Poop Factory

(Video NSFW)

The good news is I'm back to pooping like a champ - the bad news is I'm running my poop factory on the night shift and it's really messing with my ability to get back to the day job. I've been lucky enough that they've let me sign on from home to help get some work done, but the problem is that I'm so tired and twisted from pooping like a machine that I find myself being flighty and making embarrassing mistakes, which bring on the darker side of the prednisone mood swings, depression and paralyzing anxiety. My daily schedule is basically toss and turn and poop all night, fall asleep around 7am, get up to poop and take prilosec around 8:30, fall back to sleep until around 10, take the first round of prednisone, try to wake up and eat something, slump around like a loser, take the second dose of prednisone around 12:30, and slump around like a loser some more.

I was honestly looking forward to being on a course of prednisone right now. The last time I took it it make me hyper-productive, and I was hoping to have a similar experience this time around considering I'm in the final two weeks of my semester. Unfortunately I'm thusfar only more disorganized and unmotivated than ever and it's making me rather disgusted with myself. I have so much I can be doing while I sit at home healing my body, but instead I just watch the time go by, waiting for tomorrow and hoping it'll be better than today. Tonight I'm going to try to take something to help me sleep with the intention of getting to work for at least a half day tomorrow. I'll probably be pissed off and miserable the whole time I'm there, but at least I'll be out of the apartment.

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. 

Lets Talk Titties *Updated 9/8*

So last weekend I managed to injure my right tit while playing wii sports with too much vigor. Whoops. I went to visit my physician today just to get it checked out, because the sore spot on the right side of my right boob felt a little thicker than usual and the pain has been bothering me for about five days now. I do happen to have PMS, which certainly doesn't help in that respect.

Some history - In 1999, the summer before I left began college, I had a breast reduction which brought me from an E cup to a C cup. Unfortunately my many years on prednisone left me with thin skin so the scars have never fully faded, and I find my breast to be excessively stretch marked. I have yet to find a lotion or topical solution to fix this. I typically refer to them as my "Frankentits," sometimes proudly, sometimes angrily. Per my GP they are also "the lumpiest breasts I have ever felt." Not quite the superlative I was looking for.

She didn't find any specific lumps of concern, but I'm scheduled for a mammogram next week just to be safe. I honestly should have had one shortly after the surgery, to provide a base-reference for mammograms of the future, but I never did. I'll blame it on college getting in the way.  So stay tuned for an update, as I'm sure I'll be eager to share the inevitable pain of having my already aching tits pancaked into an x-ray device.



**UPDATE** The titty crushing went swimmingly! I had the honor of breaking in a new mammography machine - Fancy! I won't say I'm in the clear until I hear it from my doctor, but the technician didn't seem to betray any sense of concern, and mentioned several times that it's normal for a woman my age to have lumpy breasts, especially if I've had reduction surgery. She was pretty tickled when I told her I assumed I injured myself playing Wii tennis.

In addition to the tit tests I had an ultrasound on my thyroid because my doc thought the right side was a bit large last I saw her. The US tech told me it seemed slightly bigger than the left side, but not enlarged - more likely a natural asymmetry, like when one foot is bigger than the other or one testicle hangs extra-low.

Image source: dvtalk.com

A New "itis" Joins the Team!

                                                     This has nothing to do with the post, but it came up when I                                                     Googled "Welcome Party" and I just couldn't pass it up

Colitis was sooo yesterday!  Move over and welcome the new bitch on the scene, Scleritis.  After checking in with my GP, I went to see an opthalmologist who gave me an eye exam, as dramatically re-enacted here:

 From what I've read if my eye issue really is scleritis I believe (knock on wood) that I have a very mild case of it at this point.  I have an arsenal of eye drops, but may wind up going back on 'roids for a few weeks.  At least if it comes to that it will only be a 5mg dose.  I'm hoping the drops will just work straight away and I can avoid taking any more prednisone, but if I gotsta I gotsta.

