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.