encountering trouble again.....

crystalbay

My ivor Lewis was mid-May and until the last 2 weeks, I've had multiple complications digestively. The last 8 days have been smooth - able to eat, hydrate & maintain the same
low weight the whole time. Today, I couldn't eat at all and felt full. Bowels haven't moved in 3 days but til then had been quite frequent and health-looking. I'm scared of losing any more weight because I'm already dangerously thin. I'd really thought I had this licked until today. Now, I'm back to obsessing over how I can possibly eat enough to stay alive. I need
encouragement & advice. How long does it take for your digestive system to even out and stop causing weird sensations & problems?? Can it be that until my bowels empty, my appetite will
remain gone?? I don't know what to think. Just scared.

zinniemay

Not sure
I am not sure if I can help you with this but I am sure others will have ideals. When this happens to my husband , he takes stool sofeners . BUt he eats . Sometimes it is finding something he will eat. I always love Potato soup he hated it, yet when he came home his taste or what little he had , seam to have changed. He now likes it. So maybe if you can try something different? Everyone is different so to suggest something to some one else may not work for them.
I wish I knew how to help you with the fear. That could be causing some of the problem with eating . I just have no answer that would be good enought to help.
Maybe since your bowels have not moved makes you feel full. When this happens to me I drank strong instant coffee! But that is me.
Sorry I can't help but I want you to know I do care.
Jennie

Donna70

zinniemay said:

Not sure
I am not sure if I can help you with this but I am sure others will have ideals. When this happens to my husband , he takes stool sofeners . BUt he eats . Sometimes it is finding something he will eat. I always love Potato soup he hated it, yet when he came home his taste or what little he had , seam to have changed. He now likes it. So maybe if you can try something different? Everyone is different so to suggest something to some one else may not work for them.
I wish I knew how to help you with the fear. That could be causing some of the problem with eating . I just have no answer that would be good enought to help.
Maybe since your bowels have not moved makes you feel full. When this happens to me I drank strong instant coffee! But that is me.
Sorry I can't help but I want you to know I do care.
Jennie

MOM works for me
Hi Crystal,
What I try to do is not let it go 3 days because you feel miserable. I take stool softeners and Milk of Magnesia and that seems to always work. I could still eat if I got constipated but I felt more of an appetite if I took care of it. I also did what Jennie is suggesting, I would wake up early and have a half cup of coffee and sometimes a little orange juice and there is a prune juice product that is not as harsh as regular prune juice called PlumSweet that helped too. You were just operated on in May and I know you had complications so it is going to take you time to start gaining weight and maintaining. My surgery was December and I just started to gain within the last month but I had to have post op chemo so that put me back. Good luck, hope you feel better soon. Prayers for all,
Donna70

MOE58

Chrystal,

Hi its nice to meet you and I am MOE58, i was a caregiver to my X husband, during his surgery which was this time last year so I have walked alot of shoes through out all this. You will continue to have digestive problems, you have to remember you have a new stomach, and it is trying to assume all this new stuff you are putting in there, so some things are just not going to agree with you it will take up to 9 months to year to really get your digestive system back to where it was, you have to eat smaller meals, and to help you our specialist said that don't eat peelings like off potatoes, eat white bread nothing with seeds in it etc like that as this has too much fiber, and too much fiber doesn't digest in your new stomach, your best meals is going to be chicken and fish that lots of protein, and peanut butter, the more protein the better. Don't be scared this is all normal, jello pudding is good for inbetween meals, stay away from suger like sweets, milk, they will tear your stomach up and you will be in the bathroom alot this is called dumping syndrome. Also if you are still on pain pills that will also make you constipated, of course Jeff had to stay on them longer than normal as he had complications after surgery like with his lungs, not the surger, now he was only 45 years old when diagnosed, it has been a year and just now eating what he wants, of course he cant eat tough meat or it sends him to the hospital with removal of food in his throat. not fun.

There is another person on this site named DONNA70 and she went through the same kind of surgery.

If you want to go back on some of my posts from last year you will see alot of postings.

