On Puffy Faces

All this hubub about Ashley Judd's puffy steroid face brought out a little "bitch, please" in me. It surprised me when I felt a twinge of competition over her steroid-induced moon face, but I did. So I present to you:

Before prednisone...

                                                               ...and after.

I'm probably about 6 in the before photo, and about 13 after, so there's admittedly a big gap there. But the before face was basically the same structure until I hit 12 and wound up on 60mg of prednisone for four years.

Besides the obvious detrimental effects of living with a visible deformity, there were unseen physical effects as well. At one point my forehead was as engorged as my cheeks and it was actually painful to keep my eyes open. My weight ballooned to 160lbs (I was and am 5'2) and opted to have a breast reduction when I hit an "e" cup (it was a decision two-years in the making).  Oh, and I had four kidney stones when I was 14. On the plus side, I didn't have my period for about a year and a half.

I was sixteen when I finally came off of the steroids, after a long process of weaning, but I was around 20 by the time I felt the majority of the side-effects finally wore off. However, to this day I am covered with striations across my lower back and around my arm pits, something that I could try to tackle with laser treatments but probably won't. I like to think of them as my tiger stripes. Most people confuse them for tattoos, though I'm not sure how.

I was relatively lucky in terms of how my peers responded to me when I returned to middle school after a two month absence. The closest thing to ridicule I experienced was being called "Marty", in reference to this awful 90's movie in which Martin Short's face swells after being stung by a bee. But that moniker was given to me by a guy who was one of my best friends, and even "went out" with me for a spell, moon face and all. In some ways the moon face was a hugely positive influence on me. It made me a stronger kid who couldn't be bothered with what other people might think. I was too busy enjoying the privilege of eating solid food again to care about my looks, or anyone beyond my family for that matter.

I'm not about to blow smoke and pretend I'm not relieved to have my normal face back, nor can I deny having grown into a vain asshole that my childhood self would be ashamed of; but when I think back to that time of my life I still value the experience and try to remind my jaded, cranky adult self of the lessons learned by my adolescent self. 

IT NEVER STOPS!

Ugh, if it's not my gut it's something else.  The only absolute in my life is that "it" is always something! Today, it's my damned eye.

Tuesday night I went to bed with two normal looking eyes.  Wednesday I woke up with what I thought was a slightly annoying burst vessel in my left sclera (that's the fancy word for "white part").  It wasn't a big deal, but it was still there the next day and still hurt- it feels like I pulled my eye, if that makes any sense.  But then late yesterday afternoon/evening it started to REALLY hurt, like couldn't keep my eye open hurt.  I called my mom who flipped and begged me to call my physician, even though it was after hours and I'd have to get her on her cell.  I caved, thinking "maybe it's a clot" and "maybe it's a late side-effect of the Prednisone...can't it cause glaucoma?" My trusty GP basically said not to freak out as long as my vision wasn't blurred or doubled.  She also warned me to watch out for photophobia.  I took some tylenol, the pain eased up, end of story?  No, of course not.

Today I woke up and the stupid thing was crusted shut, so I immediately thought "Pink eye!" and called out of work, and in to the doctor's office.  Luckily pink eye it ain't- but what it is has yet to be determined until I see a specialist this afternoon.  My guess?  I clawed at myself in my sleep, J elbowed me in his sleep, the cat walked across my face with her claws out, or my body just hates me and must constantly work against me. Yeah, probably that.

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"

Blogstipation

So now that I'm back on my feet (not 100% but still much more functional than I have been) and not struggling with any super-diets, I haven't had a whole lot to write about.  I've had some false starts and some ideas for little web videos but nothing that's actually inspired me to come on here and produce anything.  I realized I've been blogstipated, so here's a long rambling update for you to skim at your leisure.

I used to try to always post a picture of something that could be compared to my latest bowel movement, but nowadays my poohs are looking like Cadbury flake bars pretty consistently. I do have a lot of pics of my hair, like this one:

 And that was only one of the clogs in the sink!  That's some nastiness right there.  I'm just happy I have hair left on my head.  It's kind of nice that it's thinning out in time for summer, come to think of it.

I was home in Vermont for a week, making up for the Christmas visit I had to cancel due to my flare-up.  It was great because we got a good two feet of snow for about three days!  I hate cold weather, but since I had nothing to do but sit at home and be mommied it was a real treat and helped me feel like I'd gotten a proper winter fix. Of course, having no self-restraint I ate tons and tons of crap the whole time I was there.  Everything my mom cooked was delicious and quality, which should go without saying- but that didn't stop me from eating liverwurst sandwiches and chips and dip every day for lunch.

