Hello, normalcy...are you there? It's me...Stefanie

So, I’m kind of starting in the middle of everything so try and bear with me. I am about a year and a half into my diagnosis of Gastroparesis (I was diagnosed officially on September 9th, 2019). I will skim some of the major subjects right now - but I will be circling back to each of them to shed some more light on everything!

Procedure #567 of my (I almost said “Gastroparesis life” but really it’s been my whole life...Mom said my stomach has bothered me from day 1. I was diagnosed with IBS at a very young age. I spent my whole life suffering from random stomach attacks, which eventually led to severe episodes of syncope (I just pass out - my blood pressure and heart rate drop suddenly and I just go down. I am good about catching them nowadays - minus a few scary falls here and there. It definitely freaks people out when I quick drop to the ground though...it’s kinda funny...after the fact. One of my best friends, Lauren Torsiello, was with me when I had my first ever syncope episode back in 2003...going down the cement stairs of the student union in Oswego...I was wearing my sorority letters that day too so the rumors of “OMG did you see the AepHi girl leave the union in an ambulance” were insane...thank god I went to college before facebook was cool or else I’m sure pictures of that would be posted all over the place HA🤣 ), which progressed into needing my gall bladder removed (on Christmas Eve of 2009 - this alone is depressing. My family celebrates Christmas on Christmas Eve so my FOMO was legit before FOMO was even a real thing), this is when things took a massive turn for the worse. I slowly developed GERD (gastrointestinal esophageal reflux disease) which became more severe each year until I just couldn’t function anymore (I also had a small hernia - my stomach was pushing up into my esophagus), which led to a massive surgery on December 20th of 2017 (it was called a nissen fundoplication - which get ready for this one...means they wrapped my stomach around my esophagus to completely restrict it...ouch...) that wasn’t done correctly and damaged my vagus nerve (which I didn’t find out until almost 3 years after my surgery...I suffered for 3 years, thinking it was all in my head). This led to an emergency laparoscopic surgery on March 29th, 2019 (my gynecologist actually did this, because she couldn’t take me coming to her one more time in agony, she wanted to rule out anything gynecological since I had pain all over my lower belly) and then finally...FINALLY... my amazing primary care doctor (who I will forever be thankful for) also couldn’t take me coming to her one more time in debilitating pain. She recognized some of my symptoms and she was the one who sent me for a gastric emptying study on August 29, 2019 (I ate radioactive eggs and a machine tracked them for almost 6 hours - I had to just sit in the hospital and hop under a crazy machine every hour to see where they were) and that led to a diagnosis of Gastroparesis and other severe motility issues. Sprinkle in there the countless endoscopies, colonoscopies, blood tests, hospital visits, MRIs, cat scans, x-rays, blood tests, barium swallows, breath tests etc. throughout my 37 years on this earth - so procedure #567 of my life. I’ve been poked and prodded in so many awful ways, it’s getting a bit ridiculous.

My symptoms have been in a massive flare since August of 2020. I was diagnosed with esophagitis on August 17th of 2020 (which is thrush, in your esophagus...it’s about as not fun as it sounds). Round 1 of medicine didn’t work, so I did round 2. Round 2 didn’t work so I had to do a more intense round 3. I was on medicine that was so crazy - I had to have blood drawn each week to check my liver 😳 these rounds of medicine were each a few weeks long and then we had to wait a few weeks in between to see if symptoms returned....which they did, with a vengeance, each time.

