Esophagectomy with total gastrectomy

jimapril
jimapril Member Posts: 15
in Esophageal Cancer #1
In April, my husband had surgery, and they took all of his stomach and all of the esophagus that could be taken. His last PT scan was all clear, but he suffers a lot. He receives most of his calories and nutrients from nightly feeding tube, and about 1000 calories orally. He can't seem to build up calories because he has so much trouble with abdominal pain and throat soreness. Although the doctors assure us everything is going okay, the pain is so bad that it worries us. Are there others out there going through this same process, or better yet, have come out on the other side?

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #2
    Thinking of You
    Hello and welcome to you and your husband. So sorry he is having a hard time with his recovery from his surgery. I was a caregiver for my dad, Ray. He unfortunately could not have the surgery, so he had chemo and rads for 6 weeks, did quite well for one year. Then in Dec 2009, he developed bile duct cancer, which led to liver cancer. He passed in March 2010. Your husband is fortunate enough to have been able to have the surgery. I would ask his drs. what they suggest for his throat and stomach pain. My dad was given a liquid form of pain killer that numbed his throat. No one should have to suffer with that kind of pain.

    Hoping this finds you both doing somewhat better. Always ask questions, and always get answers! Stay as positive as you can, that is half this battle. Keep in touch.
    Tina in Va
  • christinagf
    christinagf Member Posts: 11
    #3
    Similar situation
    I was just coming on here to post a similar question. My dad had surgery beginning of August. They removed his entire stomach and a good chunk of his esophagus. He had one really good week where he was feeling pretty good. Then this last week he has been suffering from horrible abdominal pain. He says he can't take it anymore. He has been taking Oxycodone for the pain but it isn't doing much. He had his surgery at Mayo Rochester but they told him this surgery is very uncommon and they don't really know what his recovery should look like. He can't go on like this and we don't know what to do to help him. He has an ultrasound on Monday to rule out any issues with his gall bladder. Please let me know if you find anything that provides relief for your husband.
  • jimapril
    jimapril Member Posts: 15
    #4
    Tina Blondek said:

    Thinking of You
    Hello and welcome to you and your husband. So sorry he is having a hard time with his recovery from his surgery. I was a caregiver for my dad, Ray. He unfortunately could not have the surgery, so he had chemo and rads for 6 weeks, did quite well for one year. Then in Dec 2009, he developed bile duct cancer, which led to liver cancer. He passed in March 2010. Your husband is fortunate enough to have been able to have the surgery. I would ask his drs. what they suggest for his throat and stomach pain. My dad was given a liquid form of pain killer that numbed his throat. No one should have to suffer with that kind of pain.

    Hoping this finds you both doing somewhat better. Always ask questions, and always get answers! Stay as positive as you can, that is half this battle. Keep in touch.
    Tina in Va

    8 months and counting
    Tina, thanks for your encouragement. The doctors insist this is part of the healing process. I guess losing that much of your innardswould do that to you.
  • jimapril
    jimapril Member Posts: 15
    #5
    christinagf said:

    Similar situation
    I was just coming on here to post a similar question. My dad had surgery beginning of August. They removed his entire stomach and a good chunk of his esophagus. He had one really good week where he was feeling pretty good. Then this last week he has been suffering from horrible abdominal pain. He says he can't take it anymore. He has been taking Oxycodone for the pain but it isn't doing much. He had his surgery at Mayo Rochester but they told him this surgery is very uncommon and they don't really know what his recovery should look like. He can't go on like this and we don't know what to do to help him. He has an ultrasound on Monday to rule out any issues with his gall bladder. Please let me know if you find anything that provides relief for your husband.

    misery loves company-IS THERE ANYONE ELSE OUT THERE???
    christinagf, I am soooo glad you responded. I am getting the feeling that there are not many people going through this surgery, and surviving to complain about it. You are the only caregiver with a surviving family member who has responded to my post. Who is his main caregiver? I sometimes wonder if I can go on with all that this involves, but then I feel guilty because I am really so glad to still have him. I hope your dad is getting some relief, and feels more willing and able to go on. Somehow, my husband is able to go on, but I don't know if I could, or would want to. He is in so much pain. One woman mentioned liquid pain killers to ease the throat pain.He is taking Lortab almost every day. Along with the pain, he often throws up. He is lucky to get 1000 calories a day. Most nights, he has to get up for one reason or another- diarehhea or bile coming up or pain.
    The doctors told us the abdominal pain is the nerves and muscles healing, and it will get better. What have they told you?Please keep in contact to let me know what is going on.
  • Bermudagirl
    Bermudagirl Member Posts: 114
    #6
    jimapril said:

