Same ol' crap
He is still very sore and constipated. He had another enema at home and 4 laxative pills and stool softeners. I am going with him today and I want a feeding tube put in. He weighed a little over 200 going in and today he is at 147. No muscle mass. I know you have heard me speak of this problem many times, but today we are nipping this in the bud.. I do not know what to do anymore. I have tried several things. I am at the point that I think he is so stubborn, if he can't eat what he wants, he will not eat at all. Because, he sure does not like the nutrition drinks, and we have tried several of them. I had him on milkshakes with whey protein. But, he got burnt out on them and said they are gross. AAARRRGGGHHH!!!! i am afraid his body is so weak that if he gets an infection, he may not be able to recover. Thanks for listening everyone... : )
Comments
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Sounds Like a Plan
If he's loss 53# in just a few months and is continuing to not eat, I'd presume that his MD's should be concerned and start being more pro-active. If they don't become involved soon everyone is going to be re-active, not a good place to be.
If his medical professionals aren't taking the lead, it might be time to either question them or start looking for someone that has your husband's best interest in mind.
Thoughts & Prayers,
John0 -
I agreeSkiffin16 said:Sounds Like a Plan
If he's loss 53# in just a few months and is continuing to not eat, I'd presume that his MD's should be concerned and start being more pro-active. If they don't become involved soon everyone is going to be re-active, not a good place to be.
If his medical professionals aren't taking the lead, it might be time to either question them or start looking for someone that has your husband's best interest in mind.
Thoughts & Prayers,
John
His doctors should be more concerned about his weight loss at 53lbs. Constipation is normal when in treatment and his doctors should have made you aware of things to do and or gave you the medication he needed to keep him going.
Rising hell is the only way to get help sometimes, its sad but true
Keeping you both in prayers
Hondo0 -
yeah
Your husband's problems are not dissimilar to many of us who either refused the tube or let it go before it's time.
I would concur with you that we at least seem hard-headed when we crave diversity and get tired of the same old shakes and protein products, when we are insisting on what we used to eat, even if we no longer can (for now!). I concur with you that we can be VERY stubborn in our insistence on 'normalcy', even to our own detriment, even when we KNOW it is to our detriment.
It is strange but sometimes true and I speak from personal experience. It has to be just as frustrating for you and probably more so. And that is to say nothing of the food bills that are mounting or will mount (trust me) as he continues trying to eat things he cannot eat at this time.
I had a PEG tube for more than four years and never found any stigma attached to it, but, as you describe your husband, I stubbornly tried to wean myself of it (and I think, by the way, that this is largely a good thing: to have a good goal like this). I have been off of the tube for more than a year now, and have asked two different doctors prior to procedures for other stuff about the possibility of getting it back in there. They have both suggested that I hang in there for the time being, that things will get better.
But, I started out at 215 and am now at 135. I can slip through airport security without causing a blip, I am so skinny. It is not good. I would say I look at least 10 years older than I really am, and well, it is not good.
I think encouraging the tube might be a very good idea, as long as you include the notion that it is not permanent but for his immediate safety and good health.
Go for it!
Best wishes to hub and his family.
Take care,
Joe0 -
Your story is very familiar to ours.
My husband didn't want the PEG either but as rad/chemo effects began in earnest he became unable to swallow effectively; he got constipated and dehydrated which led to inablity to take meds which led to nausea. April 20 in the middle of the night I called the squad, his fever peaked at 103.8 (we'd been at our cancer hospital most of that day, first for his daily rad and then to their OP floor for fluids to stave off dehydration).
Squad took him to ER which led to admission to the cancer hospital until 4/29, he had pneumonia and when barium tested, flunked. For the 3 weeks preceding 4/20 nothing of what he was forcing by mouth had reached his stomach, he was experiencing malnutrition, low potassium and all sorts of other related ailments. A lean fit person, he lost 35 lbs those weeks. During the nine day hospital stay he had the PEG installed and we've never regretted it, quite the contrary.
If I'd have known then what I know now he'd have had the PEG installed when rad started, he agrees with this. In H&N c that involves rad/chemo there are few who can get away without using the PEG. Plus, IT'S NOT BAD! We have great success and now that he's ready to take small bites of food, it provides his base calorie/nutrition needs. Get The PEG.0 -
Great to HearLelia said:Your story is very familiar to ours.
