Living with Gastroparesis

The weather has finally cooled down a bit and this has made my stomach and head happy. I got enough energy a few weeks ago to venture out and try to rock climb a bit. I like the challenge the TPN backpack adds. Climbing with a few extra pounds on your back and a tube hanging around makes me just that much stronger! Here are some pictures from my adventure. I haven’t been back since because my pain returned in full force, leaving me homebound.

I’ve been seeing a pain specialist in an effort to control my pain. We attempted first, with trigger point injections. I basically told him where my pain was focused and he injected numbing medicine into the area. It was unsuccessful. Our next plan is to do a TAP nerve block. It will be done using ultrasound as a guide and I’m sedated for the procedure. Following the procedure, we will either attempt a celiac plexus nerve block using flouroscopy or go straight to a spinal cord stimulator. I’m hoping we can control the pain with just that last procedure but if it doesn’t work, I’ll end up with a pain pump. Both my doctor and I agree that a pain pump would be the last option as we are trying to find ways to get off medication. A pain pump would get me off oral medication but still release pain medication into my system. The spinal cord stimulator wouldn’t use any medication. We will have to see after my first nerve block next week. I hope it goes well.

I also pulled out the pictures from my last EGD/sigmoidoscopy scope.

I hope you are all having happy tummy days and enjoy your upcoming weekend!

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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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For a tube feeder, like myself, a backpack is a constant companion. This is especially true when a tube feeder is either a day feeder or feeds longer than just nights. It is important to find a backpack that is comfortable and has the capacity required for the tube feeder’s needs. Most backpacks also require some modification to work well. These are the things I looked for when I went shopping for a new backpack after giving up on the one supplied to me:

After much searching both on the internet and through stores, I finally found a backpack that fit all my needs! This backpack is by far the best I’ve come across. It is super light, the lightest hydration pack on the market so far, is very comfortable to wear (even 24/7), has a lot of room to expand if I need more space and has easy to access side pockets that can be secured with straps. But what sold me was the hole that connected the hydration chamber to the other area where I’d have my pump. The hole is where my tube would go. Not only that but it also had a Velcro strap at the top to hang my TPN feeding bag so it doesn’t drop down to the bottom of the bag. These two features are rarely found in any backpack and I know also the hole connecting the two backpack compartments does not exist in any backpack I’ve ever seen before. Those features are typically ones feeders have to do themselves. I’m not very handy and I was determined to find a backpack that required no adjustments on my part to make it work. This backpack, the one I linked above, is the only one I found. I got it in black though. Like I said, it has to look good too! Here are some pictures I took of mine:

What’s in my Backpack?

I carry with me:

Those are just my everyday things. Of course I adjust or add to the list depending on where I’m going or how long I’ll be away. That list will always include my TPN bag (2L of fluid) and my brick of a pump. Everyone is different but this bag is sure to benefit everyone, not just TPN feeders, but I’m pretty sure it will work for HEN feeders as well. The system is the same. I’ve tried and looked at many others. This is my bag and I highly recommend it!

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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!

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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<

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