Living with Gastroparesis

Well, getting myself to AZ even for the weekend has proven to be quite the adventure. I don’t leave until the 30th but I’m already feeling as if I don’t have enough time to get everything ready. People comment, “oh you have plenty of time.” Obviously, they do not know all that is involved. I like to compare it to having kids…um, a LOT of kids. That only covers the stress level though. I feel bad for my homecare in charge of my TPN and such. They have just as much to do when I go out of town. They are in charge of contacting Phoenix (another branch of my homecare – thankfully they have one located so close to my parent’s house!) and organizing my TPN and supplies to be delivered to my parent’s house for the three days I’ll be there. Unfortunately, I am going to be there in the middle of a delivery so they have to split my order, half to Kirkland and half to Arizona. They ended up sending me two orders of TPN to last me through until the 5th, minus the time I’ll be in Arizona, so I don’t have to worry about getting that when I get home. If any of that made sense to you, I applaud you, because I don’t even know if it made sense to me! But that’s how it is.

All my appointments are scheduled so I see my doctors before I leave for any prescriptions I’ll need refilled while I’m gone or signatures for papers hospitals or stingy TSA jerks might want. I found my gastric neurostimulator card as well as my port-a-cath card so that’s also a plus. I determined that I’ll be flying while hooked up to TPN because I found that in the past with tube feeding, it was easier to get through security if they see how everything works, while it is working. Even though it will be way early and totally throw off my schedule, it should be worth it. I’ll figure out a way to get back on schedule somehow.

In other news, my amazing Facebook groups are making awesome GP/CIP, or what is commonly now referred to as DTP (Digestive Tract Paralysis – a combination of all digestive diseases that slow down motility), awareness videos! I have made one too. Here are the ones so far. Enjoy!

It has been a long time since I have had the energy to stay at my computer long enough to write anything of worth on my blog. I trust those who suffer from any sort of chronic illness understand. I have been in the longest flare-up of my life. It has been complicated by week-long migraines that completely paralyze me in pain; pain that makes my ever so constant nausea progress to vomiting. The only thing I could do to make it bearable was to head to the ER for IV pain medication, fluids, anti-nausea medication and at times, oxygen. Four hours later, I would be sent home, only to return the next night, requiring the same treatment.

They’d preform more tests, only to come up empty handed. I had CT scans, X-rays, lumbar punctures, and blood tests. I would continually ask what to do when another attack came, looking for confirmation and assurance that what I was doing was right, and they would say just to come back. So that is what I did, many, many times; thanks to my husband who drove me to and from the hospital day after day.

Along with the migraines I was fighting, I had GP flare-ups. I am not eating anything, save for sherbet ice cream at night. TPN is pretty much my sole source of nutrition. I run 2000ml over 20 hours. I find that being on more of a continuous cycle helps a bit with the migraines. Not a whole lot, but some. It does not, however, help with flare-ups. On the scale of uselessness, I live in a continual state of 8. I manage that fairly well. When it bumps up into 9, that is when I have problems and start breaking out medicine and patches to try to control it in order to avoid a trip to the ER. I have lidocaine patches and oxycodone for such cases. I’m also taking ultram 3x daily and use fentenyl patches for pain. I have liquid phenergan and IV zofran. IV zofran is daily and the liquid phenergan is when the IV stuff isn’t working. That is sort of how I play things, always having a back up. I want to know I did all I could at home before I rush myself to the ER.

Anyway, that is, in a nutshell, why I haven’t been updating my blog. I feel I have things more under control for now, and will be on more often to write more about my battles with GP and overall life. I will be making my first trip outside the state on TPN next week, so that will be quite the adventure. I’ll be sure to write about it, in case others are planning something similar and are curious as to the process. I’m nervous about making it through security at the airport. I haven’t traveled since the new rules went into place. I have a gastric neurostimulator on top of a port, so I imagine, getting through security won’t be much fun (on top of the syringes and other TPN materials I need to bring with me for the day). That’s for another entry. Hope you all are having a great Father’s Day and a good tummy day as well! Take it easy!