Living with Gastroparesis

This weekend was a big one and after feeling really down the past few days after struggling with gynecologists and migraines and depression, I really just needed to get over myself and just get out. So I packed the weekend full of activities. Perhaps I overdid it but, that is still yet to be determined.

First we started out Saturday with a 2 hour hike down to a lake with two of our friends and our Bernese Mountain Dog. She almost went swimming, as you can see. By the time we had reached the bottom, Mary and I were frozen solid and quite ready for our 2 hour trip back up. At least it wasn’t raining and the skies were clear. The paths there were interesting. Some were marked with logs pack filled with smooth stones. This sparked much conversation as to how the logs got there through so much thick forest, why they’d need to build such a path and why smooth stones in a place where it frequently rains? I guess by the end of those 4 hours we had run out of things to talk about. But the trees there were amazing, so tall, old and full of all sorts of life. Very beautiful.  Even though I’m totally down for another hike like the one we made to Barclay Lake, because I was nearly frozen solid at the end signals to me the end of my hiking season as well as anyone who frequenly hikes with me. And yes, I did it feeding the whole time – holding extra items in my feeding backpack, even – like treats for my sweet dog

The second trip we took was out to the mall Sunday morning. Ellie, my dog, got to come too. We walked the entirety of Bellevue Square Mall and then raced home to make it in time for any possible guests that might be joining us for the Magnuson Off-leash Park. But no one came =( That’s OK. We enjoyed ourselves alone, walking the long trails of the park with Ellie off leash. It was wonderful, so big and flat with so much free room for them to run and roam and move. At the end of the trail was the beach where the dogs had access to run, jump and play in as much water as they could swim in. Everyone would line up with their tennis ball snapper things and just launch their balls into the water and all at once a tidal wave of dogs would go rolling through the water frantically trying to be the first super dog to find “their” ball. Some fights would break out but that’s expected; it is a very serious and stressful sport. Ellie wasn’t quite ready for that level of competition =)

And yes – all done with backpack and feeding pump. You can be as active as your doctor allows (of course nutrition might not be your only problem so always check with them before attempting something more strenuous.) Just being outside and doing things will help you feel better, if not physically, emotionally. Good luck to everyone out there struggling, there is hope. I’ll update some other news shortly tomorrow. Always feel free to browse this site as the menu has dropdowns with even more information.

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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’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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