Cascades

In my previous post, I was a bit too optimistic about my recovery from a prime candidate for the worst week of my life, which occurred during what was likely the worst month of my life. I blame nutrition deprivation and whatever drugs remained in my system from my procedure for the sunny outlook.

I am healing, but I am recognizing that this will not be a quick recovery. My body was pretty badly abused between the nutrition deprivation, the severe pain that also interrupted my sleep, the multiple procedures and the Terribly Torturous Tube. Based on the amount of blood I was venting from both my G and J tubes, it was a pretty bloody mess in there too.

Unbeknownst to me, during Thursday’s procedure they gave me a pretty hefty dose of that medication that thickens the mucus in my stomach so that any internal wounds can heal. This medication turns my Gastroparesis up to 11 because it makes venting nearly impossible. This leaves me feeling more and more nauseated without any opportunity for relief.

Let me be clear, I am recovering. But my jejunum is still so sore that I am still waking up several times a night from the pressure of my feed. A pressure that had previously been perfectly comfortable. I seem to have gotten most of the vile medication out of my system, so at least I am able to vent my G tube again, and I can get at least some comfort.

I have yet to make it through a day without needing to take a lay down/nap every few hours. And while my stoma is wondrously healed, the adhesive on the protective wafer left me with an itchy and painful rash. This was not surprising to me, since my skin loathes adhesives, which is why I use clips to keep my tube in place rather than tape. I woke myself up last night because I had been scratching my stomach in my sleep and the pressure on my sensitive abdomen was painful enough to wake me up.

And I have not even begun the emotional recovery. I can not underscore how traumatic this last month has been. Remember how in 2020 every day felt like a month and every month felt like a year? Well this was that feeling all over again. It hasn’t even been 3 full months since I got Etisarap, and yet I feel like I have aged years since I first got her.

The frustration, aggravation and feelings of neglect from collective 34 hours in the ER and the inability to get answers pale in comparison to the trauma of the last month. I am trapped in what I now understand will be a lifelong sisyfusian battle with the medical and insurance industries. Because things will continue to go wrong with my tube. Hopefully the problems will be few and far between, but let’s face it. Shit happens.

I now understand just how small a niche managing a feeding tube is. I say this with the full knowledge that I now have a skilled, capable and compassionate stoma nurse on my care team. I have now had several conversations with nurses in my Gastroparesis groups and I have learned that the standard nurse training on feeding tubes is minimal at best. And that doctors get even less, beyond the basic placement. And given my experience with the doctors trained to place them, I am dubious about their knowledge.

I will have to continue my search for a competent doctor to manage my tube. But it will not be an easy process. You can’t just google G-J tube and doctor and find one. You will get a list of GIs, but if you peruse their websites, you will see nary a mention of feeding tubes, gastroparesis or even motility issues.

However, before I can even do that, I need to be able to resume comfortably sleeping through the night. I had tried restarting acupuncture, but have now cancelled two appointments because of trips to the hospital. And as much as I know acupuncture will make me feel better, I need to recover a bit more before I can schedule another appointment.

I am not up to leaving the apartment yet and starting tomorrow, leaving the apartment will require going down and up 6 flights of stairs. Even though I had worked through the pain to comfortably go down and up 4 flights of stairs, I have lost that progress for now. We have had many generous offers to stay elsewhere to avoid the steps. Offers that I truly and deeply appreciate. But right now Dancer is too key to my healing to be without. He is always there with me when all I can do is lay there with my eyes closed. And smooshing my face into his side while he purrs is deeply healing to me.