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"

Let's Talk About the "Other" Hole

At the risk of alienating some of my male readers, it's time to talk about the 'gina.  Specifically why I hate having one, and what it's like to gush from two holes at the same time.  I hope you're not eating while reading this.

I've always noticed a correlation between my monthly "gift" and my gut problems, but this time around it's much more of a pronounced bond the two share.  I'm actually home from work today because I was up all night with the trots.  Well, that's an exaggeration, I got up thrice to poop, but I've got firehole as though I'd been going all night.  I was having issues all last week and was cramping so bad yesterday I ran to the gym on my lunch break to do a few yoga poses. For the record, cobra and bow pose are great for lady pains.  

I was actually supposed to taper my Prednisone to 5mg every other day starting last week, but I knew Hurricane Flo was on the horizon so I waited.  It's a good thing, too, because I'm sure I would have shat myself at some point if I'd tried to wean while raggin' it. All last week I was exhausted, breaking out like a fry cook, and shitting like a cremee machine.  After what seemed like an eternity of PMS I finally started bleeding yesterday morning, and as of around eleven o'clock this morning my pooh was starting to get back into shape after a long weekend of loosies.  This is good because it means I'm getting back to normal, but it also really worries me because I don't want to have to go through this every two weeks.  When I get PMS or anything related to the timing of my period, it begins a week before my period, and lasts through my period, which generally lasts 5-7 days.  Two weeks on, two weeks off, it's a friggin' nightmare.  And I for one get terrible anxiety during the two weeks off, because I know what's eventually coming and it's exhausting.  My gastro seems to think that it'll get better once I'm fully in remission, but I'm skeptical.  I'm also extremely pissed off that, while doctors acknowledge the bowel/menstrual connection, there's nothing conclusive to be said about disconnecting the two.  Should there be some way to handle this with hormone treatments?  I remember when I was on so much Prednisone my period stopped- the one nice side effect that drug ever gave me!

I know women who have full remission during pregnancy, and other women who reach the brink of death when trying to carry a child.  I have no doubt that hormones play a significant role in agitating and relieving IBD, but to hear my doc tell it there are shamefully few studies on the matter.  If anyone out there knows of any, point the way! 

image source: dvdbeaver.com

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?

Holding Pattern...

Saw the doc on Monday, nothing too remarkable to report.  I've been pooping less, down to about 1-2 solid movements in the morning, and occasionally a nooner will pop out depending on how much I've had to eat.
I've been holding at 10mg of Prednisone for over a week now, and on Saturday I'll go down to 5mg and see how that does me. 

Most of my 'roid side-effects have calmed down, except I've just started to experience hair loss (no biggie, I have a lot of hair so it's not really noticeable.  Except to J, who keeps finding it in the shower drain much to his chagrin!).  I still have minor shin splints, and my eye sight could be better.  I have also been really, really bad about my eating habits since stopping the SCD menu.  Before starting the diet I had already removed refined sugars, red meat, and most dairy from my regular rotations.  I wasn't gluten-free, but I was definitely low-gluten which was a huge change for me.  And now I'm eating anything I can get my piggy little hands on!  Chocolate and cheese especially.  I'm hoping to get out and buy some healthy groceries this weekend to get me back on track. Regardless, my poop has been in good shape, knock on wood!

In other health news I woke up yesterday with that tell-tale scratch in the back of my throat that says "you are getting sick."  I started taking my multi-vitamin again yesterday, and today I've taken vitamins c, e, and b-complex as well to try and stave off whatever is trying to hurt my healthy cells.  I've been eating SCD chicken soup for lunch every day for weeks, and I had a huge bowl of it today.  I've also been drinking a lot of tea with honey but I just feel more and more woozy and sick-headed.  Oooh, I wish it were Friday!! Not that I enjoy being sick on the weekend, but after my last epic sick leave I'd feel less guilty not taking more time off.

