The Plague

Man down.

This was one intense virus!  I couldn't function for nearly 3 days!  I'm talking in bed asleep for more than 2 full days.  No reading, no TV, no Ipad... asleep.  I'm finally feeling like myself again, except for the fact that I can't hear out of one ear and I have an awful cough.  But I survived!!  Thank goodness for my wonderful husband, he took the week off to take care of me and our children once he had recovered!  Also, thank god for daycare.

So, being super sick on this crazy diet is not easy.  When you don't feel good, what do you want to eat?  Crackers and peanut butter, right?  Maybe a salty can of soup?  Not the options I had... which were homemade broth (I'm so sick of this I can't even look at it), a lot of meat (I'm nauseous and you want me to CHEW?), pumpkin, and zucchini.  Yuck.  So I added back in bananas and peanut butter.  As in, the only think I ate on Wednesday was a banana... and again on Wednesday.  Thursday I managed a small amount of soup, and friday I gave in an ate a spoonful of peanut butter.

All said and done... I lost another 7 pounds last week.  Crap.  I am now at an alltime low of 123 pounds... which would be great if it were on purpose, but it's not!  I'm trying NOT to lose weight at this point, and it's not working out so well...

Yesterday afternoon I went for my first infusion of Entyvio, the new treatment I'm trying.  About 50% of people who try this drug for ulcerative colitis see results at 6 weeks... so fingers crossed!  But my weight loss has been so drastic and fast, that when they tried to enter yesterday's weight into the computer a flag came up to make sure they didn't make a typo!  I've lost 15 pounds in the past month, and almost 50 (yes, FIFTY) pounds in the past couple of months.  I weighted 170 for a while after the baby was born, due to all the steroids I was on.  I'd estimate that since Christmas I've lost 25 pounds... that's a lot!  Too fast!  Not healthy!

So is this diet working for me?  The truth is, I don't think it is.  Today is day 60.  I'm afraid to give up after all the energy I've invested in it at this point, but I'm only feeling marginally better, and holy cow is it inconvenient!  It's nice that my clothing isn't too tight anymore, but this isn't sustainable.  I've been stuck in the intro diet for much, much longer than is recommended, but between the steroid taper and food reactions I just can't seem to get out of it!

So here's my plan:  Start adding foods a little quicker, hold off tapering prednisone for a few more weeks.  Add high calorie foods first - yesterday I added avocado.  I'm going to try waiting 2 days between foods rather than 3 or 4, to try to speed things along.  I'd love to know what's bothering me, but i think nutrition is more important at this point.  I've been eating a lot of peanut butter, and I'm going to try almond butter again in a day or two as well... then I think i'll move onto eggs.  If i can successfully introduce eggs and almonds, then I can start making some baked goods, which will really help me pack in some calories.  I'm supposed to be focusing on introducing vegetables, but I think calories are more important right now.

The truth is, if i lose another few pounds, I'm going to have to eat a potato.

Back to Basics

It's been harder to find time to blog about this journey than I expected!  Granted, I should have known that with 2 small children, a house, and a job... that anything non-essential would be sporadic.

Good things that have happened over the past 3 weeks:

• Today is Day 53 of the diet, and I'm still alive!
• I've tapered to 10 mg of Prednisone
• We found help for the baby while husband's Mom is away for 3 months
• I'm starting to feel in control of my life again
• I got to see my family to celebrate my dad's 65th birthday!
• My son slept through the night for the first (and only?) time!
• He also got his first 2 teeth!

Bad things that have happened over the past 3 weeks:

• My son got his first 2 teeth...
• My house (and greater family) has been struck by the plague
• Very cold and lots of snow = 2 year old is BOUNCING OFF THE WALLS
• I've watched Frozen way too many times
• I was in total despair about my guts being bad again, but I may have figured out the problem(s)

My colitis had been improving with this new diet... and then it wasn't.  And then it was getting worse!  I was following the 3 day rule for introducing new things... but hadn't noticed anything in particular that could explain why I was getting sicker.

While things got bad, I tried one last infusion of Remicade, but we've declared it a failure (again).  I am scheduled to start Entyvio next Monday, February 23rd, as long as I don't catch the plague that my children have been spreading all around... I'm the last man standing, believe it or not!  (Everyone has had stomach problems with this virus... they're getting a little insight into my world!)