My husband didn't want the PEG either but as rad/chemo effects began in earnest he became unable to swallow effectively; he got constipated and dehydrated which led to inablity to take meds which led to nausea. April 20 in the middle of the night I called the squad, his fever peaked at 103.8 (we'd been at our cancer hospital most of that day, first for his daily rad and then to their OP floor for fluids to stave off dehydration).
Squad took him to ER which led to admission to the cancer hospital until 4/29, he had pneumonia and when barium tested, flunked. For the 3 weeks preceding 4/20 nothing of what he was forcing by mouth had reached his stomach, he was experiencing malnutrition, low potassium and all sorts of other related ailments. A lean fit person, he lost 35 lbs those weeks. During the nine day hospital stay he had the PEG installed and we've never regretted it, quite the contrary.
If I'd have known then what I know now he'd have had the PEG installed when rad started, he agrees with this. In H&N c that involves rad/chemo there are few who can get away without using the PEG. Plus, IT'S NOT BAD! We have great success and now that he's ready to take small bites of food, it provides his base calorie/nutrition needs. Get The PEG.
LOL, there's actually a rather large discussion (post) and one of many on the thoughts concerning the PEG. Under most instances (not all) the PEG is more than likely the best route to approach treatment.
Losing 53# with no plus side in sight makes this (in my opinion) one of those instances where some intervention is needed.
Sounds like you made a good choice in your own situation with your hubby as well.
Glad things are turning around for you and he.
Best,
John0 -
Sorry
That's no good. You're making a good decision. Docs should have put one in to start with. They should always put one in to start with. I understand his not eating thing. Not so much stubborn as just sick; it's one of the side effects and he doesn't have as much control over it as you'd think. I'll be praying for both of you.
Bob0 -
I am hoping somehow he willadventurebob said:Sorry
That's no good. You're making a good decision. Docs should have put one in to start with. They should always put one in to start with. I understand his not eating thing. Not so much stubborn as just sick; it's one of the side effects and he doesn't have as much control over it as you'd think. I'll be praying for both of you.
Bob
I am hoping somehow he will come to his senses if he cannot eat and get a peg or that the docs will make him. I cannot believe they would let him get to this point.
Thinking of you guys-
Sweet0 -
Pegsweetblood22 said:I am hoping somehow he will
I am hoping somehow he will come to his senses if he cannot eat and get a peg or that the docs will make him. I cannot believe they would let him get to this point.
Thinking of you guys-
Sweet
I could not have done without mine. In my opinion it sure helped me with weight & taking in extra fluid's & med's. I did not even question my Dr's decision.0 -
Agreerozaroo said:Peg
I could not have done without mine. In my opinion it sure helped me with weight & taking in extra fluid's & med's. I did not even question my Dr's decision.
Arndog64, I agree with all of the above posts. It would seem your Drs dropped the ball, as has happened in a number of other cases. They were the ones who knew the C and treatment specs on your husband, and should've been aware of the possibility you now experience. Still, however, is in the Dr's court, and all you can do is be as adamant as possible about his condition, and that he needs to get it corrected ASAP by whatever means necessary. And, if the Dr's say a PEG would possibly accomplish this, then it's their job to let him know in no uncertain terms that he has to get it done. Dr's call.
And, you might wanna clue them in on how aware you are of us on the H&N forum, and how many of us got PEGs before treatment (to let him know how ticked you are), and that you know of a number of others who got their PEGs when their conditions had deteriorated to the degree it was obviously needed, and was done.
kcass
(yes, John, I have not abandoned my newfound vows to give it all up to the Drs to decide)0 -
Go Man...Kent Cass said:Agree
Arndog64, I agree with all of the above posts. It would seem your Drs dropped the ball, as has happened in a number of other cases. They were the ones who knew the C and treatment specs on your husband, and should've been aware of the possibility you now experience. Still, however, is in the Dr's court, and all you can do is be as adamant as possible about his condition, and that he needs to get it corrected ASAP by whatever means necessary. And, if the Dr's say a PEG would possibly accomplish this, then it's their job to let him know in no uncertain terms that he has to get it done. Dr's call.
And, you might wanna clue them in on how aware you are of us on the H&N forum, and how many of us got PEGs before treatment (to let him know how ticked you are), and that you know of a number of others who got their PEGs when their conditions had deteriorated to the degree it was obviously needed, and was done.
kcass
(yes, John, I have not abandoned my newfound vows to give it all up to the Drs to decide)
LOL, in this case if they aren't making the decision, it needs to be made for at least the best possible chances of getting needed hydration and nutrition....
