Sunday, July 7, 2013

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?)

Friday, June 7, 2013

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!

Monday, May 20, 2013

SCD-safe Snacks, Part II

I love finding easy things that are SCD legal in the grocery store.  In this previous post, I told you about a couple stand-bys I love. Here are a few more snacks that almost fit SCD requirements, so they're my cheats lately:


Cliff's Kit's Organic Chocolate Almond Coconut Bar: These are a lot like LaraBar in the fact that they use dates to create their sticky, sweet base.  The cocoa in these bars makes them illegal for SCD, but everything else is okay. Plus they're addictively delicious; I buy them by the box.
 
 




Go Raw's Super Cookies: I buy these in Lemon and Ginger. They make other flavors too, some better than others (Pumpkin was not a fave for me). Don't expect cookies, but they have a nice crunch, a good flavor, and are SCD legal.



Wonderfully Raw's Cocoroons are delish, but they use maple syrup as a sweetener, so they're not SCD legal. I still eat them because they taste awesome and they don't feel as evil as some other options.  Vanilla Maple are my fave with Lemon Pie close behind. Cocoa Nibs...surprisingly not as good. And the Brownie are "meh"--I think I have higher standards for chocolate flavored snacks.


So those are my indulgences lately. Let me know if you've found some good, pain-free snacks!

Sunday, May 19, 2013

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!

Monday, April 8, 2013

Welcoming...

Marcus Reid

March 18, 2013
5lbs 0oz, 17"

After 8 days on hospital bed rest (due to pPROM), Marcus was born at 33 weeks, 5 days.  Because my water was broken, we had a schedule induction at 34 weeks anyway. 

Because I had a solid week in the hospital before delivering, Marcus was able to benefit from two steroid shots (for lung development) and two courses of antibiotics (run at the same time).  When he was born, he didn't need any breathing support and, aside from being small, was healthy.  He did spend a week in the NICU to be sure that his weight was following an upward trend.

Some of you might also experience preterm labor, so here were my big take-aways:

On bed rest:

  • Every hour extra that you can keep that baby inside, the better. We all know that, but when you're on bed rest, reminding yourself can be so helpful. 
  • If you experience pPROM like me, take a probiotic during the antibiotic course.  My flare didn't get dramatically worse this time, and I attribute that to this probiotic capsule, Ultimate Flora.
  • Ask your friends and family to bring in outside food for you.  Life on bed rest is dull enough without eating the hospital's roast turkey and string beans for every meal.  Treat yourself to little indulgences.
  • Start a project.  I began a baby book and continued a knitting project.  Seeing the progress of both of those projects made me feel a little less useless.
  • Don't watch TV.  This is my general rule when hospitalized anyway, but it's especially true when you can't leave the bed.  Daytime TV will make you feel brain-deadened and depressed.  (Ok, this is totally subjective!  If you love Billy Bush and Steve Harvey, never mind!)

On welcoming a preemie:

  • Breastfeeding is a challenge with a little babe (so sleepy!), but be diligent about pumping, because as the baby grows, it will become easier and you'll want the supply to be there. (8 times a day for 20 minutes...it's a goal, not always possible.)
    • Ask your hospital to speak with their lactation consultants if you're struggling.  The advice mine gave was truly invaluable.
  • The day you are discharged and go home, leaving your baby in the NICU, will be the worst day of your life.  But the next day will start a new routine, and then it's just life.  My hospital had a support group, and it was very helpful for me--I imagine many other hospitals provide this support as well.  Seek it out.
  • If your baby is anything like mine, don't expect more than 2 hours' sleep at a time.  They're just too small to have the energy stores to go very long between meals.  (This might be different if you supplement with formula, but I'm not doing that.)

 Overall:

  • Epidurals are amazing.
I need to thank those of you who offered words of support during this stressful but joyous time.  While I took forever to update you, I did see your comments and messages, and I was so touched by your thoughts.  Marcus's health at birth was far better than what the doctors had expected, and I can only think that part of that is due to all the thoughts and prayers supporting him.  Thank you.

 

Monday, March 11, 2013

Here We Go...

