In the Dumps

Ever notice Oscar's eyebrows look like a furry turd?

It's been a shit year, both literally and figuratively.

I've already posted on here about how we lost one of our beloved cats to stomach cancer, and shortly after I had another nasty flare-up of colitis which lasted about a month. I was finally recovering, and had gone to Vermont to visit my family for a much needed vacation. I was rejuvenated by the trip, came home to J and our other two cats and then the next day OUR FUCKING HOUSE BURNED DOWN. Both cats died of smoke inhalation (thankfully, I don't think I could handle it if we discovered they'd been burned to death) and we're now living in a neighbor's basement apartment as we get back on our feet.

All things considered, we lucked out. We have renter's insurance and the support from neighbors and my workplace has been overwhelming and eye-opening. We miss the "kids" terribly, but we have each other and a pretty remarkable support network to see us through. My pharmacist took care of getting all of my meds re-ordered without any problems from my insurer. My appetite has been decent, which is remarkable as I typically don't eat when I'm upset. I have, however, had non-stop stress diarrhea for the past week and a half so I'm exhausted an my butt is chafed. I know you were dying to know that.

So that's the update for now. I don't anticipate updating this blog again for a while since I have too much other pressing stuff to do, unless the stress diarrhea escalates into something worth writing about (and I hope it doesn't). See you in a few months?

xox
Li'l Crohnsie

Relapse 2012

Two weeks ago I was doing pretty good. Not taking great care of myself - drinking iced coffee and mixed drinks socially - but I was doing pretty damn good by all accounts. And then I went in for my annual scopes.

Ordinarily I look forward to my annual scopes. I get to take a planned sick day off of work and enjoy the countdown from ten as the knock-out drugs warm me over on the exam table. But this time I wasn't ready to go back to work the next day. As of today I've been out of the office for almost two weeks with a full-blown flare-up.

At first I thought the preparation was taking some time to wear off. I came home and pigged out immediately after the procedures (I get my colonoscopy and endoscopy done at the same time) and felt well enough, until I tried to go to the bathroom and a river ran through me. The next morning saw more of the same and there was little changed by Friday. At this point I had my doctor paged, as per the instructions on my release forms from the endo clinic, but while he sounded concerned his advice was "if you're starting to feel better you're getting better."

By that Sunday I was getting desperate for some relief so I took an Immodium AD. This stemmed the diarrhea, but started me vomiting. On Monday I called the doctor again and he suggested Pepto Bismol, which struck me as overly-simplistic- I'm not exactly consulting a gastroenterologist for over-the-counter solutions.

So J picked some chew tabs up from the corner store and on Tuesday I stepped out to by the old fashioned liquid and some popsicles, as the puking had turned me off to eating solids. The pepto did indeed help continue to slow the flow of the runs, but it also incited a stomach pain that resulted in a two-day festival of shomiting. Every time I'd sit to poop my gut would contract and I'd shoot liquid out of my face and into the sink.

By Wednesday, exactly one week post-procedure, I was done pussy-footing around with Band-Aid fixes and was ready for a real and actual solution. I was missing not only work but school, and in the middle of finals season to boot. The doc had mentioned there was very slight inflammation indicated on my scopes, but nothing that should make me sick. However, he did admit it was possible that the mere act of scoping me had caused the ruckus I was experiencing. I was eager to confirm this and left a message with his office that morning. I eventually got through to the PA, who always has it together. She was kind enough to call me even though she was out of the office that day, and advised me to come in the next day to be seen, or go to the ER. Well, had I any faith in my local ER I probably would have wound up there that night. I was having spasms every hour on the hour and it was excruciating. At one point I tried to camp out on the bathroom floor because I was so tired of the back-and-forth from my bed to the can. By 3am things began to slow down to the point where I was going every two hours and by 7am I was able to sleep for three hours uninterrupted. I was at my doctor's office by noon, and was given IV fluids, and anti-nausea med and prednisone. So I've been on 40mg for the past two weeks, and just started to taper down to 30 today. I have a slight moonface, but leg pains and sleeplessness are my current concerning side-effects. I've been working a few hours a day from home just to help out at the office, but the thought of commuting back to work on Monday is nothing short of intimidating. My boss and my professors have all been understanding, and I'm hoping to get more into the swing of things by next week.

A River Ran Through Me

I'm working on a pretty lengthy update, but long story short I passed more fluid out of my butt in the past week than most people do in a lifetime. GROSS. Tonight I ate solid food for the first time in six days. Cross your fingers and stay tuned for the full story of flare-up 2012.

I'm Actually Pretty Lucky

So this is a rough draft guideline of a portrait I conceived of during the peak of my relapse whilst I was throwing myself a pity-party.  I was curled up in a ball in bed feeling sorry for myself, and had to reel myself in by reminding myself how lucky I am to a) have a job to be home sick from b) have short term disability to rely on and c) have FMLA to cover my ass as well. Not to mention the support and love of J and my family (I almost had to beat my mother away with a stick to keep her from visiting while I was too sick for her to be here).  And I started thinking about what a miserable whiner I can be, and this is the image that came to my mind.  A spoiled brat weeping a bejeweled tear while moping in bed and suckling a lobster tail.  It's a work in progress, but it still sums up how I feel about myself when I get too mopey.

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