Still Miles to Go

Goodness! I seem to have neglected to update recently. My apologies for the delays. I’ve got some great Autumn goodies to share but I want to get the “ugly” stuff out of the way first. So stay tuned for the fun stuff.

On the 29th, I went in for my Antro-duodenal Motility Study. That’s the ugly and technical words for “test to see how well the muscles in my stomach and the entry to my small intestine work.”

First, I’ll say that my GI doc rocks. He’s thorough and comforting. Also, he’s a pediatric doc so I get all the rooms with pretty murals on the walls. Awesome.

We went in pretty apprehensive. This test usually involves general anesthesia – and they make few exceptions. Although the anesthesia is only for 15 minutes, I just don’t react well with anesthesia. At all. The last three times I’ve been under, I’ve stopped breathing. The most recent time required epinephrine (a drug to help you breathe).

But these doctors were amazing, to say the least. The anesthesiologist spent a good 45 minutes with me planning something that would allow them to complete what they needed to while keeping me stable. General was out – even Propofol (what they usually use) because I had what they think was anaphylaxis after using it. The anesthesiologist decided that the answer was ketamine. Yes, the horse tranquilizer also known recreationally as “Special K”, “K”, “Ket”, “K2” and “Vitamin K”. Anyone who knows me knows that I’m incredibly straight-laced. Your classic “goody-goody.” I’ve never even had a sip of alcohol (literally), let alone pot or any other recreational drug. That said, I was incredibly excited to see what the “big deal” was with these drugs. It did not disappoint. Wow!

I’ll add a little disclaimer here: I do not endorse nor encourage anyone to try it themselves. I’d never partake in this kind of risky medication if not under the care of a medical team.

So, that said, what was it like? It was bizarre. I was conscious and remember all of the 15-20 minute procedure. There was some discomfort, but I really didn’t care. I had once described a tonic-clonic seizure to a friend as “coming and going from Wonderland.” But let me tell you: I had never been to a Wonderland like this before. It literally looked as if the OR, the doctors, nurses, and tools had come from Tim Burton’s recent Alice in Wonderland. That’s pretty much the best way I can describe it. Oh, and I recovered beautifully (a first!), even getting in a 2-hour nap in recovery before they carted me off to the GI clinic.

With the excitement of the procedure over, the rest of the procedure was uncomfortable and dull. I had a tube that ran through my nostril, down my through, though my esophagus, through my stomach and into my duodenum (the first part of my small intestine). Sensors were placed to check the function of my stomach and small intestine. I knew the tube would be larger than an NG tube – which I’ve had – but I wasn’t expecting something to this magnitude. Luckily, my good friend Stefani came to keep me company. We spent most of the long 6 hours working on stuff for her upcoming album.

A few hours into the test, I “got to eat.” And eat. And eat. They required 1500 calories and 30 grams of fat. In 15 minutes. Yikes. I can hardly eat meals with 300 calories and most of those are liquid. But I triumphed! I got just over half of the food down with the help of some good anti-nausea meds. My reflux wasn’t happy, but it never is.

The end of the study brought both good and bad news with it. The good news? My small intestine functions. Maybe not optimally, but it does. My stomach? Uh, not so good. The study confirmed that my stomach muscles are failing. It’s the reason why my food goes through my system unprocessed. It’s the reason my reflux is so severe. It’s the reason I spend most of my time distended, looking 6 months pregnant (I’m not!) despite multiple laxative drugs. It’s the reason I’m never hungry, I vomit easily, and I rely on liquids.

Unfortunately, there’s no cure. The only drugs that he would have offered have either been tried (with resulting severe cardiac issues) or are on my allergies list. He says that the risk of anaphylaxis or heart failure are too serious to use either. So his solution: Botox.

You may know or not that I have used Botox before to help with abnormal posturing and dystonia about 4-5 years ago. Because I have experience with it, I know that it is not a cure. It is a temporary treatment that must be repeated every 6-12 weeks to provide relief. It involves a routine upper GI series (or endoscopy) and an injection directly into the stomach muscles.

At this point, we’re just praying that it works. If it doesn’t, we encounter more invasive options. I’m glad we got more answers (and had my gastroparesis quantified medically), but I’m apprehensive about the future. You may recall my post from gastroparesis awareness week. If not, take a look. TPN and gj-tubes are two of the next possibilities. The are possibilities that can limit lives. But – more importantly – they are possibilities that save lives. For now, I’m not going to worry about the what-if’s and concentrate more on the what-can’s to enhance my life in the present.

Now that that’s over, stay tuned for the upcoming Autumn Fun that we’ve been having the past few weeks.