Me vs Colon

Thursday, November 20, 2014

Good news! I've enjoyed another year and a half of good health and I've been making the most of it. Feeling that the European adventures that helped me recover my non-sick identity were not over, I decided to spend the 2013-2014 academic year as an English teaching assistant in Madrid, Spain. France is like a second home to me so adapting to life in Spain was the most challenging experience I have had since being sick. I appreciated the opportunity to devote my energy and anxieties to something not related to health. By the end of my nine-month stay in Madrid, I had become comfortable with Spanish culture and reluctantly moved back to Washington, DC to look for a job that better aligned with my studies. A month ago, I accepted a full-time job offer from a company in California. I feel incredibly fortunate to have a bright future that I would never have imagined just four years ago.

In August, I went backpacking in California with my family for a week. It was my first remote hiking trip since my illness and it was both scary and affirming. Backpacking food is not particularly j-pouch friendly (last summer, I got a blockage on the hike out from a short backpacking trip because I ate a really cold power bar that I couldn't digest) and our route took us far from any medical help. In the event of a serious blockage, someone would have had to hike 10 miles and up 2,000 feet of elevation gain to get a helicopter from the National Park Service. Waiting that long with the pain that accompanies blockages would have been torture. Nevertheless, I decided to go ahead. I try not to let hypothetical medical complications dictate my life or prevent me from participating in activities, like backpacking, that are important to me. My family was very supportive and made sure that I had the most j-pouch friendly food possible. The trip was fantastic and encouraged me to be adventurous in the future. Although getting up nightly was not a picnic, the wilderness is also a great place for j-pouches because behind every boulder is a potential bathroom. I really impressed my family with my quick trips. If only they were so lucky!

Last week I had a pouchitis scare that luckily had a good ending. In an effort to say goodbye to friends before moving to California, I have been eating out at restaurants more than usual over the past month. However, I generally avoid eating out because any food that is not simple is likely to upset my stomach. After a few weeks of lunches and dinners, I noticed I was going to the bathroom more frequently and had more cramps. Although I hoped I would feel better, I started feeling significantly worse and eventually came down with something that felt like food poisoning. I was very worried that I had pouchitis because unlike other stomach bugs I've had since surgery, this distress came on gradually. I called a few of my doctors to try to get a prescription for the standard pouchitis antibiotics (basically the only way to cure pouchitis) but didn't have much success because I hadn't been seen for years - I've been abroad. I did have a funny interaction with an advice nurse who was confused as to what my "pouch" was. No, I'm not a marsupial! The experience of negotiating with doctor's offices and feeling uncertain about my health was stressful and reminded me of the months I spent during my illness wondering if I would ever get better.

Surprise surprise...I completely fell apart and catastrophized about a trip to the ER in the event I did have pouchitis and couldn't get antibiotics. I am on my parents' health insurance until I begin my new job, and outside of the San Francisco Bay Area I only have coverage for ER visits. The situation made me feel vulnerable and slightly out of control. The idea of pouchitis terrifies me because I know it can become chronic. It wouldn't be as bad as Ulcerative Colitis, but still would involve cramps and many many trips to the bathroom. I have had an amazing three years after my surgery and I was devastated at the prospect of another trying health condition. Although I knew I had the strength to rise to the challenge, I couldn't bear the thought of it. Fortunately I felt much better after a 48-hour protein shake diet. The experience reminded me how lucky I am to be doing exactly what I want - living independently, working, traveling, socializing, and most importantly, taking my health for granted.

I had a thought-provoking conversation with a friend a few days ago about the effects of suffering on my relationships. For the first few years after my surgery, my illness was still a huge part of my identity and I felt like people who hadn't experienced it with me or hadn't suffered themselves didn't truly understand me. This week I realized that I no longer feel disconnected from non-sufferers, which means that I have moved on from UC in a substantial way. As time goes by, I am excited to see where my past leads me and what I continue to discover about myself.

July 4th in London!

2 comments:

  1. I feel your sick-identity pain, as well as the actual pain, and am very glad to hear that you're past it :) I was wondering if you'd be willing to share what medications you were taking when you were abroad and how you got them.

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