stick with it!!  So yes, I would choose a slice of brown rice bread over "normal" bread any day of the week!

Now, as promised, here is what I ate for the day:

Pre-Breakfast: 1.5 ounce shot of Xango

Breakfast: Brown Rice Bread with Organic Peanut Butter

Snack:  2 ounce shot of Wheatgrass

Pre-Lunch:  2 cups of homemade Pumpkin Soup

Lunch:  Baked Organic Chicken Breast Half Sandwich.  To make this sandwich I used about 2/3 of a seasoned baked organic chicken breast, one slice of 9-grain bread, Omega-3 Mayonnaise, red onion, and shredded pepper jack cheese.

Snack:  Roughly 1 cup of watermelon

Dinner: Chicken Spinach Salad w/ red bell pepper, carrot, hard boiled egg, red onion, and turkey bacon.  I used Red Wine Vinegar and Olive Oil as my salad dressing.

Dessert:  Homemade Pumpkin Pie Smoothie 

Snack:  Roughly two cups of Vanilla Goat Yogurt

This definitely wasn't my "normal" diet routine while flaring.  I have been in remission for almost a year and have re-introduced a number of new food items to my digestive tract.  I can now handle raw fruits and veggies.  Most recently is my body's ability to digest spinach.  About two months ago I decided to try and introduce raw spinach back into my diet.  I ate a homemade spinach salad to see how my system would react.  Well, the next day, everything was great!  This was a major milestone for me because, when sick, I couldn't even eat steamed spinach let alone raw spinach.  My digestive tract couldn't handle it and the spinach would very painfully come out the same way it looked going in.  I know that sounds kinda gross, but it is what it is.  It has taken my digestive system almost a year to heal and get strong enough to handle more roughage type foods. 

I still can't, however, handle normal lettuce or leafy greens.  Spinach is the only green leafy veggie that my system can handle at the moment.  I'll take what I can get and have decided to permanently retire "normal" lettuce and any other leafy greens besides spinach!  Who needs them anyway!

If you have any questions, please feel free to email me!!  Stay tuned for tomorrow!!  =)