update
I have a date for the removal of the g tube - Dec 15 - one week after the second dilation. The tube has been a blessing and a curse and I wont be sorry to see it go.
Best,
Mick
Comments
-
Yay! Glad that it hasGlenna M said:Great news!!
That's great news, you will be tubeless for Christmas
Sending positive thoughts your way that all will go well with your dilation and you will have no more problems.
Stay well,
Glenna
Yay! Glad that it has really turned around for you and has been so successful. Hoping the second one gets you fixed up good as new. Keep us posted. Good thoughts always coming your way!
Sweet0 -
DILATION
How much time did you give the swallowing before you decided to have a dilation? Do they give substantial relief?
How long have you hsd your tube? I cannot swallow near enough to think about having my tube removed yet.0 -
Got Dilation With PEG Removalluv4lacrosse said:DILATION
How much time did you give the swallowing before you decided to have a dilation? Do they give substantial relief?
How long have you hsd your tube? I cannot swallow near enough to think about having my tube removed yet.
Even though I was able to get in enough calories to maintain my weight, my gastro suggested he have a look (while he had me out for the PEG removal - yep, that's how he did it, no foot on my chest as he yanked - well, not that I know of), and dilate me if it looked like I needed it. He saw constriction, and did the deed; I think it helped.0 -
luv4lacrosseluv4lacrosse said:DILATION
How much time did you give the swallowing before you decided to have a dilation? Do they give substantial relief?
How long have you hsd your tube? I cannot swallow near enough to think about having my tube removed yet.
Hey - getting the dilation was not my decision. My Dr had me wait about 4 months after I could no longer swallow before doing it. Partly it was scheduling and partly it was him wanting the tissue to heal after rads and chemo. Technically the procedure was surgery because they had to tear away tissue that had attached behind my voice box, like a cap over my esophagus. I could no longer swallow from about May so in total it was 6 months without swallowing anything (not even my own spit/mucus, nor could I burp). I got the tube in late March so have had that for 9 months now.
I suspect part of the reason my esophagus closed was because it hurt to swallow and I avoided it. Because of the tube I was fine, indeed I was eating the best food ever and getting really healthy. Had I tried to swallow it might not have closed, but I may have needed a dilation anyway. The dilation did not give relief, in fact it hurt like hell, but I was able to swallow (water) immediately after surgery.
The second will be a 'standard' dilation to see if they can widen it enough to prevent aspirating (at every meal so far). Fingers crossed!
Hopefully yours will be as or more successful. it usually is, statistically speaking.
Best,
Mick0 -
HondoHondo said:Mick
Wishing you the best with the dilation and removing of the PEG. I have never had a dilation yet it is very hard for me to swallow anything but somehow I get it down, my problems is the Jaw can open enough to do the procedure.
Take care my friend
Hey man I hope you are well.
My sense is that a big reason why swallowing becomes problematic after rads and chemo is that the esophagus loses its suppleness, for lack of a better describer. I reckon my 6-year-old son has the same diameter esophagus as I do now, so why can he wolf down a bit of steak with nary a chew, and I have to chew a piece of bread 617 times and down it with a pint of water?
I'm thinking diameter is only part of the story. If the tissue cannot stretch to accommodate the bolus (the mass of food being swallowed) then it will get stuck.
Thinking of you big time Hondo.
Best,
Mick0 -
I can relate to thismicktissue said:Hondo
Hey man I hope you are well.
My sense is that a big reason why swallowing becomes problematic after rads and chemo is that the esophagus loses its suppleness, for lack of a better describer. I reckon my 6-year-old son has the same diameter esophagus as I do now, so why can he wolf down a bit of steak with nary a chew, and I have to chew a piece of bread 617 times and down it with a pint of water?
I'm thinking diameter is only part of the story. If the tissue cannot stretch to accommodate the bolus (the mass of food being swallowed) then it will get stuck.
Thinking of you big time Hondo.
Best,
Mick
Mick - I can relate to the idea of the esophagus losing its suppleness. Much of what I eat does not make it all the way down with the first swallow. I usually have to swallow three or four times, feeling it move lower and lower down each time and then ultimately washing it through with water. I have noted that, at no point is my breathing impaired. Even as I am hustling toward the kitchen for a drink to loosen some food plug, I can still get air around it. And, I'm not aspirating. Interesting.
