Wednesday, May 27, 2009

Happy Anniversary

This time last year I was sitting in my boyfriend's black bowl chair reading Cormac McCarthy's 'The Road.' We had just moved into an apartment together, the first time either of us lived with a significant other, and had nothing to fill it with but the few items a college student can usually afford.
You normally begin to make your living quarters your own personal sanctuary as soon as you move in, but our time was spent, respectively, with me sleeping and him working. We did what we could to make our apartment home, but I would resent it for many months to come as a place that felt more like a prison than a place to live.

For several months prior I was sick with symptoms ranging from fatigue and stomach cramps at the beginning to severe blood loss and inability to eat in the end. We had our theories as to what it could be, but the diagnosis I thought would be the worst turned out to be exactly what I had: Crohn's disease-An autoimmune disease where your intestines become inflamed and ulcerated.
And to specify, autoimmune diseases are those whose nature is that your body's immune system is called to act against foreign invaders but instead attacks the very body it was meant to protect.

I went in for testing by having a colonoscopy and endoscopy done in tandem. The preparation for it the night before was the worst part as any patient undergoing these procedures could attest to. I was notified of the results via telephone one week later and that was that. I started treatment with a drug more commonly used for colitis called Asacol and 40 mg of a steroid medication initially prescribed to virtually everyone in my situation called Prednisone.

The first two months of life after diagnosis consisted of menial tasks like keeping the apartment clean and walking to rebuild my strength. At that point I weighed around 105 pounds from the long period prior of being able to consume nothing but chicken broth with the occasional noodle and water. I started experimenting with different things afterward, but my diet consisted mainly of Pamela's Pecan Shortbread cookies sans gluten, pomegranate juice, and hamburger patties with cheese, onions, and ketchup wrapped in lettuce. The meat was available courtesy of my Aunt Yvonne and her cow, George.
Things seemed to be moving in a positive direction, but in retrospect this was due primarily to the fact that I was on such a high dose of prednisone. I made too many mistakes with regards to what I ate including brownies, hamburger helper, and the aforementioned food items.

I can remember in particular one of the last visits with my doctor before summer began to show the ugly side of this disease again. I told him that I felt perfectly fine in spite of the fact that I was still losing blood and that my pills were leaving my body without having completely dissolved. I truly believed things would be better and that I would not feel sick again for a very long time. However, his response was to be cautious because these signs indicated that inflammation was still not under control and that they could easily take a turn for the worst. The last thing he said to me before I left?
'And don't, whatever you do, get pregnant.'

Two weeks later, after being late and experiencing exacerbated symptoms, I took a pregnancy test and braced myself for the nine months to follow.

I developed a fistula, began to lose more blood, and felt the familiar symptoms gradually return again.
I made plans to abort the child and keep the whole affair a secret, but life works, without fail, in ways you don't expect.

I admitted the condition to my mother and we planned together for her to take the baby when it was born as her own. What was once a rejected mass of tissue became a child growing inside of me that I learned to love dearly. But again, life works contrary to your expectations.

We could not keep the symptoms under control, and a vicious cycle began where my illness threatened my pregnancy, and my pregnancy worsened my illness.
All of this culminated in a trip to the emergency room where I had surgery for a resulting ectopic pregnancy. I had lost my baby.
I stayed in the hospital for a week until they were convinced I could walk a few feet on my own. I was on constant antibiotics, fluids, and steroids all intravenously for the duration of my stay. Thankfully, these healed and closed my fistula. The only thing left to contend with was healing from abdominal surgery and a Crohn's flare.
I am left to this day with an all too visible scar across the bottom of my abdomen, a constant reminder of what this disease does best: It is the greatest thief I have ever known. But, as future entries will hopefully show, it is also the greatest thing that has ever happened to me.

The month following was still more of what I had done since I moved into this apartment. I slept and woke only to eat what I could keep down or take my medicine.
I can say in all honesty that so many of my first months here were spent sleeping some days as many as 22 hours.
Don't ever take having the ability to keep your eyes open for granted.
The constant darkness and stale air only served to dampen my spirits. These were some of the lowest times of my life, and I truly began to despise apartment number 9060, my big red couch, and the perpetual hum of the air conditioner.

I had a small two week reprieve where symptoms were mild, but I give credit for that to my supply of percocet and, yet again, increased dose of steroids.
After that, my symptoms became worse than they ever had before. I was emptying bowl after bowl of blood up to (in all seriousness) ten times every hour I was awake. I lost so much blood I could not walk, let alone stand, without my legs collapsing beneath me. I weighed 97 pounds and was literally wasting away. I'm still not sure I would have made it had I not had my supply of ensure; I could not even drink water.
This episode ended in yet another weeklong stay in the hospital with still more 24/7 intravenous steroids and fluid.
I left only after they were sure I could eat and was capable of walking with at least a cane. At this point, my doctor put me on Alinia, Pentasa, Prednisone, Bentyl, and Ultracet. Symptoms were worse on them initially, but they gradually came to help me feel better.
Many weeks were spent consuming nothing but ensure and boost shakes, chewable calcium tablets, kefir, and the obligatory water. I was doing everything I could to get better with one goal in mind: return to school.
The excess financial aid it offered through scholarships and grants was the only way I knew I would be able to pay for anything in the months to come so, healthy or not, I had to go.
I was excited regardless though. I needed something to keep me busy, and walking from class to class helped to rebuild my strength in spite of how close together they were.
It was difficult, but I managed to pull through and maintain a good gpa.
Life had started to become a little bit brighter by then, I was seeing a home forming, and my relationship with Daniel was maturing (how could it not in this kind of situation?).
We went through the motions, started making payments on a car, decided we were engaged, and planned for a future.

The trials to come were those any normal people go through. We had a tough time with school after Christmas break, went through relationship troubles, and nearly separated permanently.
What I've learned from those events is that you will have to separate and experience something else if you want your relationship to survive. I'm still learning to cope with everything that happened, but I'm slowly finding peace and consolation. We could not have survived if another girl had not been there, and what we have now is stronger than anything I've ever felt with another human being.

The stress caused by all of this resulted in setbacks concerning my Crohn's symptoms. Ask any Crohn's patient and they will tell you the number one cause of symptoms flaring up again is emotional stress.
But, as it is now, I am doing well. I'm currently taking pentasa, prednisone, humira, omeprazole, bentyl as needed, Align probiotics, and a prenatal multivitamin (no, I am not pregnant).

Current worries now are bringing our grades back up this coming Fall semester, me finding a job, finding a cheaper place to live, finding a cheaper car, and staying healthy.

I feel almost completely better again. The point of this blog after all is said here is to keep track of how this disease progresses, and otherwise hopefully, along with my life. I'm in the process of trying many new kinds of diets and am taking steps to keep stress under control to prevent a recurrence of symptoms.

The real thing starts tomorrow I suppose.

And with that, goodnight.