A Prednisone Rant

 I would like to toss these out the window. 

But, realistically,  I'll probably need to take them again soon.

Over the course of the last four months, I've been tapering down oral prednisone.  I started at 40mg (on the IV at the hospital), and then transitioned to 40mg orally.  Over the course of many weeks, I tapered by 5mg (sometimes stalling to get blood under control).

I was on 5mg every other day for two weeks, and now I'm off completely.  (However, I still take Cortifoam and Hydrocortisone enemas, so prednisone is technically still getting in there.)  And I'm still on 80mg (two pens) of Humira every week.

Things aren't perfect.  I still see some blood and mucus daily.  But I'm hoping the enemas keep things under control (or maybe even alleviate the symptoms I'm seeing).

In the past year, I've been on high doses of prednisone for 8 out of the 12 months.  And it's taken its toll.  Here is my rant:

What I love about prednisone:

1. It lets me keep my colon inside my body.

What I hate about prednisone:

1. Fatface.  Sometimes it gets more dramatic than others, but I always get a voluptuous double chin and some truly lovely jowls.  Sexy.
2. Hairiness.  Holy fuzzy fatface!  And then when I taper (ie. right now), the hair on my head falls out in disturbingly chunky hand fulls.  You should see my shower walls, sinks, laundry lint filter, vacuum...
3. Insanity/complete lack of patience.  Looking back now, I regret the rage that almost everyone in my life (and some random strangers) were subjected to.  At the time, I was sure that they were the ones who were crazy.  Oops.
4. Insomnia. Who needs sleep when you can lie in bed thinking about all the things to be anxious about?
5. Total exhaustion when tapering.  Not sure how much of this is pregnancy related, but whooooooa...I'm tired. Maybe it's just that I'm not fueled by all that rage and anxiety anymore?

I'm sure I'll be back on oral prednisone sometime soon, but I'm crossing my fingers to get through delivery without a relapse. (Yes, I can hear the universe laughing.)

Bio-K: Conveniently Packaged Probiotics

$5 worth of health in this little bottle?  I hope so!

The Crohn's/Colitis board on Babycenter is a wonderful community and its members offer a wealth of information and support.  One of those members recently mentioned a probiotic I'd never heard of: Bio-K.

Today I'm tapering off Prednisone. (Well, 5mg every other day for two weeks, then nothing: that feels like practically being "off".)  Nervous without my drug crutch, I ran to Whole Foods this morning for a probiotic fix.   

Since this was the first day I tried it, I don't know if it works yet.  But I really hope Bio-K prevents flare symptoms, because it's got two strikes against it:

1. It's very expensive.  $30 for a 6-pack.  Yikes!
2. I don't love the taste of plain yogurt.  And it's kind of...chunky.  

 But the word on the Babycenter board is that the probiotics in Bio-K are more powerful and effective than in the SCD yogurt, so I'm giving it a shot.  (Though the yogurt has worked for me, so I may just stick with that in the long run.)

Let me know if you've had any experience with Bio-K (or if you've found a cheaper source)!

Glucose Test: If You're On Prednisone...

(Photo courtesy cardinal.com)

Yum! Who's excited??

Every doctor is different and will give different advice, but I thought I'd share my experience with the glucose test which we typically get between 24 and 28 weeks.

Bottomline: You know how everyone complains about that sugary orange stuff?  It might be pointless for you to drink it.

My doctor told me that when you're on high doses of prednisone, you often have problems metabolizing sugar anyway.  Instead of having me use the sugar drink, she had me just do a fasting blood test.  (We were both also concerned about how the high levels of sugar could affect my tenuous remission.)

I fasted for 8 hours before the test.  Then they tested my blood.  I ate my typical breakfast in the office, and then an hour later they tested my blood again.  The doctor was confident that this was enough, and I was happy to get out of dealing with the infamous orange drink. 

It's worth asking about if you're on prednisone or a sugar-free diet (like SCD)!

Halfway!

Finally! A legit bump arriving at 5 months.

