Living with Gastroparesis

There were some interested in how a tube feed gets set up and how everything works together. I have made a simple video of how I start a tube feed from beginning to end. I hope it is helpful.

I am doing supplemental feedings. This means that I get some of my nutrition orally. I typically take in 1200 calories over night and eat what I can during the day. This is limited to the GP diet and often consists of carbohydrates such as pasta, rice and bread (toast). Absolutely nothing fried, fatty or high in fiber (vegetables and most fruits). I find it works best to keep to the bland diet. Sometimes there are things that I eat and pay for later. I know what they are and know well in advance that eating it will cause issues. It is just worth it at times to eat something I don’t normally get to eat (like chocolate covered strawberries!).

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I have been fighting with a migraine for the past few weeks, taking excedrin migraine every day. I think I topped out at 10 and still continued to have a migraine. It progressively got worse each day. Only at night was it tolerable when I was able to sleep it off, but last night, I was given no such gift. I counted down the hours until my doctor’s office opened, to see what they could do to help.

When I got in around 10am, I was given an injection of Toradol and waited around for another 15-20 minutes to make sure it 1. worked and 2. I didn’t have any adverse side effects. 20 minutes came and went with little to no relief from the injection. I was then informed that it was likely due to my low body fat, in that it just didn’t absorb enough. The only other option was oral medication by prescription for the same drug that was injected.

I found myself stuck between a rock and a hard place given that I have absorption issues with my stomach too. I’ve taken one dose of the prescription migraine medicine and I’m still deciding on whether it is working or not. It could have gone away on its own just as well. Time will tell and while I wait, I hope that a completely sleepless night will keep me tired enough to sleep through tonight. I have things I want to do tomorrow and I’ll need the energy!

I have found that with a rise in temperature, my symptoms increase accordingly (nausea, migraines, stomach aches, etc.). I have had issues trying to feed without feeling absolutely miserable and sick. I hide away in the darkest parts of my house in hopes of escaping the heat pounding on the walls of my home. We’ve even gone out to the movies just to be in a place with AC. It helps a little but the only thing that keeps me going is the thought of it cooling down, as forecasted. I can’t wait for it to be nice outside and to have the opportunity to properly feed.

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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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