Post #2: The saga continues (biopsy results and updates)

Maleficent (my digestive system) continues to be a bit of a drama Queen, I was pushing for ‘no more Maleficent March’ but she’s resisting...as usual.

I had a little bit of hope after my endoscopy (3/1/21) two weeks ago. I finally have a gastroenterologist who seems to care and wants to get down to the bottom of everything. This is a big deal for me as I’ve been in limbo with gastroenterologists for almost 3 years. That hope is slowly kinda draining out of me. My throat and chest were pretty sore after my procedure (I figured this was pretty normal as they stretched my nissen fundoplication wrap, which is all the way down at the base of my esophagus where it meets the stomach), but that soreness hasn’t gotten any better...in fact, it seems to be getting worse.

I was having a pretty good day on Tuesday (3/9/21). My students were absolute rockstars in the morning, my lessons went well, the weather was warm...it just felt like a breath of fresh air. The window was open in the office I eat lunch in and that smell of Spring air combined with the cool breeze was invigorating. I barely got to enjoy that because as soon as I sat down to eat, I got a phone call from the doctor’s office. I personally feel that this should not be allowed, especially if it’s news that may be not so fun to hear. I honestly don’t remember much of what the person who called and said because I went into a haze almost immediately after he said he had my test results back, I could hear it in his voice...this wasn’t a fun phone call for him either. After that I heard bits and pieces of what he said, everything else sounded like Charlie Brown’s Teacher. The bits and pieces I did hear were: rare results, not seen a lot, diagnosis 😣 (I hate all of these words).

After I hung up with him, I immediately went to my online health portal and opened up the test results and summary of my biopsies. The tests done in my lower esophagus showed mild esophagitis (inflammation), the candidiasis is gone (FINALLY! ✌🏻 out thrush). The tests done in my upper esophagus came back showing something called lymphocytic esophagitis. I had never even heard of this before so I, of course, googled it...which sometimes I love having all of this information and research right at my fingertips and other times, I wish there was a way to ban me from googling. There wasn’t a lot of information on it, but the stuff I did read was just not anything I wanted to hear...not a lot of research on it and not a lot of solutions on how to fix it because they don’t know much about it.

Lunch was shot for me at this point. I started to have a small panic attack but I was able to get myself out of it because of that fresh Spring air blowing in the room. Deep breaths for the win. I barely ate anything - which sucks for me because if I don’t eat lunch, I’ll just starve the rest of the day as I can’t eat past early afternoon. I went through the rest of the day in this weird haze of “what does this mean?”. I called the doctor’s office and asked to talk with the doctor. Waiting for that call back felt like it took forever 😨.

The PA (physician’s assistant) called me back because as it turns out, my doctor had just gone on maternity leave the day before. The PA told me that when she saw my results, she called him and the pathologist to talk it out (that is some serious dedication right there ❤️). He explained that my biopsy results showed this lymphocytic esophagitis BUT - there isn’t a ton known about it. Normally they would possibly want to treat it with inhaled steroids because it is inflammation but I can’t take steroids because I’m prone to the candidiasis (thrush) in my esophagus. He said they would also treat it with PPIs (proton pump inhibitors) - which I’m already on, at the full dosage. He reiterated that my doctor didn’t want to nail me down to this diagnosis just yet. This result puts a little bit of pressure on getting me in for a manometry (swallow study) - a manometry measures the strength and muscle coordination of your esophagus as you swallow. They mentioned looking for achalasia - a rare disorder that causes the esophagus to be paralyzed. I had never even heard of achalasia until my best friend, Room (not her real name but that’s what I call her, she is my person) has achalasia. Our digestive systems like to one up each other - they’ve been doing it from the day we met. We were 100% meant to be in each other’s lives and I can’t explain how amazing it is to have someone by my side who really understands what I’m going through 💕 . For the time being, my doctor wants me to continue to manage symptoms with my PPI (acid reducing medicine) and famotidine (pepcid AC). We will know more about this after the manometry test is done.