Someone definitely needs to take the lead and fix the problem...no excuse for this. This is just small in the big scheme of treatment. Time shouldn't be wasted on something that seems to be a no brainer.
Get the PEG, force the hydration and nutrition and get on with the treatment.
Best,
John0 -
.Skiffin16 said:Go Man...
LOL, in this case if they aren't making the decision, it needs to be made for at least the best possible chances of getting needed hydration and nutrition....
Someone definitely needs to take the lead and fix the problem...no excuse for this. This is just small in the big scheme of treatment. Time shouldn't be wasted on something that seems to be a no brainer.
Get the PEG, force the hydration and nutrition and get on with the treatment.
Best,
John
.0 -
John's "Get the PEG, forceSkiffin16 said:Go Man...
LOL, in this case if they aren't making the decision, it needs to be made for at least the best possible chances of getting needed hydration and nutrition....
Someone definitely needs to take the lead and fix the problem...no excuse for this. This is just small in the big scheme of treatment. Time shouldn't be wasted on something that seems to be a no brainer.
Get the PEG, force the hydration and nutrition and get on with the treatment.
Best,
John
John's "Get the PEG, force the hydration and nutrition and get on with the treatment." comment got me thinking. If he gets too bad, they will stop treatment. I was told by my doctor that they do not want to interupt treatment, that it's not really good to do. My doctor said that you want to hit it hard and make sure you see it thru to make sure you kick it's keister. Maybe telling him that would change his mind. He does not want to go thru this nightmare again.0 -
keistersweetblood22 said:.
.
that is the rub, Sweet, on what makes decisions like the PEG so critical. Going thru treatment again is far from a best case scenario, with the body only capable of getting so many rads without unacceptable nerve and tissue damage. There's a reason why treatment is like it is with the different chemo and rad schedules- so that C's keister is kicked out of the patient. And if interruptions can be avoided- that's best case. And, yes, perhaps if everyone got a PEG it would better the odds that fewer patients would get sick and have their treatments put on hold for however long.
Of note, even with the PEG I got sick in weeks #5 and #6 and could go thru no rads. Turns out I had a lung infection, according to the Drs, and spent 4 nights in the hospital in #6.
So, my treatment saw an interruption of two weeks. Even so, they did fewer rads than originally planned, and that had nothing to do with my condition being bad- quite the opposite. Keep in mind my radical two-pump/session chemo delivery, and the second 96-hour chemo flooding was in week #4, which I tell you to explain why I got so sick. Slight interruptions might not be a big deal, but we all know that no interruptions is the ideal, because we're already getting the weekend off.
Arndog64- please keep us posted
kcass0 -
Suggestion
Hi there:
I agree that weight loss is something to be concerned about. We were just extremely best that his rad. onc. and reg. onc. was so proactive about keeping weight up. My husband wasn't a big person to start with. However, he was very good about the ensure, boost, etc. My suggestion is this when Charlie was hospitalized with side effects from first chemo in Dec. 08, he was eating good it was just that his mouth looked like a carton of cottege cheese so that made it difficult to eat. However, one of the nurses made him a milkshake with ensure and ice cream and he really liked that. He didn't have the peg tube till he started radiation but he wasn't stubborn about it and turned out he never used it; it was just there in case he needed it. He had it from March till May! I'm sorry husband is being stubborn, but maybe he'll think differently soon. Also Charlie ate a lot of oatmeal, grits, instant breakfast along with other stuff. Prayers coming your way!
Jan (Basketcase)0 -
Thanks everyone... He wasJan Trinks said:Suggestion
Hi there:
I agree that weight loss is something to be concerned about. We were just extremely best that his rad. onc. and reg. onc. was so proactive about keeping weight up. My husband wasn't a big person to start with. However, he was very good about the ensure, boost, etc. My suggestion is this when Charlie was hospitalized with side effects from first chemo in Dec. 08, he was eating good it was just that his mouth looked like a carton of cottege cheese so that made it difficult to eat. However, one of the nurses made him a milkshake with ensure and ice cream and he really liked that. He didn't have the peg tube till he started radiation but he wasn't stubborn about it and turned out he never used it; it was just there in case he needed it. He had it from March till May! I'm sorry husband is being stubborn, but maybe he'll think differently soon. Also Charlie ate a lot of oatmeal, grits, instant breakfast along with other stuff. Prayers coming your way!