I couldn't just sit around waiting for my Entyvio infusion; I was despairing at the lack of control over my body!  I noticed that I was having major trouble with sugary things like juice and honey, so I wondered if I was having a problem with fructose malabsorption.  I read that this can be caused by SIBO (small intestinal bacterial overgrowth), so I cut out the little remaining sugar I had left for a week or so.  This meant no carrots, only certain squashes, no honey, and no bananas!  I haven't had cravings in a while, but this caused some major cravings, which made me hopeful that it was working to kill off some of that bacteria potentially causing my sugar troubles.  I'm still treading carefully, but have started eating a little bit of the more sugary squashes again, as well as some honey and bananas and so far it seems like I might be doing better.

A lot of people insist that dairy is a problem, but I kept saying that it wasn't for me, since I had given it up for substantial periods of time while breastfeeding both children.  However, looking back at my food diary, my downhill trek did start the week after I introduced yogurt...so perhaps I was having some kind of slower-to-show reaction to dairy.  Realizing this, I binged on cheese (I love cheese), and then committed to a modified intro diet (some spices, zucchini instead of carrots) for 3 days, then I'll continue the diet without dairy and see how it goes.  So far this seems to have helped!  I feel like I'm regaining some control.

A third thing, which complicates everything, is that I think my colitis is very strongly tied to my hormones. This could be uncomfortable for some people to read, so proceed with caution!

Frustrated

I feel like I'm not making any progress.  I had a hard week, and I was hoping for a speedier recovery. I need to remember that I've still come a long way, even with this weeks setback - maintaining perspective is important!  I need to be patient!

Good things:

• I've survived 30 days on this diet as of today!
• I've added bananas (uncertain whether I can handle them - too much sugar?)
• I've added yellow summer squash (hooray less boring soup!)
• I've added homemade 24-hour yogurt and butter (not homemade...)
• I've stopped pureeing all of my carrots and winter squash (yay for chewing!)
• Bacon is delicious
• I've tapered to 12.5 mg of prednisone per day (I  had been on doses of 20+mg for over a year, much of that at 40 mg, eek!)
• I look pretty good... most of my "thin" pants fit again, and my steroid "moon face" is melting!  Plus there's the fake tan from the orange foods, haha.
• For the past 3 nights, my son has only woken up once each night!  And daughter slept decently in her new toddler bed, woo-hoo for mommy getting a little sleep too!

Bad things:

• I didn't taper to 10 mg of prednisone today like I was hoping to, my belly is still too unstable
• My belly is unstable... things got really bad earlier in the week after tapering and some crazy stress (daughter had a very high fever for 5 days and son refused to sleep as well, so mommy was very tired and very worried, and with daughter home got no work done so work was stressful as well)
• My belly is waking me up during the night, so even though kids are giving me a chance to sleep, belly is interfering
• I tried an anti-spasmodic for the first time this week, and it didn't help much :(

Worries:

• The doctor wants to try Remicade one more time, in case the improvement I saw was due to Remicade finally kicking in and not the diet itself.  It makes me very angry that doctors discount the diet when there is so, so much anecdotal evidence out there that it at least helps... not necessarily a cure, but helps... but I suppose Remicade could be a piece of the puzzle, so I'll give it one more shot later this week.  In the meantime, fingers crossed my body straightens itself back out to the improved state I was experiencing a few weeks ago!
• Remicade is scary, always.
• My appointment for Remicade is in NYC at 9 am... how on earth am I going to get out of my house in time?  There's no way my belly is going to allow that!
• That one of the foods I added could be causing some delayed irritation... like dairy.  But my life (well, at least my mental state) got so much better when yogurt became an option... and I've given up dairy for months several times in the past (breastfeeding) and didn't notice any improvement.  So I'm sticking with it for now!
• That I won't have my life under control when my live-in mother-in-law goes on an extended vacation starting in mid-February (she's a real mixed blessing... stressful by the nature of our situation, but very helpful)

What now?
I'm not going to make any changes to my diet this week, other than backing off on fats and sugars.  Not eliminating them, but backing off.  I will go for the Remicade infusion on Thursday, and if I stabilize this week I will try to taper to 10 mg of Prednisone next weekend.  Hopefully I'll get to add a nice food of some kind later next week after the prednisone taper... if things are going really well I might spring for eggs or garlic!  If not... maybe just some sage (spice) or zucchini (since yellow squash seems to be ok so far).

I'm the Anti-Popeye

Looks like I won't be sprouting giant muscles anytime I pop open and chug a can of Spinach... I've had a bad 36 hours after trying to introduce spinach into my diet.  Bummer!  I was so looking forward to eating a non-orange vegetable!  I won't miss that weird gritty tooth feeling I get after eating spinach (I also get it from donuts... strange?), but I really appreciated the flavor contrast it provided to my current menu options.

