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!