09/27/2026
Gastroenterologist UPDATES!
Dr. Amol Sharma at MUSC is worth the wait!! It took 8 months, and it will be 6 months before I see him again (he is VERY busy with EDS patients!)
He is amazing. Thorough, kind, explains everything well, listens, not in a hurry, and VERY knowledgeable about EDS and it's comorbidities...all the things we wish for in a specialist! His PA was fabulous as well, very sweet lady. If you go, be prepared for a re**al exam that day
He has ordered a bunch of tests, and will give me the results and be in touch with any treatments I can start, before the 6 month followup. He and Julie Z. (my P*P at the EDS clinic) both suspect I could have gastroparesis and viceroptosis:
-------------------
1. Gastroparesis (The "Paralyzed" Stomach)
What it is: Literally translating to "stomach paralysis," gastroparesis happens when your stomach muscles slow down or stop working entirely. Instead of crushing food and moving it into your intestines, food sits in your stomach for hours or even days.
The Cause: It is usually triggered by damage to the vagus nerve, which controls your digestive track. Common culprits include diabetes, abdominal surgery, severe viral infections, or connective tissue disorders.
What it feels like: Persistent nausea, vomiting (sometimes of undigested food from hours ago), intense bloating, acid reflux, upper belly pain, and early satiety—feeling stuffed after just a couple of bites.
2. Visceroptosis (Sinking Organs)
What it is: Also known as organ prolapse or "sinking organs," visceroptosis occurs when the ligaments and connective tissues meant to hold your internal organs in place become too weak or stretchy. As a result, your stomach, intestines, or other organs sag downward into the pelvic area due to gravity.
The Cause: It is frequently linked to severe core muscle weakness or global tissue laxity from conditions like Ehlers-Danlos Syndrome.
What it feels like: A heavy, dragging sensation in the belly, severe bloating, worsening pain or nausea after standing up for long periods, and profound chronic constipation because the structural shift makes it physically harder for waste to move through the intestines.
-----------------------
TEST #1--Atmos Gas Capsule
Imagine a "smart pill" that tracks your gut health from the inside out! A swallowable gadget that measures gas and movement in real time as it travels through the digestive system.
You swallow a small capsule (the size of a vitamin) at the doctor's office & wear a small receiver belt and go about your daily life—no hospital stay required.
It measures gases (like hydrogen and oxygen) and transit times to pinpoint exactly where digestion is lagging.
The capsule passes naturally and is flushed away. It helps doctors diagnose common gut issues like gastroparesis and severe constipation without any invasive scopes, radiation, or sedation.
--------------
TEST #2 -- Dynamic SBFT
A dynamic small bowel follow-through test uses continuous X-ray video and a barium contrast liquid to record digestion in real time. The procedure tracks the liquid's movement over one to four hours to help doctors identify blockages, inflammation, or abnormal transit times. Pending results, may need gastric emptying scintigraphy.
-----------------
TEST #3 -- Anore**al manometry
Pooping requires a highly coordinated dance between your nerves and muscles. When stool enters your re**um, your brain needs to feel it, and your a**l muscles (sphincter) need to stay shut until you are ready. When you sit on the toilet, those same muscles must completely relax to let the stool pass. If these muscles are too tight, too weak, or uncoordinated, you experience bowel issues. This test pinpoints exactly where the communication breakdown is happening.
What happens during the test?
No Sedation Needed: You are completely awake, alert, and able to talk to your nurse or tech. There are no needles or anesthesia.
The Catheter: While lying comfortably on your side, a nurse will gently insert a very thin, flexible tube (thinner than a pinky finger) into the re**um. This tube is lined with high-tech pressure sensors and has a tiny, uninflated balloon on the tip.
The "Maneuvers": The nurse will ask you to do a few simple things—like squeezing (as if trying to hold in gas), pushing (as if trying to p**p), and coughing. The sensors record how hard your muscles contract or relax during each task.
The Balloon Check: The nurse will briefly inflate the tiny balloon with a tiny bit of air or warm water. This simulates what it feels like when stool enters your re**um. They will ask you to report the exact moment you start to feel the "urge to go" to measure your nerve sensitivity
----------------------
TEST #4 -- EGD (upper endoscopy)
Schatzki’s Stretch: I have a Schatzki’s ring, which is just a tight, narrow band of tissue at the bottom of the esophagus that can make swallowing difficult or cause food to feel stuck. They will gently stretch it out (dilate it) to make swallowing much easier
SIBO Testing: They will also take a small sample of fluid from my upper small intestine (a duodenal aspirate). This will go to the lab to test for SIBO (Small Intestinal Bacterial Overgrowth) to see if an imbalance of bacteria is causing my gut symptoms.
---------------
For NOW:
-prescribed Linzess 145mcg to help with constipation
-referred to pelvic floor PT (again, but with EDS specialist this time), with biofeedback
---------------
While I am NOT looking forward to all this testing, and the many trips to Charleston coming up (I have other specialist appointments too)... I am so thankful to finally be seen by doctors who KNOW about and have actually TREATED EDS patients. What a relief!
