please help" debilitating nausea, vomiting, and severe pain 5 weeks after surgery...he can't get out

slpmom

My husband had his Ivor Lewis surgery 5 weeks ago for stage 2, N0MO. He had a few complications but overall was managing. He was up and moving, talking to people, taking care of himself, managing the surgical pain, doing his breathing exercices. Then he developed pneumonia a few weeks after I brought him home because he aspirated bile (he can't cough well because they paralyed a vocal cord). Back to hospital for 5 days, I thought he was OK, went on antibiotics, brought him home again. 2 days after discharge I came home from work to find him in extreme pain. Then nausea 24/7 and vomiting or wretching 6-7 times a day even though he is not eating. He is still not allowed to eat because he got pneumonia so they said keep using the j-tube and stick to ice cubes and popsicles. He is taking several meds, several anti nausea meds, nothing works!

 

They took him off 25mcg of Fentanyl and put him on a much weaker pain killer while at the hospital for pneumonia but when I reported his symptoms to the surgeon he said it was Fentanyl withdrawal. It has now been 13 days off the Fentanyl and he is getting worse. Weaker, more depressed. he can barely walk. This cannot be withdrawal. I took him to emergency a few days ago, they did not admit becasue his blood work, CT scan and chest X-ray all came back OK. They sent him home with more meds, of course. I can give him enough to allow him to lie down and get a bit of relief for a few hours but he cannot get out of bed except to go to the bathroom - he is too weak and nauseous. Even brushing his teeth is a major ordeal. Now he has diarrhea. He is fading fast and no one will help us. The surgeon said "its not surgical issue, all his scans and swallow tests are normal so if you have a problem, go to emergency again". I am going to the oncologist today - hopefully he will run some other tests. My husband says his intestines hurt ...he wont even let me give him more than a couple of cans of the liquid formula through the j-tube because he says it causes bloating, nausea and hurts too much. This is not enough calories to live on. The j-tube site looks Ok - its not infected. He does NOT have a fever, his oxygen level is normal, his pulse is normal but his blood pressure is now high (170/110) out of the blue. Any ideas???? I don't think he will live long in this condition, even though they "got all the cancer and he is cancer free" in their words. Could it be unrelated to the surgery? Vascular problem maybe? Nerve problems since they cut so much? I just don't know what to do..

Ladylacy

Your Husband

While my husband didn't have a j-tube (mainly because his first primary was laryngeal cancer and then a second primary at the cervical of his esophagus), my Aunt did and she had major problems with the j-tube and I know others have complained about pain and nausea with the j-tube.  Could this be your husband's problem?  Also maybe he is reacting to the type of nutrition you are giving him.  I hope that you found out something when you went to see the oncologist today. 

Wishing you and your husband peace and comfort.

paul61

Could it be the flow rate or an alergic reaction to the formula

When I was recovering from my Ivor Lewis surgery I used a j-tube for a period of time. I had my issues with nausea and bloating. In my case it was because the flow rate for the formula pump was set too high. I found that if we turned the flow rate down it took me longer to get through a bag of formula; (In my case all night long), but the nausea improved a bit.

In reading here I have also seen some patients report symptoms similar to what your husband is experiencing that were having reactions to the standard formula. They found if they experimented with a different formula that their issues improved.

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

paul61 said:

Could it be the flow rate or an alergic reaction to the formula

When I was recovering from my Ivor Lewis surgery I used a j-tube for a period of time. I had my issues with nausea and bloating. In my case it was because the flow rate for the formula pump was set too high. I found that if we turned the flow rate down it took me longer to get through a bag of formula; (In my case all night long), but the nausea improved a bit.

In reading here I have also seen some patients report symptoms similar to what your husband is experiencing that were having reactions to the standard formula. They found if they experimented with a different formula that their issues improved.

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

We saw the oncologist and

We saw the oncologist and finally got somewhere - he was alarmed at my husband's appearance. Well it turns out it was probably a combination of a few factors - and you are both right..the dietician happened to be there and felt we were using too high a flow rate as one of the problems. We were doing what we had done PRE surgery with the j-tube and she said no -told us to turn it WAY down even if he is hooked up for 18 hours a day to get his nutrition. We are also switching to the lactose and gluten free formula to see if that helps. But here is the other thing : in combination with possible Fentanyl withdrawal that may have been making the situation worse, he was now very dehydrated AND has a C-difficile infection from being in the hospital when he had pneumonia. They have started him on antibiotics and a strong probiotic (the kind you can only get from a pharmacist that is kept in the fridge and you chew them). He has had one full bag of saline, the antibiotics and a couple of probiotics last night and he actually dramatically reduced the pain and nausea in his belly. He woke up this morning and seemed like he might even be able to function today, instead of staying in bed all day. If anyone does not know what C-dificile is, it is a bacteria that live in all our guts and normally it is kept in check by our bodies - but when you get a lot of antibiotics in the hospital and maybe you are weak from surgery or your immune system isnt great, the antibiotics kill the good bacteria along with the bad and the C-difficile now can grow out of control and cause intestinal pain (inflammation), vomiting,nausea, diarrhea with blood and possibly fever (my husband did not have a fever though). The probiotics are critical to re-introducing "good" bacteria into the gut and get the "bad" bacteria back in check. Why couldn't the surgeon or emergency room person even have suggested C-difficile? It was the first thing the oncologist said to us when we reported that my husband "got sick a couple of days after being in the hosptial". UUUUUGGGGG!

Thanks so much for reading and making suggestions. I find the best ones come from people who've been through it!!

Oh and another point against the surgeon - on 3 occasions he said to my husband - well the good news is that you are cancer free, we got it all and it was not in the lymph nodes. Guess what the oncologist said? It was found in the blood vessels leading to the lymph nodes so you are going to need more chemo! My poor husband almost collapsed.