Favorite Quote

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

Thursday, May 6, 2010


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...


R_Murf said...

I'm glad your blogging again. Stay healthy Emma. I'm praying for you. Say hi to Matt for me.

Grammy said...

I love you my "BABY GIRL", take care of yourself and everything will be OK,....can't wait to see you in about six weeks....give my love to my boys....a big hug and kiss for you..