Deb0 -
lacrosse,luv4lacrosse said:DILATION
How much time did you give the swallowing before you decided to have a dilation? Do they give substantial relief?
How long have you hsd your tube? I cannot swallow near enough to think about having my tube removed yet.
I had my tube for four and a half years. We felt that until I was eating everything orally and nothing from a can (Jevity, that is, via the tube), there was some risk in removing it.
Actually, over the course of those 4.5 years I had FOUR tubes, as the balloons that anchor it within the stomach deflate over time, and this seemed to happen roughly annually. When the balloons deflated, I would wake in the morning to discover the tube missing and my dog beside my bed chewing on it (THAT DIDN'T REALLY HAPPEN), but I DID wake up to find it on the side of the bed a couple of times.
All of this time, I WAS eating, albeit soft stuff, stuff with no real edges, stuff that I could reduce to very small pieces, things like yogurt, ice creams, milkshakes, cream of this-or-that soups, mashed potatoes, that sort of thing. I DID evolve over time, but never really felt comfortable with removing the tube while I was relying on Jevity.
When the last one fell out, I had already had at least one dilation, and was in the midst of something very entertaining and so opted out of heading to the ER for yet another replacement: it was time to rough it.
Even after a second dilation, eating was something of a chore, and it has taken now five years before I finally got my breakthrough. I am eating all kinds of stuff I never thought I would eat again as recently as a year or so ago. In fact this morning I ate eggs benedict (substituted slice of this interesting thin bread for the muffin, ham steak for the canadian bacon, but otherwise, the real deal), followed by meat raviolis for lunch. I eat fish, shrimp, even prime rib on at least one successful occasion (which is really what got the ball rolling for me).
It would not have been possible without the dilations.
I will say this, however, with respect to the lack of aspiration noted by one or more others: I was given barium swallow tests on several occasions; these test your swallow mechanism, but also, of course, where your nutrition is going, since there are two openings available, the desirable esophagus and the gateway to the lungs, the trachea. You would hope, obviously, that everything is directed by your muscles and reflexes and so on down the first of those holes. Otherwise, you may be able to correct it with some training or, worst case, have to avoid some or all things going via the mouth. At least, that was my understanding as I watched via ultrasound as I swallowed all kinds of nasty stuff for the staff.
I had success, which is to say my stuff was going down the right chute, but I must say that since I have started eating/drinking 'fulltime' orally, I noticed I've been coughing.
Now, I am also a lung cancer survivor, so that could raise the hairs on the back of my neck for a different reason, but my current theory (because I want it to be true) is that the coughing is caused by what I am calling micro-aspiration ... just a lit bit of this or that is going down the wrong street.
In any event, I am glad to hear that Mick is continuing on with this treatment. I endorse it whole-heartedly, based on my experiences.
Take care, and best wishes for the day when you, too, can go tube-less,
Joe0 -
SWALLOWINGsoccerfreaks said:lacrosse,
I had my tube for four and a half years. We felt that until I was eating everything orally and nothing from a can (Jevity, that is, via the tube), there was some risk in removing it.
Actually, over the course of those 4.5 years I had FOUR tubes, as the balloons that anchor it within the stomach deflate over time, and this seemed to happen roughly annually. When the balloons deflated, I would wake in the morning to discover the tube missing and my dog beside my bed chewing on it (THAT DIDN'T REALLY HAPPEN), but I DID wake up to find it on the side of the bed a couple of times.
All of this time, I WAS eating, albeit soft stuff, stuff with no real edges, stuff that I could reduce to very small pieces, things like yogurt, ice creams, milkshakes, cream of this-or-that soups, mashed potatoes, that sort of thing. I DID evolve over time, but never really felt comfortable with removing the tube while I was relying on Jevity.
When the last one fell out, I had already had at least one dilation, and was in the midst of something very entertaining and so opted out of heading to the ER for yet another replacement: it was time to rough it.
