Favorite Quote

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

Thursday, May 27, 2010

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.

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...