still not able too eat

Options
CrimsonRacing
CrimsonRacing Member Posts: 27 Member
Well.................it's right at a year now since I had solid food........My throat is about the size of a straw..........swallow test didn't go too well.......now they are talking about swallowing therapy?????....Doctor said there was not a very big chance of it working and surgery might be necessary........My ENT mentioned they might opt to inject Botox into the muscles and see if they relax.....BOTOX??????????? really?

If that don't work,then we will discuss the surgery option.... :o(

I also seem to have hit a wall in weight gain......Holding at about 140...not losing but not gaining either....I just don't think ensure and all the other stuff I am on is enough to sustain weight gain..........





any input on this would be appreciated.


Richard

Comments

  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    Options
    I may have more questions then answers
    Richard,

    I am sorry to read that you are having a battle with eating solid foods and weight gain. I do have a few questions though.

    You didn't mention if you are swallowing the ensure or are using the PEG Tube. If you are able to swallow fluids, what type of smoothies are you making if you are doing that. I know I made smoothies using either ice cream with a banana and milk to get some calories. I also used yogurt with some milk for a period of time, couldn't taste anything anyway.

    Do you have a problem with fluid build up around your neck and face. I knw you mentioned your neck is the size of a straw, but is it tight and slightly puffy? If it is, the fluid causes the troat inside to narrow as well as swell the neck and tighten everything. The passageway then is smaller and harder to swallow.

    Has anyone mentioned a throat dialation? Several people here have had it done and it helped them.

    What is the weight you want to be at? multiply that weight by 12 and that is the number of calories you need daily to maintain that weight. When I wanted to put on some pounds, I went to Burger King and got the largest chocolate milkshake they sold. I think the calorie in take is around 1,000 calories just for the shake. I know it wasn't the best thing to have do to the sugar in it, but I needed to gain my weight back.

    My Best to You and Everyone Here
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    Options
    richard:
    I think Marine has covered the bases, but let me expand a bit.

    To begin with, if your swallow test did not go to well, as you put it, by all means, you should get yourself into a swallow/speech therapy program at once.

    What generally happens with swallow specialists is that they perform ultrasounds on your vital swallow muscles while you are attempting to swallow various things, from the most basic liquids to puddings and crackers. Surprisingly, in many cases, they find that swallowing thin liquids such as water are the most difficult, by the way.

    Through this process, they can evaluate what is going on and how they can help you fix it, if that is possible, through repetitive sort of exercises and the like. I am not a professional. I was there in the same way you would be.

    Speech therapists, for whatever reason, seem to want to work with your eating skills, too. I do not know why this is, but they do, and you should take advantage of every opportunity to improve. Beyond that, think of physical therapy, a therapist who can work with your muscles to relax them, to stretch them, to exercise them, to make them work better. There is the occasional massage involved so it is well worth the time.

    With respect to Botox, this is the first I have heard of it in this regard. Since the intent is to relax something or other, as you indicate, my guesses would be that they want to relax your jaw muscles or your esophagus or both. If you suffer from trismus (a relative closure of the mouth, making it hard to work inside of it, sort of like lockjaw) then they may want to relax the jaw muscles to make it easier to get their tools inside of your mouth and throat. Alternatively, they may simply want to see what it does to relax your esophagus. I really have no idea.

    In my case, with trismus an element, they used pediatric bite blockers rather than adult ones when they went in for the pandescopy, for the endoscpies, for the dilations. These worked fine. At no time did I receive Botox. But that was just me.

    With respect to surgery, it sounds as though the surgery would be an endoscopy along with a dilation attempt. If this is the case, it is generally an out-patient deal with no cutting involved: they stick the endoscope down your throat to check things out and then they use either a balloon sort of thing to expand a part of your esophagus, or a tube, something I recently learned, to expand pretty much the whole thing.

    They are careful, of course, not to blow up your esophagus, so it generally takes two or three efforts to get it as large as it is likely to get (although you may need to come back if it shrinks). It is relatively painless and well worth the effort if it accomplishes anything.

    If, instead, they are talking about surgery to remove scar tissue, another possibility, I guess, you are on your own: I know nothing about that.

    Marine also mentions a PEG tube. You can have one of these inserted into your stomach and begin feeding through it immediately. Vanity may preclude that option, but I can assure you that unless you are shirtless it is hard to detect, and it DOES allow you to get all of the nutrition you are not getting orally. I suspect you already have one if your throat is, indeed, the 'size of a straw', and therefore would advise that you talk to your nutritionist about changing your caloric intake. Otherwise, if you don't have a PEG tube, please consider getting one. They do not have to be permanent, and most are not, and they can help you get back to your desired weight.

    Again, I am largely expanding on the excellent advice given by Marine. I hope that this is of some value.

