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.

My butt is broken

As I've mentioned before, I was diagnosed with Ulcerative Colitis a few years ago.  The lucky ones take a few pills and pop into remission for long periods of time.  I, however, have tried most of the treatments currently available and have yet to achieve remission.  Unfortunately, I've been sicker than ever since my 2nd baby arrived this past summer.

Having spoken with my doctor and declared the most recently tried treatment (Remicade) a failure last week, I decided to sieze the gap before we try the next one (Entyvio) to give the Specific Carbohydrate Diet (SCD) a chance.  This diet was developed a long time ago, but is popular today in several forms (GAPS) and has a lot in common with the Paleo Diet (and Paleo AIP).  The basic idea of the diet is to eliminate all bad starches and sugars from your diet, slowly changing the population of bacteria in your gut and allowing the lining of your intestine to heal by stopping exposure to irritants and by maximizing nutrition.  Everything needs to be homemade or from a carefully verified source, and it's a very overwhelming commitment - a lot of work!  And what about restaurants, or going on vacation?? (Note: I've been sick enough that vacation isn't an option, so that's not really a reason not to try it)

I've been interested in trying this medication-free approach to healing since I was first diagnosed 3 years ago, but was worried about the implications of the "Intro" phase on my pregnant and/or nursing body - how would I possibly get the required calories?  And would toxins released during the "die-off" of bad bacteria cross the placenta?  So I waited. I finally stopped providing nutrition to another human being this past September, but since I was trying out new drug therapies (Humira and then Remicade) I didn't want to add another factor to the mix so I postponed trying the diet.  If I had done the diet AND the drugs, how would I know which one had worked?  The drugs, when they work, are very long term and many people can't restart them once stopping (they develop an allergy), so I would have been stuck in an awkward situation with continuous nagging in the back of my mind saying, "Maybe you don't need this medicine..."  I figured it was better to keep the factors separate so that I could have a better idea of what contributed to any improvement in my condition.  But now I've run out of excuses, and patience!  Time to give the diet a chance, even if only for a week or two.

The Intro phase is basically homemade broth, lean plain meat, and pureed carrots for about 5 days.  After that, you can add in fats and cooked vegetables one at a time, then cooked fruits one at a time, before moving on to incorporating raw foods, homemade yogurt, natural cheeses, and nuts and seeds.  Some people eat yogurt and eggs from the very beginning, but if a sensitivity is suspected then it's best to wait.  The goal of the Intro diet is to kick start the "die-off" of bad bacteria and yeast, which unfortunately causes many people to feel sick for a day or two as the organisms fight for their lives, but once they're gone your gut can begin the slow process of healing.  After a year or two (the general recommendation is at least 2 years) one can start reintroducing other foods, such as chocolate, potatoes, and bread, to see how they are tolerated.  If all goes well, one can then eat "normally" again, though it is recommended that one not fall back into the typical "western" diet, since many think that leads to developing a "leaky gut" in the first place.

I finally took the plunge and started the Intro diet this past Saturday, December 27th.  I cried a lot the first day, I was so food frustrated!  Everyone around me was (and still is) eating leftover christmas cookies and ham, and I was eating a plain hamburger patty and a mug of chicken broth for breakfast, and again for lunch (I wasn't in my own house that day, so I was limited to the food I had brought with me in preparation).  Dinner was a little bit better (at least some variety) with some plain white fish and pureed carrots, with homemade grape juice jello for dessert.  Woo. Hoo.  Bleh.

I've had stove, oven, and crockpot running non-stop (luckily mostly hands off simmering-type things) since I returned home on Saturday, trying to add some variety to my choices.  I've made jello, chicken, turkey breast, lamb, fish, carrots, and turkey sausage, plus a few different broths/stocks.  It's a lot of meat... but at least it's variety.  And LOTS OF SALT AND PEPPER, otherwise I would lose my mind from the blandness!  I cheated (or did I? The instructions are a little vague) and added some thyme to the turkey sausage, but just a little.  Finally a breakfast-ish food!

These have been my meals so far, in case anyone out there searching the internet is looking for starter ideas:

Day 1
Breakfast:  Ground beef patty, mug of chicken stock, tears
Lunch: More of the same
Dinner: Flounder, pureed boiled carrots (ended up mixing together like a soup with lots of salt and pepper, tasted surprisingly good), grape juice jello (not so great), cup of 1/2 grape juice 1/2 water

Day 2
Breakfast:  Diluted grape juice, ground beef patty with grape jello as a sauce (strange, but I saw a suggestion for that at scdlifestyle.com)
Lunch: Leftover Flounder with pureed boiled carrots (my 2 year old stole this from me and loved it! How unexpected!  She wanted me to eat her rice and beans...)
Dinner:  Soup made out of chicken stock, pureed carrots, and crockpot roasted chicken breast

Day 3 (today)
Breakfast: Diluted grape juice, small bowl of pureed carrots, mug of chicken stock, turkey sausage
Lunch: Soup of lamb broth, shredded boiled lamb, pureed carrots

I'm hungry, but I'm so used to starving myself in preparation for trips out of the house that I'm kind of used to it.  I could eat much more than I have been, but ugh, i just don't want any of the available choices.  So far I don't feel like I'm experiencing any "die-off" symptoms, and my insides have definitely improved... though that's possibly from eating hardly anything.  I don't want anyone to be caught saying "TMI! TMI!" but I have been dealing with urgent bathroom trips an average of 10 times per day recently (as high as 25 earlier this fall!) and at all hours of the day and night, so yesterday's 4 which were all between 5 and 10 am was fantastic by comparison.  Today has been similar to yesterday so far.  If this continues I might be able to leave the house without anxiety in the near future!

My plan:
If I continue to feel ok, I may reintroduce my multivitamin tomorrow morning, and then calcium the next day.  After that I think the next thing I'll add is eggs - I've been avoiding eggs for a very long time now because of a suspected intolerance, but allergy testing had no reaction.  It'd be really nice to be able to have sausage and eggs for breakfast... and to determine whether I have an egg intolerance or not.  I'm supposed to start Entyvio sometime in the next couple of weeks, but that may depend on what kind of changes I'm experiencing in my symptoms due to the new diet.  I should also note that I've been on Prednisone and/or Prednisolone for over a year now, and am working determinedly to get off of it, tapering very slowly at 2.5 mg per week.  I did not taper this week while beginning the new diet, because I didn't want to go through withdrawal and die-off at the same time!  And again, I'm making an effort to isolate factors.

I'd kill for a cookie right about now.