Here's a bump pic at the five month mark.  I've been struggling to gain weight (yes, I can say that on an IBD blog because I know you all can sympathize) and feeling really down that I haven't been getting bumpier.  ("Is my flare impeding baby's growth?")  Looking online at other people's bump pics has made me really nervous about baby's size, especially between ultrasounds.  

It's easy to read all the advice for healthy moms and freak out.  I desperately tried to gain weight in the first trimester by eating all sorts of junk and avoiding exercise, which just pushed me into an unmitigated flare--totally counterproductive.  But my doctors have told me to not stress about the numbers on the scale; just live in a way that supports health and remission.  That gave me great peace of mind.

And after our 20 week ultrasound, baby is actually on the bigger end of normal.  Hopefully it all continues along that trajectory!   

In this pic, you can also see those leg warmers I was knitting a few months ago--finally finished!

Tapering Prednisone. Maybe.

 Here we go...

Well...my "quick taper" off oral prednisone is turning into a very, very slow taper.  While I'm still feeling a huge improvement, the actual progress isn't quite as impressive (blood loss, etc...you know the deal).  I bet many of you can relate.  My colon just isn't catching on: we're getting better, dammit.

I was supposed to drop from 40mg of prednisone to 30mg a couple days ago, but after still seeing blood daily, my doctor has decided to slow the taper.  I went down to 35mg yesterday and am still using the cortifoam and hydrocortisone enemas twice a day (as well as the Humira: 80mg injected per week). 

Tapering is always scary--I start to see little hints of the flare returning, and it's such a time of "wait and see what happens"; tomorrow could be a disaster or an exciting improvement.  One day can be such a huge turning point when on the cusp of a flare.

At first I really wanted to taper as quickly as possible; the less prednisone I expose the baby to, the happier I'd be.  But as time goes on, I dread a return to the hospital; stable medicine HAS to be better for baby than sporadic high doses right?  So I'm resigned to spending at least the entire second trimester on prednisone.  (That's what it's looking like with the rate of this taper.)  Break out the pill cutter...   

Health.

 Me, in the world's cheesiest picture.  But it's how today feels!

This morning I woke up and felt it.  For the first time since last March.  Like many of you, I've gotten used to the physical, emotional, and psychological toll of the constant flare.  And then this morning I woke up and felt that almost tangible difference: health.

It's the feeling that today will bring happiness, not more pain and worry.  And the actual ability to feel that happiness.  It's so hard to really engage with the world and feel happy when your body is failing; no matter how much I try to muster the will power to enjoy the moment, month after month, the physical drain of illness makes it nearly impossible.

We go through the motions ("This disease won't get the best of me!") but the things that would normally bring satisfaction, feelings of achievement, or even joy are only a success because we were able to complete them.  I'm so happy to be able to get meaning from life again.

I am so grateful today.  Like anyone coming out of an 8 month flare, I have lots of progress and drugs ahead, but getting a glimpse of the health that is possible makes it such and exciting road.

11 is the Magic Number

Oral prednisone: My ticket home?

Finally a breakthrough after 11 days on IV steroids!  Everyone says that it should only take 3-5 days to see a difference from Solu-Medrol, but I guess when you let things get out of control for so long, it can take longer.  While I'm certainly not close to symptom-free, frequency and blood loss are finally lessening. 

So tonight I begin oral prednisone to see if I can get off the IV.  If all stays stable, they'll let me go home in a few days to continue recovering there.  And as my doctor says, I'll continue to stick "all that stuff up my butt."  Yes, the enemas may have been the big lifesavers this week. 

The going home plan is 40mg of oral prednisone, 80mg of Humira every week, and cortifoam/hydrocortisone enemas morning and night.  I'm basically a giant water balloon of steroids, but I'll take whatever works.

Hanging in the Hospital

I began writing this blog because I was searching for others' experiences dealing with flares and autoimmune medications while pregnant.  I couldn't find a blog that followed a patient throughout her pregnancy (only forums where women would post concerns, but I'd never get to see the outcome.)  I wished there was a place where I could get a full picture of what pregnancy was really like with IBD, which is why I decided to start writing this blog.  That said, it's only right that when things get crappy, I actually share the honest experience...

