I was struggling to figure out what to write today and then I realized I never updated y'all on my trip to Mayo Clinic. If you have not read my previous blogs or followed my journey on Instagram, here is a quick recap of what has happened so far this year:
In January I experienced 4 days of not being able to hold and foods or liquids down. I was admitted to the hospital until I could hold food and water down, but had no answers. After that, I continued to have nausea and vomiting for multiple days just about every other week. Then in March, I started fainting. The vomiting was still going on, so my GI referred me to Mayo Clinic to further investigate what was going on. In June I went to Mayo Clinic Jacksonville to run a bunch of tests and lab work including a gastric emptying study, new scopes, celiac panel, etc. Finally, in July I was diagnosed by cardiology with POTS and Vasovagal Syncope.
That's the catch up and until last week I had no more answers and was still having 2-3 days a week of vomiting episodes. Last week I had a telehealth appointment with my GI at Mayo clinic to go over all the test results in June. During our discussion she said we are closing the chapter on Crohn's Disease. She believes it was either a misdiagnosis or I did everything right to get rid of it. (I'm going with I did everything to kick it's but because it makes me feel better for the past 4 years lol). This was AMAZING news, however it was bittersweet because the diagnosis I got felt a little worse.
After reviewing my entire medical history, my Mayo Clinic GI diagnosed me with Cyclic Vomiting Syndrome, abdominal migraines, and Dysautonomia. She started me on a low dose migraine medicine and told me that it may or may not help. These diagnoses just have to do with how my body is wired. I started the medicine a week ago as of today and it is kicking my butt. I take it at night because it has a drowsiness side effect, but I find I am still exhausted in the morning and have been taking huge naps during the day. We are hoping the side effects go away with time, but we are seeing if the medicine helps reduce the episodes over the next two months.
I'm hopeful for this treatment. I'm happy we are closing the chapter on Crohn's Disease. However, I am scared that this is also not treatable and this will be my life from here on out.... I'll keep you posted.