Saturday, October 6, 2012

My Adventures In Formula Changes

WARNING: LOTS of chemistry related terminology, which I will carefully explain. However, for some of you, none of this will be of any interest to you. Feel free to skip this one, as this post is targeted toward people on/caring for people on tube feeds and need further understanding as to why changes are necessary.

There are three classes of formula types. These are called polymeric (standard), peptide based, and free amino acid (FAA).

I have been on formulas in all three classes, and some I will go into more detail than others.

Formulas come in different calorie concentrations: 1calorie/mL, 1.2calories/mL, 1.5calories/mL, and 2calories/mL. There are many reasons for the differing caloric concentrations, and some include fluid restriction, shortened feeding schedules, and high calorie demands. Most all of the formulas I have been on were either 1.2 or 1.5 calories/mL due to the trouble I have with volume and maintaining a healthy weight. In fact, it wasn't until recently I could find a doctor that would even consider putting me on a 1 calorie/mL formula. We'll see what happens, but his theory is that my tolerance will improve and the volume issue won't be as significant as past clinicians feared.

So here is a rundown of all the formulas I have been on. Again, some I will go into greater detail than others.

Ready?

Standard Formulas
1.2 calories/mL

Nutren ProBalance this formula is no longer manufactured. This was a very high protein formula designed to bring my body back out of dangerously low albumin levels. This was the first formula I was ever put on. It had relatively low fiber levels so the hope was that I would tolerate it better. But that didn't so much happen

Jevity 1.2 this is a very high protein, high fiber formula. I was on it for a week, but due to the high fiber content became obstructed very quickly

Fibersource I have nothing good to say about this formula. It caused me nothing but problems.

1.5 calories/mL

Jevity 1.5 again, same song and dance as Jevity 1.2. This formula actually showed up on a CT scan as just sitting, totally solid, in my small bowel.

Nutren 1.5 I stayed on this formula for a long time, actually. It seemed to work for quite awhile, before my gut started rejecting whole proteins (as evidenced in frequent episodes of ketosis)

Isosource 1.5 when I got my G/J in September 2011, this is what the dietician at MU put me on. Again, I was on this formula less than a month before I ran into nothing but problems.

2 calories/mL

Nutren 2.0 I'd only ever been put on this formula via NJ tube during acute episodes during my anorexic years when extreme weight loss occurred. Since I was still digesting fine back then, I had little trouble with it.

Peptide Based Formulas

1.5 calories/mL

Vital 1.5 I HATE this product. It is a cross between a semi-elemental and a standard formula, since it still contains casein (which is NOT peptide based), and does not contain as much MCT (Medium Chain Triglycirides -- pre broken down fat source) as would be expected of a peptide based (or semi-elemental) product. While I was on it, I went bonkers. I was scared to death. I did not tolerate it much better than Isosource 1.5. In fact, I began to rapidly lose weight and my labs tanked. The GI docs at MU were going to start me on TPN (Total Parenteral Nutrition -- sugars, proteins, and fats delivered straight into the blood stream via central line) because they were out of ideas. But while inpatient, I was trialled on their equivalent brand. I eventually started getting this delivered to my home since I tolerated it so much better, and it was called...

Peptamen 1.5 initially I did very well on this formula. For a few months, I almost had a normal life and good quality to that life. It is TRULY semi-elemental (100% enzymatically hydrolyzed whey protein, a process that breaks long protein chains into shorter, easier to digest peptides) with 70% MCT oil. But then, a problem. My gut flora got wiped out from being so sick. And there wasn't a probiotic I could take safely. And my kidneys were showing signs of being stressed from the protein overload. My caloric requirements were so high, that the amount of protein found in this product was just too much for me. So I had to be put on a similar product that had prebiotics in the form of a tiny amount of fiber, with a lower protein content, so I was put on...

Peptamen Junior 1.5 and it seemed perfect at the time. But then excruciating pain prevented me from doing feeds. No one had a clue as to what was going on. But I started draining simply huge amounts of bile out of my G port. Again, my albumin tanked, as well as other nutritional labs. Everyone scratching their heads. But then it became clear: I was no longer absorbing anything resembling a food product. Peptamen Junior 1.5 has fish oil, is whey based (from milk), and has inulin and fructooligosaccharides in it (prebiotic fiber). What was supposed to be making my gut healthier was simply doing the opposite. So it was time to move on. I got new doctors with fresh perspectives on my case. So the following formula was suggested to me, the on I am currently on.

Free Amino Acid Based Formula

1 calorie/mL

Vivonex RTF this is the last ditch effort formula. This is a totally elemental formula (meaning everything is in its most broken down form -- maltodextrin, next to no fat, and protein in the form of free amino acids. This is also known as an "elemental" formula). Basically, this formula hits your gut, then is distributed to the bloodstream with very, very little digestion required. Like TPN for your gut. So far I am handling it like a champ. Next to no pain besides my baseline pain, I can run it faster so volume issues are not an issue, labs already looking better -- especially the albumin, which is huge. We all believe this will be the final formula change. Because if this doesn't work, we will be looking at TPN. I don't believe it will come to that. The major drawback? It smells HORRIBLE! And the smell permeates everything. But it helps me feel better, so it's an even trade off.

Well, that's everything. Surgery Monday. Wish me luck!

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