24hrs post Esophagectomy

Mrs.Mack
Mrs.Mack Member Posts: 12
in Esophageal Cancer #1

So today dad (47 yo T2N1M0 Esophagus cancer patient) is 24 hours post removal of his esophagus. Essentially, they removed the esophagus and pulled his stomach up to replace it. We have been dreding and at the same time praying for this day since he was diagnosed in November. It has been scary, and tiring and overwheling for him and us.

Our treatment was 2chemo drugs Carboplatin and taxol? once per week for 5 weeks and then radiation for 31 days. No hair loss, just lots of nausea, fatigue and insomnia. He was able to mostly control these with medications. He took his zofran around the clock starting the morning of chemo and would stop taking it three days afterwards. 

The 12/29 he went from being able to drink and swollow food that had been pureed to not being able to swollow anything. So 12/31 he got a J tube. He wasnt super happy about that, but it was a relief that he could easily get his calories in now. (we found his isosource and Jevity 1.5 on AMAZON cheaper then through the home health agency)

So here we are now! His surgery was yesterday and took 7 hours, he is left with two Jackson pratt drains, one pinrose drain, nasogastric tube, one midline incision and a neck incision. He will be in ICU for 2 more days for observation. he has a "small" pneumothorax, but they are confident it will resolve itself, no other complications this far in either sugery or post surgery!! Hes been up walking around several times today. (no water/food by mouth yet though, hes not too happy about that)

He is coughing pretty frequently. He is sore, but before sugery he opted for the epidural so he is hooked up to a PCA, and can press the button when he needs pain medications.

His surgeon says well be moved to the med-surge floor in the next day or two and will spend 1-2weeks there and will start being weened towards solid foods as everything is tolerated!!! He is SOOOO excited and we are too.

He says most of his pain is in his abdomen, not his neck. He equates the pain to the pain like when his J tube was placed. *remember to splint when you cough- it can help*

Lets hope this luck holds out on the long road of recovery we have ahead of us.

**Now we wonder what to expect now that he doesnt have a "stomach"?  Anyone have Ideas or advice for eating after all this? Anything to avoid etc? How long it took before solid foods could be eaten?**

Best wishes and continued prayers!   

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    Great to hear your Dad is doing well

    Mrs. Mack,

    I had my Ivor Lewis esophagectomy with gastric pull up in 2009. Like your Dad I was in ICU for a few days post surgery and was then moved to the thoracic surgery floor. I have to admit most of my pain was in my surgical incisions and not in my abdomen but the hospital did a good job of pain management.

    I hated not being able to eat or drink anything for 5 days (until they did the swallow test to insure there were no leaks) but they did give me some cold water and ice and a foam swab to wet my mouth with now and then. The warning was “if we catch you swallowing the swab goes away”.

    Once I had completed the swallow test they gave me a popsicle (that tasted great!!) and they started me on a liquid diet for a couple days. They then moved me to soft foods for the next week and then to very small amounts of “normal” food cut into very small pieces.

    When I first returned from the hospital I had a “j-tube” feeding tube in my abdomen that I used to augment nutrition for the first month at home.

    Eating after leaving the hospital takes some time and testing what works and what does not. Your Dad will need to eat very frequently in very small amounts. For the first year I ate 8 times a day in portions that were no more than three or four ounces at a time.  

     When your Dad is ready to be discharged from the hospital he should be visited by a dietician that will discuss a recommended diet. His recommendation should look something like this “esophagectomy diet”

    http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

     

    One of the things that they did not discuss with me that I wish they had was the fact that most esophagectomy patients have “dumping syndrome” for a period after their surgery. Dumping syndrome is caused when food from your Dad’s new stomaphagus moves too quickly through to his small intestine when it still contains a lot of water. This causes abdominal cramps, nausea, dizziness, and diarrhea. The good news is that it can be managed with diet and some new eating practices. It does get better with time. Here are some guidelines to help manage this issue:

    http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

     

    These are some “rules of eating” that helped me when I was recovering.

