Living with Gastroparesis

Well, I’ve been on TPN for about 2 months now. I have to say, it is turning out to be a lot easier on my body than tube feeding was. I find it a lot easier to keep up on the schedule. With tube feeding I would adjust it to how I was feeling and more often than not, I would get less calories than I should have been getting. This was mostly due to my recent diagnosis of CIIP (chronic idiopathic intestinal pseudo-obstruction). I have written up quite a bit of information on tube feeding and my experiences with it but since I have been on TPN, I thought I would switch over and give out some information on that.

TPN stands for Total Parenteral Nutrition. It is basically food broken down into its basic elemental form and is delivered through a vein. I did have it going through a vein in my upper arm via PICC but due to my wishful thinking lifestyle and length of time needing TPN, it was not a great option. So last month they placed a portacath under my skin, sutured the port to my chest wall and tunneled a catheter from the port into a vein in my neck and down to my Superior Vena Cava (SVC). I was let go that day.

Not going to lie to anyone, the procedure hurt and recovery time was long. The whole site was swollen a good 3 weeks post-op. But now, when it is reaccessed during a needle and dressing change, it doesn’t hurt barely at all. Long as the person doing it knows what they are doing !

Anyway, this weekend we are taking a pre-emptive approach to my pain, discomfort, nausea and fatigue via medication. I’m taking my medicine before things get bad in hopes to catch it early enough to keep me out of the ER. I now have IV zofran which so far has proven to be helpful. Victor has noticed a change for the better. Don’t know why – but hey, I’ll take it. I also had the energy to start and finish my TPN pages. Please feel free to read through them. The Scrub video can be found there! New photo section up as well.

>Living with TPN<

I apologize for not updating my blog but it seems as though each week I have had to be in the ER or hospital for one thing or another. If it isn’t the ER or hospital, it is a PCP appointment, GI appointment or IV iron infusion. Long story short, I have not been feeling well and have been trying to find out why. Even after my J-tube was pulled last month, the pain still comes back with a vengeance. I have appointments set up to see a pain specialist but unfortunately they could not see me until the end of March. Until then, I have been resisting putting myself on narcotic pain medicine until the pain becomes too unbearable.

I’m not a fan of narcotic pain medicine because of how it acts on my stomach and intestinal tract. I know not much goes through it, given I am on TPN, but for whatever reason, my abdomen still likes to distend out making me look 9 months preggers leaving me in agonizing pain which only adds to the chronic abdominal pain I have already. What can you do?

You all know I had a PICC inserted on the 28th of December last year. Being that I am on TPN longterm, I wanted to have something more comfortable, like a port. So on the 28th of January, I received a portacath. It is constantly accessed, but it doesn’t bother me much. It isn’t ever in the way and leaves me free to move around without much issue. I have been able to cycle myself down to a 12 hour schedule, only needing to plug in at night to feed. Every Monday I have a home care nurse come by to change the dressing, needle and take vitals, blood and other stats. I get a delivery of TPN and supplies usually on Wednesday or Thursday. It all works out. It doesn’t hurt like tube feeding did and I attribute that pain to CIIP as discussed previously.

Recently I was in the downtown VM clinic for my third round of IV iron infusions and on my way home (20 minute drive), my feet started to swell, my joints stiffened up and became extremely painful, and breathing was difficult and painful. Once I got home, I called my doctor and they instructed me to get myself to the nearest ER. The second picture above is the result of me making a visit. I was hooked up to every monitor, had breathing treatments, an EKG, chest CT scans with contrast, xrays, the works. I ended up staying the night for observation and was released the next afternoon. I haven’t felt the same since then. I still suffer extreme nausea, fatigue, migraines and abdominal pains even though I haven’t eaten anything. I have an appointment on Tuesday for a follow-up with a fill-in doctor since my PCP is out of town for the week. I have lots of things to go over with him, so I hope he is ready.