The Gastrointestinal Side of Cystic Fibrosis

Sometimes my weight and gastrointestinal health can both be a little stubborn, or at least that’s what I like to think. Despite living with the g-tube my weight gain trends look a bit like a roller coaster.

It’s a point of stress for me.

There are times when I will go weeks without stepping on a scale out of fear of what it may say. Even though I know that my nutritional health is tied directly to my overall respiratory health, I’ve discovered that it’s something that I have been programmed to dread.

I think having been underweight for 20 years (until I had my g-tube placed) has created some sort of resentment towards overloading my calorie intake.

It’s kind of a weird sensation… to avoid something as small as a scale in my bathroom.

I try to overcome this issue by getting creative with my food intake.

Routine is good and bad in CF. It’s good in the sense that it helps us remain compliant with all our treatments, but it routine does get boring quickly.

For example, I am a big believer in staying productive during treatment time (as I wrote earlier this week). Productivity helps my treatment routine, at least, feel like it’s changing based on the tasks I am completing.

Nutritional intake, I’ve learned, is more difficult to keep fresh. Six nights out of the week I plug myself into the same overnight feed pump and formula and hope for the best.

Sometimes I poop it all out the next morning, other times I absorb it.

via GIPHY

The g-tube is necessary in my case because I’m one of those CF patients that has a hard time with his appetite. I think it’s because I’m such a big mucus producer. It makes me feel sick, so I do rely heavily on my g-tube to supplement my diet, especially when I’m CF sick and with daytime “bolus” feeds (meaning without my pump).

Feeling sick to my stomach and feeling CF sick are two totally different things.

Even the daytime bolus feeds can be a challenge to absorb because of our shitty pancreases in CF. It’s really not the pancreas’s fault. It doesn’t really have a chance to succeed.

This, however, is where I have discovered the chance to be creative.

I’m a big believer in what we call “the blendarized diet” in the g-tube world. I’ve spoken about my high calorie smoothie before, but I think looking at it objectively, it’s something that can always improve. My mom plays a big role in advising small changes to the smoothie, as does my nutritionist. The high calorie smoothie also mystifies other players in my support system, especially whenever they see me do it. Most recently my girlfriend has taken it upon herself to come up with a good recipe.

I think this kind of thing helps keep my nutritional war fresh.

Ultimately consistency in a high calorie diet is important, but I think it’s okay to change up where the calories are coming from…. At least that’s what helps me get back on the scale after a few weeks.

AS A BONUS – here’s the g-tube recipe my girlfriend has been working on perfecting. She calls it the “Quinoa Shake” – feedback appreciated.

Quinoa Shake

1 CUP QUINOA: 720 cals – 3g fat – 33g carbs – 3g sugar – 24g protein

1/2 CUP POWDERED GOAT MILK: 280 cals – 7g fat – 22g carbs – 22g sugar – 16g protein

4 TBS ALMOND BUTTER: 380 cals – 36g fat – 12g carbs – 2g sugar – 14g protein

2 CUPS BONE BROTH: 90 cals – 1g fat – 2g carbs – 18g protein 

1 TBS UDOS 3-6-9 OIL: 120 cals – 14g fat

TURMERIC – half teaspoon

CINNAMON – half teaspoon

GINGER – half teaspoon

TOTAL: 1590 cals – 61g fat – 69g carbs – 27g sugar – 72g protein