Well, that's it for now...

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 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

oops.

Well, I fell off the bike yesterday (I know that's not the saying, but I like this picture).  I'm not beating myself up too much, as I've consulted with friends, family, and strangers alike and the consensus is that I should probably just start over.  I thought I'd done my research, but the whole intro part of the diet was something I didn't really prepare myself for enough. From what I've gleaned I'm probably doing myself a disservice by jumping in too fast.  But more on that later, about that slip...

One of my aunts passed away this weekend, and I had to meet my mom at the airport early in the a.m. and head out to Long Island for the services.  I made sure to eat a good breakfast before leaving my apartment, but somehow allowed my mom to convince me that my uncle would have something I could eat at his house for lunch.  I should have known better and planned ahead to pack myself some snacks, but I think deep down I wanted an excuse to see what would happen if I ate something non-SCD after eating only legal foods for a week.  So when my Uncle offered me home made split pea soup with ham in it- my favorite!- I couldn't turn it down.  I was even weaker, though, and had myself half of a turkey sandwich with a small slice of American cheese on potato bread as well.  I did have a gross looking mini-poop not long after, but I don't know that the reaction would be so immediate.  Otherwise I've actually felt better today than I've been feeling the past few days- a sharp lady pain today has me thinking Aunt Flo might be to blame for some of the symptoms I've been having (not many symptoms- slight tummy cramps and the occasional hint of blood in my stool).

So, back to starting over with the SCD thing.  I'm having an SCD dinner and will continue to strive to eat only SCD foods, but am starting to think of this more as a training period than the actual marathon.  My palate and my lifestyle need to recalibrate before I can really do this right, and I want to do this right. I need to take another look at the SCD chart and check off the "legal" things that should be "illegal" for me (cider is the first thing that come to mind).  I also think I need to focus on figuring out my medication situation.  I went to get some blood work done to test my Imuran levels, and it made me realize that I should probably get my meds regulated and stabilized before messing with other variables (ideally returning fully to SCD will then get me off of the meds).  My doctor had originally advised me to start the diet while still on Prednisone, but I would rather know that my symptoms are from weaning off the Prednisone and not bacteria die-off or over-consumption of grape juice (so far my only source of sweet besides honey).

I'm hoping that over the next few months the medication situation will get figured out, and hopefully I'll be ready for the actual SCD "marathon" come summer, if not sooner.  I don't see myself ever doing the intro diet for a full five days unless in dire straights, but I should definitely give it more than one day and try to move beyond it at a pace that's outlined nicely here at Pecanbread.com.  I'll also continue to build my arsenal of SCD recipes and work on improving my kitchen skills to make myself a more efficient, delicious batch cook able to handle this lifestyle for the long-term.

In other news, Aunt Flo has indeed reared her ugly head since I started working on this post, and she always causes trouble with my gut.  I'd really love to read a study about the connection.

DAY ONE: Scattered Thoughts re: SCD

Today's the day I try to tackle the Specific Carbohydrate Diet.  I'm already thinking about giving up.  I'm terrible!  It hasn't been a day and I'm already throwing a fit for some chocolate.  But cocoa, like cocaine, is addictive, and I would be doing myself a disservice to not at least try to quit it.  Anyway, that pot up there is the start of my first batch of starter soup.  But am I getting ahead of myself?  I don't think I've explained the SCD regimen in any previous posts, so let me get you up to speed.

