I don’t even know how to start this post. Tears won’t stop falling and my head hurts so much. But I know I want to write it because for me writing is cathartic and also I hope it helps to bring awareness to chronic conditions.
I have Gastroparesis. It is sometimes called ‘delayed gastric emptying’ and quite literally means paralyzed stomach. There are varying degrees of severity from how bad the condition is and the capacity at which the stomach is working. Some people only have mild symptoms and manage with still being able to eat with help from some medications. But others struggle with severe nausea and/or their symptoms are so bad that they are tube fed into the Jejunum, bypassing the stomach.
My Life With Gastroparesis
It’s ruining my life. I wish that was an over exaggeration, but it’s not. Things got pretty bad in 2015 with vomiting non-stop every day for months on end. I had to have wide bore NG tubes in to drain my stomach and medication to encourage my stomach to empty. It was then that I was diagnosed as having a gastric outlet obstruction following surgery to remove my stent. And when things continued to get worse, I was wrongly diagnosed as still having gastric outlet obstruction, which turned out to actually be Gastroparesis.
I can’t even begin to explain how truly awful living with this condition is. Vomiting on a regular basis or having food sit in my stomach for days, rotting is not fun. It’s debilitating.
For months I’ve been convincing myself I’m doing okay. I even took myself off the liquid diet I was told to be on and stopped my nutritional shakes because I so desperately wanted to be ‘normal’ again.
Starving For A Cure
I didn’t realize until my recent admission into the hospital last week that I’d lost quite so much weight. I say I didn’t but it was more a case of I didn’t want to believe it. Of course, I noticed my clothes were getting baggy and hips were starting to dig into my mattress when I slept. But I kept saying to myself ‘oh maybe the material has stretched’ or ‘the mattress is knackered’.
I can’t eat properly and it’s not through lack of wanting. I love food. Like, a lot. But my body doesn’t. I can manage a few bites of something and that’s it. If I push myself then I’ll vomit. Sometimes those few bites are okay, other times my stomach distends and rots for days. It’s as awful as it sounds.
What Happens Next For Me
My dieticians are very concerned and unhappy with my weight loss and current weight. Not to mention my lack of nutrition and calorie input. I was scheduled to have an NJ tube placed this Monday and go onto tube feeds. However I was wrongfully discharged by an on call doctor who wasn’t the slightest bit interested in my weight and nutrition issues.
I’m due in to see my consultant and dietician in a few weeks. After speaking to my dietician when she called today, she wants me in to see her and on feeds ASAP. But ultimately, a plan needs to be agreed with my consultant due to my complex anatomy.
I am quite literally starving and in all honesty, I’m fucking terrified.