Monday, September 24, 2012

Elementary, Watson

Literally. The new formula I will be on is called an "elemental" formula. The last one, Peptamen Junior 1.5 was "semi-elemental" meaning that proteins were broken down into peptides, which is a fancy way of saying that it's partially predigested for you.


This new stuff, Vivonex RTF, is fully elemental. The proteins are broken down into free amino acids, requiring next to no digestive functionality to absorb the nutrients. It is fully predigested. And it smells like it. I hate how the smell even permeates through the feeding bag. But I love that it makes me feel better. So far I am still using donated sample cases, awaiting insurance approval. Same for the rest of my enteral supplies (doc didn't send yearly paperwork in on time).

I have my pre op appointment with my new surgeon next Wednesday for separate G and J tube placements. I've done all the homework. I've sent emails regarding how I want the tube placed (a GA please, none of this crazy twilight sedation stuff), what size AMT Mini ONE Capsule Non Balloon buttons to order for both tracts (18FR, 2.4cm), even the PDF I happened to have found on how to place this type of button in a brand new tract. That every year when I go to get the buttons replaced (or if I lose weight and need resizing due to leakage issues), that I want to be put under twilight sedation because there is no need to be in pain. I have heard the process can be traumatic. I've had enough of that. I am educated enough to know what is reasonable to ask for. Hopefully this surgeon agrees.

But as I've been doing my research and anxiously awaiting my supplies to be covered, I've been walloped upside the head with a huge dose of reality. It happens from time to time. I'm going about my normal, setting up feeds, priming bags, tossing out formula boxes, cleaning syringes, dealing with a pump alarm, blah, blah, blah and WHAM! it hits me. I am getting separate G and J tubes. I cannot digest food any longer. No matter what type of modifications are made, no matter who yells and accuses me of blowing the situation out of proportion, no matter what supplement or drug I take, this fact remains: I cannot take food items into my stomach. Food sits, rots, curdles in my stomach and eventually makes its way back upward. Intact or partially rotten. Or in rock like formations (bezoars), and when that occurs blood is involved.

There's nothing I can do to make that fact change. I've tried all the drugs. I've tried health store enzymes, prescription enzymes (Creon), probiotics, Reglan, EES, both together, soft foods, no fiber, no fat, gluten free, vegan, high protein, liquids only, and none of it works. If it is not a clear liquid, it will make me sick. And if I am having worse than usual motility, I can't even drink clear liquids and my stomach has to be drained all the time (reason for the G tube).

I had this vision of eating only things like Greek yogurt, eggs, small amounts of almond butter, skinless chicken, sweet potatoes, V8 juice, gluten free breads and grains...pipe dream. I like these foods. They are "gastroparesis friendly" foods. They help some people. And with a "positive attitude" and "active lifestyle", might I achieve my goals? After all IF YOU DO THE WORK YOU SHOULD EARN YOUR KEEP. YOU'RE ONLY AS SICK AS YOU ALLOW YOURSELF TO BE.

And other things I have been taught. Or read in Facebook. Because, as you know, all disabled people are draining the government's resources .

I get frustrated by my limitations. I want to at least be well enough to eat. I hate tube feedings! This afternoon my MIC-KEY button extension med port popped open and leaked formula all over my last pair of clean jeans. And elemental formula smells horrible! It gets nerve wracking being at the mercy of Medicaid and even worse, the people who insist it needs to be cut further and further until there is nothing left. I hate the sarcastic pharmacist at my DME that says "well the requests may not come in as quickly as you like..."

I'm being tested now. When this trial is over I will be stronger. I will deal with situations such as this with grace. And one day when I am working in my profession, limitations in tow, I will be encouraging others on how they can do the same.

But tonight, I am spent, lonely, and angry. I want out. I want a do over, hit the restart button. I want the magic combination of supplements so I can eat. After all these years of eating disorder, I just want to eat. I want the people at Research who told me that I was overly anxious and all the other myriad of horrible things they told me..I want them to be right! I want to be in the driver's seat! I want that control back!

But I am in the driver's seat, regardless. I emailed that surgeon. I did my research. I know my goals. I know my dreams, what is reasonable and what is not.

Still. It can be a lot to handle. It can be a lot to overcome. But I'm getting there.

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