Gastrointestinal Tract Relapse

Swallowing has, unfortunately, only gotten more difficult since I started experiencing dysphagia again. At first, swallowing solids was accompanies by a slow, full feeling in my chest. Almost like I took too big a bite every time I ate. It honestly could be quite painful. After a few weeks, that feeling turned into a chocking, stuck sensation. Solid food began not going down and regurgitating back up. Eventually I was forced to move to liquids only. However, as of two or so weeks ago, even liquids began to cause a choking, stuck sensation. The only way I could comfortably drink my nutrition was at about 12oz an hour. Weight started dropping off my body quickly. I lost almost 15 pounds in less than three weeks, leaving me malnourished and exhausted. The truth is, I have been struggling for longer than I have let on. Denial is real. So real...

My doctors all scrambled to run the proper tests and get me in their office as quickly as possible due to the fast and progressive nature of my GI distress. The first scheduled test was an Esophagram. This test is performed by drinking barium while taking a x-ray of the esophagus to asses motility. The esophagus is a tube made of smooth muscle which moves food from your mouth to your stomach. It should work in one cohesive movement to quickly and efficiently move a bolus down into the next organ. The transit of barium from the mouth to the stomach, in a normal patient, should take around 10 seconds. We began my assessment with the thinnest barium. Unfortunately, we didn't get any further than that. My esophagus was completely devoid of the waves to move a bolus through. The swallowed barium, a few fluid ounces, all convened in my esophagus, backing up almost the entire length of the organ. While gravity should typically move a bolus, even in an organ mostly devoid of peristalsis, mine simply didn't. (For a video please visit my Instagram) My physicians and the radiologist assured me my LES was wide open and I didn't have a blockage or stricture. It just simply... stops. A process that should be almost instantaneous took many minutes - after it eventually passed, it still left a trail of barium upon a final check in nearly 8 plus minutes later. The test had to be prematurely finished as I ended up regurgitating most of the barium onto the test table due to an overflow of fluid. Typically, patients are required to drink one to two 12oz cans, plus attempt a few other barium consistencies. However, I never made it past a few ounces of the thinnest liquid - and the barium that eventually passed filled up my entire stomach after a few swallows. The exact words in the final impress were, "severe esophageal dysmotility with absence of primary, secondary and tertiary waves. There is marked distention throughout the esophagus. Exam was terminated prematurely as patient experienced vomiting. Unable to ingest normal volume of contrast."

Unfortunately, this confirms that my dysmotility is absolutely back... with a vengeance. To make a long story short, after further evaluation by my Digestive Disease Specialist, my gastric emptying study was quite delayed (Gastroparesis) as well as my small bowel transit time. So, not only is the esophagus not functioning, but the stomach and bowels too. While they may not be as severely inhibited as the esophagus, they are inhibited enough that I am not digesting or absorbing nutrients - even simple nutrients like meal replacement shakes. The protein drinks I am forcing down my throat currently feel like bricks in my stomach. They sit for hours causing nausea, fullness, and discomfort. I can stomach maybe 1- 2 a day, leaving my body clinging to nothing but 500 or so calories of sustenance - calories I am not even absorbing correctly.

I was also referred for an emergency Upper Endoscopy to look for anything the other the external tests could have missed. Everything looked normal, well, normal for me. Again, they found no strictures or blockages - so no esophageal dilation.  I did still have stomach contents that never emptied from who knows when though. Unfortunately, this caused aspiration during the procedure. Luckily they, "got it under control quickly," or at least thats what they told my Dad. I awoke with a horrible wet cough, sill using an oxygen mask, needing to be monitored for hours longer than expected.
I require General Anesthesia when undergoing invasive procedures. I. Hate This. It is dangerous and seems so unnecessary to me, but but my team simply won't use twilight because it never sedates me enough. They told me I, "get too combative due to my Visceral Hypersensitivity." Urg. Any form of aspiration can be extremely dangerous - luckily they went into it prepared as my GI warned them about my completely useless LES. I am extremely lucky to have a team so familiar with my case. I am praying that this doesn't turn into aspiration pneumonia - I have been prescribed antibiotics to hopefully hold that possibility off. That is literally one of my biggest nightmares. As you know, I lost three dear friends to aspiration pneumonia because of Scleroderma. I love you Ashley, Alyssa, and Shelby. You have never, ever left my daily thoughts. I miss you all every single day.

They decided to place a NJ tube during the procedure. I wont lie, I broke down when I saw it. I honestly tried to rip it out while still high from the GA. I am devastated. This "nose hose" is a temporary solution for desperately needed nutrition until we can surgically place a G/J tube to bypass not only by esophagus but my stomach and a portion of my small bowel. We will be utilizing a peptide formula with hydrolyzed protein for ease of digestion. I honestly cannot wrap my head around this right now. I worked so hard. I fought so hard. Only to be back... I might need some time to process this outside of social media. Surgery will happen as soon as they can get a IR and Anesthesia team to coordinate - I have been told likely next week.

Due to this rapid and aggressive decline we will be testing my other organs this month, such as the lungs, to see if this relapse is localized to the GI tract or more widespread.