Even after a second dilation, eating was something of a chore, and it has taken now five years before I finally got my breakthrough. I am eating all kinds of stuff I never thought I would eat again as recently as a year or so ago. In fact this morning I ate eggs benedict (substituted slice of this interesting thin bread for the muffin, ham steak for the canadian bacon, but otherwise, the real deal), followed by meat raviolis for lunch. I eat fish, shrimp, even prime rib on at least one successful occasion (which is really what got the ball rolling for me).
It would not have been possible without the dilations.
I will say this, however, with respect to the lack of aspiration noted by one or more others: I was given barium swallow tests on several occasions; these test your swallow mechanism, but also, of course, where your nutrition is going, since there are two openings available, the desirable esophagus and the gateway to the lungs, the trachea. You would hope, obviously, that everything is directed by your muscles and reflexes and so on down the first of those holes. Otherwise, you may be able to correct it with some training or, worst case, have to avoid some or all things going via the mouth. At least, that was my understanding as I watched via ultrasound as I swallowed all kinds of nasty stuff for the staff.
I had success, which is to say my stuff was going down the right chute, but I must say that since I have started eating/drinking 'fulltime' orally, I noticed I've been coughing.
Now, I am also a lung cancer survivor, so that could raise the hairs on the back of my neck for a different reason, but my current theory (because I want it to be true) is that the coughing is caused by what I am calling micro-aspiration ... just a lit bit of this or that is going down the wrong street.
In any event, I am glad to hear that Mick is continuing on with this treatment. I endorse it whole-heartedly, based on my experiences.
Take care, and best wishes for the day when you, too, can go tube-less,
Joe
I had a Barium Swallow Test that did reveal what I was swallowing was going into the Esophagus and not the Trachea. My esophagus currently is very swollen, but 2 weeks after having the swallow test, I am able to get down mpre food and it seems to be easier. I hope it is just a time issue before I can swallow more types of food.
Thanks
MIKE0 -
PSsoccerfreaks said:lacrosse,
I had my tube for four and a half years. We felt that until I was eating everything orally and nothing from a can (Jevity, that is, via the tube), there was some risk in removing it.
Actually, over the course of those 4.5 years I had FOUR tubes, as the balloons that anchor it within the stomach deflate over time, and this seemed to happen roughly annually. When the balloons deflated, I would wake in the morning to discover the tube missing and my dog beside my bed chewing on it (THAT DIDN'T REALLY HAPPEN), but I DID wake up to find it on the side of the bed a couple of times.
All of this time, I WAS eating, albeit soft stuff, stuff with no real edges, stuff that I could reduce to very small pieces, things like yogurt, ice creams, milkshakes, cream of this-or-that soups, mashed potatoes, that sort of thing. I DID evolve over time, but never really felt comfortable with removing the tube while I was relying on Jevity.
When the last one fell out, I had already had at least one dilation, and was in the midst of something very entertaining and so opted out of heading to the ER for yet another replacement: it was time to rough it.
Even after a second dilation, eating was something of a chore, and it has taken now five years before I finally got my breakthrough. I am eating all kinds of stuff I never thought I would eat again as recently as a year or so ago. In fact this morning I ate eggs benedict (substituted slice of this interesting thin bread for the muffin, ham steak for the canadian bacon, but otherwise, the real deal), followed by meat raviolis for lunch. I eat fish, shrimp, even prime rib on at least one successful occasion (which is really what got the ball rolling for me).
It would not have been possible without the dilations.
I will say this, however, with respect to the lack of aspiration noted by one or more others: I was given barium swallow tests on several occasions; these test your swallow mechanism, but also, of course, where your nutrition is going, since there are two openings available, the desirable esophagus and the gateway to the lungs, the trachea. You would hope, obviously, that everything is directed by your muscles and reflexes and so on down the first of those holes. Otherwise, you may be able to correct it with some training or, worst case, have to avoid some or all things going via the mouth. At least, that was my understanding as I watched via ultrasound as I swallowed all kinds of nasty stuff for the staff.
I had success, which is to say my stuff was going down the right chute, but I must say that since I have started eating/drinking 'fulltime' orally, I noticed I've been coughing.
Now, I am also a lung cancer survivor, so that could raise the hairs on the back of my neck for a different reason, but my current theory (because I want it to be true) is that the coughing is caused by what I am calling micro-aspiration ... just a lit bit of this or that is going down the wrong street.