I was super depressed when I got back- happy to see J and the kitties, but really unhappy to be returning to a city I'm sick of.  I had a weepy few days last week, and I think I owe that not only to PMS but perhaps to some late-breaking Prednisone side-effects as well.  I had a blow-out with J, which didn't help (it's all resolved thankfully. It's a lot easier to end a fight with someone when you know they're just as committed to working shit out as you are) and then I watched "Lost" which didn't go well.  Whenever Hurley gets upset I get upset and last week something sad happened (I won't elaborate a- to avoid spoilers and b- in case you just don't care) and it had poor Hurley bawling his eyes out which got me on the waah-wagon as well.  After the sob-fests I finally remembered that mood-swings and emotional outbursts are a potential side-effect of the 'sone, and considering my hair only just started falling out I suppose it's not too late for other things to start up as well.  Lucky me!  I'm going to up my anti-depressant anyway.

I've admittedly been making terrible decision in terms of consumption- I was home sick on Friday after eating two frozen pizzas that kept me up all night puking.  I've also been drinking way too much caffeine, but eff it, I NEED that shit.  I was fine without it when I was all strung out on high doses of Prednisone, but now that the buzz has worn off I'm basically useless without some sort of stimulant and I've never been one for illegal uppers (downers on the other hand...Oh, I'm kidding!  I'm kind of kidding.).

So that's where I'm at.  Just kind of floating along like one of my fibrous turds.

Quickie Update

Well, my bowels seem to finally be recovering from Aunt Flo's latest catastrophic visit, knock on wood.  Last Saturday I began taking my 5mg of Prednisone every other day, and so far things are stable enough (although not perfect by any stretch).  I've definitely been pooping more, and the results have dropped from 4 to 5 on the Bristol stool chart, but I can probably blame myself for that.  I've been in kind of a foul mood, and haven't wanted to think about the IBD much, so I've been neglecting the blog and Twitter as a result- this is very irresponsible of me since I keep this blog as a way of keeping myself in line. I'm supposed to come here and confess the IBD "sins" I've committed- like drinking coffee on the weekends and eating too much junk food.  Then I'm supposed to feel guilty and atone for my sins by behaving (can you tell I was raised Catholic?).  Basically what I'm saying is that I've been making stupid food choices this week, and that's probably playing a role in the decline of my pooh quality.

My hair is still constantly shedding, and I've had some new joint problems this week.  My right wrist has been giving me trouble (this may simply be due to computer use) and my heels/Achilles tendons have been stiff to the extent that I limp when I walk.  I'm hoping these new issues will go away as the Prednisone works its way out of my body, but I might check in with my doc next week just in case. 

And that's all for now, folks.  More to come (eventually)...

Yep, that's my hair.

So I've been collecting the hair I've been losing for the past few days.  Yes, I'm gross, we already know that.  I just wanted to see my hair loss quantified, and there it is. Not all of it, of course, but most of what comes out when I comb and wash my hair.  I have a really thick mane to begin with so there's no discernible difference to my appearance in that regard, but it does make for a nasty shower drain.  I try to comb the loose hairs out several times a day (especially before getting into the shower) just to keep my shedding in check.

In other news I've been cruising along pretty OK on 5mg of Prednisone.  I've been terrible with my food choices this week, and I PMS is to blame.  I've been pooping more and with greater urgency (all still 4s on the Bristol Stool Chart tho, so that's good) and I've been wanting to eat nothing but crap.  Not that I don't usually want to eat nothing but crap, but my self-control can usually help me out there. 

I am getting really frustrated with the moon face and acne, and all the friggin' zits popping up on my back as well.  I also have zero libido which sucks when you're a twenty-something with a hot live-in boyfriend.  I like to keep my sex life private, but it really has been bugging me that my little gal seems to be completely broken. I don't know if it's a med side-effect or just my own head (it's very, very hard to feel sexy for someone who's been so close to your pooping and farting eccentricities) but I feel lousy about it.  J's a trooper, of course, so he's been a peach about it, but I can tell it frustrates him to no end.  OK, that's all I'm comfortable venting about on that topic, moving on...

I'm not about to declare myself in remission, but I am getting much closer to where I was before I had this re-lapse.  My energy is still pretty low, but daylight savings must also claim some responsibility in making me sleepier.  I did have some leg pains this week, but I had a bone density scan and everything looks good so I'm taking the leg aches in stride now that I know the bones aren't secretly crumbling.  I have to say, I really miss the speediness of being on a higher dose of prednisone.  I feel like I was more focused in a lot of ways, and in a way much more enthusiastic about things.  Now I'm back to being tired and unmotivated.  But at least my pooh is formed, right?

I'm a Proud New Mommy!

