Living with Gastroparesis

Sorry for the late post on this, but I had a few complications after the botox injection. I experienced quite a bit of pain for days after the procedure and made several ER trips to help control that pain. The EGD and sigmoidoscopy procedure went really well. Dr. Patterson says my colon and stomach looked healthy except for a non-functioning esophageal valve and unusually tight pyloric valve. That is where he injected the botox. I still haven’t noticed any difference. The procedure was performed on the 23rd of August. I plan to make an appointment with him next week to see where we go from here. I hear multiple injections are needed to notice a difference but if I experience the same pain for up to a week after, I’m not really sure I want to continue unless I’m offered better control for the pain. It was not good times.

As of now, I’m back into my normal routine. Pain continues to live with me at an 8 on the scale of uselessness. Migraines are flaring up more often due to the abnormal heatwave we are experiencing. I can’t wait for fall and winter where I can enjoy being outside and not having to worry about my energy being zapped by the sun or getting sick and dehydrated. My weight is being beautifully stable at around 110, thanks to TPN, the only form of nutrition that has worked for me with no pain. I run it on a 20 hour cycle starting at 9pm, ending at 5pm the next day. I get 2000ml of fluid in which there are 1450 calories. I supplement some of those calories with a few scoops of the only ice cream I can tolerate, Sherbet (tropical flavor!), at night. Believe it or not, the ice cream is doctor ordered. They say you MUST put something in your mouth and in your gut to keep it from completely dying off. No matter what it is, or how small – something must go through it. This is all I have found that works and I don’t feel like rocking this boat by trying something new. Not yet anyway.

Exciting News: I have received a smaller version of the same feeding bag I use, to check out and make sure it would work as mine does so I can 100% recommend it or not to other tube feeders. I still have not received the smallest of the bags, and will be writing again soon to see if I can get my hands on those. I can’t express it enough, I love my feeding bag. It is so comfortable I have actually fallen asleep on the couch with it on. I’ll have to make a video on how to properly load a feed into it as it gets a little tricky (my husband had some problems with it so I figured some others might as well). This weekend is going to be a nasty one, in terms of weather, so if I manage to stay out of the ER, I will do my best to get a video up and my pictures from the scope I had last month. It is interesting for those who haven’t seen or had one done before =)

Happy tummy days, keep hydrated and stay cool!

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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!

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So I see Dr. Justin Stahl with Virginia Mason Medical Center, Seattle for the treatment of my migraines that recently have plagued me everyday. First, he placed me on a preventative medication since I was already tried on Ketorolac, and Maxalt. This new medication was called Desipramine HCL. I started off on 50mg each night. It seemed to initiate migraines at night so I cut it in half and still suffered major migraines until I was down to 15mg each night. This didn’t seem enough to be really doing anything and had to continue to take maxalt, Excedrin Migraine x3, and Ketorolac each night. That’s not good, by the way.

I called them about 3 weeks into treatment and he prescribed something new, Topiramate (Topamax: Oral). So far it seems to be working. I am taking it 2 times a day. It doesn’t seem to make me tired or loopy. It may have effect on my weight but that is still to be determined. I have only been on this new drug for a little over a week and other factors such as mental stability factor in when deciding these things. Over all I am just happy to be migraine free for now and will enjoy the time I have without them. A small victory towards normalcy but a victory nonetheless. I think we’ll have to celebrate this weekend by taking the dogs out to my favorite park!

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