In any event, I am glad to hear that Mick is continuing on with this treatment. I endorse it whole-heartedly, based on my experiences.
Take care, and best wishes for the day when you, too, can go tube-less,
Joe
It hasn't taken five years since the second dilation to begin eating! As I re-read my post to lacrosse, that was the story I took from it. No, it has taken five years to get to the point where I am eating like this, eating slowly, to be sure, but with a WHOLE lot more options than I had even six months ago.
My second dilation was within the last year, within the last nine months, I think. I do not know or understand the dynamics of it, but it didn't 'take' as quickly as I would have liked. But 'take' it has of late.
Hope I didn't scare anyone with that And please bear in mind that I had some interesting surgery to tongue, face, and neck, and it was that surgery, along with the subsequent radiation and chemotherapy that I was referencing as its having been five years.
Those dilations work. Mine did, anyway.
Take care,
Joe0 -
Hi Mickmicktissue said:Hondo
Hey man I hope you are well.
My sense is that a big reason why swallowing becomes problematic after rads and chemo is that the esophagus loses its suppleness, for lack of a better describer. I reckon my 6-year-old son has the same diameter esophagus as I do now, so why can he wolf down a bit of steak with nary a chew, and I have to chew a piece of bread 617 times and down it with a pint of water?
I'm thinking diameter is only part of the story. If the tissue cannot stretch to accommodate the bolus (the mass of food being swallowed) then it will get stuck.
Thinking of you big time Hondo.
Best,
Mick
You are so right on losing the flexibility and size and then trying to get it all down by drinking a gallon of water every time you eat.
I will be on my way this Wednesday to see yet another ENT in Houston, he got a long title an ENT Otolarymgology, I just hope he is better then my Local ENT who thinks all my problems are due to still having Cancer. I am hopeful that he will be able to help me with the ear & head pain and maybe the jaw problem aswell. Then I am hoping somewhere to do a dilation and try to get some of the swallowing back again.
Take care my friend
Hondo0 -
MickHondo said:Hi Mick
You are so right on losing the flexibility and size and then trying to get it all down by drinking a gallon of water every time you eat.
I will be on my way this Wednesday to see yet another ENT in Houston, he got a long title an ENT Otolarymgology, I just hope he is better then my Local ENT who thinks all my problems are due to still having Cancer. I am hopeful that he will be able to help me with the ear & head pain and maybe the jaw problem aswell. Then I am hoping somewhere to do a dilation and try to get some of the swallowing back again.
Take care my friend
Hondo
Thinking today is your s-t-r-e-t-c-h-I-n-g...... Sending out those good vibes for ya.
Sweet0 -
stretchingsweetblood22 said:Mick
Thinking today is your s-t-r-e-t-c-h-I-n-g...... Sending out those good vibes for ya.
Sweet
I am with you Sweet, hopping a lot of good stretching going on there for you today Mick0 -
thankssweetblood22 said:Mick
Thinking today is your s-t-r-e-t-c-h-I-n-g...... Sending out those good vibes for ya.
Sweet
Hey Sweet and Hondo - the stretching is tomorrow at 3:45 pm PST, I'll be feeling you then!
Best,
Mick0 -
yeah, i went half the daymicktissue said:thanks
Hey Sweet and Hondo - the stretching is tomorrow at 3:45 pm PST, I'll be feeling you then!
Best,
Mick
yeah, i went half the day thinking it was wednesday. its a good thing i realized it was tuesday, because i would have missed my belly dance class! i swear i have radiation brain. good thing a person can't have too many good thoughts or prayers coming their way. 0 -
Thinking of yousweetblood22 said:yeah, i went half the day
yeah, i went half the day thinking it was wednesday. its a good thing i realized it was tuesday, because i would have missed my belly dance class! i swear i have radiation brain. good thing a person can't have too many good thoughts or prayers coming their way.
Mick hope you see even more improvement after today's dilation.
Hondo, I'm praying for some answers for you.
Lisa0 -
Deed is Done?micktissue said:thanks
Hey Sweet and Hondo - the stretching is tomorrow at 3:45 pm PST, I'll be feeling you then!
Best,
Mick
Hope you're noticing an improvement.0
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