the nitty gritty (part one: peace corps to portland)

Many people have no idea what Ulcerative Colitis is, or if they do, they know that it's a bad thing, similar to Crohn's Disease.

The clinical definition of Ulcerative Colitis is posted in the top right corner of my blog. It is there because we all need to be able to define things in a succinct manner. However, there is no easy way to briefly describe the disease that has ruled my life for years now.

I want to get down to the nitty gritty, to write out all of the embarrassing, terrifying and difficult experiences I've had, because Ulcerative Colitis does not live within the bounds of its neat little definition, "a bowel disease characterized by inflammation with ulcer formation in the lining of the colon." It is so much more than that.

Two years ago, I had just returned from the Peace Corps, when this "flare up" of Ulcerative Colitis (UC) started. Flare-up's are common for people who have UC, and while its cause is unknown, symptoms may be brought on by stress, changes in diet, or a course of antibiotics. At the time of this flare, I was experiencing stress and change in spades (and had taken a lot of antibiotics towards the end of my time in Madagascar).

It started with small streaks of blood in the stool. Then having to go to the bathroom more often. Then more bloody stools, and sometimes just blood clots or clumps with no stool. Then feeling like I had to go, but nothing was there but blood & mucus. 

I thought I could manage the flare well enough by putting myself on a short course of Prednisone, a steroid frequently used for treating inflammation. All this managed to do was provide me with the side effects of being on steroids: insomnia, accelerated heart beat, feelings of aggression and rage, and weight gain. It had no effect on my bowels whatsoever. I kept everything to myself mostly, as I didn't really want to worry anyone.

Next came a move to Washington, DC to start a new job doing trail work with urban teenagers. I was going to the bathroom upwards of 15-20 times a day, with loose, mucusy and/or bloody stools as well as experiencing "night sweats" and sometimes a low grade fever. My joints would ache, as though I had arthritis, which is a common sign of increasing inflammation brought on by disease. I was not on any medications (I'd run out of the spare Prednisone prescription I'd been taking) and hadn't told anyone how bad it had gotten.

There were a few times I couldn't make it to the bathroom, and would end up shitting myself. Luckily, I also worked outdoors, where I could run off at a moment's notice. Of all the symptoms one experiences with UC, the uncontrollable urge to evacuate the bowels at a moment's notice is among the most unbearable and agonizing.

I remember once pulling over on the side of the road just outside of our nation's capitol, in the van I drove for work, jumping into the backseat, and pooping on the only thing I could find in those few seconds remaining: a paper plate.

A month later, at a trail work training, I went to an Urgent Care clinic because I was feeling weak and feverish constantly. The doctor who saw me insisted I see a Gastrointestinal (GI) Specialist as soon as possible. I explained that without insurance, it would be difficult to pay for any treatment out of pocket. She was extremely concerned as I was having bloody stools 20-30 times a day. I brushed her off, though she begrudgingly prescribed another course of steroids and some UC-specific medication called Asacol.

The medications did nothing for me, and unbelievably, my symptoms worsened as the summer wore on. I was sweating through my sheets nightly and becoming increasingly aggressive from the steroids, all while working a very physically demanding job. The Prednisone would allow me to push wheelbarrow after wheelbarrow full of rocks during the day, and then in the afternoons I'd collapse in exhaustion as my body suffered from systemic inflammation. I wasn't used to this; I'd worked physically challenging jobs for years: wildland firefighter, Alaskan river guide, backpacking guide. I was supposed to be able to set my mind to anything and my body would obey.

One afternoon after work, I was laying on the couch, barely able to walk and had already gone to the bathroom 20 times that day. The inner dialogue of fear, anxiety and exhaustion was undeniable; I finally admitted to myself I was going to have to go to the Emergency Room. Tearfully, I called my friends and family: how was I going to pay for this out of pocket?!  But I had to go, and that was that.

I was hospitalized for two days, in which they put me on an extremely high dose of IV steroids; I started another round of UC medication, as well as a medicated enema I was supposed to insert nightly. None of these did anything for me, but I was feeling on high from being so jacked up on steroids. I went to a GI specialist, who looked at my colon by performing a Flexible Sigmoidoscopy (read: sticking a camera up your ass in the most excruciatingly painful procedure you can ever imagine). He said I should immediately start on a treatment plan, but I countered that I was moving to Oregon in a couple months and would deal with it then.

But first, I took a month-long job doing trail work in the Grand Canyon. Pooping 15 times a day in a discreet manner while working in an exposed, rocky canyon: now that takes some doing. At night, under an endless canopy of desert stars, I would wake up in my tent and rush to dig a hole as quickly as humanly possible. During the days, while doing some of the most exhausting physical work I have ever done, I would try to hold it in as best as I could, before desperately running off behind a boulder to relieve myself. Nothing but mucus and blood clots.

Still, I was quiet about it all, putting on a strong front and still, I kept on moving. I kept on pushing. I kept on thinking I could somehow will myself to get better. Traveling around the country, going to friends' weddings, fearful of when it would hit me, where I'd run to; going on road trips and frantically pulling off the side of the highway to poop on the side of the road; starting to realize my body was breaking down and I couldn't make it stop. I didn't know what to do.

I landed in Portland, Oregon with a couple hundred bucks and no job, no insurance. I went to another GI specialist, who urged me to come into their clinic for a colonoscopy, and get some treatment. I was still on Prednisone (my body had become both dependent and resistant to the steroid- I couldn't get off it without symptoms worsening, but it wasn't getting the inflammation down at all). Riding a roller coaster ride of side effects and spending my nights in a feverish world of bloody, endless poop, I knew it was time to make a change.