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 for my long-awaited button (heavily sedated again). Only the top part comes out of the body. The rest of the tube is 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.
UPDATES (8/19/2010)
My jejunostomy stoma is no longer infected and the granulation tissue seems to be well under control, if not completely gone. I still continue to have normal leakage from the tube but it is clear and slow. I attribute this leakage to a tube that has a loose fit. I don’t mind the fact that it is slightly loose as it allows for the tube to move around a bit when my intestines are moving. A little give in the tube keeps me from possible pain. I am almost completely comfortable at night, sleeping on my stomach (and button). I do not feed during the night still as I feel that 1. it is more normal to feed during the day like you would if you were eating orally and 2. it is more uncomfortable when the connecting tube is hooked up at night and I am trying to sleep on it. That is just my personal experience. Most everyone else I talk to, are night feeders. It is all about personal preference and what works best for you. Through trial and error, you’ll figure it out.
2 Responses
Philip says...
My wife has one with the balloon in it. And has nothing but problems with it. it is extremely painful for her. Where did you have the surgery done. And how can my wife get one of the buttons.
Kirby says...
I had my surgery done at Virginia Mason Medical Center under the supervision of Dr. David Patterson. However, he is now seeing patients at Swedish Medical Center in Seattle. Button tubes are done at the request of the patient and are special ordered and placed by an interventional radiologist. At least, that is how it is done here. For further information, I would contact your gastroenterologist. All buttons are held in place by balloons, so if she is having issues with balloons now, getting a button might not help her problem. Taking some of the fluid out of the button might help – but again, I would look to your gastroenterologist or primary care physician for help with that.