NOvember 2017 Update
In late October 2016, I started having severe abdominal pain. At first, I thought is was only a stomach virus or a gastroparesis flare up, but about a week after the symptoms started, I went from not eating to not even drinking water. That was the point at which my mom took me to Miller Children's Hospital Long Beach, as that was where my gastroenterologist was based. They gave me I.V. fluids for dehydration, and Dilaudid for my pain. My doctors thought that it was just a Gastroparesis flare up, but decided to run tests anyway to make sure nothing more serious was going on; they were all negative. Even on the Dilaudid I wasn't eating, and after a month into my hospital stay, they put in a nasojejunal feeding tube. Shortly after that, I was transferred to Cedars Sinai Hospital in Beverly Hills. They had a pain management team that helped me with my pain while the doctors there ran more tests. A few weeks later, they finally found something: Median Arcuate Ligament Syndrome (MALS), a condition in which a ligament is compressing the celiac artery causing blood to shoot out (similar to pinching a garden hose), causing severe abdominal pain. It is rare, but in a lot of cases it is associated with both POTS and Gastroparesis. A week later they performed a surgery to release the ligament, and at the same time placed a gastrojejunostomy feeding tube to make sure I had a long term nutritional plan.
After the surgery, my pain was gone but I was left with terrible nausea. I was accepted into the adult G.I. clinic at Cedar Sinai. They diagnosed me with Type 2 Ehlers Danlos Syndrome, a connective tissue disorder with symptoms of hypermobility and joint laxity (I'd had 3 knee dislocations from volleyball). They changed my Gastroparesis and POTS medication to Mestinon. I started to improve and was able to get enough calories from Boost Plus High Calorie Nutritional Shakes in combination with my tube feeds, that I could leave the hospital just in time for Christmas.
My nausea continued to get better for a while, but suddenly it started to get worse again. I continued to see the Cedar Sinai G.I. clinic, who adjusted my Mestinon dosage, removed my feeding tube, and gave me every nausea medication they could think of, but the nausea was still there. They tested for SIBO twice and both times the results were positive. I was treated with antibiotics and a moderate SIBO diet. The nausea was still there. I went back to the Mayo Clinic to see if they had any other ideas of how to help me. The repeat tilt table test for POTS came back positive, and another SIBO test came back positive. My POTS doctor thought that it was possible that I had hyperactive nerves that were sending false nausea signals to my brain, and that I would just get better by retraining my nerves by ignoring the nausea. If it were that easy, I would of done that in the first place.
I treated my SIBO with more antibiotics and a strict diet, and my last SIBO test I had in July came back negative. A few doctors thought I was a good candidate for Mast Cell Activation Syndrome (MCAS). I started a cocktail of MCAS medications, as most of them are benign and it is difficult to diagnose. The medications need time to take effect, so I am still dealing with the nausea, but my doctors think it should go away with this new plan. Everyone is hopeful that I will be better soon and get back to being my normal self.
If you want to learn more about my digestive disorders, I have a new website dedicated to information about them.
thisgutfeeling.org
After the surgery, my pain was gone but I was left with terrible nausea. I was accepted into the adult G.I. clinic at Cedar Sinai. They diagnosed me with Type 2 Ehlers Danlos Syndrome, a connective tissue disorder with symptoms of hypermobility and joint laxity (I'd had 3 knee dislocations from volleyball). They changed my Gastroparesis and POTS medication to Mestinon. I started to improve and was able to get enough calories from Boost Plus High Calorie Nutritional Shakes in combination with my tube feeds, that I could leave the hospital just in time for Christmas.
My nausea continued to get better for a while, but suddenly it started to get worse again. I continued to see the Cedar Sinai G.I. clinic, who adjusted my Mestinon dosage, removed my feeding tube, and gave me every nausea medication they could think of, but the nausea was still there. They tested for SIBO twice and both times the results were positive. I was treated with antibiotics and a moderate SIBO diet. The nausea was still there. I went back to the Mayo Clinic to see if they had any other ideas of how to help me. The repeat tilt table test for POTS came back positive, and another SIBO test came back positive. My POTS doctor thought that it was possible that I had hyperactive nerves that were sending false nausea signals to my brain, and that I would just get better by retraining my nerves by ignoring the nausea. If it were that easy, I would of done that in the first place.
I treated my SIBO with more antibiotics and a strict diet, and my last SIBO test I had in July came back negative. A few doctors thought I was a good candidate for Mast Cell Activation Syndrome (MCAS). I started a cocktail of MCAS medications, as most of them are benign and it is difficult to diagnose. The medications need time to take effect, so I am still dealing with the nausea, but my doctors think it should go away with this new plan. Everyone is hopeful that I will be better soon and get back to being my normal self.
If you want to learn more about my digestive disorders, I have a new website dedicated to information about them.
thisgutfeeling.org
