Once the pain in my lower stomach subsided a bit and I was slightly more comfortable, the hospital stay went smoothly. The physicians and nurses on my case were engaged in my care and seem to educate themselves on EDS and visceral hyperalgesia. They agreed my extreme pain was an indicator of severe hyperalgesia, both internal and external. Unfortunately, the ruptured cyst flared my visceral hyperalgesia so I was not able to run my GJ feeds for six days. Since I received no nutrition during this time, I was given 2.5 liters of dextrose water per day to regulate my sugar and hydration.
A compassionate anesthesiologist who consulted on my case proposed a lidocaine drip to help make me more comfortable. However, about five minutes into the drip, my heart rate dropped into the 40s, and my blood pressure lowered to an alarming number, so this therapy was stopped pretty quickly. Although I wasn’t able to press forward, I am grateful that I was at least given the opportunity to try it.
Surprisingly, the majority of medical professionals seem uncomfortable operating or discussing GJ tube questions and issues. A pediatric resident was assigned to my case, as she was familiar with gastric tubes in children. When the bile was escaping out of the stoma onto my stomach, the rest of the team seemed a bit flustered as to how best to approach this, but she calmly inflated the balloon inside me to block air or bile from entering or exiting. The lack of awareness and education among health care professionals about surgical feeding tubes is a bit shocking. Nevertheless, I prefer when the health care professionals are upfront when they are not sure about something.
On day five, the team performed an upper endoscopy to take biopsies of my stomach and esophagus to assess mast cell activation. The mission was to see if there was evidence of mast cell clusters, as this would be suggestive of chronically activated mast cells. Amongst other things, there was a co-stain of CD117 and CD25 taken. While the camera was inside, the doctor noticed damaged and atrophic villi, likely due to my celiac disease. Villi are these tiny, fingerlike tubules that line your small intestine. The villi’s job is to get food nutrients to the blood through the walls of your small intestine. If the villi are destroyed, it can cause one to be malnourished, no matter how much is eaten because it impacts the ability to absorb nutrients.
Since my new low-profile mickey button tube was not draining/venting properly, the best option was to switch it back to the previous, more bulky, dangler GJ tube. The GI doctor performed the endoscopy and the GJ switch-out at the same time while I was sedated with that magical med Propofol.
The day after the procedure, I was able to start Dupixient, a monoclonal antibody that blocks interleukin 4 and interleukin 13. This medication is FDA indicated for asthma and eczema, but there is data that suggests it treats secondary mast cell activation syndrome (MCAS). My immunologist/allergist suspects that mast cell activation syndrome is exacerbating my symptoms and causing unexplained reactions. For example, when water hits my skin I become itchy and break out in a red blotchy rash wherever the water touches. My system has become so finicky and sensitive. It’s incredibly annoying and high maintenance. In the last couple of months, it seems I am now having allergic reactions to almost everything, even the materials in my clothes. Dupixient is a more aggressive treatment for MCAS than the mast cell stabilizer cromolyn and the many antihistamines (H1 and H2 blockers) I have been taking the past few months. I will self-inject Dupixient every two weeks, and the hope is that I will see some improvement after the third injection. I am cautiously optimistic, but understand at best this is only tackling the mast cell issues and there are a lot of other things going on in my body. As that Julia Michael’s song goes, “I’ve got issues!”
Throughout the hospital stay, I crocheted to distract myself from the pain, and got to visit with Millie. Although the circumstances were definitely not ideal, it was so fun to see her!
Getting home to my environment was a big goal, but to be discharged I knew I had to completely wean off the ketamine drip and restart nutrition through the GJ tube. So this is what I did. Stopping the ketamine was easier than increasing the feed rate. Replacing the GJ tube took my nausea down a notch, since this drain successfully drained bile from my stomach, but feeds still hurt. Any internal stimulus, like feeds, hurt. However, I was grateful that the lower abdomen pain (caused by the ovarian cyst rupture) had largely dissipated and I was left with my usual symptoms. It seemed the ketamine helped to reduce the headache pain loop a little bit. After 24 hours off of ketamine, I was discharged. Thankfully, the acute issue had been resolved.