Esophagectomy June 15, 2009

Hello, My husband had an Ivor Lewis esophagastroctomy on June 15, 2009. He spent eleven days in the hospital. He did pretty well in the hospital. However, when we got home he seemed to go down hill. He still has a feeding tube and a jp tube ( which drives him nuts).  He started out with 12 hours of feed time at a rate of 80 ml and hour. The first week home he lost ten pounds, and started to have edma in his feet. Then he was moved up to 16 hours of feeding time out of 24 hours at 100ml and hour. He tries to eat but can't. It makes him sick. He has so much thick stuff coming up that it chokes him and makes him cough, which leads to awful pain. I'm lost, I don't know how to help him. I've called the doctor, I've put him on a no fat diet and gone back to jello, and soft foods. He has lost so much weight and will power.  We try to stay up beat.... Our kids and I are so worried. Is it like this for most people who have this surgery?  Is there anything they can give him to stop some of this thick stuff thats coming up and make him want more to eat? Thanks g&cmom

my experience - i had Ivor Lewis esophagastroctomy on 7/7.got out of hospital on 7/15 and have been doing very well. i have a j tube for 12 hours at 95 ml per hour - i think this is a must until one can eat enough. i am on soft diet and try to eat all the time but the volume is not large. i lost about 3 lbs post surgery but since then my weight has been holding steady. i feel like i can eat a lot more and also maybe even solid food but i am not pushing it. i will go on soft diet till 8/7 and then to fork tender food which in all likelihood will mainly be fish.i have not had nausea or thrown up. last couple of nights i had a few dry coughs but it doesnt seem to be getting worse. i am getting back to normal activity like working and going for 30 mins walk/hike.

can't tell you why your husband is throwing up all those thick stuff and what they are - talk to doctor and dietician. through this whole process the best thing that helps me is have a very positive attitude that you will overcome all these inconveniences and be a cancer survivor.

good luck and god bless.

andy 

 

My husband started with the post nasal stuff after Ivor-lewis. Benadryl helps, but can make patient sleepy. Have heard others say they use Mucinex. Now we use 1/2 zyrtec daily and 1 benadryl at bedtime and that keeps it under control. Seems he became much more sensitive after the surgery and produces a ton of mucus. The mucus is also very nauseating so the zyrtec made a difference since it was 24 hours and he didn't fluctuate all over the place. He would get much worse at his sisters where they have a long haired cat.

hi.

i had my ivor lewis on 9/2/08 and was released on 9/9/08 with no tubes.  i was given finely chopped foods by my 5th day in the hospital.  i had a lot of mucus at that time as well... from the day following my surgery to the day i left the hospital, they had me walk a mile (around the floor) every day...this helped signifigantly with helping get the mucus up.  they had me stop at every corner of the floor and cough to get it up.  the walking helped to get it up.

i went into the hospital at 111lbs....after my surgery my weight went up to 120lbs.due to all the fluids...by the time i left the hospital i went down to about 100lbs.  i got out of the hospital and was doing really well with my eating...i just had to eat extremely small portions and i had a hard time knowing when i should stop...at that point i did not have hunger and i also didn't feel full after i ate...it was strange, but i was okay. 

it wasn't until the 3rd week after surgery that i started to get sick everytime i ate!  there was one point where anything i put in my mouth would make me gag and dry heave....it was weird...it was as if i couldn't vomit even if i wanted to!  i still haven't vomitted since my surgery...i have become very nauseaous, but never vomitted...i sometimes wonder why that is....anyways....the nausea had gotten so bad that i took myself to the emergency care center at Memorial Sloan Kettering, where i was treated.  they checked me out and found nothing wrong...i saw my surgeon for scheduled follow up the next day and she told me she thought i was suffering from bile reflux because other than the nausea, i had a constant bad taste in mouth which did not help the situation.  she prescribed reglan to me and that helped signifigantly!  i still lost a lot of weight through it all....i ended up going down to 91lbs. or maybe lower!  however, i have since gotten myself back up to 98lbs, which i have been able to maintain.

 also...i know the coughing can be painful after surgery, but i found hugging a pillow helped a great deal.

i wish  your husband the very best!  it is very gradual...there were days where i thought i was not getting better at all!  but, if i looked back to how i felt 2 weeks prior, i could see the progress.  hang in there...it is a rough road, but it does get better.

be well and God bless!

