Friday, June 4, 2010

When you can't digest your food . . .

When most people think about cystic fibrosis, they think about the lung issues that generally characterize this disease, but CF affects so much more than that. We've been reminded of that fact this week as Peter has been struggling to digest his food. He's thrown up 3 times in the past few days (because he can't digest the built-up mucus in his tummy--our respiratory therapist said it's like having styrofoam in your stomach). Worst of all, his stools are pretty "CF"-ey: frequent, loose, extremely smelly, yellow-colored, and unformed. Plus, he's in pain when these symptoms occur. Peter's not digesting the food he's eating.

A key characteristic of Peter's ΔF508 mutation is pancreatic insufficiency. That means that the pancreas ducts which conduct enzymes to the intestine are blocked by CF mucus. Normally-transmitted enzymes allow the body to absorb the nutrients from food, but CF-affected pancreases lack this basic ability. That is the main reason why CFers have so much trouble gaining weight. On top of that, the pancreas still makes enzymes, and those trapped enzymes slowly eat away and scar the pancreas because they can't get out.

From what I've gathered from the CF nurse practioner, Peter is very pancreatic insufficient. Peter is on the maximum dose for his pancreatic enzyme replacements (also called "enzymes"). He also takes two kinds of acid reducers, a medicine to increase appetite, and a medicine to decrease vomiting and help move food from his stomach to his intestines more quickly. 

I called the "poop doctor"--the gastroentrologist--this morning and will see what she says needs to happen. I'm thinking Peter's going to have switch brands of pancreatic enzyme replacements. Either that, or we may have to add an additional medication to the combination we are already using. Please send good thoughts and prayers Peter's way. It's tough when you can't digest your food!

Over half of Peter's medication is to make up for his CF-related pancreatic insufficiency: 19-20 pills a day plus 3 oral solutions. He can't swallow pills yet, so we open the pills into applesauce so he can swallow the mini "beads" of medicine.

Thanks to "CF Mama" Kristina for posting this chart on her son's CF blog, Nathan's Fight. Source: Orenstein, David M., Cystic Fibrosis: A Guide for Patient and Family, 3rd Edition. New York: Lippincott Williams & Wilkins.

You might also be interested in reading about other CF families' enzyme brands/experiences on Bennett's blog or Breezy's blog.

1 comment:

  1. Hey! Thanks for the shout out! I was just reading your blog, thinking, "poor Peter. :( wow. this issue a big deal for us mommies. I don't think I really realized how difficult CF digestion issues were for our kids." Then, I saw the link you included to my blog! :) Thanks!



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