I'm still weaning off of Prednisone, and last I saw my doctor (on Monday) we discussed diet.  I've been a little crampy and have been farting like crazy this past week, which has me nervous that the lowered dose of Prednisone is allowing some symptoms to come through.  I really, really don't want to go on Remicaide, so I figured I'd try changing my eating habits.  My first change, as I believe I've discussed here, was to cut out processed sugar.  No easy task for someone who could eat sourpatch kids three meals a day, but I did it and I was super proud.  I also spent a butt-ton of money on alternative sweeteners, like stevia, pure maple syrup, and molasses.  I had cut down on red meat, and was relying heavily on soy.  I discovered a recipe for a decadent soy "dream" pie, which basically tasted like chocolate mousse, but without any junky ingredients (well, save for chocolate).  I was pretty happy with my ability to change my eating and shopping habits, and was enjoying my new recipes.  I thought, "Hey, maybe I should try that crazy diet I read about as a kid."  I don't mean "imbalanced, fad diet" crazy, so please don't let that fool you.  By crazy I mean crazy disciplined, as the SCD is an extremely restricted diet that many people with IBD praise for easing and even "curing" their symptoms (it has also developed a following among parents of children on the Autistic spectrum).  I have two friends that have tried the diet with temporary success (both eventually relapsed for different reasons). Little did I realize I'd have to give up half the stuff I'd just retrained my tastebuds to celebrate, but oh well.  My doctor does not particularly endorse the SCD regimen, as it is based mostly on theory and anecdotal evidence, but he conceded that he has had patients follow it with success and advised that if I do it, I start while still on the 'roids. 

When I first heard of/tried the SC diet I was about twelve or thirteen, and I lasted all of one day. The diet is outlined in the book Breaking the Vicious Cycle, by the late Elaine Gottschall (see link on the Amazon sidebar). You can visit the official BtVC page here.  In addition to learning more about the diet, you can find a comprehensive list of foods that are SCD "legal" and "illegal" and while there are many wonderful foods that are legal (including bacon and shellfish) there are some real whoppers that are not.  Potatoes, all grains and wheat, rice, and soy are forbidden.  No more soy milk, soy pie, brown rice bread, all of the staples and crutches I've been leaning on these past few weeks are now out the window.  Thankfully, whereas the one and only resource for SCD recipes sixteen years ago was the BtVC book, there are now whole online communities devoted to sharing SCD recipes which also offer support and guidance.  It seems like a good time to give the diet another go.

So today is Day One- it's also Valentine's day which makes wanting chocolate even worse!  I can't complain though, I had my "last supper" to celebrate last night.  J took me out for a nice little dinner at a local tapas joint, finished off by a decadent dark chocolate souffle...mmmmmmm.  But today is a different story- back to the starter soup.

They say for between one day and the first week of the diet you should limit your intake to homemade chicken soup (following the recipe in the book), broiled beef patties, broiled fish, eggs (if you don't have the runs) and watered down 100% grape juice.  So I made a huge thing of the soup, but am really only planning on doing the starter diet for today and maybe tomorrow.  The thing is I'm still on the 'roids so I don't have the runs or any of the other symptoms that others may have when they first start the diet.  I do want to take a day or two to let some of the residual crap in my system to clear out, but I also don't think I can make it a full two days just eating the same bland stuff.  I'm ready to try some recipes!

I found this website, Comfy Belly, which has some scrumptious looking treats on it.  I plan on making the Parmesan Thyme Crackers and Cinnamon Cookies so I can snack.  Snacking and lunches are probably the most important things for me, because those are the foods that will get me through the work day.  I also love the way the author writes- she's great about communicating when a texture or end result might not meet your expectations and I appreciate the candor and honesty.  I can't wait to start testing out some of the recipes.  I just ordered a cheap video camera to document the event, but the stupid thing hasn't shown up yet so you may have to bear with still photography for a dishes.

I also want to point to SCD Lifestyle, a great resource for starting the SCD diet and knowing what to expect. These guys recently added me on Twitter and have been very friendly and helpful.

So stay tuned for my (mis)adventures in the kitchen...

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.