If I can help further please let me know

Lori/aka moe58

MOE58

Chrystal,

Hi its nice to meet you and I am MOE58, i was a caregiver to my X husband, during his surgery which was this time last year so I have walked alot of shoes through out all this. You will continue to have digestive problems, you have to remember you have a new stomach, and it is trying to assume all this new stuff you are putting in there, so some things are just not going to agree with you it will take up to 9 months to year to really get your digestive system back to where it was, you have to eat smaller meals, and to help you our specialist said that don't eat peelings like off potatoes, eat white bread nothing with seeds in it etc like that as this has too much fiber, and too much fiber doesn't digest in your new stomach, your best meals is going to be chicken and fish that lots of protein, and peanut butter, the more protein the better. Don't be scared this is all normal, jello pudding is good for inbetween meals, stay away from suger like sweets, milk, they will tear your stomach up and you will be in the bathroom alot this is called dumping syndrome. Also if you are still on pain pills that will also make you constipated, of course Jeff had to stay on them longer than normal as he had complications after surgery like with his lungs, not the surger, now he was only 45 years old when diagnosed, it has been a year and just now eating what he wants, of course he cant eat tough meat or it sends him to the hospital with removal of food in his throat. not fun.

There is another person on this site named DONNA70 and she went through the same kind of surgery.

If you want to go back on some of my posts from last year you will see alot of postings.

If I can help further please let me know

Lori/aka moe58

Tina Blondek

Welcome
Hello Chrystal and welcome to our ec discussion board family! I tried to get on the chat line with you yesterday, but had trouble logging on. I was a caregiver for my dad. He passed away in March after a 16th month battle with EC. The ec went into remission, but then went to his liver. You are not alone here. We are all here for you. As far as constipation goes, this is a normal side effect. You have to get on some kind of a laxative to help you move your bowels. This is why you are feeling so full. My dad was on Lactalouse. He had to take it 2x a day, and then once he went, 1x a day forever. This works very well. You have to keep taking it daily. You will be ok once you get all the kinks out. You might want to consider a feeding tube, you do not want to lose any more weight. Come here often, we are always here.
You take care, and know we will be praying for you.
Peace,
Tina

crystalbay

Tina Blondek said:

Welcome
Hello Chrystal and welcome to our ec discussion board family! I tried to get on the chat line with you yesterday, but had trouble logging on. I was a caregiver for my dad. He passed away in March after a 16th month battle with EC. The ec went into remission, but then went to his liver. You are not alone here. We are all here for you. As far as constipation goes, this is a normal side effect. You have to get on some kind of a laxative to help you move your bowels. This is why you are feeling so full. My dad was on Lactalouse. He had to take it 2x a day, and then once he went, 1x a day forever. This works very well. You have to keep taking it daily. You will be ok once you get all the kinks out. You might want to consider a feeding tube, you do not want to lose any more weight. Come here often, we are always here.
You take care, and know we will be praying for you.
Peace,
Tina

Tina, thank you. Why didn't
Tina, thank you. Why didn't I know about this site half a year ago when I had to make
life-altering decisions????? About six weeks after my surgery (all the while on the feeding tube), everything stopped working (moving). I hadn't eaten in five days but my x-ray showed
a full stomach! I was immediately hospitalized for dehydration and put on eyrthromyicin.
Apparently, this anti-biotic, which is normally way too harsh for folks, goes to town getting
the digestive system going again. My stomach had no motility at that time. Between the hydration & the little pill, things turned around within hours.

Unfortunately, I decided I didn't need the pill after a few weeks of taking 4 a day, then 3,
then down to nothing yesterday. I've no idea if this is the cause of fullness due to constipation, but I'm desperate enough that I secured an emergency doc to prescribe more today.
I'll take them for life if need be. My primary doc said to go ahead & wean off to see whether I needed this med or not. I've had only one small sized bowel movement in four days now, even with stool softeners. Tonight, I took Doculax (sp?). I don't know what else to do!

I'm relieved to hear from you that constipation does indeed cause a sense of fullness, therefore my loss of appetite. All of this is so incredibly delicate and hard to figure out. I am only 3 months out, however, and have no other complaints. I just stopped using the Fentynal patch this week & find I have no back discomfort at all. As to going back on the J tube, it'd be a horrific defeat for me to surrender to this. It'd signify failing on my part to take proper care of myself. And, it's only a temporary solution anyway. I'm presently at 114 lbs; if I reach 107, they'll insist on it. For about 8 days until yesterday I was succeeding at keeping my weight right at 119. Sorry to go on so long.......

Crystal

sandy1943

crystalbay said:

Tina, thank you. Why didn't
Tina, thank you. Why didn't I know about this site half a year ago when I had to make
life-altering decisions????? About six weeks after my surgery (all the while on the feeding tube), everything stopped working (moving). I hadn't eaten in five days but my x-ray showed
a full stomach! I was immediately hospitalized for dehydration and put on eyrthromyicin.
Apparently, this anti-biotic, which is normally way too harsh for folks, goes to town getting
the digestive system going again. My stomach had no motility at that time. Between the hydration & the little pill, things turned around within hours.