-Stacey

I had Ivor Lewis surgery Aug. 14, 2008 and for the first couple of months everything I ate I threw up and I had a lot of mucus, as time went it got better. As Stacey says it is a very hard rough road, but each day does get better. There were times I thought it would never get better, epically when I was continuously hugging the toilet, but I received a lot of support here and it helped to know I was not alone and people were or had been where I was. After about 5 months things got a lot better. I went back to work a bit under 3 months post surgery, but it was short hours. It has been almost 1 year now and my energy is improving. I had a lot of mucus but was worried about coughing up to hard and hurting my insides, but the nurses assured me everything was put together very well and it was best to hack up the mucus as much as I could. I also found walking helped to clear it out. It does get better, at times it does not seem like it will but it does. Take each day as it comes. I did not have any feeding tubes and even though at first I was throwing up everything I ate, I keep eating cause I had too. Please let us know how things go and if you have any other questions we are here.

Take Care and Be Positive

Evelyn

 

On 7/29/2009 Stacey19 wrote:

hi.

i had my ivor lewis on 9/2/08 and was released on 9/9/08 with no tubes.  i was given finely chopped foods by my 5th day in the hospital.  i had a lot of mucus at that time as well... from the day following my surgery to the day i left the hospital, they had me walk a mile (around the floor) every day...this helped signifigantly with helping get the mucus up.  they had me stop at every corner of the floor and cough to get it up.  the walking helped to get it up.

i went into the hospital at 111lbs....after my surgery my weight went up to 120lbs.due to all the fluids...by the time i left the hospital i went down to about 100lbs.  i got out of the hospital and was doing really well with my eating...i just had to eat extremely small portions and i had a hard time knowing when i should stop...at that point i did not have hunger and i also didn't feel full after i ate...it was strange, but i was okay. 

it wasn't until the 3rd week after surgery that i started to get sick everytime i ate!  there was one point where anything i put in my mouth would make me gag and dry heave....it was weird...it was as if i couldn't vomit even if i wanted to!  i still haven't vomitted since my surgery...i have become very nauseaous, but never vomitted...i sometimes wonder why that is....anyways....the nausea had gotten so bad that i took myself to the emergency care center at Memorial Sloan Kettering, where i was treated.  they checked me out and found nothing wrong...i saw my surgeon for scheduled follow up the next day and she told me she thought i was suffering from bile reflux because other than the nausea, i had a constant bad taste in mouth which did not help the situation.  she prescribed reglan to me and that helped signifigantly!  i still lost a lot of weight through it all....i ended up going down to 91lbs. or maybe lower!  however, i have since gotten myself back up to 98lbs, which i have been able to maintain.

 also...i know the coughing can be painful after surgery, but i found hugging a pillow helped a great deal.

i wish  your husband the very best!  it is very gradual...there were days where i thought i was not getting better at all!  but, if i looked back to how i felt 2 weeks prior, i could see the progress.  hang in there...it is a rough road, but it does get better.

be well and God bless!

-Stacey

Stacey, Thank you so much. He went back to the doctor yesterday. They took out the jp drain. He has been sick every sence we got home. Lots of pain. The doctor told him it was just going to take along time to get well. The doctor said the nerves that were cut around the ribcage could be playing an part in this. He also said if the mucus did not slow down he would give Charles something for it. I will ask about the reglan. I know God is in control, but it sure does help to have someone that understands. I pray God will bless you and keep you well! Sherie

 

On 7/29/2009 Ever4015 wrote:

I had Ivor Lewis surgery Aug. 14, 2008 and for the first couple of months everything I ate I threw up and I had a lot of mucus, as time went it got better. As Stacey says it is a very hard rough road, but each day does get better. There were times I thought it would never get better, epically when I was continuously hugging the toilet, but I received a lot of support here and it helped to know I was not alone and people were or had been where I was. After about 5 months things got a lot better. I went back to work a bit under 3 months post surgery, but it was short hours. It has been almost 1 year now and my energy is improving. I had a lot of mucus but was worried about coughing up to hard and hurting my insides, but the nurses assured me everything was put together very well and it was best to hack up the mucus as much as I could. I also found walking helped to clear it out. It does get better, at times it does not seem like it will but it does. Take each day as it comes. I did not have any feeding tubes and even though at first I was throwing up everything I ate, I keep eating cause I had too. Please let us know how things go and if you have any other questions we are here.

Take Care and Be Positive

Evelyn

Hi Evelyn,  Your post was the first one I read when I found this sight. I cried for an hour before I could come back and read more. I keep running up the stairs and telling Charles about what you, Stacey, and all the others were saying. I was so happy to have information from people that had and are going through EC I forgot I could print all this. GOD BLESS ALL of YOU for sharing. The first thing Charles said was " so these things happen to everybody" it was like a gloom was lifted off him. It"s been a month and a half sence his surgery and last night was the first time he has ask for something to eat (jello). You would have thought he had as for a T-bone. We were jumping up and down.  I pray things go well for you and your family.  Thanks again, Sherie