Living with Gastroparesis

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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I’ve been fighting a bit with granulation tissue since my infection cleared up. The granulation tissue has been draining something nasty, bleeds a bit but surprisingly doesn’t hurt. It is growing more inside than outside which has made it difficult to treat. My doctor has taken silver nitrate sticks to burn off, or cauterize, the growing tissue. It is a painless procedure but does cause soreness a few hours later. The tissue will die and form a scab that will later just fall off.

The unusually high drainage from the granulation tissue keeps the wound moist. Perhaps that is the reason it has been continually infected. This will be something I’ll need to watch.

UPDATE (8/26/10)

We had great success with keeping the granulation tissue from advancing further in my system. In fact, the Nitrate Sticks worked so well (and painlessly), I have yet to find any remaining granulation tissue. It isn’t a cure, and will most likely come back despite my best efforts, but for now – the pain, swelling and drainage has stopped and I haven’t had an infection since =)

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I post pictures here only so those who think they may have one, have some sort of idea of what one might look like. In any case, my stoma has now become infected, once again. It happens so frequently that I don’t even need to go in for an appointment anymore. I just call my doctor or surgeon and they call in a prescription. It doesn’t bother me so much anymore other than the fact I’m rather drained of energy. I’m OK in the morning and early afternoon but come 4 or 5pm, I sort of hit a wall and start feeling ill and tired (and grumpy). So I try to get everything done before the early afternoon and it all seems to work out OK. The button is still wonderful and all the work that my doctors and I put in to get one for me, is still completely worth it. I LOVE it and recommend anyone with a tube to get one, if possible.

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After many months of waiting and some surgical complications, I was fitted with my Mic-key balloon button on the 27th of July. I could not be happier with it. Since my surgical tube was placed so far down my intestine, it was no longer accessible via endoscopy, and had to be changed, placed and measured through Interventional Radiology. I found out a gastrostomy button cannot be used in place of a jejunostomy. Because the intestines lack holding chambers for food, a long tube with ports or holes must still be used to deliver nutrition via pump.  A gastrostomy button has no such tube, so formula fed through it would simply build up beneath the tube site.

So the process of getting a jejunostomy button involves 2 parts. First, you must be measured for your button. Depth and width of your stoma is measured to make sure you receive a properly fitting button. To measure, your old tube is taken out. This part excited me because a new shiny tube was put in its place.

This is the first time I had an internal bolster that was a balloon. The other two tubes were either held in place with stitches (sucky) or by a piece of plastic. I prefer the non-balloon tubes because there is less movement and I feel they are slightly more secure when you have a 45 pound puppy pulling at it. But after my last attempt at a button, they would not allow anything but a balloon tube/button to be used.

After I was measured for my button and the new tube placed (I was heavily sedated for both of these processes), an order was placed for a new button that would fit. A week later I was back in Interventional Radiology getting fitted by Dr. Justin Siegal for my long-awaited button (heavily sedated again). The end part is the only section that is outside the body with the rest inside.

Totally still drugged up but, I love this guy!

Walking around shortly after being awoken from sedation.

Showing Dr. Patterson my new button!

Still blue from that antiseptic stuff and a bit swollen but it is still pretty!

Final product! After all the work, complications and appointments – I have my button =)

It took approximately 1 hour for the procedure with another hour of recovery. There was very little pain experienced and anything I did experience I attribute to the fact that it was the first time I had a balloon in my intestine. If anyone is considering switching from a tube to a low-profile button, I 100% recommend it. The freedom you get with the button is amazing and it is just plain more attractive. Thanks to all who have put up with me, in my quest for a jejunostomy low-profile button. It is very much appreciated =)

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I have an appointment on Wednesday to get measured for a new button and if they have the one I need in stock, they will place it. I will most likely be sedated and stay overnight due to the events of my last procedure. This will all be done via Interventional Radiology. I am hoping for the best as this current tube is continually infected and smelly. I am greatly anticipating my new button and while excited, I’m still hesitant and a bit scared because of what happened last time. I’m sure that everything will go great and that the last time was that 1% of patients with complications.

It has been warm here the past few weeks and I have noticed an increase in GP symptoms. I have read the stories of others and they too, notice changes in their symptoms when the weather gets hot. I’m not sure why this is, but I’m not a fan. I’ve noticed more nausea, fatigue and pain. I’ve been tube feeding more than normal because of all that and am thankful everyday I have that option. I look forward to the fall and winter when the heat settles down and allergies are under control.

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