Port is in!
Tubes and Lines
It’s been a tough couple of months. I’ve not been able to be on Facebook due to fatigue, but I thought I would try to poke my head up. At the moment I am getting all my nutrition from the TPN (IV nutrition) as I am unable to eat anything or tolerate anything through my feeding tubes.
This week is feeding tube awareness week, so I thought I’d post a picture of my tubes. I have severe gastroparesis and intestinal dysmotility, and am unable to eat. As a result, I am kept alive by my tubes. People like me rely on feeding tubes to be kept alive and to lead a full and productive life. Check out the website to learn more,
Thanksgiving and Can’t Eat
My Thanksgiving. Not eating is tough. At least I get to spend time with family.
Intestinal Pain and the Hospital
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!
IV Nutrition
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.
Total Parenteral Nutrition
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.
New PICC
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…
GI Letters
So I had my appointment with my GI today. It turns out he didn’t mean the letter he sent to be as inflammatory as it was. I think the fact that English is his second language can be a problem at times.
He mainly wanted to make sure I am talking with a therapist, since this is a lot to deal with. When I assured him I was, he said he was going to write a second letter for the chart to undo the first. I wish he’d just talked to me.
Anyway, I’m scheduled to get a PICC tomorrow and start TPN alongside feeds with the goal of hopefully finding a regimen through the tube that will get me what I need. Good thing too, as the tube seems to be going the wrong way of late. i had to go on bowel rest last night because the pain was so bad, but at least it’s a little better today.
A heckofalot of drama that was likely unnecessary, but at least he’s willing to still help me out and do what is needed. Now it’s time to wrap my head around the fact that I’m starting TPN. With all the drama, I’m not sure I’ve really processed that yet.
Thanks everyone!
Neurological Lottery Ticket
Just got home from my neurologist. They think that on top of getting small fiber neuropathy, gastroparesis, and urinary retention starting in 2012, that conversion disorder is still a possibility to explain my other neurological symptoms. I should go out an buy a lottery ticket, to be lucky enough to have all this stuff start at once. The 7 therapists and psychologists I’ve seen since this started haven’t found any evidence of mental illness, but that doesn’t seem to matter. I wouldn’t care that much, except my disability insurance policy has a ‘mental and nervous disorder’ exclusion and can stop paying benefits if disability is caused or contributed to by a ‘mental or nervous disorder.’ They used this to cut off benefits at the end of April, and I have had no income since. Being sick is the easy part, it’s dealing with this bullshit that’s the worst. I could use some love right now.
Light Sensitivity
As I’ve mentioned before, I have sensitivity to light due to my autism and probably my traumatic brain injury. I’ve only learned about my light sensitivity recently, though looking back over my life I’m sure it’s been a longstanding problem. As it turns out, light sensitivity can be pretty common in neurodiverse folks and after brain injury. Light brightness can be a big problem, as can high contrast and certain wavelengths (colors). For me, my light sensitivity means I get sent into overload: my brain shuts down, I can’t think, and all I want to do is curl up in a ball in a dark room.