Anyone who has experienced an autoimmune flare knows those things can come on fast and strong.  After months teetering on the edge, I'm battling a flare that really took hold when I began the second trimester.  

  

For those interested in the drug therapy I've been following based on my docs' advice from Northwestern and University of Chicago, here it is.  They assure me it's completely safe for baby (despite the terrifying things we read online). For my own sanity, I'm choosing to believe them.

• I've been flaring since April (on 60mg of oral prednisone for most of the summer, and I was following the Specific Carbohydrate Diet).
• By August, I was able to taper down the prednisone, and my husband and I were excited by the surprising news that we were having a baby.  While I am over the moon about having this baby, the research and my doctors concur that getting pregnant while flaring is ill-advised. I would not have planned the timing this way, as your body typically stays in whatever state it is in when you conceive (flaring pre-conception=flaring throughout pregnancy).
• I happened to be tapering off prednisone the day after I got the positive pregnancy test, so I went the rest of the first trimester with no oral prednisone but stayed on Humira, injecting 40mg a week.
• Because of food aversions, the only thing I wanted to eat those first few months was bread, cheese and bread, and more bread.  In my totally unprofessional opinion, this seemed to worsen the flare up.
• By the second trimester, I was losing a lot of blood daily and was pretty much sick all the time (fluid loss was a concern too).  I went to my gastroenterologist at 17 weeks, and they said if I left the flare uncontrolled, I would lose the baby, even this late. This was shocking to me, since I had assumed that 12 week mark meant I was out of the woods.  Not so, if you've got active IBD.  I've seen women on lots of online IBD boards saying they're not reporting their symptoms to doctors because they are worried about prednisone's side effects on the baby, but this was a huge wake up call to me.
• I took one 5-day Medrol dose pack (always useless), and then a few days' worth of 40mg oral prednisone (so I could stay home for Thanksgiving) before being admitted to the hospital for IV steroids (Solu-Medrol, 40mg per day) and fluids.

So that's where I am now. Day 2.5 of steroids and fluids. No progress yet, but they say it typically takes 72 hours to see any difference.  And if this baby comes out with 10 fingers, and 10 toes, you can all feel relieved about prednisone during pregnancy since I've been your guinea pig. (Fingers crossed...)

Working Out Woes

Ran a 5k at 7 weeks. Super un-fun. How do these ladies do it?

I was never someone who "loved" working out to begin with.  So when struck with the one-two punch of nausea and exhaustion (yay, first trimester), I embraced total laziness.  Plus, while jogging on the treadmill had always been tedious, within weeks of finding out I was pregnant, I found myself getting really breathless.  (I don't think there's any medical basis for this.  Probably psychosomatic.  Or just psycho.)

The other issue I have--and this one actually concerns me in regards to the baby--is that working out often increases my IBD symptoms.  I'm not sure if working out leads to heightened immunity which then results in autoimmune issues, but I do notice a direct correlation between the working out and flares.

HOWEVER, my sedentary lifestyle (combined with a new-found obsession with all things carb) was starting to freak me out.  So with the second trimester, I'm back to the gym (very moderately).  I'm really enjoying yoga.  Spinning is okay too since it's up to you to determine the intensity.  Jogging still sucks, but the stepper is alright.

My flare has actually gotten worse, but I suspect that has more to do with my dependence on pizza (due to total food aversions to anything with protein or fiber), and less to do with yoga.  Here's to hoping the coming weeks bring that mythical "honeymoon stage" of pregnancy...

"It might get better, it might get worse...

Pain scale from the excellent blog Hyperbole and a Half

...or it might not change at all."  Those were my gastroenterologist's words to me when I asked him what to expect with my colitis now that I was pregnant.  It's looking like I'm in the last group.  A few friends with colitis have conveyed that their conditions actually improved during pregnancy, but I haven't had that experience.  I would be curious to know the stats on that (how many people improve/decline) and how quickly those who improve see that change.

After a few dietary dalliances this week (a bagel one day, sukiyaki with rice the next), I definitely paid the price.  Back to fruits and veggies...(boo! hiss!)