Stool Transplant...Not Looking So Gross Anymore...

I've written about stool transplants before.  But even since then, my perspective has changed from something abstract to something that's a personal possibility.

It's been a week and a half since my first Simponi injections, nothing has changed, and I know I'm teetering on the edge of hospitalization.  After more than a year on high doses of prednisone, I want to avoid getting back on that roller coaster.  There aren't a lot of options.

This article about FMT (fecal microbiota transplant) was in the New York Times yesterday.  In short, taking a healthy person's stool and "transplanting" it into a sick person's colon can populate the sick colon with healthy microbes.  And it seems to really work when all else has failed.

Next time I see my doctor, I'll be asking about this. (Is that how you know you're at the end of your rope?)

Simponi: Not A Moment Too Soon

Just last month, Simponi became the newest biologic to be approved by the FDA for ulcerative colitis. 

And as I'm in a downward spiral of a flare, I'll be switching to it as soon as my insurance approves it.  (Or, I should say, IF my insurance approves it...please, please, please.) I've been injecting two Humira pens every week; Simponi will be one syringe every month. So that's nice. But the real question is, "Will it work?"

Let's hope so. I'll keep you posted. 

The other new development (or at least, new to me) is that there's a blood test to see if you've built up antibodies to Humira.  It's really expensive, so I'm skipping it since it's pretty obvious the Humira has stopped working, but it's nice to know that option exists.

And finally, for anyone else pregnant/breast feeding and on biologics, my doctor is telling me to continue to breast feed when I switch to Simponi.  He says that if the drug could have an effect orally, we could take it by mouth, but it's very fragile and will not pass to baby. Again, let's hope so!

Reboot!

Two months already??

 

I'm back! Baby is two months old, so it's about time I get back to it.

Here's what's been happening colitis-wise...

• Around delivery, I was flaring mildly (after tapering off oral prednisone and going off Humira to prevent infection while on bed rest after the water breaking).
• I restarted Humira when the babe was a few weeks old, 80mg every week.
• I restarted hydrocortisone enemas and Cortifoam (one in morning, one at night) when delivery mess healed (about 4-5 weeks postpartum).

Things are awful.  Tons of blood, frequency, pain, urgency.  I think it's exacerbated by the fact that the darling babe sleeps two hours at a time, so I'm not able to sleep at night.  Most of us have increased inflammation with lack of sleep, right? It sure feels like I do.

It's also been a lot harder for me to stay strict with Specific Carbohydrate Diet.  If any of you have tried it, the diet requires a lot of preparation and work, and I just don't have the energy right now.

The GI is making me take a C-DIFF test before we change anything. (Anyone else take a million of these per year? So annoying.)  It sounds like we'll be switching biologics if possible.  But I'm at the point where I'd really consider j-pouch surgery.

Any experience/advice with the surgery is welcome!

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.)

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.

The fun continues!

After 4 days on 40mg Solu-Medrol (through IV), my doctor is having me use Cortifoam enemas in the morning and more expansive hydrocortisone enemas at night.  While I do have pancolitis, these enemas have offered a little relief (at least from frequency).

I also took a double dose of Humira this week. My doctor says sometimes this can "reclaim" patients who've built up antibodies.  Fingers crossed. 

Other than that, just hanging around waiting for something to happen so I can be discharged from the hospital!  Thank goodness for knitting projects.

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...)