 

I woke up this morning with a really tight stomach, it was absurdly uncomfortable.  I wanted to go back to sleep, but the more I rolled around in bed the more sore my tummy got.  So I finally decided it was time to get up and poop.  This has been happening somewhat frequently lately, and I've learned this pain means I have a big ol' pooh baby waiting to be birthed. Sometimes the little ones are reluctant to come out, and I find that walking around the apartment while massaging my gut helps to sooth the labor pains and I'm able to pop the buns out of the oven with greater ease.  

I'm pleased to report I've been hitting 4's on the Bristol Stool Chart with more consistency, and hope the trend will continue.  I did decrease to 10mg Prednisone this week, but I also increased to 175mg of Imuran.  I see my doctor tomorrow afternoon, I have to remember to make a list of stuff to report/ask.  I always bring a tiny notebook with me with a little list of talking points prepared. It's also helpful for jotting down notes from the doctor so I don't forget anything important.  

I was really, really tired all week, and kind of touchy, but I'm feeling a little more awake and chipper today.  Of course it's really sunny out and kind of warm, so that could be helping out also.  I'd like to note that I only ever have flare-ups during the winter months.  I wonder if seasonal depression might play a role in this? 

Oh, and I realized I haven't kept up with the cheek watches at all.  I basically leveled off, and think I'm starting to see a decrease in the puffiness.  Acne and facial hair are still the same- did I ever mention my little mustache? Yeah, I have a mustache now.  And my hair is coming out, but it's thick so I'm not worried about it getting to a point of being noticeable.  My appetite isn't as crazy as it's been, and I'm sleeping through the night regularly which is a huge relief.  I am, however, going to bed really early by my standards, and sleeping for about 10 hours at a stretch (and still waking up tired).

And that's that....

On Anger

In 2002, when I started having anxiety attacks and fits of rage, I began seeing a naturopathic therapist (yeah, it as full of shit as it sounds) who diagnosed me with panic disorder and a side of anger problem.  At the time I blamed it on residual issues from my IBD, mostly the social barriers.  I had a lot of crazy friends in college that liked to have adventures, and a lot of those adventures involved road trips and traveling to places without flushing toilets and thus I got left out of a few things and developed quite the chip on my shoulder from it.  Don't get me wrong, I had myself a good ol' time in college and in retrospect I'm sure having IBD saved my stupid ass on more occasions than not- but sometimes when I'm in pity party mode I feel regret towards my disease-imposed sense of caution and the wild, uninhibited life style it's kept me from.  At any rate, it was my sophomore year in college when I started confronting some of this stuff, but in retrospect I've always had a temper.  I can blame the IBD all I want, but let's be honest- it's the Irish blood in me (thankfully my exterior qualities come from the French and Italian lineage hahaha).  But seriously, agoraphobia and other symptoms of social anxiety are not uncommon in people who run a higher-than-average risk of shitting their pants, but when I look at my family I realize my maternal grandfather's bloodline boasts quite a collection of shut-ins, recluses, drunks, and misanthropes.  So is it my IBD or my heritage?  Both, I'm sure.  The point is, anger and anxiety impact IBD and that can cause some real problems when you have limited control over either. 

In recent weeks I've been having some roid rage, which I like to think is distinct from my normal sense of fury and disgust towards those around me.  I already wrote an entry about the pharmacy bs that got me riled up, and I'm sure you picked up from the "waiting room picnic" post how pissed off I was about that.  I'm trying more and more to use this blog and some other creative outlets to redirect my hissy fits, but sometimes getting confrontational just feels best.  I think it comes from feeling invisible so often- I was raised with manners and I tend to take my conduct seriously and when I don't get the response I think I deserve I get Mad.  I insist on staying to the right on stairs and while walking down the side walk. I never block the subway doors.  I always make room for other people walking down the street.  I hold doors.  I don't know why.  No one ever pays me the same courtesies and that flames my fire because I am made of solid matter- you can't walk through me, rest your bags on my lap, elbow me while you read the paper, and think I'm not going to say something about it.  I might invite an unwelcome reaction one of these days, but people need to realize other humans do still exist and sometimes I can't help but be the one to remind them.

Oddly enough being on a high dose of Prednisone left me feeling kind of calm and serene at first, but as I taper off my fuse seems to be getting shorter and shorter.  For a few unfortunate days I was PMSing on 'roids and called more people "pushy asshole" to their face in that time than I have in six years of city life.  Every single one of them deserved it, but still, some things are better left said in your head because you just don't know who's packing heat.  But fuck strangers, the real victim lately has been my poor J!  Not that he's always innocent- we've honestly both got short tempers, and that's one of the things that bonds us.  We can both be irritable and pissy but it allows us to bitch freely and honestly about everything with each other.  For all the things we both like, there are just as many things that we both hate and it strengthens us in a way that, while probably a tad unhealthy, makes me smile.  But sometimes I just flip out at him because he's always around to be flipped out on and that's not fair.  It's really, really hard to find room in our apartment for the two of us and my disease.  I'm constantly keeping my eyes on Craigslist to see where bigger places (ideally with 1.5 bathrooms or more) are affordable and close to potential jobs.  More than anything I wish I could work remotely and just move anywhere without having to think about finding a new gig.  I guess on the flip-side being forced together in a small space leaves us no choice but to deal with any issues and conflicts as quickly and effectively as possible because there isn't anywhere to run, so that's a good thing.  