So, after a day of stomach pain and a night of no sleep (and 2 sick and whiny children, one of whom spent the night in my bed thrashing and head-butting me), I'm feeling pretty dejected this morning.

I was very excited to introduce homemade yogurt today, but I think I'd better wait a day for my insides to recover.

So sad.

Foods tried and failed so far

• Pears
• Spinach
• Grape Juice (suspected it was causing too much gas, so removed from diet)
• Multi-Vitamin (was feeling a little wonky, so removed from diet again after reintroducing)

Foods I'm considering "successfully" re-introduced

• Acorn Squash
• Butternut Squash
• Ginger
• Lemon (I think, I've just been squeezing some juice to my water)
• Thyme
• Honey
• Coconut Oil

Notice... only 2 of those in the 2nd list are actual foods.  UGH.

I think I can... I think I can... I think I can...

A birthday with no cake!

My birthday was this weekend... and there was no cake in sight!  Very sad, but at the same time I'm very proud of myself for persevering with this diet.  Maybe I should have made a ground beef cake... eeeew.  I did break down and let myself have some honey, so at least I got to have a taste of something sweet.  I tried adapting this recipe for coconut oil "frosting" with semi-success (see recipe below).

Today is day 16 of this new eating plan... and unfortunately I don't think it has gotten any easier.  I've stopped crying, but I am BORED and FRUSTRATED!!  My belly hasn't really improved much in the past week or so, but I'm still better than I was a few weeks ago.  I almost never feel bloated, and the air bubbles that bring on cramps and the other issues that no one wants to read about seem to be limiting themselves to later evening and early morning most days.  Hooray for being able to leave the house during the day!

I'm getting really sick of eating the same foods over and over... even though I'm changing up my meat selection frequently, it's still meat.  I'm hungry often lately, but I think it's the kind of hunger that stems from being bored and tired (I have 2 small children, I'm always tired).  I've tried to up my fat intake a bit (more coconut oil, skimming homemade stock a little less), and even attempted a pseudo chicken "gravy"  (see recipe below) that has helped a little.  My weight has stabilized at 140; I lost about 10 pounds in the first 10 days on this new eating plan, yikes!  Great for my pants, but that can't be healthy!  Also, I've turned orange.

I'm orange! Too many carrots!

In an effort to fight the boredom, I've broken the rules about waiting 3 days between introducing new items on several occasions, especially since I've been trying to clear a window around times when I taper my Prednisone dosage.  Now, in addition to all kinds of meat/fish, homemade broth, and pureed carrots I am eating:

• meat (red meat, pork, poultry)
• fish
• well cooked carrots
• acorn squash
• butternut squash
• coconut oil
• thyme (fresh and ground)
• cinnamon
• ginger
• lemon
• honey
• "juice" from homemade sauerkraut (for some probiotics)

I added back in my vitamin, but I took it out again after being indecisive.  I also tried pears (it was so exciting!) but they made me super bloated and uncomfortable, and it took several days for things to calm down again, booooo.  

Next up is spinach, followed by homemade yogurt.  Then I'm thinking zucchini and garlic... I got a spiralizer for my birthday and want to use it to make some delicious pasta!  And maybe eggs are on the horizon (holding off on these until I'm a little less symptomatic)... when I can have eggs and yogurt and honey, there's a recipe for cheesecake!  And then there's butter... and bananas... banana "ice cream" anyone?

Coconut Oil "Frosting"

1. Using a metal spoon, scrape (you don't want chunks, but it won't work if it's melted liquid either) about a tablespoon of coconut oil from the jar
2. Add a little bit of honey and stir vigorously
3. Enhance with cinnamon, salt, ginger, or anything else available... but beware it may affect texture.  I tried adding a little bit of squash with mixed results (it's no substitute for peanut butter)
4. Enjoy tiny tastes with tiny spoon... it will last longer that way.  I use one of my baby's spoons!

SCD Intro diet appropriate "gravy"

1. Cook a chicken in your crockpot, seasoned with salt, pepper, and fresh thyme (6 to 8 hrs on low)
2. Ladle out most of the liquid and transfer to a small saucepan
3. Simmer until volume is reduced by half (intensifying flavor)
4. Use as watery gravy... it's been helpful for moisturizing chicken and adds some flavor... in later stages I've read it's good to use pureed onions as a thickener, but for now there aren't really any thickening options.  Maybe I'll try a tiny bit of squash... but then my gravy will taste like squash.