I have some news! Finally, I have been granted a corner piece to my puzzle, an answer that brought with it many more questions. I went in for a gastric emptying study, where I was instructed to eat a scrambled egg sandwich that had radioactive tracers in it- quite the delicacy! Continuous and intermittent X-rays were taken to mark the progress of my digestion. In a normal individual, after four hours, the stomach should be empty or at most have 10% remaining. My study showed that after those four hours, I still had 51% of the meal stuck in my stomach. This means there was finally a test that quantitatively showed how much my GI tract has been malfunctioning. Based on the results, I was diagnosed (YES, diagnosed!!!) with Grade 4 Gastroparesis. Gastroparesis means paralysis of the stomach. And in my case, grade 4 is the most severe which is considered stomach failure. What this means, is that when I eat something, it becomes trapped within my stomach and the muscles at the bottom are clamped down too tightly to allow much to get through to my intestines. This causes a build up of stomach contents each time I eat something else throughout the day, which explains the retching, nausea, and abdominal swelling.
There is no cure for Gastroparesis. However, there are various medications and treatments. My doctors have already tried the majority of the standard-course-of-treatment-drugs for this diagnosis over the past year. Unfortunately, none of them helped or worked out for me. My case is considered medically resistant due to all of the efforts and the fact that I am reliant on TPN and IV hydration. Since this diagnosis is specialized and the medical community does not have a ton of research on it yet, I decided to seek out someone who focused on GP (Gastroparesis) in their career. I found an amazing specialist at AGH, and their office got me an immediate appointment for 2 days after I called. He had some ideas, shed some insight, and prescribed a couple more medications to help with symptom management. I finally started to feel listened to and understood. Having a diagnosis made me feel so much less crazy. Even if it was one without a cure..
Just as things were falling into place, I started to have the worst exacerbation of symptoms to date. Because of the uncooperative muscles in my stomach, when it was empty, an incredibly strong pressure gradient began pulling on my feeding tube from inside my stomach. I have had some issues with that in the past, although it was always a quick popping motion of my tube in the past (see blog entry #1). When they swapped out my GJ tube for just a G tube, things improved. Right up until 2 weeks ago. This pressure gradient that has been yanking on my tube, will suck it further into my stomach and hold onto it for up to an hour at a time. As you can imagine, this is quite painful. In fact, it has put so much strain on my abdominal muscles that sitting up is nearly impossible. All that internal disruption and trauma has caused significant abdominal swelling that has not gone away (it looks like I swallowed an entire watermelon). I have never been in this level of pain for 12 days straight before, and I am desperate for relief. Luckily, I came up with an idea after listening to the options my new specialist laid out.
There is a somewhat experimental procedure involving injections of Botox into the pylorus muscle (located at the base of the stomach separating it from the intestines). The injections have to be done from the inside and their intention is to relax that muscle and allow food to pass through more freely. I also believe that having that muscle relaxed should minimize or eliminate the pressure gradient that has been wreacking havoc on my stomach. My GI doctor at Children’s, the one who discovered my diagnosis, has agreed to preform this procedure on me. After being stuck in bed wearing fat pants for 2 weeks, I am finally going in for surgery tomorrow (Wednesday)!! The effects of the Botox only last about 3 months and it may take a little time to know if it worked for me. If it is determined to have been effective in my case, the next step would be to schedule a pyloroplasty. That is an invasive and irreversible abdominal surgery that aims at producing the permanent version of the Botox injections. The pylorus muscle would be surgically cut to allow more movement of food through the intestines. I can’t tell you how much I hope this will work and provide me some much needed relief tomorrow.
I have a diagnosis, but I still have quite a road ahead of me. As you may recall, my illness has both a GI and a neuro component (causing the memory loss and right sided weakness). The neurological side of things has proven to be elusive and baffling. Although I am still undergoing work ups and testing for that, there is a strong chance that it was initially caused by a virus- perhaps from my traveling in Puerto Rico or from my tick bite (both of which happened shortly before my symptoms began at the end of 2015). My GI symptoms initiated about 2 months after the neuro ones started. This makes sense now because one of the known causes of Gastroparesis is viral. At this point though, with the number of things we still don’t know for sure, the cause of my GP is considered idiopathic.
This memo was longer than I intended it to be, but I have a large support group that all deserves to know as much as I know about what I’m going through. I truly appreciate the love and positivity I continue to receive from all you beautiful people. I need positive vibes, good intentions, and/or prayers now more than ever.
“These mountains that you are carrying, you were only supposed to climb” -Najwa Zebian. I have proven to myself how strong I am, even when every part of me feels broken. And for the first time in months, I have actual hope for my future. I know I will be ready for whatever comes next. Namaste xox