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!
I started IV nutrition (which is called TPN) on the 17th alongside tube feeds with the hope of getting the feeding tube working again. Last Saturday I was in the ER with severe abdominal pain from trying, and I haven’t been able to run tube feeds since. I have stopped tube feeds altogether at this point, and am getting almost all of my calories through the IV. I can’t eat much more than a few bites, and on a good day might be able to finish a cracker (it’s took me two days to eat 1 cracker a week ago) Unfortunately, my feeding tube is unlikely to start functioning well enough in the future to come off TPN.
I run the IVs at night, and it takes 12 hours to get the full amount. At least now that I don’t have to carry around feeding tube stuff all the time I can leave the feeding backpack home. I smile every time I stand up without being connected to it.
The plus side is now that I’m finally getting nutrition again that I will also get some energy back. I feel like I disappeared from the community in September, but I’m hoping to start reconnecting again. I also had a test this week that showed my stomach definitely is not emptying fast enough (moderate delay), which felt really validating after my GI’s letter. Psychology won’t slow the bowel down this much.
I realized not everyone might know what TPN is. It basically means I will be getting most to all of my nutrition through an IV, as my digestive tract seems to be working less and less. TPN is essentially life support, without it I will likely die of starvation in a few months as I can’t eat more than a few hundred calories.
There are huge risks to IV nutrition too, the worst being sepsis and liver damage. This is a treatment that could very well kill me (5 year survival is 40-60%) but without it I’d certainly wind up dead. It’s scary, but necessary.
I have a really hard time thinking myself as ‘sick.’ That’s beginning to change as my symptoms get more severe, but each new thing becomes a new normal for me. Of course when I get used to a new thing the next thing tends to show up. Case in point, I just got used to tube feeds, and now there’s daily IV infusions of nutrients around the clock.
Funny story with the tube feeds too, occasionally when I see a character stand up on TV my brain thinks, “They forgot their backpack! They’re going to pull on their tubes!” Brains are weird.
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.
So I’ve finally gotten around to posting again, in part because I feel like I finally have something to write about.
I saw an optometrist last week who specializes in neurologic conditions, as I have been having problems with reading, eye pain, and left eye blurriness. After examining me he found evidence of previous optic neuritis (ON) in my left eye. He did OCT (optical coherence tomography) right there and found that not only had I previously had ON in my left I, but I had had it in my right eye, and it was more damaged than the left. He also had me look at different colors while covering each eye, and I found that when looking at most colors, they look cooler with my right eye and warmer with my left. It was really bizarre to see this, as I hadn’t even noticed that colors had changed any. Continue reading A long-needed update