     1. Avoid foods that have high concentrations or sugar or simple carbohydrates

    2. Eat seven to eight small meals a day

    3. Eat slowly and chew all food very thoroughly

    4. Rest for approximately 30 minutes after eating (in an upright position)

    5. Drink minimal liquid during meals ( drink liquids approximately an hour after eating)

    6. High calorie supplement drinks (like Ensure) must be sipped slowly over a long period of time.

     

    Your Dad will need to learn to sleep on an incline in insure he does not have reflux and aspiration at night. I purchased an adjustable bed and when I travel I use a wedge pillow to keep my head elevated above my abdomen.

    The good news is, although it takes time before long your Dad will be back to eating and drinking the things he always enjoyed although in smaller quantities. Tell him he will have to be patient but things will get better.

     Tell your Dad to come here often with questions, he will find people here who have been down the road he is traveling.

     When he is ready if he would like, send me a private message and I will send along my contact information. Sometimes it’s good to have someone to ask “did you have this??”

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor

     

  • South Side Steve
    South Side Steve Member Posts: 32
    #3
    Good Luck

     

    Hi,

     

    Your dad’s story sounds similar to mine. I was diagnosed T2N1M0 Stage IIB in November 2011 and my treatment plan consisted of radiation and chemo (Carboplatin and Paclitaxel). I had Ivor Lewis surgery in March of 2012 and have been NED (No Evidence of Disease) in all my post-surgery scans. My surgical pathology report came back clean, so no additional chemo was needed. I was in the hospital for 10 days. I didn’t get my J-tube until my surgery and I kept it for about 6 weeks after I got home, although I never used it after I left the hospital. I was on a liquid diet for a week and then switched to soft foods for another week and then solids. I was very lucky in that I never needed any dilations or had any of the common post-surgery problems (cough, mucus, etc.). As far as pain, I had a little pain from the J-tube, but most of the pain was at the incisions and in my right rib cage. I did suffer a fractured rib during surgery and that caused most of the pain. Fractured ribs are common during the Ivor Lewis surgery, especially in older patients. I was 61 when I had surgery. 

     

    I went back to work at a desk job two months after my surgery, but I probably should have waited a week or two more. I was really tired when I got home, but I did have a 70-mile one way commute every day. I did retire in January of 2013, mostly due to changes in my company’s retirement benefits. Of course, my cancer experience also reminded me that I’m not going to live forever, so I should enjoy life more.

     

    Two years out from surgery, I can eat whatever I want to eat, although I do avoid my previously favorite spicy foods. Like most EC patients, I suffered from dumping syndrome (yes, it’s exactly what it sounds like) off and on for the first year, but I think I’ve only had a couple episodes during the last year. It does take a while for your body to adjust to the new plumbing and you have to learn what foods work and what foods don’t work. Everyone is different, so it’s a trial and error process. I lost about 40 pounds during my treatments and have gained about 8 pounds back, but I feel great.

     

    Your dad has youth on his side, so I think he’ll do fine in his recovery. It is a major surgery, so just be patient with the time it takes to recover. I remember my doctors telling me this was a life-changing surgery. That had me worried, but I can honestly say that other than sleeping with my chest elevated and eating smaller meals, I’m doing everything I did before surgery. I also purchased an adjustable bed and that has been the best investment I made. In the two years since my surgery, I’ve only had two incidents of reflux.

     

    If you or your dad have any questions for me, please feel free to send me a message and I will give you my contact information. I know it helped me to talk to persons that had gone through the surgery.

     

    Give your dad my good luck wishes and welcome him to the “Survivors Club.”

     

    Steve

     

  • trentster
    trentster Member Posts: 18
    #4
    paul61 said:

    Great to hear your Dad is doing well

    Mrs. Mack,

    I had my Ivor Lewis esophagectomy with gastric pull up in 2009. Like your Dad I was in ICU for a few days post surgery and was then moved to the thoracic surgery floor. I have to admit most of my pain was in my surgical incisions and not in my abdomen but the hospital did a good job of pain management.