CHEEK WATCH 5

This week I tapered down to 35mg of Prednisone, and in the lipstick pictures above I think I see my face coming down a bit- but I think it has to do with the fact that I took those pictures later in the day.  The last picture on the end was taken just now, at 7:30a.m. and I'm looking pretty puffy.  The other night I caved and ordered Chinese food (I had my period this week, which saps my patience and my will power) and when I woke up my mug was really swollen. Oh, and if you hadn't guessed this cheek watch thing is in no way a controlled study.  I should really be taking care to make sure all the variables and camera settings are consistent each time, but I'm quick and dirty so that's what you get.

I've been having roid rage this week, also exacerbated by being on the rag, I'm sure.  I'm drafting another entry on that topic, though, so I'll wait to elaborate.  I went swimming for a few minutes on my lunch break the other day, just to do a few laps with the kick board to stretch my legs.  My legs have actually been getting a lot better, knock on wood.  I've been able to stand for longer periods of time, and walk at a faster pace.  I have tried to run for the bus a couple of times, and while I haven't screwed myself yet I can tell I'm pushing my luck.  Lifting my thighs is still a bit of a challenge.  I've really enjoyed working on a 10-6 schedule, I've been waking up around 7:30 every day, which gives me time to ease into my pill routine and have a little breakfast. I've always hated eating breakfast, and I still don't care to eat right after waking up, but now I'm starting to like having a smoothie or a slice of toast before heading out the door.  I think my aversion to breakfast has also stemmed from not wanting to eat before getting on the train for fear of making myself have to poop. 

Tomorrow I scale back to 30mg of Prednisone, and am meant to check in with the gastro on Monday.  The following week I'll go in for a face-to-face, and I should have some blood test results coming my way soon.  I'm still working on retraining my palate in preparation for considering an elimination or specific carbohydrate diet.  The one thing I haven't been able to sacrifice is soy.  Tofu is too much of a crutch for me when not eating red meat, dairy, or sugar.  I honestly don't think soy is a "trigger food" for me anyway, as it usually makes me feel pretty good, but if I have to give it up down the line to avoid Remicade I'll do it.  But for now it's staying in rotation.  This is making me hungry so I'm going to go make breakfast now.

This might ruin popcorn chicken for you but...

But that's what my poop has been making me think of lately.  Not quite like the nuggets shown above- I guess they're bigger now, but when I was a kid I remember KFC popcorn chicken being smaller and that's the version of popcorn chicken I'm thinking of. Not every time, but more often than not when I poop it's these little light brown balls that collect in a pile at the bottom of the bowl.  Thanks to the steroids the association actually makes me hungry. 

I can't think of a photo, but here's an update anyway.

Since this past Monday I've scaled down to 40mg of Prednisone, and I started taking slow-FE (slow release iron) last weekend.  I was really happy to have a three-day weekend and was actually pretty active the whole time.  I cooked like crazy- I roasted a big chicken, which was put to use as chicken salad for lunch all week.  I made a huge batch of carrot soup, and one night I made a meatloaf, mashed potatoes, and green beans.  I've also been making smoothies for breakfast- So Delicious soy ice cream, chocolate Silk soymilk, a banana, and a big ol' dallop of Manuka honey blended up nice.  BUT now I'm facing a dilemma- my gastro told me to focus more on reducing processed and refined sugars than gluten or anything else, which is fine despite my sweet tooth.  I'd rather cut the sweets and feel better.  But I'm finding that researching specialty diets is like studying philosophy- everything I read contradicts basically everything else I read.  Half the stuff on a low-residue diet is banned by the specific carbohydrate diet, all of my favorite veggies are banned by low-sugar diets..so frustrating! How the hell am I supposed to know which diet is best for me?  I suppose the answers are instinct and trial-and-error.  I think my method will be to just be more aware of sources of sugar and allow for those naturally occurring (I really love carrots, potatoes, beets, and bananas) and try to be good otherwise.  More water instead of fruit juice, and water down my juice when I do drink it.  Maple syrup makes perfect sense as a replacement for brown sugar, and I picked up some molasses and stevia today. 