    Take care,

    Joe
  • CrimsonRacing
    CrimsonRacing Member Posts: 27 Member
    Options

    richard:
    I think Marine has covered the bases, but let me expand a bit.

    To begin with, if your swallow test did not go to well, as you put it, by all means, you should get yourself into a swallow/speech therapy program at once.

    What generally happens with swallow specialists is that they perform ultrasounds on your vital swallow muscles while you are attempting to swallow various things, from the most basic liquids to puddings and crackers. Surprisingly, in many cases, they find that swallowing thin liquids such as water are the most difficult, by the way.

    Through this process, they can evaluate what is going on and how they can help you fix it, if that is possible, through repetitive sort of exercises and the like. I am not a professional. I was there in the same way you would be.

    Speech therapists, for whatever reason, seem to want to work with your eating skills, too. I do not know why this is, but they do, and you should take advantage of every opportunity to improve. Beyond that, think of physical therapy, a therapist who can work with your muscles to relax them, to stretch them, to exercise them, to make them work better. There is the occasional massage involved so it is well worth the time.

    With respect to Botox, this is the first I have heard of it in this regard. Since the intent is to relax something or other, as you indicate, my guesses would be that they want to relax your jaw muscles or your esophagus or both. If you suffer from trismus (a relative closure of the mouth, making it hard to work inside of it, sort of like lockjaw) then they may want to relax the jaw muscles to make it easier to get their tools inside of your mouth and throat. Alternatively, they may simply want to see what it does to relax your esophagus. I really have no idea.

    In my case, with trismus an element, they used pediatric bite blockers rather than adult ones when they went in for the pandescopy, for the endoscpies, for the dilations. These worked fine. At no time did I receive Botox. But that was just me.

    With respect to surgery, it sounds as though the surgery would be an endoscopy along with a dilation attempt. If this is the case, it is generally an out-patient deal with no cutting involved: they stick the endoscope down your throat to check things out and then they use either a balloon sort of thing to expand a part of your esophagus, or a tube, something I recently learned, to expand pretty much the whole thing.

    They are careful, of course, not to blow up your esophagus, so it generally takes two or three efforts to get it as large as it is likely to get (although you may need to come back if it shrinks). It is relatively painless and well worth the effort if it accomplishes anything.

    If, instead, they are talking about surgery to remove scar tissue, another possibility, I guess, you are on your own: I know nothing about that.

    Marine also mentions a PEG tube. You can have one of these inserted into your stomach and begin feeding through it immediately. Vanity may preclude that option, but I can assure you that unless you are shirtless it is hard to detect, and it DOES allow you to get all of the nutrition you are not getting orally. I suspect you already have one if your throat is, indeed, the 'size of a straw', and therefore would advise that you talk to your nutritionist about changing your caloric intake. Otherwise, if you don't have a PEG tube, please consider getting one. They do not have to be permanent, and most are not, and they can help you get back to your desired weight.

    Again, I am largely expanding on the excellent advice given by Marine. I hope that this is of some value.

    Take care,

    Joe

    not able to eat
    I've been on a PEG since September...........Right now I weigh 140........which is down from 190.......I use a combination of things in shake form that goes thru my PEG.....Water,tea and occasionally Ensure are about the only things going down by mouth......Speech Doctor said absolutely nothing thicker than water.........No solids at all.

    My next ENT appointment is the 27th and I guess we will discuss what to do next......


    I really miss eating........ :o(

    Richard.....
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
    Options
    Another Question Richard
    Hi Richard,

    Joe really gave you an in-depth explanation of some points I was thinking about, I always do like his explanations. Allot of knowledge on this board. Seems like no matter what is asked, someone here has at one time dealt with it.

    I have a quick question for you as you mentioned that you were at 190 lbs and now are at 140 lbs. My question is, do you count calories when you make your mixture for the PEG and also, how do you feed yourself with the PEG. Do you use the bag hanging on the roll around tree? use the syringe with the plunger and push the mixture into the PEG? or do you remove the plunger from the syringe and place the syringe at the end of the flexable hose and gravity feed the mixture into the PEG by moving the syringe up or down to control the flow?

    The reason I ask these questions are two fold. One, the calorie intake is a big thing in gaining weight. Not knowing your height and where you would like to be in weight, you do need to have a few hundred calories over 1,680 ( your current body weight ) each day as your intake. Aim for 2,000 or higher a day if you can.

    PEG feeding, depending on how you are feeding yourself may be holdng you back as to how much you actually take in per day. I know that when I first got home after my surgery, they delivered 10 cases of Nutrin 1.5 and a roll around tree with bags to hang on it. I poured one can in and sat in a chair and it took nearly 1 1/2 hours for that 8 oz can to flow into my stomach. I wasn't going to have anymore of that routine, so I removed the plunger from the syringe and hooked that up to the hose of the PEG. I poured the Nutrin into the syringe at a rate of one can per 10-15 minutes and I was done with my feeding. If I did it faster then the 10 minutes, I became uncomfortable. I also felt as if I could be moving around allot more without being hooked up to that Bag and tree.