    misery loves company-IS THERE ANYONE ELSE OUT THERE???
    christinagf, I am soooo glad you responded. I am getting the feeling that there are not many people going through this surgery, and surviving to complain about it. You are the only caregiver with a surviving family member who has responded to my post. Who is his main caregiver? I sometimes wonder if I can go on with all that this involves, but then I feel guilty because I am really so glad to still have him. I hope your dad is getting some relief, and feels more willing and able to go on. Somehow, my husband is able to go on, but I don't know if I could, or would want to. He is in so much pain. One woman mentioned liquid pain killers to ease the throat pain.He is taking Lortab almost every day. Along with the pain, he often throws up. He is lucky to get 1000 calories a day. Most nights, he has to get up for one reason or another- diarehhea or bile coming up or pain.
    The doctors told us the abdominal pain is the nerves and muscles healing, and it will get better. What have they told you?Please keep in contact to let me know what is going on.

    Oh if you're looking for company...
    I can surely provide you some! :) My 58 year old boyfriend, Dave, had the THE on October 8th at Hopkins Like you we had several good days post op, and then it all fell apart. It will be 10 weeks tomorrow, and he is still in the hospital/rehab. Unfortunately he does not have an esophagus at the moment, he will have to have reconstruction in the spring. Dave does, however, complain of abdominal pain. I'm not sure if it is because of the surgery vis a vis the work they did internally, or its because he still has a open wound on his abdomen that is still healing with a fistula that is causing lots of problems. While my situation is not exactly like yours, I can relate as the caregiver... I'd be glad to just listen if you need to talk. There is also a very active FB page dedicated to EC warriors. It's actually a spin off of this forum. If you're interested in joining us I can get you the information. Hang in there!
  • jimapril
    jimapril Member Posts: 15
    #7
    Bermudagirl said:

    Oh if you're looking for company...
    I can surely provide you some! :) My 58 year old boyfriend, Dave, had the THE on October 8th at Hopkins Like you we had several good days post op, and then it all fell apart. It will be 10 weeks tomorrow, and he is still in the hospital/rehab. Unfortunately he does not have an esophagus at the moment, he will have to have reconstruction in the spring. Dave does, however, complain of abdominal pain. I'm not sure if it is because of the surgery vis a vis the work they did internally, or its because he still has a open wound on his abdomen that is still healing with a fistula that is causing lots of problems. While my situation is not exactly like yours, I can relate as the caregiver... I'd be glad to just listen if you need to talk. There is also a very active FB page dedicated to EC warriors. It's actually a spin off of this forum. If you're interested in joining us I can get you the information. Hang in there!

    my new best friend
    Happy to meet you, even though I am sorry you have to experience this. Yes, I want to go to the EC site. I just read others writing about esophagealcancerfighter.com . Is that the site you are talking about? I am going there as soon as I finish here. If I ever finish here, because there is so many posts to read.
  • christinagf
    christinagf Member Posts: 11
    #8
    jimapril said:

    misery loves company-IS THERE ANYONE ELSE OUT THERE???
    christinagf, I am soooo glad you responded. I am getting the feeling that there are not many people going through this surgery, and surviving to complain about it. You are the only caregiver with a surviving family member who has responded to my post. Who is his main caregiver? I sometimes wonder if I can go on with all that this involves, but then I feel guilty because I am really so glad to still have him. I hope your dad is getting some relief, and feels more willing and able to go on. Somehow, my husband is able to go on, but I don't know if I could, or would want to. He is in so much pain. One woman mentioned liquid pain killers to ease the throat pain.He is taking Lortab almost every day. Along with the pain, he often throws up. He is lucky to get 1000 calories a day. Most nights, he has to get up for one reason or another- diarehhea or bile coming up or pain.
    The doctors told us the abdominal pain is the nerves and muscles healing, and it will get better. What have they told you?Please keep in contact to let me know what is going on.

    My mom is my dad's main care
    My mom is my dad's main care provider. She is 55 and he is 62. She is still working full-time so I help out as much as I can. My dad is doing quite a bit better now. He was convinced that much of his abdominal pain was related to his feeding tube. The doctor assured him that it was placed correctly and that it could not be causing his pain (basically telling him that the extreme pain he was feeling must all be in his head). Regardless, they took out the tube and he got almost immediate relief. He now has the challenge of taking in adequate calories by mouth. The doctor did talk to us about how some people experience abdominal pain due to adhesions (basically scar tissue forming on the abdominal wall, from what I understand). So we thought that may have been contributing as well. I'm not sure what would be causing throat pain. Do you think it's from acid indigestion?