Unfortunately, I decided I didn't need the pill after a few weeks of taking 4 a day, then 3,
then down to nothing yesterday. I've no idea if this is the cause of fullness due to constipation, but I'm desperate enough that I secured an emergency doc to prescribe more today.
I'll take them for life if need be. My primary doc said to go ahead & wean off to see whether I needed this med or not. I've had only one small sized bowel movement in four days now, even with stool softeners. Tonight, I took Doculax (sp?). I don't know what else to do!

I'm relieved to hear from you that constipation does indeed cause a sense of fullness, therefore my loss of appetite. All of this is so incredibly delicate and hard to figure out. I am only 3 months out, however, and have no other complaints. I just stopped using the Fentynal patch this week & find I have no back discomfort at all. As to going back on the J tube, it'd be a horrific defeat for me to surrender to this. It'd signify failing on my part to take proper care of myself. And, it's only a temporary solution anyway. I'm presently at 114 lbs; if I reach 107, they'll insist on it. For about 8 days until yesterday I was succeeding at keeping my weight right at 119. Sorry to go on so long.......

Crystal

Hi crystal., My surgery
Hi crystal., My surgery (ivor Lewis) was in may 2008. I have always had the dumping, so I can't help you there. I know how you feel about the weight loss.I have lost 98 pds,and I absolutely don't want to lose another. I need to put on 30. I have always ate and after the first month my appetite returned. I'm not sure what the problem is nor does any of my drs. sometimes I feel like I'm on my own. With four drs., all they can say is how healthy I am. I look in the mirror and see a skeletin .I have a friend that owns a health food store. He has started me on a whey protein shake--lots of calories and is delicious. I'm praying this will help. I'll let you know. It takes time for your stomach to adjust, and it really hasn't been that long for you.

Unknown

sandy1943 said:

Hi crystal., My surgery
Hi crystal., My surgery (ivor Lewis) was in may 2008. I have always had the dumping, so I can't help you there. I know how you feel about the weight loss.I have lost 98 pds,and I absolutely don't want to lose another. I need to put on 30. I have always ate and after the first month my appetite returned. I'm not sure what the problem is nor does any of my drs. sometimes I feel like I'm on my own. With four drs., all they can say is how healthy I am. I look in the mirror and see a skeletin .I have a friend that owns a health food store. He has started me on a whey protein shake--lots of calories and is delicious. I'm praying this will help. I'll let you know. It takes time for your stomach to adjust, and it really hasn't been that long for you.

This comment has been removed by the Moderator

crystalbay

unknown said:

This comment has been removed by the Moderator

Back in the hospital now........
I came in through ER this morning feeling like I could never eat another bite as long as I'm alive. Dehydration isn't the problem this time as I've been religiously hydrating for days. It's worse than loss of appetite - it's repulsion at the thought of any food. I'm weak and haven't eaten in 3 days at this point. They've taken many x=rays to assess the state of my gut and are talking about J or G tube again. Can they do a G tube with my new anatomy even???
At this point, I'll do anything to stay alive. It's nausea yet not. Just repulsion. I've never felt more hopeless even though I have tons of incredible support and reasons to live.

Unknown

crystalbay said:

Back in the hospital now........
I came in through ER this morning feeling like I could never eat another bite as long as I'm alive. Dehydration isn't the problem this time as I've been religiously hydrating for days. It's worse than loss of appetite - it's repulsion at the thought of any food. I'm weak and haven't eaten in 3 days at this point. They've taken many x=rays to assess the state of my gut and are talking about J or G tube again. Can they do a G tube with my new anatomy even???
At this point, I'll do anything to stay alive. It's nausea yet not. Just repulsion. I've never felt more hopeless even though I have tons of incredible support and reasons to live.

This comment has been removed by the Moderator

sandy1943

unknown said:

This comment has been removed by the Moderator

Thanks william for the web
Thanks william for the web sites I will read on the injections. As far as diet- I have followed a high carb diet with lots of protein and not worried about calories .I have an appetite and enjoy eating, but I have kept losing,. I just now have started on whey protein shakes with added flaxseed and barley powder. I am hoping this will help me gain. I know if I get the dumping in control, it will help me to gain.