    I hated not being able to eat or drink anything for 5 days (until they did the swallow test to insure there were no leaks) but they did give me some cold water and ice and a foam swab to wet my mouth with now and then. The warning was “if we catch you swallowing the swab goes away”.

    Once I had completed the swallow test they gave me a popsicle (that tasted great!!) and they started me on a liquid diet for a couple days. They then moved me to soft foods for the next week and then to very small amounts of “normal” food cut into very small pieces.

    When I first returned from the hospital I had a “j-tube” feeding tube in my abdomen that I used to augment nutrition for the first month at home.

    Eating after leaving the hospital takes some time and testing what works and what does not. Your Dad will need to eat very frequently in very small amounts. For the first year I ate 8 times a day in portions that were no more than three or four ounces at a time.  

     When your Dad is ready to be discharged from the hospital he should be visited by a dietician that will discuss a recommended diet. His recommendation should look something like this “esophagectomy diet”

    http://www.upmc.com/patients-visitors/education/nutrition/pages/esophagectomy.aspx

     

    One of the things that they did not discuss with me that I wish they had was the fact that most esophagectomy patients have “dumping syndrome” for a period after their surgery. Dumping syndrome is caused when food from your Dad’s new stomaphagus moves too quickly through to his small intestine when it still contains a lot of water. This causes abdominal cramps, nausea, dizziness, and diarrhea. The good news is that it can be managed with diet and some new eating practices. It does get better with time. Here are some guidelines to help manage this issue:

    http://www.upmc.com/patients-visitors/education/nutrition/pages/dumping-syndrome-diet.aspx

     

    These are some “rules of eating” that helped me when I was recovering.

     1. Avoid foods that have high concentrations or sugar or simple carbohydrates

    2. Eat seven to eight small meals a day

    3. Eat slowly and chew all food very thoroughly

    4. Rest for approximately 30 minutes after eating (in an upright position)

    5. Drink minimal liquid during meals ( drink liquids approximately an hour after eating)

    6. High calorie supplement drinks (like Ensure) must be sipped slowly over a long period of time.

     

    Your Dad will need to learn to sleep on an incline in insure he does not have reflux and aspiration at night. I purchased an adjustable bed and when I travel I use a wedge pillow to keep my head elevated above my abdomen.

    The good news is, although it takes time before long your Dad will be back to eating and drinking the things he always enjoyed although in smaller quantities. Tell him he will have to be patient but things will get better.

     Tell your Dad to come here often with questions, he will find people here who have been down the road he is traveling.

     When he is ready if he would like, send me a private message and I will send along my contact information. Sometimes it’s good to have someone to ask “did you have this??”

    Best Regards,

    Paul Adams

    McCormick, South Carolina

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

    Cisplatin, Epirubicin, 5 FU - Four Year Survivor

     

    Surgery soon....

    Hi

     

    Tihs is incredibly helpful for me. Thank you! My husband has finished his chemo/radiation treatments and we are waiting for Cat Scan and then surgery date. He is still very tired and his appettite isn't the best. We think surgery will be at the start of April. It has been a long journey, but hearing your stories makes me hopeful!  I am concerned about the surgery and the recovery but from what I am hearing it is tolerated.  My husband was diagnosed in November of 2013.  Hopefully this surgery will lead us on the road to recovery. 

     

    Sending prayers to all!

  • Mrs.Mack
    Mrs.Mack Member Posts: 12
    #5
    Update

    So my dad was only in the hospital for 1 week, Dr. Kasspooles says this is a record short stay for any of his EC who underwent esophagectomy w/ gastric pull up patients. Dad has been home over two weeks now. His first follow up appointment to review the surgical pathology etc showed no further spread and only 4/32 lymphnodes cancer +. So they are very confident that all cancer was contained and dad is in the clear for now. 

