Thursday, August 31, 2006
One Big Whine
Feel free to skip this if you would like, as I am feeling a little low, after spending too much time since Monday trying to digest an unpalatable truth and this falls into the area of way too much information. I may or may not leave this up, but oddly enough, it helps my thoughts to put them down here.
My doctor wants me to consider what is called a PET, or percutaneous endoscopic gastrostomy. This is a tube that would lead directly into my stomach from the abdomen slightly above the waist. He feels that it is getting time to consider it, since I am having difficulty with swallowing, and this would allow me to still eat some orally, but when things are too rough, would ensure I still get sufficient nutrition. The up side is that he seems to feel that this is a long term sort of thing and that I have sufficient time to make use of it. The down side is that the idea of it horrifies me. Another invasive thing, taking away another part of me - the start of the end to meals with my family and another step down this road I am travelling. Cooking full meals for everyone else but only eating the soft parts myself was bad enough, but I wanted to at least make Thanksgiving intact, as the day and the meal together has always been a big thing for us.
I am sad and preoccupied, tired mentally and incapable of making a decision just now. I think I will just put this procedure behind one of the doors in my mind's corridor and leave it in there for a little while to allow myself time to come to terms with it. It's time to watch TV, read and spend time with family and friends for a while. Look for me in your blogs and thanks to those who stayed to the end of this ramble.
My doctor wants me to consider what is called a PET, or percutaneous endoscopic gastrostomy. This is a tube that would lead directly into my stomach from the abdomen slightly above the waist. He feels that it is getting time to consider it, since I am having difficulty with swallowing, and this would allow me to still eat some orally, but when things are too rough, would ensure I still get sufficient nutrition. The up side is that he seems to feel that this is a long term sort of thing and that I have sufficient time to make use of it. The down side is that the idea of it horrifies me. Another invasive thing, taking away another part of me - the start of the end to meals with my family and another step down this road I am travelling. Cooking full meals for everyone else but only eating the soft parts myself was bad enough, but I wanted to at least make Thanksgiving intact, as the day and the meal together has always been a big thing for us.
I am sad and preoccupied, tired mentally and incapable of making a decision just now. I think I will just put this procedure behind one of the doors in my mind's corridor and leave it in there for a little while to allow myself time to come to terms with it. It's time to watch TV, read and spend time with family and friends for a while. Look for me in your blogs and thanks to those who stayed to the end of this ramble.
# posted by Surveysez @ 6:51 PM 
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*hugs Sez*
I know what you mean..wanting to ignore problems and just put them on the back burner, hoping they'll go away. That's what I do.
I've worked with people who have a PEG because of swallowing problems. They were still able to work and be active. It was a way to supplement their nutrition. How are you doing with soft foods? Are you pureeing any of your food now?
I know it sounds scary. Keep talking with others about your worries and fears.
Love, Puffy
I know what you mean..wanting to ignore problems and just put them on the back burner, hoping they'll go away. That's what I do.
I've worked with people who have a PEG because of swallowing problems. They were still able to work and be active. It was a way to supplement their nutrition. How are you doing with soft foods? Are you pureeing any of your food now?
I know it sounds scary. Keep talking with others about your worries and fears.
Love, Puffy
Oh Puffy - things like cottage cheese and that packaged crab meat play a large part in my protien. Some types of crackers and breads (that can be easily sort of dissolved with a drink of water) factor in, as well as a lot of pasta. Oddly enough, veggies (have to be cooked) are something that can be tolerated. And everthing has to be so fairly bland, due to an ulceration that burns from spice. Who would ever have though chocolate could be irritating?
I don't puree anything yet, as my go round with having to drink some of those food replacements last year left a sad feeling. What I do find myself doing is taking a piece of what I know I cannot eat (like the steaks I love so much) and chewing it up and not swallowing. Not a waste as I am still getting the taste.
I know I have to eventually make decision, just not today.
I don't puree anything yet, as my go round with having to drink some of those food replacements last year left a sad feeling. What I do find myself doing is taking a piece of what I know I cannot eat (like the steaks I love so much) and chewing it up and not swallowing. Not a waste as I am still getting the taste.
I know I have to eventually make decision, just not today.
It is such a personal decision. I completely understand how you would not want to do it. Are there others that have had it that you could talk to?
Does this mean you won't be able to eat at all? How would the tube help get you nutrition? I mean would you have a machine like in a hopsital at home?
Big hugs for you, Survey. Please continue to post whatever you feel comfortable doing and know that we are here for you to sound off on.
{{{HUGS}}} and a big smooch for you!
Does this mean you won't be able to eat at all? How would the tube help get you nutrition? I mean would you have a machine like in a hopsital at home?
Big hugs for you, Survey. Please continue to post whatever you feel comfortable doing and know that we are here for you to sound off on.
{{{HUGS}}} and a big smooch for you!
Zomb-I didn't eat for over two months last oct & nov. I had one of those horrid nasal feeding tubes then. This has the same effect, only more permanent and not as uncomfortable. There is a little pump that pumps the liquid nutrition in through the tube, and no, you don't have to eat. If you can still swallow okay, with the PEG you can still choose to eat some things. All way too Terry Shavio-ish for me just now.
And thanks to all for the hugs & smooches. They mean a lot.
And thanks to all for the hugs & smooches. They mean a lot.
On the up side, I can tell you this whole year has been diet plan that has enabled me to loose weight that I though I never would. On second thought, never mind.
Survey, I can send you some turkey breast you can eat with a spoon, so soft and tender it is! How much would you like?
*hugs & kisses*
I would let a decision like this kick around in back somewhere for a while too.
*hugs & kisses*
I would let a decision like this kick around in back somewhere for a while too.
Smoothies are always yummy.
Zombs, sometimes if people have the PEG at home, they aren't hooked up to a machine to get the nutrition. Sometimes, a can of ensure is poured into the tube and voila...there you go!
Zombs, sometimes if people have the PEG at home, they aren't hooked up to a machine to get the nutrition. Sometimes, a can of ensure is poured into the tube and voila...there you go!
I'm glad you posted this and I read it. You should feel free to share with us. We are here for you. Sucks to have those tough decisions. {{{hugs}}} ...and ditto what Puffy & Zombs said.
{{hugs}}
I'm glad you have this place to get your thoughts down. It's not a whine at all, it's an important part of your life, and I wish I could somehow help.
{{more hugs}}
I'm glad you have this place to get your thoughts down. It's not a whine at all, it's an important part of your life, and I wish I could somehow help.
{{more hugs}}
*hugs* Your feelings are justified, I'm sure. However, consider the alternative. Being too sick to even get out of bed at Thanksgiving because you haven't been taking in calories.
It's a big decision & I cannot imagine how much of a struggle this must be. Please continue to talk to us about this stuff. I feel better knowing how you are doing, whether it's a good day or bad.
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It's a big decision & I cannot imagine how much of a struggle this must be. Please continue to talk to us about this stuff. I feel better knowing how you are doing, whether it's a good day or bad.
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