My Thanksgiving. Not eating is tough. At least I get to spend time with family.
Home from the hospital! In the 5 days I was there, I found my intestines must not be doing so well either. I ended up having to push a few meds in my tube during the day I went in, and I think that’s why my pain got so bad. 5 days of complete bowel rest and it’s almost gone. I flushed my J tube with 10 mL yesterday, and even that small amount left me bloated and in pain for hours. I also had to go on continuous drainage through my G tube to keep the nausea at bay, and it’s been extremely dark green the entire time.
I’m really hoping this is just a bad flare, as it’s been hard to even do liquids because of nausea (and they were getting sucked right out too). I’m hoping the continued bowel rest will help things. That being said, based on how my function has slowly been declining it doesn’t look great for the immediate future. Things can always come back some though! Fingers crossed!
At least we got my important meds switched over to routes that don’t use my GI tract, so I should be able to control pain from home for now. Palliative care is also coming on board, and I’m hoping that will help with quality of life issues. Not a completely wasted visit, but at the same time frustrating being in the hospital for days mostly for pain control.
I’m really glad to be home! Thanks for all the support!
PICC in! It’s purple too, my favorite color. Probably starting TPN tomorrow. Now I have three tubes sticking out of my body. Isn’t life interesting…
This piece is intended to be informational and in no way is meant to diagnose gastroparesis or suggest treatments. If you think you might have gastroparesis or any other medical condition, talk with your doctor.
Gastroparesis (GP) is a fancy way of saying slowing or paralysis of the stomach and digestive tract. It is thought to affect between 200,000 and 300,000 people in the US a year, and is a relatively rare condition. Diabetes is the most common reason for GP, and other causes include viral infection, connective tissue diseases such as Ehlers Danlos, neurological illness like MS, or damage to the vagus nerve during surgery. In more than half of cases a reason is never found. Major symptoms include constant nausea, vomiting, stomach pain, and feeling full after only a few bites of food. Symptoms can get so severe as to prevent adequate nutrition and hydration.
One of the major illnesses I deal with is called Gastroparesis (GP). GP is a fancy way of saying the stomach and intestines stop moving like they’re supposed to and have trouble emptying food. As a result, I deal with nausea and stomach pain on a daily basis, and fill up after only a few bites of food. I don’t often talk about my symptoms because they seem dwarfed behind all of the other problems from my neurological illness, but they have been a constant presence in my life since 2013.