    So now dad's staples are removed, and he is adjusting to eating. He was a little hard headed for the first few days of being cleared for eating; eating anything and everything that sounded good that he had been deprived of. That led to bloating and some frequent unplanned trips to the restroom. He says he never feels full, however, he has since started to pace himself with the proportions and time frame of eatting and reports that this does help alot! imagine. He is also now the king of food label reading. He could probably tell you over 100 items at the grocery store- its protien, fat and calorie content and if its a simple/complex carb. He is up to 187 (up from 174 in the hospital) and if he keeps it up he will get his J tube removed next week.

    He is active again and is piddling around in the garage and fixing things. He says he feels almost back to normal and his abdomen/throat really only hurts when he coughs or when he overdoes it physically. He used the liquid morphine for about a week week and a half after he got home, but now is able to use OTC's to handle pains. He also reports that now that the staples are out he is sleeping much much better. We are getting a wedge for our parents bed- well see how that works. If nothing else well try blocking the bed up and if that doesnt work we will get an adjustable bed. 

    Im reall happy to report all of this.

    Thank you everyone who contributes to this message board! 

    Hope this helps encourage and give hope to others as they go through this. Keep your head up, sleep when you can, keep up on nutrition and keep moving through this. Our thoughts and prayers are with you!

    Take good care,

    Mackenzie

  • Tkincaid2
    Tkincaid2 Member Posts: 13
    #6
    Mrs.Mack said:

    Update

    So my dad was only in the hospital for 1 week, Dr. Kasspooles says this is a record short stay for any of his EC who underwent esophagectomy w/ gastric pull up patients. Dad has been home over two weeks now. His first follow up appointment to review the surgical pathology etc showed no further spread and only 4/32 lymphnodes cancer +. So they are very confident that all cancer was contained and dad is in the clear for now. 

    So now dad's staples are removed, and he is adjusting to eating. He was a little hard headed for the first few days of being cleared for eating; eating anything and everything that sounded good that he had been deprived of. That led to bloating and some frequent unplanned trips to the restroom. He says he never feels full, however, he has since started to pace himself with the proportions and time frame of eatting and reports that this does help alot! imagine. He is also now the king of food label reading. He could probably tell you over 100 items at the grocery store- its protien, fat and calorie content and if its a simple/complex carb. He is up to 187 (up from 174 in the hospital) and if he keeps it up he will get his J tube removed next week.

    He is active again and is piddling around in the garage and fixing things. He says he feels almost back to normal and his abdomen/throat really only hurts when he coughs or when he overdoes it physically. He used the liquid morphine for about a week week and a half after he got home, but now is able to use OTC's to handle pains. He also reports that now that the staples are out he is sleeping much much better. We are getting a wedge for our parents bed- well see how that works. If nothing else well try blocking the bed up and if that doesnt work we will get an adjustable bed. 

    Im reall happy to report all of this.

    Thank you everyone who contributes to this message board! 

    Hope this helps encourage and give hope to others as they go through this. Keep your head up, sleep when you can, keep up on nutrition and keep moving through this. Our thoughts and prayers are with you!

    Take good care,

    Mackenzie

    Surgery

    Mrs. Mack....wow! I'm extremely impressed. I had my surgery on March 17th and I have had nothing but complication after complication. I was sent home in 12 days. Once home, I continued to have abdominal bloating from the tube feedings. I could only have clear liquids and wasn't doing well with that. After 2-1/2 weeks at home - I got horribly sick. I got no advice from Duke University other than I needed to move my bowels. I was losing weight everywhere but my belly looked like a 6-7 month pregnant belly. I headed to my local hospital and it was found that I had free fluid in my belly, had a paracentesis and they drained 3 liters of fluid off of my belly! I felt like a new woman! 

    im on gut rest for the second week. I've been placed on TPN for nutrition (I was in state of starvation). I get to start trying solids next week and I'm terrified! I have to start with low to no fat foods because of my body's inability to break down fat. If your dad has any suggestions - I would love his advice. I'm 47 and a mom of 2 - I need to get better soon! 

    So glad your dad did so well! Hoping I can catch up!

    tkincaid2

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