As I mentioned before the past few months have been very busy for me and my family! We have finally completed our move to Ohio and I began graduate school this week for speech-language pathology! My service dog Reilly and I are still adjusting to not working full time and we desperately miss all of our coworkers and students back in Illinois, but I am excited for the new prospects that graduate school brings!
An exciting update medically for me is that I was able to get an appointment on 12/30 at the Cleveland Clinic in their gastroparesis clinic. I saw one of their specialists who is considered one of the top doctors in the country for gastroparesis. He will help us figure out what the best next step is to manage my gastroparesis and allow me to get more adequate nutrition. I mentioned in my last GI update that I had a couple of medications to try, but unfortunately the one we decided to try, erythromycin, did not work. I tried it for two weeks and it did absolutely nothing :( My husband and I both agreed that we are not comfortable trying a medication that can cause permanent neurological side effects (Reglan), so unfortunately those are the three "typical" medications used for gastroparesis and we must now work outside the box.
Dr. Clein from the Cleveland Clinic was absolutely phenomenal! It was completely worth the four hour drive each way to see him! He is incredibly kind and knowledgeable about gastroparesis. He agreed that he does not like to use Reglan because of the side effects and that we needed to find something else to try. He wants to further rule out various issues that could be causing my gastroparisis. They drew 10 vials of blood during that appointment (once again I am incredibly thankful for my port because it means I can have blood draws done without having to get an IV and since it is placed into a major artery blood is always flowing well, so they can take as much blood as they need easily!). All of that blood work was done in order to rule out autoimmune diseases. I have been tested for autoimmune diseases many times previously, but it is always good to be rechecked! Most of those results have come back and they seem to indicate that I do not have an autoimmune disease causing my gastroparesis.
Dr. Clein wants me to get a Smart Pill test done. This is a non-invasive test during which a small mechanical device in the shape of a pill is swallowed and passes through the digestive tract. It collects information on the time it takes to go through your GI tract, the PH of your GI tract, and the pressures in GI tract. All of this information is transmitted to a small monitor worn on your hip or around your neck. This test will confirm that the paresis (slow movement) is isolated to my stomach and not generalized throughout my intestines. As of now I am scheduled to have this test done on April 11, but I am hoping to get a sooner date that is closer to my home.
If this test comes back stating that the issue is isolated to my stomach then we will pursue a gastric stimulator. This device stimulates the stomach to contract and thus empty itself at a faster pace. This device works well for many patients, but not all and there is not always a known reason why. We are hoping that I will be a good candidate and have good success with the stimulator, but we will have to wait and see! In the mean time we are trying a couple of different medications to try to help my GI symptoms, but so far we have not had much luck.
I am still working on getting everything set up down here in Ohio, so hopefully I will be able to restart physical therapy soon and get in with a primary care physician to establish care. I do have an appointment on February 1 with a TMJ (temporomandibular joint dysfunction) expert who also specializes in EDS. I hope that he will have the knowledge and ability to help my jaw pain!