I've been up since 6:30am and I haven't had any intention of napping which is amazing.  I had a smoothie and white toast with seedless natural jam for breakfast, then got some bloodwork done for my gastro but through my gp's office.  I always have fun visiting my gp, she's a real hoot.  She's a little kooky, but she showers me with love and you just don't get that enough from care givers.  I've basically been cooking and doing dishes all day.  I don't know where this energy is coming from.  I baked a really gross gluten-free banana bread with apple sauce instead of butter and honey instead of sugar.  It was a major fail, but I think it was the particular gluten-free flour mix I used.  Well, it's a starting point and maybe I'll learn from it.  I also tried making a chocolate tofu cream pie- the batter tasted fine when I was making it, I'm hoping since it's chilled it's nice and creamy.  I'm roasting a pork loin over fennel (which is supposed to be a natural anti-inflammatory), carrots, and sweet potatoes, as well as a spinach casserole that includes garlic, mushrooms, and a few not-so-healthy things like butter, bread crumbs, and parmesan cheese (although I believe parm is lactose free?)  I was bad a few times this week- I had chinese for lunch one day and pizza for dinner, but I'm trying to approach altering my eating habits the same way I approached quitting smoking- move slowly but surely and don't give up if you cheat. I have a friend in Canada who's having success doing an elimination diet, so I've gotten some great information from her to mull over...though I question my discipline!

I'm thinking when I call to check in on Monday my gastro will try to reduce the Prednisone to 35mg.  Good news, but also scary because what if that's too little?  I'm also noticing I'm having more side-effects now despite being weened already.  Still the same cheek/acne stuff, but now I'm having roid rage (might just be normal rage though, I really hate this city these days).  I've called more strangers "pushy asshole" to their face in the past week than I have in the six years I've lived here.  In the earlier weeks of being on Prednisone I actually felt really serene and peaceful.  I think the problem is the urgency and impatience radiating from everyone else penetrates that serenity and spreads like a virus.  I keep scurrying and running when I know I not only shouldn't, but basically can't.  For what?  To get where I'm going three seconds sooner?Anyway, I'll write something a little more extensive on anger and all that.  For now, I have a roast to check.

CHEEK WATCH 3 (and some other updates)

Ah, what a fine new chin I have growing in behind the first one!  Honestly, if this is the worst of the side-effects, I'll be quite happy.  I've noticed my legs hurt less now, I think going in to work and having to walk more has actually been good for me.  I've had to really work on my mental state when coming and going, reminding myself not to rush and that there will always be another train and that if the subway stops between stations it's not cause to panic.  Usually when I get stuck somewhere I think "Oh great, what if I have to poop?" and that is immediately followed by "I do have to poop- right now! ohnoohnoohnoohno..." and then the panic makes my stomach cramp so I really do start to have to poop and I can really only blame myself.  That hasn't happened yet this flare-up, and hopefully it won't. SERENITY NOW!

Last night J and I went out for dinner for the first time since this all started and it was really nice to be out.  I was nervous about eating a restaurant meal and needing to run to the restaurant bathroom, but everything went over okay.  We went to a southwestern place, which had me a little nervous- it wouldn't have been my first choice for my first meal out, but they were offering free movie tickets to "Legion" for next week and well, we couldn't pass that up.  Luckily I was able to order my meal (crab quesadilla) with no chiles so it was nice and mild.  I ate too many salty corn chips (I really need to curb the salt while I'm on the 'sone) and we split a little cheesecake.  I was worried all the cheese would mess up my tummy, but I've been pooping the same as I have been for the past few weeks (still little like popcorn chicken, but solid and brown at least).  I did wake up at five this morning with really bad heartburn, so I took my Prilosec early and was wired until eight when I finally dozed back off.

Hoping to utilize some new kitchenware today by cooking dinner for friends.  I'm starting to research and collect more gluten-free recipes to incorporate into my diet, just to try, you'll see a new link in the blog roll for a blog that seems pretty resourceful. If you have any suggestions, let me know!

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.