I have a ten day trip to the east coast. Mine is to visit my family though, while she learns to advocate about climate change. I’m not sure how she got 10 days TPN in two bags. It took me 4! These are just my medical supplies for the trip, including TPN, my c-pap, catheters, and TPN/hydration supplies. One year ago, I had to cancel this trip to get feeding tubes urgently, because starvation and dehydration were becoming a problem. Now, I’m alive and nourished thanks to TPN (IV nutrition). I am grateful for this treatment, grateful that Medicaid hasn’t been cut and pays for this, and grateful to be alive! NJ here we come! August is also gastroparesis awareness month, and we’re starving for a cure!
So the medical malarkey is finally over. They sent me home on Saturday after making sure at least part of my tube was still in my intestines. Interventional radiology didn’t want to come in over the holiday weekend, so I had to go back yesterday to get my tube fixed. They did the change with no pain meds, and the whole area was already inflamed. I said ouch a few times. At least I got a shiny, new J tube out of the deal? Now if only we can figure out how to get it working…
Thanks for all your love and support!!! 💜💜💜💜
This is the IV nutrition and medication I need to stay alive every day. (Apparently, I’m a messy eater… 😜) I have severe gastroparesis and intestinal failure from Ehlers Danlos Syndrome, and I am unable to eat or tolerate formula through my feeding tube. I am completely dependent on TPN (IV nutrition) to stay alive, and would have died last year without it. Medicaid pays for this life-sustaining treatment, which allows me to keep doing disability rights work and writing. Don’t let the AHCA pass! 24 million will lose coverage and people like me will die.
I realized I posted about something medical without explaining it, and assumed everyone knew what I was talking about (like a typical doctor 😜)
I had an IV port put in last Friday. It is a device that sits just under the skin, and has two access ports. By sticking a special needle through the skin and into an access port, i can get IV access to one of the major veins near my heart, so I can get the IV nutrition I need daily. There are two access sites so that I can ru two different IVs at the same time, or give myself medications while running nutrition. Here’s a picture of what it looks like access with two needles in.
the port will allow me to remove the needles and go swimming if I want, or do other activities without having a line hanging out. Hopefully this will last me a long time
Here’s a picture of me with the port accessed.
This is what the port itself looks like.
Port is in!
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,
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.