That last round of medicine seemed to work for about a few weeks (and a great few weeks at that, so thankful I was able to squeeze in a trip to see my baby bro and future SIL and enjoy the holiday season a bit 🙌🏻). Late December 2020, it all started to go downhill again. I’m over here getting hit with episodes so intense that I have esophageal migraines (that’s just my way of describing it) - I have to lock myself in the dark bathroom because any light/movement/sound makes me throw up/dry heave for not just hours - almost a full day. And that is nothing, sometimes my flares last for days (the longest recorded episode was almost 72 hours of puking/dry heaving every 20-30 minutes). I’ve had pain so intense - I don’t know how I even manage to shower some days 🤷🏻‍♀️ And while many of you have asked...yes, this timeline does directly line up with going back to work but...here is the difference: my body got VERY used to an hour lunch break. We were home from school for 9 whole months. Lunch is my largest meal of the day as I can’t eat past 3:00/4:00 at the latest, although I rarely eat anything past 2 (minus my ginger tea or my golden milk which is life changing and I will be sharing the recipe in the near future) in fear of retribution in the form of an all nighter on the bathroom floor. My body is going through the motions of getting back into the routine of not having that time to eat and digest a little - and yeah, she is really just THAT slow. We will catch up. So while yes, I was a little extra stressed around that time...that has diminished quite a bit since being back as I work with the most supportive and dedicated group of individuals I’ve ever met and they have made being back in school during a pandemic while simultaneously going through some major health issues feel not so bad 👏🏼So maybe stress plays a role but I personally believe my insides are just adjusting at their usual snails pace 🐌

A little over two weeks ago (February 12th, 2021) my new Gastroenterologist (this story could probably take up 45 blog posts) put me on a liquid diet to maybe “reset” everything as she believed I had some type of intestinal blockage going on (so yeah, my February break was spent sipping beef bouillon, pedialyte, and magnesium citrate...and not just a sip or two...3 whole bottles 😣). I had the most insane dreams/nightmares of delicious food that I can’t eat even when I’m not on a liquid diet...it was really just not fun on a whole new level. The “reset” also didn’t fix anything.

On Monday (3/1/2021) , I had an exploratory endoscopy - the doctor inserted a small camera down my throat and into my esophagus/stomach (I do not respond to light sedation and need to be put under anesthesia every time a procedure like this needs to be done). The doctor was checking to see if the esophagitis (thrush) was back, if my esophagus needs to be stretched (which sounds just as weird as it is😳), if I have another Schatski ring (another random esophageal malfunction), and if my Nissen fundoplication wrap (that’s the big surgery that messed everything up) may need to be stretched (which is also scary because stretching that could either go great or really, dreadfully badly). I won’t have answers immediately, but it is a step in the right direction...with a doctor who FINALLY (literally, years) cares and is eager to get down to the bottom of all of this. While I don’t have the biopsy results yet...we do know that the thrush isn’t visible anymore (biopsy will confirm this), I don’t have another schatski ring, and there don’t appear to be other signs of infection. They did have to stretch my wrap - so I feel like now I’m playing a waiting game to see how that will affect me.

I will also be getting a stitz marker test next week (basically I swallow a pill that has a bunch of tiny rings inside - the pill opens and I get an x-Ray every few days to see where the rings are in my digestive tract) - this will help to measure where my dysmotility is the worst.

Oh and - a SIBO breath test later in March (you starve for a day, then sit in the hospital for 4 hours - you blow into a bag every 30 minutes or so and it measures any small intestine bacterial overgrowth that you may have) 😩

And last...and very least favorite...I have to get a Manometry swallow study (again) the first one was hands down one of the most traumatizing experiences of my life and I swore I wouldn’t do it again if it wasn’t totally necessary. I’m not even going to tell you what the test entails because it is that awful and invasive. I felt violated after that and sometimes just thinking about it brings me right back to that state of mind. They had to strap me down to the table because I was panicking. Just...awful.