Well, this post was supposed to involve more embarrassing stories about past rages and blow-ups, but I think I'll save some of those gems for another time.  I'm back to feeling kind of peaceful right now, and I'm just going to take that and run with it while I can.





Image Source: Deviantart.com

Quickie Update

Trucking along on 30mg of Prednisone, steady so far although I'm noticing more side-effects popping up despite the tapering.  I'm getting acne on my chest and back, my appetite is increasing, and my skin has been getting really dry despite consistently applying moisturizer.  I went to the gym and did some kickboarding and leg exercises in the pool which felt really good at the time, but now my right knee is kind of acting up.  It was actually in the locker room that I realized my whole body is breaking out, that was a wonderful environment to be in for such a discovery.  It wasn't that bad, it was actually pretty empty, but still, it's hard not to feel self-conscious about it.  I'm also bruising easily, and clumsy, so I have a ton of little bruises all over the place that I didn't know about until I was changing in front of a wall of mirrors.  So all the UES snobs at my gym must think I'm some weird, unhygienic, battered trust fund kid to be showing up at their luxury sports club looking like I do*.  I hope it makes them squirm!!

I got my blood results back- my cholesterol is a bit high so I'm going to try to start taking Cholestoff this weekend to see if I can get that back into the mix without affecting my gut.  The good news is my hemoglobin is up, so I'm not really anemic anymore.  I'll keep taking my iron for a while longer though, and keep finding ways to get more in my diet just for giggles. 

Well, that's that.  Things have been pretty boring, which is a good thing-a great thing- so I'm not complaining.  I lie, I'm always complaining, but I'm not seriously complaining this time.




*I got a recession special at this gym next to my office-no contract, so enrollment fee- all classes are included and they have a pool which is what sold me, in case you are also wondering what the hell a slob like me would be doing at a luxury sports club.

Oh Yeah...

I was so wrapped up in bitching about waiting room manners, I totally forgot to discuss my actual appointment. 

I was very happy with the amount of time my doctor spent with me, and he was very thorough and attentive.  He wasn't as impressed with my progress as I'd hoped, and he's quite concerned with getting me off of the Prednisone as soon as possible.  Today I'm going down to 45mg for the next week, so hopefully that won't rock the boat too much.  The most startling thing for me was realizing that my leg weakness is from the Prednisone itself and not muscle atrophy from being in bed for so long.  I was also surprised to realize the colitis (specifically a cytokine called TNF) is responsible for sapping my energy- something I had previously blamed on malnutrition and, again, being in bed for so long.  So that was a bit upsetting, but I made it all the way to the Dr.'s office without incident and didn't need to take a nap when I got home so I'm still feeling optimistic. 

My blood tests indicate my hemoglobin is low (11.1 down from 11.13) meaning I have anemia from the blood I lost, but I was expecting that.  I'm going to try to pick up some slow release iron from the pharmacy, and eat more iron in my diet as well.  The big thing I have to think about now is what we're going to do next-  I'm meant to call and check in with him each week for the next month and then go back for a follow-up.  In the meantime we're going to continue the cortifoam and try to steadily reduce the Prednisone.  The question is, what after Prednisone?  He's suggesting Remicaid is less dangerous as a long-term treatment than Prednisone, but I'm effing terrified of it.  I don't want cancer or lupus or sores or infections or any of that other scary shit, but that's what I've said about pretty much every medication I've ever taken.  I'm always terrified of the potential side-effects, and in the end I cave because what other choice is there?  I didn't think of it while I was there, but Budesonide got me off of Prednisone the first time around, so I'll have to ask him about that when I call in next week.

I'm trying to get back to work for a half day today, which I think will go okay.  My doc's office is farther away than my job, and I made it there and back without incident so I'm feeling positive.  I'm about to have a turkey salad sandwich for lunch with a small glass of coke to pep me up (I'm trying to wean off of my soda dependency, but it's the only way I'm comfortable drinking caffeine right now).  I bought a ton of groceries to try and make healthier food for myself and plan to do a lot more cooking for myself.  I've got about half an hour before I have to head out, so I'm going to get a move on and hope not to crap myself or pass out between now and when I come back home.