I feel like a chicken with it’s head cut off! I have been in and out of the hospital, the emergency room, and urgent care these past few months and it all comes back to the fact that I’m not eating.
I eat, I get cramping. I eat, I get nauseous. I eat, I throw up. I eat, it’s half of what’s on my plate etc. I don’t even remember to eat 3 meals a day because I feel full and don’t have an appetite. When I finally get a twinge of hunger it comes in full force and it feels like I haven’t eaten in days (which calorie-wise I really haven’t). So I attempt to eat a full meal and fail miserably. It is a sucky, vicious cycle.
That cycle has flared multiple times this fall and sent me to the ER. They put me into what’s called the “Outpatient Observation Unit”. It’s where you go when you need additional testing and such that the emergency room cannot provide, but are only expected to stay a couple of nights. There they start me out on a liquid diet and slowly taper me up to solid foods as tolerated. They also have run a gastric emptying study, which provided no extra insight as it came back negative. Now, I can tolerate solid foods, some anyway. And I don’t throw up every time I eat like some of my Spoonie friends. But I still am in great amounts of pain most of the time I put solid food into my stomach. It feels like someone is pinching or stabbing me, its pinpoint but radiates out. It can double me over and cause me to curl up into a ball. It is real pain. I also sometimes can’t even look at food because my nausea is so intense, but my body won’t let me do anything about it. My meds don’t help unless I take multiple, and then I’m passed out.
I feel like I am not being seen, or being taken seriously. I am uncomfortable at my current weight. It causes me physical discomfort. It flares my other conditions. I want to not feel hungry and nauseous at the same time. I don’t want to have to lay down after eating because it feels like knives in my gut. I want to feel OK in my body again!
I am tying to get into a new GI doctor that my old one recommended me to, since she could “no longer offer me any solutions”. I want to bang my head against a wall, I’m so frustrated. Insurance is being a bitch in approving the referral and I don’t even know how long she is scheduling out! Three. Three doctors I have seen have talked about J-tubes now and honestly, I’m too dehydrated and calorie-deficient to be opposed to the idea. I need a way to make up for my inability to get a full 2,000 calories into my body. And we are already working on the dehydration part with getting a PICC and saline hydration therapy.
So I guess, just pray for me in these next for weeks, please. I have a complex, frustrating road ahead and I am trying my hardest to walk it while barely being able to stand.