All of these things will hopefully culminate in an answer for my big, scary question: Is it just my stomach that was paralyzed or damaged during my surgery? Or did the damage to my vagus nerve make its way into my intestines or colon? **For those of you who are just catching up on my story...Gastroparesis means paralysis (paresis) of the stomach (gastro). My body can no longer process food in a normal or timely fashion. I can't eat fiber at all (no fruits and veggies...other than some very, super cooked and soft and mushy veggies), protein can be tricky (peanut butter murders me), and I have to be cautious with fats. Gastroparesis is a VERY individualized disease, so what works for one person with GP...may not work for another. This process has been trial and error....but mostly error...a lot of it. If I eat something not "safe" my body has no way to move it from my stomach to my intestines so it just sits there...and rots...until I throw it up. Eating safe foods mostly eliminates the throwing up but I am ALWAYS nauseous and in pain because even safe foods are difficult for my belly to push through to my intestines).

I’m just at the point where I need to gain somewhat of my life back. I go to work, come home, shower and can’t function. My energy is gone, I’m in extreme pain all the time, I get nauseous if I even look at a food on my “not safe” list...actually...I get nauseous even if I say the word "food" 🙄. And when I say nausea, I mean...think of how you feel when you have the stomach bug. That constant feeling of just queasiness that is so overwhelming you may possibly barf or pass out - whichever happens first....that’s basically my every day life. I’m so bloated, I can’t even move. I feel like Veruca Salt from Willy Wonka and the chocolate factory. I barely eat and when I do it is not very exciting (potatoes, rice, gluten free bread) . I never know when it is going to hit, how bad it will be or how long it will last. I know this may be a bit surprising, especially if you interact with me on a somewhat daily basis. I don’t look sick and I don’t act sick - but while those things are true....I am not doing so hot on the inside. I have been suffering with belly problems my whole life and I have learned how to disguise my discomfort. I also have a very high pain threshold, I am in pain constantly and what used to be severe has just become normal life. Nowadays - if I say it’s bad, if I cancel plans, if I can’t physically go to work - that means it is BAD. I will refrain from listing all the symptoms I experience when I’m in a flare (for now...because that deserves it’s own post). Just know that I’m going through quite a bit during those episodes - I don’t mean to be distant but sometimes I can’t even look at my phone let alone talk/walk/make rational decisions 🤦🏻‍♀️ (and know that if I have to call in to work, cancel plans, miss an event or trip I was looking forward to, not accept invites to dinner because I haven’t hit the point where I can enjoy myself at dinner while everyone is eating or drinking - and I can’t....Those moments are really hard for me. I don’t like to admit defeat (my Mom def raised me to be strong and independent but can’t fight those stubborn Italian genes that also transferred over to me 😂😂) I’m working on it though, so I appreciate those of you bearing with me 💚

Here’s the deal though, cuz all that 👆🏻was a lot of info and a lot of it was negative and we all know I don’t like to live in a negative headspace. It isn’t good for anyone. So here is my positive spin on it: I finally have a doctor who is determined to help me get to the bottom of what has been going on with me. I can’t change what happened during that surgery, and I firmly believe it’s important to not let things we can’t control, control us (although I know that it is a hard habit to break) so I do not want to harp on that. What’s done is done and I have begun to shape my life around this new diagnosis and what it means for me, my family, and my friends and the rest of my life. I have made baby steps (a bad flare doesn’t mean progress hasn’t been made, it just means that right now my digestive system (or as I like to call her ‘maleficent’ - because man she is a mean, horrible, conniving thing...but she’s also fierce and kinda badass 👊🏼) is REALLY pissed and she’s in dragon mode right now 🐉

Growth has been made, growth will continue to be made. Sometimes growing pains hurt. I’m young, I’ve got an insanely amazing support system and I will have Maleficent back to her normal evil self sometime in the hopefully very near future because come onnnnn...a girl needs to be ready for all of the exciting adventures that are ahead of me!

Stay tuned for more, hoping to have results by mid March 👀

My nephew, Connor, just recently sent me a get well video and he said “If you can dream it you can do it Aunt Room” - so I’m dreaming it, I’m letting the universe know that this nonsense is done and over with, I’m saying those prayers. No more Maleficent March here we gooooo 👏🏼👏🏼👏🏼

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#gastroparesis #gastroparesiswarrior #gastroparesisawareness #ivegotguts