    My dad's main challenge now is getting up the energy or motivation to do anything. He has struggled with depression for a long time, and this has been a major setback for him psychologically.
  • ShellyAS
    ShellyAS Member Posts: 24
    #9
    Surgery
    My husband had his esophagus removed May 31 of this year. He complained of abdominal pain when he had the feeding tube. It actually fell out one day and after that he did not have that kind of pain any longer. He still gets pain when eating the wrong things and sometimes from eating too much.

    Things are starting to get back to normal or our new normal. He does sleep in an adjustable bed to help keep the bile down at night. He does say on occasional how nice it would be to just lay down. His Dr. said gravity is his new best friend.

    He is now eating well. He even gained weight!

    Hopefully your husband will start feeling better soon.

    Blessings,
    Shelly
  • Sunshine_50
    Sunshine_50 Member Posts: 10
    #10
    jimapril said:

    misery loves company-IS THERE ANYONE ELSE OUT THERE???
    christinagf, I am soooo glad you responded. I am getting the feeling that there are not many people going through this surgery, and surviving to complain about it. You are the only caregiver with a surviving family member who has responded to my post. Who is his main caregiver? I sometimes wonder if I can go on with all that this involves, but then I feel guilty because I am really so glad to still have him. I hope your dad is getting some relief, and feels more willing and able to go on. Somehow, my husband is able to go on, but I don't know if I could, or would want to. He is in so much pain. One woman mentioned liquid pain killers to ease the throat pain.He is taking Lortab almost every day. Along with the pain, he often throws up. He is lucky to get 1000 calories a day. Most nights, he has to get up for one reason or another- diarehhea or bile coming up or pain.
    The doctors told us the abdominal pain is the nerves and muscles healing, and it will get better. What have they told you?Please keep in contact to let me know what is going on.

    we are here!
    there are lots of ec caregivers and warriors out there. this used to be a really well populated group but then there was a mass banning of most of the key players as they did not stick to the 8 page T&C, namely sharing their medical advice and religious quotes. Its been in tatters since then. there are 2 other websites and a private facebook group where different sub groups are trying to come together and share information.
    send me a pm if you want more information.
    best of luck to your husband's battle. this is one dreadful cancer, but many do fight and beat it, and even stage IV patients can get many years of health.
    take care
  • jimapril
    jimapril Member Posts: 15
    #11
    christinagf said:

    My mom is my dad's main care
    My mom is my dad's main care provider. She is 55 and he is 62. She is still working full-time so I help out as much as I can. My dad is doing quite a bit better now. He was convinced that much of his abdominal pain was related to his feeding tube. The doctor assured him that it was placed correctly and that it could not be causing his pain (basically telling him that the extreme pain he was feeling must all be in his head). Regardless, they took out the tube and he got almost immediate relief. He now has the challenge of taking in adequate calories by mouth. The doctor did talk to us about how some people experience abdominal pain due to adhesions (basically scar tissue forming on the abdominal wall, from what I understand). So we thought that may have been contributing as well. I'm not sure what would be causing throat pain. Do you think it's from acid indigestion?

    My dad's main challenge now is getting up the energy or motivation to do anything. He has struggled with depression for a long time, and this has been a major setback for him psychologically.

    interesting info
    I do think the throat pain is acid indigestion. I hate to think the abdominal pain is from the feeding tube cause he is eating so little. If he has trouble with a food once, he has trouble eating it again. Or sometimes he just can't or won't eat that food again. So this limits his choices. He is 68, and I am 55. All of our family is out of state, so I am on my own.
  • jimapril
    jimapril Member Posts: 15
    #12
    ShellyAS said:

    Surgery
    My husband had his esophagus removed May 31 of this year. He complained of abdominal pain when he had the feeding tube. It actually fell out one day and after that he did not have that kind of pain any longer. He still gets pain when eating the wrong things and sometimes from eating too much.

    Things are starting to get back to normal or our new normal. He does sleep in an adjustable bed to help keep the bile down at night. He does say on occasional how nice it would be to just lay down. His Dr. said gravity is his new best friend.

    He is now eating well. He even gained weight!

    Hopefully your husband will start feeling better soon.

