RELAPSE 2010

Obviously I've failed miserably in my resolution to blog in 2009. It's a damned shame, too, because I really could have used a record of my business. I've been having a slow-building flare-up which hit right around labor day- it started gradually with an unexpected Hershey Squirt and I thought I would be able to nip things in the bud by checking in with my doctor. I went in complaining about the squirts, as well as upper gastro symptoms like heartburn, which wasn't responding to treatment with Prilosec. My doc told me to start taking hydrocortizone enemas, which usually do the trick, and increase my dosage of Pentasa. A week later I was calling him from the subway, having just left work after vomiting profusely. We were both baffled, as my blood work came back perfect, so we decided to test for parasites. That was a super fun day off from work, as I walked to the lab with a paper bag full of my poop. I was secretly wishing someone would try to mug me or at least ask "hey, what's in the bag?" But no one did. At any rate, I was convinced at this point that parasites must be the answer- how else could I explain why I wasn't responding to the enemas or Pentasa? But the tests came back negative, and I was still feeling sick. I was eating like a bird, taking hours to pick at a single item of food like a muffin or bagel, and I was running to the bathroom at work at least a dozen times a day. I started thinking of possible triggers. I had just joined a gym when I started feeling sick, and I thought maybe I'd picked up a bug or something, but that idea has since been ruled out. I started to worry that maybe my Celexa was causing the trouble- the pharmacy was out of my normal dosage (10mg) so they gave me 20mg pills to split. I usually only have a problem with the generic of Celexa, and I'm definitely taking the brand, but I was still worried so I called the pharmaceutical company to ask if there'd been any change to the brand formula, or any risks involved with breaking the pills in half. They didn't seem to think so, and I hope I'm not trusting them in vain, but for now nothing indicates the Celexa is triggering this.
So after a few weeks of being miserable at work I couldn't take it anymore. I'd made it home for Thanksgiving and enjoyed my mom's cooking as best I could, but it was hard for me to move my bowels and I didn't leave the house the whole trip. I had spotty attendance at work the following week, and eventually threw in the towel and am now on short term disability. I went in for all of my scopes, which showed severe inflammation along the left side of my intestinal tract. I was packed and ready to go to the hospital, so it was actually not too bad a blow when the doctor told me he was going to put me on Prednisone. When I was initially diagnosed at the age of 12 I was on 60mg of Prednisone and it took me four years to get off of it. I experienced every imaginable side effect from mood swings, moon face, acne, kidney stones, and arthritis. Of course I was still drugged from my colonoscopy when my doctor gave me my dosing instructions, and I misunderstood that I was supposed to take 40mg, and began by taking 20. Whoops. It was quite a scene at the pharmacy that afternoon when, still drugged from the procedure, I really had to fart and chewed out the pharmacist for not having a public restroom. Seriously, pharmacies should be required by law to provide bathrooms to patients but I digress...

So I mis-dosed for two days before I realized what I was doing. At any rate, even after going up to 40mg I wasn't getting better. I couldn't eat, I couldn't poop, and I couldn't get all of my other pills down. I was taking the prednisone 20mg in the morning and 20mg at night, because my doctor didn't give me specific instructions regarding dosing time- just to split the dose. Then one night I pooped something solid and I thought it was a huge triumph. I got ahead of myself and tried reintroducing my Petnasa the next day and I almost had to call the ER. Every hour for seven hours I was running to the bathroom and writhing with belches and gagging. I started throwing up bile and having severe back spasms. I was able to eventually fall asleep long enough for the spasms to stop, but I was wrecked for the next two days. I increased my Prednisone to 60mg, again with no instructions on when to take it, and I began having an erratic heartbeat and insomnia, despite being incredibly muscle fatigued. I'd been inactive for about three weeks at this point, and had dropped twenty pounds. I went downstairs to get the mail and could barely make it back up.
The real turning point so far came when I spoke the my physician's assistant. I like my doctor, but I have to say I find he's very vague and short on the phone which is really not good. His assistant, however, is personable, compassionate, and most of all thorough. When I spoke to her she instructed me to take my Prednisone 30mg first thing in the morning (well, Prilosec first to prevent heartburn as a side effect) then 20mg no later than 1pm. The 50mg dosage has been much better in terms of reducing the cardiac side effects while being strong enough to help me turn the corner. The best thing she prescribed, however, has been this awesome rectal medicine called Cortifoam. Once upon a time I'd go to the pharmacy and come home with two huge bags filled with cortisone enemas. They were sizeable bottles of liquid that did NOT feel good shoved up the butt. Cortifoam, however, is incredibly compact and feels like nothing. You don't have to worry about your sphincter failing to keep it in, and there's far less waste involved in terms of packaging. I've still got a looong way to go, and have to deal with breaking the news to work that I'm still, after a month off, not ready to come back yet. I have to try and get reimbursed for the holiday travel plans that were canceled due to my lack of mobility, and I have to try and get my strength back up. I have to sleep through the night (I'm currently up at 4am, 6am, 9am to poop little popcorn turds). I'll be keeping you posted on the Predisone side-effects, and plan on posting regular "cheek watch" updates to track the progression of my moon-face, which is already filling in quite a bit. Till then....
-Li'l Crohnsie