Jan (Basketcase)
Thanks everyone... He was admitted last nigtht for severe constipation and to get the feeding tube installed. That is what she said was going to happen. My husband said she may wait and see and I said why is that, did you guys discuss other options while I was gone. He said no, I just did not hear her order one when I was admitted. So, I hope she is waiting to do that last. I think she probally wants him to have a good bowel movement before they put the peg tube in. Now, he has me nervous thinking they are back peddling on me. But, I think he is kinda out of it, cuz she said she was admitting him for the feeding tube..0 -
taking chargearndog64 said:Thanks everyone... He was
Thanks everyone... He was admitted last nigtht for severe constipation and to get the feeding tube installed. That is what she said was going to happen. My husband said she may wait and see and I said why is that, did you guys discuss other options while I was gone. He said no, I just did not hear her order one when I was admitted. So, I hope she is waiting to do that last. I think she probally wants him to have a good bowel movement before they put the peg tube in. Now, he has me nervous thinking they are back peddling on me. But, I think he is kinda out of it, cuz she said she was admitting him for the feeding tube..
Glad to hear you're moving forward, arndog. The hospital staff taking care of your husband should be able to tell you when he's scheduled for the PEG procedure, if your assigned RN doesn't know, take the next step and ask his/her superior. If husband isn't scheduled and you aren't clear on what to expect, contact the MDs office right away. From the sounds of it, a bm (love how you said 'good' bm) isn't likely without the urging of an enema or suppository, and that's something the RN should know too, or even the PCA.
I found it EXTREMELY helpful to practice using the PEG with the hospital staff while my husband was still a patient. There are no dumb questions when it comes to the PEG or any of this, so after watching them a few times and asking questions, try it yourself with their oversight. It's nerve wracking enough coming home with a very ill spouse, anxiety over using the PEG is easily eliminated. I learned different tricks from 4 separate RNs and all I learned has come in handy, I'm not shy about asking questions.0 -
Glad to hear itLelia said:taking charge
Glad to hear you're moving forward, arndog. The hospital staff taking care of your husband should be able to tell you when he's scheduled for the PEG procedure, if your assigned RN doesn't know, take the next step and ask his/her superior. If husband isn't scheduled and you aren't clear on what to expect, contact the MDs office right away. From the sounds of it, a bm (love how you said 'good' bm) isn't likely without the urging of an enema or suppository, and that's something the RN should know too, or even the PCA.
I found it EXTREMELY helpful to practice using the PEG with the hospital staff while my husband was still a patient. There are no dumb questions when it comes to the PEG or any of this, so after watching them a few times and asking questions, try it yourself with their oversight. It's nerve wracking enough coming home with a very ill spouse, anxiety over using the PEG is easily eliminated. I learned different tricks from 4 separate RNs and all I learned has come in handy, I'm not shy about asking questions.
I'm so glad he's on the road to getting the PEG tube. I'm one that can't say enough good things about it.
Once they get the constipation straightened out and fluids/nutrition going in, he will seem like a different person.
You'll get the hang of managing the tube, quickly.
Lisa0 -
I agree with Skiffin
I lost 25 pounds and they threatened to stop my treatments if I didn't start eating. I hated the nutrition drinks too, but I learned quick to get 6 of them of down a day. I know he feels like crap, but the sooner her eats, the sooner her gets through treatment and the sooner he gets through this thing. I'm eight weeks out now, have gained back 10 pounds and am feeling great.0 -
Tired of Holding Back....arndog64 said:Thanks everyone... He was
Thanks everyone... He was admitted last nigtht for severe constipation and to get the feeding tube installed. That is what she said was going to happen. My husband said she may wait and see and I said why is that, did you guys discuss other options while I was gone. He said no, I just did not hear her order one when I was admitted. So, I hope she is waiting to do that last. I think she probally wants him to have a good bowel movement before they put the peg tube in. Now, he has me nervous thinking they are back peddling on me. But, I think he is kinda out of it, cuz she said she was admitting him for the feeding tube..
You guys need to get this under control...I'm really trying to hold back.... I have a ton of jokes that I've been holding back on...
All of this talk of constipation, being stubborn about eating, high fevers...., man it's all I can do...
I am one of the Abi-Normal and my imagination and sense of humor is killin me....
Hurry up and get this turned around so I can start cutting them....ooops, see they just start slipping out....Oh Man, I need to get off of here for awhile...
Thoughts and Prayers,
John0
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