In the midst of all of this, I was still not feeling well and it was/is getting BAD. My throat feels like it is closing. I can barely swallow, I feel like I am gulping each time I try. Eating and drinking hurts and requires so much effort to get it down that it’s creating tension in my jaw and neck - that tension is radiating and creating awful headaches. I also started to get bouts of coughing at night that are so horrible I have to keep a garbage can next to the bed because it’s making me feel like I constantly need to throw up. My chest is also still really sore. On Thursday (3/11/21), I reached out to the gastroenterologist’s office and explained to them what was going on. They didn’t seem to think this was caused by the endoscopy and suggested my primary care doctor check it out. At this point, I was willing to go see her. I’m willing to do anything. I’ve lost a few pounds in just a week because I can’t eat or drink much, my throat hurts so bad and it is so difficult to swallow that I was starting to feel claustrophobic. Add in the usual exhaustion, nausea, lower digestive system pain....I was just at my breaking point.

I saw my primary care doctor on Friday (3/12/21) and man...it just keeps getting better. She loves solving a good mystery and she was intrigued by the idea that maybe, just maybe, something wasn’t going on with my esophagus at all...maybe my throat was the problem 🤯. She also had a patient in the past who presented with my exact symptoms that got better after a round of antibiotics. I have to be very careful with antibiotics as they don’t mix well with gastroparesis, but she thoroughly explained my options to me and walked me through why she wanted to give it a try. She was also concerned that there is something going on in there that we can’t see (she did a strep test but she didn’t see any outward signs of it and didn’t think that’s what it was) so she is sending me to my ENT. She wants the ENT to perform a test that allows him to use a small camera inserted through my nose to see inside my throat. She was actually so concerned that she told me to be on call because she was going to try and get me in to do that on the same day. She also sent me for blood work to check my sedimentation rate (this checks for inflammation levels) and antistreptolysin (a strep infection antibody). The ENT was not able to get me in so now I will have to try and get to him sometime next week 😳😣 . In the meantime, she put me on antibiotics and cough syrup that will allow me to at least stop the coughing fits and allow my throat to rest at night.

And here I am again....waiting. I feel like all I do is wait. I had to cancel my SIBO (small intestinal bacterial overgrowth) test on Monday (3/22/21) because you can’t take that test if you have been on antibiotics in the last 30 days. So now I have to reschedule that (mind you, I’ve been waiting since LAST MARCH to do this test, but it kept getting cancelled because of covid. If that test comes back positive and I’ve had bacteria in my intestines (for over a year) that could’ve easily been treated with medicine...I’m going to go over the deep end. The good news though...the antibiotics took away the throat pain. I still have trouble with swallowing but I’m thankful for some small relief. It does bring about the question of “why did an antibiotic work? What infection do I have that it is treating?”.

**I wrote all of this earlier this week and was ready to post it, but then chose to wait for my ENT visit so that I could just keep the update rolling - this next paragraph is proof of how fast the rug can be ripped out from underneath me**

I was doing better as of this Monday (3/15/21) and Tuesday (minus the queasiness of taking an antibiotic). That changed drastically at about 3:00 AM on Wednesday (happy St. Patrick’s day to me ☘️🙄) - I was startled awake by a sudden bought of nausea...I was sweating but shivering and teeth chattering at the same time, my mouth started to water uncontrollably and I felt the distinct edge of a blackout coming on...I quickly got myself to the bathroom and just in the nick of time. My first round of throwing up started at about 3:15 AM and hit me every 15-40 minutes like clockwork. Thank god we have the flexibility to work from home on Wednesdays... I was able to set my computer up on the counter, make a cozy bed on the bathroom floor and still be part of our professional development all from the comfort of my new, spa-like bathroom (for all the people who were wondering why it was so important for me to do a major bathroom renovation this summer...this is why. I spend far too much time on the floor of the bathroom for me to not feel comfortable 🤷🏻‍♀️). These episodes lasted until about 11:30 AM. To make things even better...the ENT called me to ask if I had recently had a covid test - which I have not. They then told me that they couldn’t let me come in today for my visit because I need to have a covid test first, which no one told me when they called to schedule this appointment on Monday. And here I go again, waiting ⏱.

I will schedule a covid test and another appointment with the ENT for next week (hopefully) so they can go in and do this procedure that will check my throat. I want to get it over with so I can continue to check all of my boxes. Ruling this out of things that could possibly be causing these horrific and debilitating symptoms on top of my already incapacitating symptoms...yes, please ✅.

I feel like some weird walking medical mystery/disaster. Some type of medical unicorn. This is now my life. 🦄🙄