Well, I was warned from day one when my GI said, "You'll probably miscarry, so don't freak out." (Yes, he really said that.)  So I expected that my pregnancy wouldn't be typical.

And then when I was hospitalized, everyone told me I'd go into preterm labor since I had active UC.  They were right.

At 3am on Saturday morning, I woke up feeling like I might be peeing a little bit!  After going to the bathroom and feeling like things were still kind of leaky, I started Googling.  Lots of women talked about having little pee leaks later in pregnancy, so I tried to convince myself that's what was happening and got back in bed.  But every time I shifted weight, it felt like I was continuing to leak a little.  (I'm telling you these lovely details because I really had never heard of this happening before, and would have appreciated a detailed account!)  By 7am, I knew that I was either going to have a really annoying final 2 months of pregnancy (peeing my pants constantly) or my water was broken. 

I paged my OB's office, and they told me to go to triage at the hospital.  After a very quick internal exam, they confirmed immediately that my water was broken.  At 32 weeks and 3 days, the doctors decided to give me two shots of steroids to develop the baby's lungs and begin two courses of IV antibiotics.  My GI suggested Gentimicin and Ampicillin as the least dangerous for IBD.  The goal is to keep the baby inside and prevent contractions until 34 weeks. 

At 34 weeks, they will induce me, because at that point, with low fluids, the risks to the baby begin to outweigh the benefits of keeping him in.  (Risks include infection or him crushing the umbilical cord.)

So that's the latest.  Here are my conclusions/the lessons I learned about all this:
  • Apparently active UC disease can really mean preterm labor, just like the docs and research say.  
  • If your water breaks, the baby can stay inside (and the fluids actually replenish!), but there are risks of infection to the baby because the membranes are broken and bacteria can get in.
  • If the water is broken and you're close to 34 weeks, my docs won't stop labor if it begins.
  • But if you can make it to 34 weeks, the baby is in pretty decent developmental shape (though he will have to spend time in the NICU).
Just sitting in the hospital bed now, trying to stay relatively horizontal because, "Gravity is not my friend" when it comes to contractions.

Tuesday, March 5, 2013

Cinnamon Rolls...decent


These cinnamon rolls are only like normal cinnamon rolls because they have cinnamon and they're in a roll shape.  Those details aside, don't expect a real cinnamon roll. They're more like rugelach. Crunchy.

Which is why I would suggest adding raisins.  With raisins, this recipe would be a million times better.  Without raisins, I wouldn't make it again (although I have eaten every last one of these...)

(Note: I didn't make the icing because I'm not a huge fan of coconut oil.  That might make the rolls better, if you like the coconut flavor.)

Ingredients:
Roll:
  • 1 3/4 cup almond flour
  • 1/4 cup coconut flour
  • 1/4 cup of raisins
  • 4 tablespoons butter (room temperature)
  • 1/4 teaspoon baking soda
  • 1/4 teaspoon salt
  • 2 large eggs
  • 1 tablespoon honey
  • 1 tablespoon cinnamon
Icing:
  • 2-4 tablespoons honey
  • 1/4 cup Coconut manna/butter (Melted)
  • 1/2 teaspoon Vanilla
  • 2 tablespoons Coconut oil (Melted)
Directions:
  1. Preheat oven to 350.
  2. Combine flour, baking soda, and salt in a bowl. Mix.
  3. Add eggs and honey to the bowl. Mix.
  4. Add butter and mix it well, until a ball of dough forms.
  5. Using two Silpats (or two pieces of greased parchment paper) on either side of the dough, roll the ball into a 1/4-inch-thick rectangle.
  6. Remove the top Silpat or parchment paper and sprinkle the dough liberally with cinnamon. 
  7. Drizzle with honey.
  8. Scatter raisins evenly over the dough.
  9. Using the Silpat/parchment paper, roll the dough into a log.  Go slowly and repair any cracks along the way.  (Seriously, use the Silpat/paper! It's really helpful because it doesn't stick as much as fingers.)
  10. Cut the log into 1.5-inch rolls and place each on a greased baking sheet.
  11. Bake at 350 for about 15 minutes.
  12. Melt the manna and coconut oil. Mix with honey and vanilla.  Allow it to cool a bit so that it hardens on the rolls.