Thursday, April 29, 2010

The diagnonsis: learning to cope

With graduation from my master's program imminent, I could no longer ignore the fact that my insurance was ending in 11 days. I had been experiencing uncomfortable (and embarrassing) symptoms for a few weeks. The thought of talking about my stool at all, much less the blood and mucus that had been a near constant in it for the past few weeks, with a complete stranger was almost more than I could handle.

I put it off as long as I could, but with my impending insurance-doom, I could no longer ignore the fear I felt every time I was more than a quarter mile from an
accessible toilet. So of course I turned to the most trusted medical adviser: the internet.

You found this blog. Admit it, you are nervous and surfing the internet looking for the magical cure. Instead, what you are finding are the scary statistics, like the fact that 30% of people with Ulcerative colitis have to event
ually get their colon removed. Or maybe you have come across the frightening (and true) stories of people who can't seem to get their flares under control.

I have been there; I have spent hopeless hours scouring the internet looking for a ray of hope, but mostly getting more and more frightened. Hell, let's be honest, as soon as I am done writing this post, I will probably be there again. More than once, my fiance has asked me to back away from the medical sites and step back into reality.


Within a week, I had seen my primary care doctor, given blood, dropped off two em
barrassing stool samples, and had my first colonoscopy after a miserable night of emptying from both ends. After I got my official diagnosis (Ulcerative colitis) yesterday, I spent a few hours dwelling on the possible negatives. They are scary, and hard to ignore. I *might* need to one day have my colon removed. I *might* get colon cancer. I *might* have a worse flare. I *might* have to be hospitalized.

After a few hours of crying on the phone with my very worried mother, and snapping at my fiance for trying to help, I realized that while all of these *mights* are certainly possibilities, they are completely out of my control. I am choosing to not focus on them. Instead, I am going to focus on what I can control. I am going to come at this disease from all angles. I am going to use my diagnosis as an excuse to get healthy and stay that way, as an excuse to take excellent care of myself physically, mentally, and spiritually.
First things first: my doctor put me on Asacol HD, and suggested I stay on it. Forever. I am on it for now in hopes of decreasing my symptoms, but I am not sure how I feel about being on medication every day for the rest of my life. The doctor says it can release the potential for future flares, and possibly reduce the risk of cancer by controlling inflammation. Both of these are obviously compelling reasons to stay on the drugs. However, if I can learn to control the symptoms (and the inflammation) in some other way, could I do without the drugs? That said, after three days of taking the drugs, I woke up this morning symptom free.

When this flare began, I was at a conference. I was presenting a poster, attending workshops five to ten hours a day, eating out of a greasy cafeteria, and trying to complete my thesis at night. I was clearly under stress, and I was eating crap. I am certain both of these were factors in my flare. Therefore, my next steps are to try to get both of those under control.

To control stress, I have decided to start doing yoga. I actually found a video series that includes a segment of Yoga poses for Ulcerative colitis (http://myyogavideo.com/). It should be waiting for me when I move back to the Washington DC area next week. I will keep you posted on how it works.

For diet and supplement help, I went to see my Naturophatic doctor. She is a wonderful, inspirational woman that I began seeing last year for sleep problems. Probably also stress triggered. Anyone see a pattern? To help control the inflammation, she prescribed fish oil (something I am already on for anxiety) and Curcumin. To help the healthy bacteria in my gut get back on track, she also prescribed one month of probiotics and one month of L-glutamine. I just took my first dose of all of my supplements, and I am anxiously awaiting the results. Will let you know.


The other thing my ND
recommended was a food sensitivity test. I gave blood for the second time in two weeks, and the results should be back within the week. My ND explained that food sensitivities cause an immune response, further stressing your colon, possibly causing inflammation, and possibly leading to a UC flare. I am excited to get the results and use them to help inform my new, healthier life. This is a disease of the digestive tract. Eating well can do nothing but help. I suspect a gluten sensitivity

The last steps I am taking probably sound silly to most of you, but for me, it is about taking ownership of my disease. I am buying two pill boxes that feel luxurious and make me happy. I will be taking nearly 10 pills (3 asacol, 3 fish oil, 2 curcumin, 1 probiotic, 1 L-glutamine) tw
ice a day now, and I know I might forget what I have taken, but I hate the thought of opening one of those sterile plastic containers that reeks of hospitalization and illness. To store my weekly doses, I will be purchasing a box from http://www.pascoewoodart.com. Something about picking up a solid wooden box that is nice enough to keep on my dresser makes taking the pills feel like a way to maintain health instead of just a way to keep a disease at bay. For me, the cost is worth it. I have also considered decorating my own pill box to save money.

I also don't want taking my pills to keep me at home, so I bought an adorable small pill box from etsy.com. It is elegant, like an accessory,
and is something I wouldn't be embarrassed to take out in front of friends. Again, it makes me feel like taking my pills is something luxurious instead of a reminder of my illness.

So what is next? Well, as soon as I move, I am going to see another doctor and get a second opinion about being on the drugs full time. I am also beginning my healthy life, which includes yoga every morning, a mostly vegetarian, low-gluten diet, and getting enough sleep.

As soon as I feel better, I plan to train for a 200 mile relay race in bourbon country. Wish me luck!

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