Wednesday, February 17, 2016

A New Battle Begins

Flashback - a year ago today it became clear to the doctors that food was not being my friend. I was having a lot of problems with vomiting and nausea (and still am) and my weight had dropped back down to only 58lbs. I was so tiny, my mom would say that they wouldn't need an xray to tell if I broke a bone. My medical team decided that I needed to have an NG tube inserted through my nose and into my stomach to get all of my nutrition. For the 4 months that followed, I was only allowed clear fluids to go along with my NG feeding formula. I never thought that giving up food would be so hard, but after awhile you just want to eat something solid again, no matter how bad you know it's going to make you feel. I think it's just a natural part of our instinct to want to have solid food. But food and I have a difficult relationship.

I have certain foods that are often triggers for my anxiety, which doesn't help with my menu selections. Then when we factor in what the Inflammatory Bowel Disease doesn't let me eat (anything leafy, stringy, acidic, etc) my menu choices get even more limited. But part of the problem is also that I've been having so much nausea and vomiting that even the thought of eating turns me completely off most of the time.

So how did my weight become what the doctors are now calling a "medical emergency" for weighing too much? That's the million dollar question that everyone keeps asking. Last June, when I hit 80lbs after the first 4 months of formula feeding, we had asked the doctor about weight but were told not to worry, that everything would balance itself out. But my weight kept climbing. I was gaining on average 4kg a month, which is amazing when you factor in that I wasn't eating enough solid food to keep a bird alive. Up, up, up my weight went. I went from wearing a boy's size 8 to now wearing a men's size small/medium. Everything came to a climax last week when the doctors saw that I was weighing in at 125.5lbs, much too much for a child my age. And it's a complete mystery how I managed to gain this much weight. My mom and I have been strictly calorie counting for several weeks and on average I'm having 700 calories a day, most days less than that.

So the doctors are now running more endocrine function tests to see if there is a physical explanation as to what is going on, and in the meantime I am on a very strict calorie intake plan from the dietitian - I'm allowed 1900 calories a day. Whoa. Wait a minute! I'm only taking in 700 anyway... So I was left completely confused with a calorie limit that exceeds what I currently take in by almost 3 times.

My mom decided to go out and buy me a FitBit Charge HR to better track my calories going in and out, as well as my heart rate and sleep so that we could have accurate records to show the doctor. So far it tells me that to lose the 40bs, I should be eating about 2100 calories a day based upon my heart rate and activity levels. And I'm still coming in at the most 900 calories.

The challenge now is to develop a new relationship with food. I've been trying out different recipes, trying to expand my menu. So far I've learned that I love mango chicken curry, and would rather eat dirt than my mom's Kung Pao Chicken. I wish I had a video clip of my expression trying that dish that night, it would have for sure went viral. I'm sure that with my mom learning to cook, that there will be plenty more opportunities to create some hilarious "Jacob tries..." videos!

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