Is this normal?

slpmom
slpmom Member Posts: 34
in Esophageal Cancer #1

I know everyone says that healing after Ivor lewis surgery takes a long time but is it normal 9 weeks after surgery to be nauseaus with vomiting and dry heaves all day every day to the point where you can't get out of bed all day? My husband was doing sort of OK a few weeks after the surgery but then got pneumonia from bile aspiration on week 3 post op - spent a week in hospital, seemed OK once again and since then is chronically ill with nausea and abdomical pain despite a scopolamine patch and zofran pills. His blood pressure is suddently sky high now (185/110) so they gave him blood pressure meds which do not always work (some days his BP is down to 135/80 others it stays way up). We've gone to emergency 3 times, they run blood tests, CT scans and xrays but come back and tell us they can't find anything. Is this what others experienced when they say the first 6 months were "Very rough"? He cannot work and I cannot see him working for the forseeable future. We can't make it on just my income - we had a ton of savings from when he was first diagnosed but that is dwindling quickly. Will he really be in bed for months and months? Also yes, he has dumping syndrome, and we have done everything they say to do - but he can't eat much because of the horrible nausea all the time and the jtube feeds make him ill despite a low flow rate. Basically he's ill when he feeds and ill when he's not feeding. He's losing weight daily.

 

Comments

  • paul61
    paul61 Member Posts: 1,391 Member
    #2
    Some thoughts on things to investigate

    When I had my Ivor Lewis surgery the next three weeks after I came home were very challenging. I easily became short of breath, I got dizzy if I stood up too quickly, I was nauseated most of the time, and I had dumping syndrome events almost daily.

    This slowly improved over the next two months. But I have to admit the first two months after my surgery largely consisted of short walks from bed to the bathroom or bed to my recliner in the living room. It was about three months until I really felt comfortable taking extended trips away from home.

    I was retired so returning to work was not an issue but I would be surprised if anyone who had Ivor Lewis surgery returned to work in less than two to three months.

    That being said, I would say continual nausea to the extent that your husband is confined to bed should be investigated by a gastroenterologist. Please note I did not say his surgeon or his oncologist, but a gastroenterologist. Your trips to the ER and visits with the surgeon have resulted in investigation of potential surgical recovery issues; but your husband’s symptoms may indicate some other gastric related issue. Frequent nausea and vomiting could indicate a motility issue with the pylorus, (although your comment about recurrent dumping makes me think that is working fine); or it could be an infection. I assume in your trips to the ER they have checked for C. difficile infection?

    It will take your husband some time to return to work. I should point out that esophageal cancer is one of the diseases that automatically qualifies for compassionate allowance and quick approval of benefits under social security disability. Here is a link to some information on how to apply: http://www.disabilitybenefitscenter.org/compassionate-allowances/esophageal-cancer-social-security-disability

    You don’t need a lawyer for this; you just need some documentation from your husband’s doctor, and the social security office will help you with the claim form. There is a waiting period but the benefits can be retroactive to your husbands initial date of disability.

     

    You and your husband are in my prayers daily. I hope things begin to improve soon.

    Feel free to contact me if you or your husband would like to talk.

     

    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

    Five Year Survivor

     

     

  • slpmom
    slpmom Member Posts: 34
    #3
    You were right

    Hi Paul - you were right on the money! I brought him into emergency the other day and insisted they keep him. Once admited they did an endoscopy and upper GI series and said he has gastroparesis - not that the stomach isnt emptying at all but that it is very slow. They have given him antinausea meds through the IV (his port) and within 10 minutes, he felt normal. We are seeing if insurance will pay for him to get the IV zofran at home. We had the pills but they weren't cutting it, even with a scopolamine patch. They also put the pain patch back on him  because he still has a lot of pain in the chest and near the j-tube (possibly due to scarring from the abdominal incision which is near where the j-tube goes in). I'm not sure if that was a good thing or not (I know of the withdrawal problems that can cause)  They have also given him Reglan to aid with motility. I read online you cannot take that for very long because there are risks (?).  The gastro guy (yes he's finally the guy with some answers) said not to eat and then do a j-tube feeding. I'm not sure what "gap" there has to be between the two but basically as your stomach is trying to empty, it runs into the j-tube formula and everything slows right down. He was having dumping  symptoms but I am thinking it was due to the j-tube feed, not his stomach emptying too quickly. It was a combination of things I guess. Its going to challenging getting enough calories into him. The gastro doc said it can take around 6 months for the stomach to adjust. I hope he's right because i've read of people having these issues, several years out. I am praying he can come home with the right meds/treatments to be able to be comfortable and maybe work again soon. We are on work visas waiting for green cards. We are not eligible for disability benefits yet. This was really the worst thing for us financially but we thought we had a good chunk put aside to get us through. We were never told of all the possible complications nor that a person may not be able to work for 6 months if things go wrong. Or maybe we were just hoping for the best. Man, cutting that vagus nerve is the worst - so many repercussions.  

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