How an overpriced medicine and attempting to treat one problem can lead to another and a simple guide to how to handle chronic vomiting from a “professional patient”
Since seeing my newest GI at the motility clinic, the focus shifted to SIBO and SIFO or small intestinal bacterial and fungal overgrowth. Essentially when you have slow gut motility (like what happened to me) sometime food sits in the intestine without moving or the stomach and the bad bacteria, often from probiotics etc, creep up and out of where they are supposed to be, and start growing. My two colonies appear to be one of your “run of the mill overgrowth” and a lactose based one, likely due to my sole source of protein being dairy for over a year. The fungus, yeast, is probably what came first form who knows what, but these two suckers are just a given among Gastroparesis patients and often trifecta folks with GI issues. Typically you see bloating, belching, chronic diarrhea, malabsorption leading to malnutrition (bad bacteria taking all the nutrition) and some pain. In theory, fixing it improves quality of life but it doesn’t fix the cause.
The problem is treatment. Typically the first step is a low FODMAP diet, except thats unrealistic for both MCAS folks AND anyone with GP because you’re limited to a lot of specific fruit and veg or meat and those are HARD to digest. It also eliminates sugars, starch/gluten, most dairy, and even peas (which pea protein is often an alternative feed base than dairy or corn for GP people). And since SIBO in health people can come from eating too much garlic and onions or probiotic/fermented foods, realistically, they can change the diet and it work. Where it gets dicey is with wild cases like mine. When I overlap low histamine with the low FODMAP diet there’s literally nothing GP safe on there except potatoes, which are actually debated about…So we focus on getting whatever we can into me.
Part 2 of treatment is usually antibiotics with Xifaxin being the top option although it’s usually for IBS-D. By some miracle the manufacture approved my patient assistance appeal and let me get them for free instead of 2.5k for a since 2 week round. And we usually need 3-7 rounds of it. This medicine is a HORSE PILL and I can barely swallow. So, as per the manufacturer, we crush and mix in chocolate syrup and pudding. Its horrific. It’s stained everything oompah loompah orange yellow, it’s sticky, and it’s like licking dirt. But I’m getting it down. Somewhere in here I’ll add the videos and photos of me trying to crush it since it can only be done by hand.
But we hit a problem. This drug is supposed to be Non-systemic, meaning it doesn’t causes system wide absorption and should have less side effects. But as always with me, I have ALL the rare ones. Body aches, inability to sleep, exhaustion, nausea, vomiting, migraine, flu like symptoms. Everything listed as rare. And then we add diarrhea, which was okay except it was dehydrating me even more. Then the vomiting began. At night as usual but way more violent, no stopping it for 45 minutes, and we are shoving my IV phenergan into me as fast as we safely can to try and stop it. Then the crashes started. Heart rates dropping into the 70s and even 50s with a high Blood pressure in that 160/110 range. Turning pale and not being able to stay conscious or breath well. Unable to speak. The scary stuff. And the chest pain. It’s like my heart was banging around non stop and there are just no electrolytes left to keep me functioning.
We started shoving honey and oreos at me trying to force low blood sugar up. It works, but only short term. Gatorade comes back up, potato puffs don’t seem to leave my stomach, and no nutrition is getting anywhere. That make sense though. An antibiotic wipes out both good and and gut bacteria so very little get absorbed into my system from the very little I can eat and fro that what actually digests and stays down. All of this is pretty scary and I’m already on round 2 but we dropped to 2x a day instead of 3x a day because that 3rd dose was just being thrown up.
But There is more. There’s also an anti-fungal I was supposed to start, but something felt wrong. I checked drug on drug interactions and low and behold the medicine (and its 2 sister drugs) interact with my birth control, PPI, Phenergan (anti nausea meds), and a bunch of other stuff with a “rare” risk of something called Prolonged QT syndrome. The only alternative is a “maybe” for working is Nystatin which Iv;e tolerated before, but it may not be able to get where it needs to due to stomach acid. Despite being on a medicine for a decade that could have caused it, I never developed it. But now things are different. So I held off on that drug and we went to my cardiologist physically. I’ll finish that story later because it does come with some…news.
But back to this insane horse pill antibiotic. Its absolute chaos trying to shovel it in myself (if I could video how funny I look I would) and it’s a mess. I have to keep taking it but once again I seem to always fall into the “if its a rare or incident unknown reported side effect, I’ll get it”. Plus it’s more systemic because of my beta blockers which are a secondary drug that act as a sort of “gate opener” to allow this antibiotic into the blood stream. My beta blockers aren’t the worst offenders but they can cause it “mildly” and of course that means it shows up in me. Which makes the side effects worse. So now we’ve got me, exhausted from becoming totally nocturnal and not absorbing a lot of nutrition, my mom, who hasn’t slept in weeks properly from running down the stairs at 5 or 6 am to get the milk for my puking, and my dad, tired from being dragged up as well because mom needs sleep medicine every once in a while to get any sleep.
So what is my secret guide to sometimes stopping the vomiting before it gets out of hand and also avoiding ulcers? PUDDING and MILK. Okay so look. Calcium is good for the bones but it also coats everything. Any dairy like product actually will do the trick. I start with milk or almond milk to coat my throat and handle the acid that comes up. Yes it comes right back up but it keeps me from choking on food I chewed to death that re-clumped together or tries to come up and aspirate on me. Then its cold vanilla pudding (as a general note, I NEVER want to see pudding again once this all ends. It will be banned, If I have kids, there will be NO snack pack puddings in this house…or toast. Grandma or Grandpa can give them that). The cold and thickness of pudding helps coat more and catch any bits and keep them from going into the wrong pipe. Finally, we start the vanilla ice cream. Ice cream is so cold it imitates what the Phenergan does to my autonomic system in my throat by forcing it to tighten some and cool the burning heat in my stomach. Most of that doesn’t stay down but if we see the hellish spews slowing, we are going the right way. NO WATER. I avoid it because it just triggers everything to start up again, Thin liquids are a problem here and cause more issues than help. I only use a bunch of water if I have to flood my stomach because something is caught and it’s triggering me to constantly keep dry heaving or choke. The last test is toast. I try to get some down like a cork in a bottle. If it stays, it has started to end. If we hit the 30 min mark first, pushing 40-45 minutes, the phenergan comes out to try and force it to stop before the toast trial.
During all this disgusting adventure there is a LOT of buckets and bags involved, banging on the back, and fainting all over the place. My blood pressure is usually very high as is my heart rate but recently that heart rate has crashed lower when I faint and we have to shove things down me to help. Honey is a miracle drug period.
So There’s my guide. After 2.5 years of this I think I might be qualified to offer advice on it. Coat your throat and teeth to save them from the acid. Find a thicker liquid to help, water is useless. And don’t eat gluten free items if you think you might get sick…it just crumbles and goes towards the lungs…
THE PHOTO SAGA
Life On Fire 