Introducing: Lialda!

As of tomorrow I will have been off of Prednisone for a week- huzzah! I can't wait for my hair to stop shedding and my face to clear up.
Last I saw my gastro I was somewhat concerned that we might have to have a "what if" discussion, regarding the stability of my recuperation...as in:
"What if I relapse once off the steroids?"
"Well, then we'll give you Remicade."
Now,  I don't want to diss Remicade, especially if there are people who really benefit from it.  But I won't lie: it scares me shitless (hah, I wish I meant that literally!). I hate IVs, and anything that has to do with (ugh) veins.  I even hate the word!  Shots I couldn't care less about, but IV treatments- yuck!  And that's without even thinking about the potential side effects of Remicade like cancer and lupus.  Not that Imuran and Prednisone don't have their own nasty side-effects, by why add more to the pile?

So imagine my surprise when he suggested I try a different form of mesalamine, which I'd been taking for over a decade in the form of Pentasa.  While Pentasa is formulated to release mesalamine partially in the small intestine and partially in the colon, Lialda is a new form of oral mesalamine formulated to release fully in the colon.  Assuming my rediagnosis of colitis is accurate, Lialda should be perfect for hitting my active disease area.  And knock on wood, so far so good!  Apparently it's been on the market for a year, but my doc never mentioned it because he likes to wait for new meds to be out for a year before prescribing them.  Some people have side-effects, most notably fatigue, but none for me so far (of course I'm usually on the sleepy-side so I don't know if I'd notice a difference).

All meds are different for everyone, but if you have UC and are taking Pentasa, I'd suggest asking your gastro about trying Lialda on for size.  NOTE:  I am only making this suggestion as a fellow patient, not a professional, nor as a schill for Shire. Actually, come to think of it, I believe I took an online survey before I knew what Lialda was that was all Lialda ads.  I pretty much crapped all over them.  I hate drug company advertising...but then, I hate most advertising.

If you take or have taken Lialda, leave me a comment letting me know how it went for you.
xoxo
"Li'l Crohnsie"

On Coping (and some updates)

It was really slow at work today and I found myself sucked into the forums over at the CCFA's website. A lot of what I read got me thinking I'd like to share some of the coping mechanisms that I've used over the years to vent some of the built-up steam over life with IBD.

The very first time I ever felt humbled about my illness was when I was first diagnosed and had been in the hospital for about a week and a half.  I was down on everything, could barely be dragged out of bed to stretch my legs, singing the "why me?" blues all day and night.  And then I got a new roommate- a six year-old with leukemia.  Well that snapped me out of it.  This kid was always happy, always playing with something, and constantly asking to go for walks to the maternity ward to look at babies.  I'm happy to report she's a happy, healthy twenty-something today, but back then she had death knocking at her door and there I was literally belly-aching.  It certainly put things in perspective for me.  Since then, I always try (and often fail) to think of scenarios that are worse than my own.

Other coping mechanisms throughout my high school years included playing the drums, taking art classes, hitting golf balls at the driving range, and clumsily pummelling a boxing bag in our backyard.   I also was, and continue to be, an avid colorer, preferring markers and design books like they sell at Pearl Paint over crayons and picture books.  I don't indulge in coloring as much anymore because I feel like there's not much of a productive outcome, but the meditative nature of coloring is nothing to be scoffed at.  Despite being raised Catholic I don't really subscribe to any particular religious belief, but I am a firm believer in making quiet time for yourself, be that in the form of prayer, meditation, coloring, whatever. 

I tried therapy a couple of times, but never had much luck finding a therapist that did anything but sit and "listen" before kicking me out after an hour.  I decided I have better luck staying home and talking to myself for free.  I do, however, take 10mg of Celexa, an anti-depressant in the SSRI class of drugs (Select Seratonin Reuptake Inhibitor, I think).  I could probably use 20mg, but I want it to be a tool and not a crutch.

This blog is my latest vent, but then writing has always had that benefit in my experience.  I don't play drums anymore, nor do I have the opportunity to golf much, but I have been trying to swim on my lunch break at least once a week.  In addition to helping me relax it's also been helpful in easing my leg pains and loosening up my back and shoulders.  I discovered how much I love yoga a few years ago, but I haven't done it in a while because I haven't quite been up to participating in a full-on class.  I've done some stretching at home on my own, but I'm eager to return to a class setting and do a complete hour routine. I find that, in addition to relaxing me, the quality of my poop is outstanding the morning after a good yoga class. 

On that note, let's transition into an update on my meds and poop.  I was having some malformed doodoos with hints of pink last week, and obviously that had me concerned.  My doc decided to have me stay at 15mg Prednisone for the time being, and called me in for a blood test to check my Imuran levels.  I've put the SCD routine on hold for now, and am back to my full dosage of Pentasa as of Wednesday (that's 3000mg a day). I also got my period on Monday.  I'm not sure if it's one or all of these variables, but I've slept completely through the night for the past four nights in a row, and today I took the biggest, most normal looking crap I've seen since I can't remember when.  You know, the kind you really want to show someone because you're so proud you made it but you know that would just do more harm than good. So that has me pretty happy.  I'm also happy to have a weekend that's not totally devoted to shopping and cooking (although both of those things are on the agenda).  So that's that for now.

ttfn,
Li'l Crohnsie

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

Welcome To My Bowels

Have you ever had to break your poop down into categories like SIZE, PAIN, BLOOD, and CONSISTENCY? If not, just follow my lead.

When I was a kid I was diagnosed with Crohn's Disease and was required to log my bowel movements in order to track disease activity. I kept a notebook on the side of the tub, displaying a chart that is similar to that represented here. Suddenly the minute details of your own feces become your central priority.

This is an interesting time to be picking up the habit of tracking my bowel movements again- my new gastroenterologist has confirmed suspicions of my Crohn's Disease actually being Colitis; I have introduced several vitamins and pro-biotics to my diet; and I have changed the dosing regimen of my medications (with my gastro's supervision, of course). If you want specific numbers I can tell you I was taking three 250mg tabs of Pentasa four times a day, and three 50mg tabs of Imuran once in the morning. The new pattern is to take three 500mg Pentasas twice a day, and Imuran has become 75mg in the morning and at night.

In addition to the above-referenced medications I also take one 10mg tab of Celexa in the morning. I try to regularly pop B-complex, Flax Seed Oil, and Vitamin D supplements to help reduce anxiety and build bone strength, respectively. I am on Yaz birth control, and since we're on the topic, in the event that I'm having symptoms they always get worse with my period.

I can say from experience the following things also aggravate symptoms: Anxiety, something in generic medications, over-indulgence of booze. Potential risks include raw vegetables and other roughage, spice, and caffeine.

Also to my experience, I can say the following things make me feel better: Sleep, my mommy, and sharing the details of my disease with strangers on the internet.