In Fall 2016 I began to (gradually) experience nausea with every meal, which sometimes led to vomiting. I also experienced abdominal pain and cramping, bloating, and belching. I had no appetite. My primary care physician referred me to a local GI, who did a bunch of tests but came up without any clear answers. Over the next year I lost a lot of weight and we still did not have any answers so my primary referred me to the Mayo Clinic to be tested for Autoimmune GI Dysmotility. It was believed that I had a motility disorder and seeing as I present systemically with a lot of autoimmune issues, AGID seemed to fit. The Mayo Clinic is currently the only institution that offers the AGID panel.
In Fall of 2017 I traveled to the Mayo Clinic for 2 weeks of testing and evaluation. I had a number of tests including a gastric emptying studying, small bowel and colonic transit study, autoimmune GI lab panel, anorectal manometry, and autonomic testing.
After a year of searching we finally had answers. I was diagnosed with gastroparesis and delayed intestinal and colonic motility. Simply put, nearly every portion of my digestive tract was delayed. This led to a backup of contents in the stomach and explained all of my symptoms. While we have a diagnosis, we do not know the cause. With my history it is possible it is due to EDS, POTS and/or an autoimmune process. One of my autoimmune labs from the AGID panel at the Mayo Clinic did come back positive but it is not a specific marker, it simply indicates that there is "something" autoimmune happening in the body (we knew that before I went to the Mayo Clinic). So while we cannot definitively confirm that my motility issues are from an autoimmune process, we also can't rule it out either.
The digestive tract is like a plumbing system. Each part of the digestive tract has its own specific function in digestion. When everything works properly, food travels down the esophagus and into the stomach where it is broken down into small food particles suitable for the small intestine. Once in the small intestine, the muscles work to push the food through all 22 feet and into the large intestine (colon). The process continues until the nutrients have been absorbed and waste has been expelled from the body.
In gastroparesis there is a delay in stomach emptying. With delayed intestinal motility, the small intestine has a difficult time moving food through in a timely manner. And with delayed colonic transit, the colon also struggles to move things along. This leads to a backup and symptoms of nausea, vomiting, bloating, feeling of fullness after just a few bites, abdominal pain, belching, lack of appetite, weight loss and malnutrition.
It is not clear what leads to gastroparesis, though a lot of patients with EDS and/or POTS have delayed motility.
Treatment is also tricky. Some people are able to manage their symptoms with diet changes and/or medications that promote motility. Others may reach a point where a feeding tube is necessary in order to provide the body with adequate nutrition when they are unable to do so on their own.
I have tried a liquid gastroparesis-friendly diet and every medication available at this time. Unfortunately, we have not had much success. The next step would be a feeding tube when/if my team feels that is the best option. If we end up going the feeding tube route, I would have a GJ tube placed.
My next follow-up with GI is in mid-August. Hopefully I am able to maintain my weight in the meantime.
I have added a section on Gastroparesis at the top of the blog.
0 comments:
Post a Comment