    Blessings,
    Shelly

    feeding tube
    So that is 2 of you that have said the feeding tube seemed to be causing the abdominal pain. Weren't you afraid to have him go off the feeding tube? Is there anyone else out there who seems to think the feeding tube is causing abdominal pain?
  • dsmasters
    dsmasters Member Posts: 22
    #13
    jimapril said:

    feeding tube
    So that is 2 of you that have said the feeding tube seemed to be causing the abdominal pain. Weren't you afraid to have him go off the feeding tube? Is there anyone else out there who seems to think the feeding tube is causing abdominal pain?

    My feeding tube(s) caused me the most pain

    I had 3-4 different feeding tubes since my stage 3 diagnosis in September 2009. I have also had chonic pain via body/muscle aches, cramps, and general weakness. I am 1 year out from my last major procedure and I am on a Fentanyl 100 patch, Hydrocodone, and Lyrica. I hesitate in writing that because it sounds like a lot, and it is, but it is helping me to rebuild my life after EC tried to take it. I don't believe that I will be on the pain meds forever, but I will use them as long as I need them in order to live as close to a normal life as possible.

    So the short answer is - yes - pain is normal for fighting through this diagnosis. It is not so much the cancer itself that causes the pain, it is the procedures that are done to beat this diagnosis that can have lasting side effects. 

    As difficult as the diagnosis, treatment, and recovery is it is all worth it. It will change your life but I honestly feel that I am a better person now then before I was diagnosed. Try not to get caught up on tomorrow, next week, or next year. Get everything out of today that you can and you won't have time to worry about tomorrow. 

  • christinagf
    christinagf Member Posts: 11
    #14
    jimapril said:

    feeding tube
    So that is 2 of you that have said the feeding tube seemed to be causing the abdominal pain. Weren't you afraid to have him go off the feeding tube? Is there anyone else out there who seems to think the feeding tube is causing abdominal pain?

    We were definitely nervous to

    We were definitely nervous to take him off the feeding tube. But he had been eating well for a few days prior, and he just couldn't deal with the abdominal pain any more. So, we felt it was our only option.

  • smflynn
    smflynn Member Posts: 3
    #15
    christinagf said:

    Similar situation
    I was just coming on here to post a similar question. My dad had surgery beginning of August. They removed his entire stomach and a good chunk of his esophagus. He had one really good week where he was feeling pretty good. Then this last week he has been suffering from horrible abdominal pain. He says he can't take it anymore. He has been taking Oxycodone for the pain but it isn't doing much. He had his surgery at Mayo Rochester but they told him this surgery is very uncommon and they don't really know what his recovery should look like. He can't go on like this and we don't know what to do to help him. He has an ultrasound on Monday to rule out any issues with his gall bladder. Please let me know if you find anything that provides relief for your husband.

    Grateful for each of you!

    I am so grateful to read these messages! My dad was diagnosed 6 months ago with EC and, after chemo/radiation, had surgery to remove 90%of his stomach and 2/3rds of his esophagus this past Nov (2012). They think the cancer actually started in his stomach. While the first month of recovery was awful, he had an excellent few weeks eating solids and gaining nearly 10 lbs. Unfortunately, his health has declined again due to many of these "same" symptoms - stomach cramping, vomiting, loss of weight. hearing that others have gone through similar valleys provides some comfort and I appreciate everyone's openness. I hope the discussion continues so we can continue to share the support and stories with our loved ones. I don't know about your experience, but I feel that so little is known or communicated regarding this awful form of cancer that stories of hope and shared experiences mean so much!!

  • Amjosmom
    Amjosmom Member Posts: 212
    #16
    smflynn said:

    Grateful for each of you!

    I am so grateful to read these messages! My dad was diagnosed 6 months ago with EC and, after chemo/radiation, had surgery to remove 90%of his stomach and 2/3rds of his esophagus this past Nov (2012). They think the cancer actually started in his stomach. While the first month of recovery was awful, he had an excellent few weeks eating solids and gaining nearly 10 lbs. Unfortunately, his health has declined again due to many of these "same" symptoms - stomach cramping, vomiting, loss of weight. hearing that others have gone through similar valleys provides some comfort and I appreciate everyone's openness. I hope the discussion continues so we can continue to share the support and stories with our loved ones. I don't know about your experience, but I feel that so little is known or communicated regarding this awful form of cancer that stories of hope and shared experiences mean so much!!

    Welcome Smflynn!
    Stay strong. Good support will help your Dad. He's come a long way.

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