    I hope that you have a good outcome soon.

    My Best to You and Everyone Here
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options
    MarineE5 said:

    Another Question Richard
    Hi Richard,

    Joe really gave you an in-depth explanation of some points I was thinking about, I always do like his explanations. Allot of knowledge on this board. Seems like no matter what is asked, someone here has at one time dealt with it.

    I have a quick question for you as you mentioned that you were at 190 lbs and now are at 140 lbs. My question is, do you count calories when you make your mixture for the PEG and also, how do you feed yourself with the PEG. Do you use the bag hanging on the roll around tree? use the syringe with the plunger and push the mixture into the PEG? or do you remove the plunger from the syringe and place the syringe at the end of the flexable hose and gravity feed the mixture into the PEG by moving the syringe up or down to control the flow?

    The reason I ask these questions are two fold. One, the calorie intake is a big thing in gaining weight. Not knowing your height and where you would like to be in weight, you do need to have a few hundred calories over 1,680 ( your current body weight ) each day as your intake. Aim for 2,000 or higher a day if you can.

    PEG feeding, depending on how you are feeding yourself may be holdng you back as to how much you actually take in per day. I know that when I first got home after my surgery, they delivered 10 cases of Nutrin 1.5 and a roll around tree with bags to hang on it. I poured one can in and sat in a chair and it took nearly 1 1/2 hours for that 8 oz can to flow into my stomach. I wasn't going to have anymore of that routine, so I removed the plunger from the syringe and hooked that up to the hose of the PEG. I poured the Nutrin into the syringe at a rate of one can per 10-15 minutes and I was done with my feeding. If I did it faster then the 10 minutes, I became uncomfortable. I also felt as if I could be moving around allot more without being hooked up to that Bag and tree.

    I hope that you have a good outcome soon.

    My Best to You and Everyone Here

    Confused.
    I need clarification. Do you know if you have a stricture? Or did you 'lose your swallow'? Like is it the muscles, or is it like me, where you have a blockage because of radiation damage?

    What's weird is usually water or thin liquids are harder to swallow than thicker liquids. Could always swallow, I didn't 'lose my ability' the radiation damaged my esophagus, like Joe's mine is up higher, which is usually harder to stretch. I know ive talked a bit to you before. I've had 3 dialations. One time they went in through my peg tube hole. They can barely get the pediatric scoop in my mouth. My mouth doesn't open very wide at all. The first time they stretched me after cancer, but actually my 2nd time I have been stretched, they took me from 2mm to 9mm. I could barely get yogurt down past the stricture. After the next one, I could swallow minced foods. Yesterday I 'choked' on one piece of barley that got stuck. It was stuck in there for 20 minutes. Somehow I missed chewing that one piece and one piece of whole barley cannot pass thru my stricture. So I'm thinking I cannot be wider than a straw.

    I had my peg for 18 months and finally was able to drink enough calories to get rid of it. I've gained 13 -15 pounds since I got it out. Two reasons I was able to accomplish that was because 1. My body has finally become healthier and stabilized as far as calorie consumption goes. I was taking in 2400 cals and gaining any weight at one point. Now I'm back down to 1600-1800 a day. 2. I have learned how to prepare foods so that I can actually swallow them. My mini chopper, emulsifier and juicer are invaluble. I still drink more than half of my daily calories every day. I don't drink anything without calories. My drinks with dinner are whole fruit smoothies. I get 3-5 servings of fruit a day and 5-7 of veg every day.

    Never heard about the Botox. If it's a stricture, I would ask about getting a dialation. If it's lymphadema, massage and therapy. Speech therapist or pathologist.

    What happens if you try and drink a smoothie?
  • Maxs gramma
    Maxs gramma Member Posts: 3
    Options
    Botox
    My husband had his first chemo treatment in June of 2010. He started his radiation therapy on the Tuesday after Labor Day. He has not been able to swallow since the end of the radiation treatments. When I say he can't swallow, he cannot even swallow his own spit. He has had swallow therapy, swallow studies, several dialations, and now he has had a Botox injection into the muscle around his espaphagus. Dr. says this may or may not work. They still cannot tell us why he cannot swallow. Will let you know if the botox works.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options

    Botox
    My husband had his first chemo treatment in June of 2010. He started his radiation therapy on the Tuesday after Labor Day. He has not been able to swallow since the end of the radiation treatments. When I say he can't swallow, he cannot even swallow his own spit. He has had swallow therapy, swallow studies, several dialations, and now he has had a Botox injection into the muscle around his espaphagus. Dr. says this may or may not work. They still cannot tell us why he cannot swallow. Will let you know if the botox works.

    I would definitely like to
    I would definitely like to know if the Botox thing works.