It's been a while since I've checked in and I feel like I'm in a better mental state to update you all on what's been happening, so here we go..
On August 6th, after putting my bladder through what might have quite possibly been the worst torture of its poor little interstitial cystitis-ridden clear liquid-diet life, I underwent the G-POEM surgery for gastroparesis. After being formally diagnosed with this chronic disease for 13 years, I took a chance and had the stomach surgery that would hopefully allow me to eat like a normal person. To update you all, my stomach and small intestines are paralyzed and it takes my stomach 19 hours to empty (hence my skipping meals, my infant size portions and small-sized body frame; trust me, I know I don't look like I did in high school or have that body-builder frame I once had). My surgeon told me ahead of time it was a long shot due to the severity of my condition, but it was also promising, as the surgery had a 70% success rate. I was actually pretty hopeful, all things considered - social media boards and support groups raved about the procedure and I was pumped.
My parents, as always, came up to support me. We spent the night in a hotel room together. They dropped me off at the hospital the morning of and we shed a tearful goodbye as they couldn't come in with me to the pre-op prep due to COVID restrictions. I had a mental breakdown from being alone and the pain my bladder was in. Thankfully, the surgery went well, however, and I had no problems! If you know who I am, this is a rare occurrence. Third surgery in a pandemic down and I was free to go home.
The recovery process was brutal, so I'll spare you the gory details, but I will go on this rant. What I will say is this - due to my IC, I have chronic pain and need opioids occasionally to manage it. The opioid crisis has done nothing but harm chronic pain patients. Because I have an outstanding prescription for my chronic pain, I have not been able to fill pain medicine prescriptions for my surgeries. It is awful. I have had a bad experience with pain medication in the past, which I am sure you are aware of as I have opened up about it. Thankfully, that allowed me to have no problems with this medication. However, when I have surgeries now, which, I know I will need to unfortunately undergo for the rest of my life, as I tend to need emergency ones occasionally (current lifetime surgery count: 14), I will struggle to obtain the necessary medication to deal with it because I have a standing prescription. It's unimaginable the pain I had to go through with my bladder surgery and then the GPOEM. The GPOEM, thankfully, was not as bad, but I can't begin to explain how horrific the bladder surgery was. This is something that needs to be remedied with our healthcare system and with that I will get off my soapbox.
I had a follow-up appointment with my Emory doctor, and, unfortunately, my GPOEM surgery failed. I'm still having to skip the occasional meal, I'm taking my regular nausea medication on the daily and I've spent some unfortunate nights on the bedroom/bathroom floor. My surgeon was incredibly apologetic and empathetic, saying how incredibly sorry he was it did not work and how he truly wanted something to work for me. I told him it was fine and I would do it again a thousand times over. I had read nothing but amazing things for gastroparesis patients with this surgery and I 100% had to give it a shot. I would encourage any gastroparesis patient to have this surgery. His next suggestion was a gastric pacemaker operation. This is essentially where he would install a pacemaker into my stomach, similar to a heart pacemaker, that would remind my stomach to pump and empty; it's something to consider, but not what I want to think about right now. I've had 4 operations this year, and to be honest, I'm exhausted. I've been dealing with my stomach issues my entire life, and right now, my main priority is my bladder and trying to cope with its pain.
Which brings me to the next issue - another hydrodistention surgery. My urologist has suggested performing the operation again but injecting steroids into my bladder this time to see if it will help control my pain. To be honest, I'm willing to give this a shot. As difficult as the recovery was last time and despite the fact that it didn't help, if the steroids may help relieve it, I'd try it; the problem is, I don't know if I could get through the recovery without any medication to relieve the pain, because last time, I felt like dying. It's a lot of days to spend in my back bedroom, crying, not seeing my son, wondering when the end will come, feeling less than human, all for a procedure that may or may not work. The payoff could be huge, but it also could be ineffective. Do I want to sacrifice that time with my family? This is where that opioid crisis comes in again and I think back to how horrible I feel when I recover from procedures and start doubting my worth as a wife, mother and friend at that time.
There are a lot of factors to consider and many things on my plate. On the bright side, I have a great team of doctors on my side. I will say that I've started a new job as an academic advisor in the Criminal Justice studies program and I am loving it. The students I work with are amazing and the faculty are great. I have never felt so in my element, being able to talk about past coursework I've taken and my prior experience as a law enforcement officer. I know what I'm talking about and being able to relate to the students is beyond amazing. These kids want to enter the Criminal Justice field with truly altruistic intent and it is incredible to witness. I love waking up to start the work day and it is such a wonderful feeling.
My baby boy is no longer a baby and while I miss those days where he was so tiny it is so inspiring to watch him grow into himself and see his personality blossom. He is quite the wild one and I can already tell he will be a social butterfly with absolutely no filter (the latter of which he is going to get from me). He is a dancing queen and I am raising him on all the right music. Being a parent is the best blessing of my entire life and every day I cannot believe I get to be this special little kid's mother (although when the tantrums start, sometimes I debate that 😆 - only kidding). He and my family make every day worth living.
