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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Last week was not my week. I was without my pain medications due to a huge mis-communication between my pcp and her nurses. By the time I noticed this error in communication, it was too late; she was gone, left for vacation. Long story short, It took me all week to get my pain medications and while waiting, I had to check in to the ER two times that week for help. The pain I am experiencing is something different. It is unlike my normal GP pain. It is sharp and crampy along the right side of my body between my gastric neurostimulator and pelvic bone. I was also suffering bloody bowel movements. Even with these alarming symptoms, the ER gave me medication and sent me home. My husband and I came to the conclusion that the ER is no place for a person like me. They have no clue when it comes to anything that requires any extra thought process. Unfortunately my gastroenterologist was out of the office so I had to wait a few more days for him to return before I could make an emergency appointment to see him.

When I got in to see him, he agreed that a colonoscopy would be most appropriate, given the symptoms. He took an x-ray and based off that he also wanted to do an endoscopy. He also wanted to try a new treatment of botox injections into the pylorus valve of the stomach. It paralyzes the valve allowing food to exit the stomach more freely, thereby allowing the stomach to empty at a more appropriate time. I am not sure how I feel about the botox treatment. I hear that it can cause dumping syndrome which is by far worse than gastroparesis. It could also just not work. I think more research is needed to make a decision, but I don’t really have much time. My appointment for the procedures is in 2 days (8.23.11). It will be preformed under general anesthesia. At least I won’t be waking up in the middle of this scope, like scopes of the past. A small reassurance, but I’ll take it.

This is a big week for G-Pact and Oley. It is the week where all of the members take time to spread awareness through media, meetings or even casual conversations. We are always trying to spread awareness of DTP (Digestive Tract Paralysis – a term that covers all digestive disorders that slow down motility) but this is the week where we really pick it up. Facebook is the best place to find information regarding DTP. Awareness videos are reposted, people are directed to sites where they can learn more about DTP and how they may be able to help make a difference in the life of someone with DTP.

I’ve made profile pictures for people to use to help spread awareness. All you’d need to do is tag yourself in these photos, or download them, and place them as your profile picture for the duration of DTP Awareness Week (August 19th – 27th). If anyone has questions about anything GP or DTP, send them my way =) Here are some of what I made!

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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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After I returned home, as I predicted, I got a little sick, dehydrated and had a few ER trips. But, I’m feeling much better now and am ready to unveil my ultimate TSA and traveling wisdom! I want to thank Sea-tac mostly for being very understanding and seemingly educated on all my equipment and medical needs. Perhaps it is due to the GP awareness that stands out here in Washington, and the amount of them just going through the airports, or maybe it is because of the amazing people at G-Pact making their rounds with TSA and other government run agencies that will ultimately need to deal with medical equipment and the people that use them. I don’t know, but I had a very easy and enjoyable time getting through the checkpoints at Sea-tac even with my service dog, Ellie. Regardless, here is a list of things I recommend when travelling with any sort of feeding set up or require special attention at checkpoints or at the gate.

• Make sure to visit each of your doctors within two weeks before your flight to make sure you are healthy enough for the trip and to have all your medications filled so you don’t run out while you are away
• Print out and complete the Travel packets found on the Oley site (download the whole packet so you can fill it in on your computer if you want and discard the info that isn’t important for you)
• Have your doctor sign the documents you printed out (I printed out 4 copies – 1 for me, 1 for each airport, and 1 for the hospital should I need to be seen while away)
• Call ahead and have your TPN or Formula and all your supplies for the time you’ll be away, shipped to your destination. It eliminates the fear of forgetting something important. Most companies have offices around the country and can easily ship to anywhere you go, even out of the country. Make sure you know the exact date your shipment of supplies will arrive at your destination and that there will be someone there to take care of it. I know my TPN had to be taken immediately to the fridge as Arizona is HOT outside and will kill my TPN if not taken care of properly.
• Check-in online 24 hours before your flight so you can change seats, trying to get one with more leg room
• At check-in (checking baggage or not, I did) ask for an escort pass – I had my husband, and my parents on the way back, escort me through the checkpoints as it made it easier for them to keep an eye on my things (and my dog) as I was taken aside and patted down
• Tell TSA everything you have before even starting the pat down. Some, it will be their first encounter with your setup.
• GO THROUGH THE CHECK POINTS HOOKED UP TO YOUR FEEDS, it just makes it easier for them to believe you and be comfortable with everything
• They will swipe down all of your things that cannot go through the scanner (pump, backpack, medical supplies, formula) and make sure there is no bomb residue on it
• Your escorts can go straight through to the gate if you want. I find having people there helps with the anxiety. It was my first attempt to fly since the rules were changed last December.
• If travelling with a service dog, like I did, tell the flight attendants before you board to make sure your seat will be good enough for a service dog (Sea-tac kept the seat next to me open – I opted for the isle seat – so that my dog would have more room when they learned of my service dog…again, Sea-tac is amazing)

I think that is all. If I remember anything else, I’ll be sure to update the list. But this is what I did to prepare for my short little 3 day weekend trip. I was also travelling with my service dog, so I had to make sure she was up-to-date with all her shots and had enough food, treats and whatnot. It was all a huge learning experience. Here are a few pictures from the trip =) Our next big trip will be for my sister’s wedding in December. That trip will be much longer (2 weeks) since it will also include Christmas! Yikes! I’m still debating on whether or not my Ellie will come or not =)

Ellie at my feet on her first airplane ride; she did amazing!

She was super shy at first; we weren’t there long enough for her to get used to all the other dogs

Always good to meet up with family; I miss them so much!

Catching up with my first dog Riley who I got when I was 16. Ellie I got when I was 26. Amazing creatures and best friends =)

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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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