New desperately seeking advice for unremitting reflux post sx

Truebrit

Another EC survivor pointed me to this site, i am so grateful for another resource.
My husband 55 former stonemason had EX dx Dec 08. Staging in boston, treatment plan formulated there, carried out locally in our state. Surgery, MIE in Boston May 09.
Now over a year later, we still fight with the effects of the surgery.. particulary the foulest reflux imaginable.
He take ultimate Aloe, Agustura Bitters, natural remedies for this problem.
Extra Vit B to counter the defeciencies from the cut up stomach and less intrinsic factor to process food. Protonix at night, on again, off again Reglan as needed
but the vomitting the nuseua continues, lately it has become worse, really bad. Puking all day.. walking around with an coffee can vile brownish yellow stuff coming up..
Sleeps elevated, nothiing late inthe evening to eat.. Help. What do I do to help him.
Any advice would be wonderful. We both try to justify the surgery was the right choice given his QOL right now.

Unknown

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BMGky

I am sorry to hear of your continuing problem. I'm sure you both are quite miserable. My husband had surgery three months ago and is dealing with frequent "belching/gagging." Right now, we feel it is somewhat our errors in not timing antiacids correctly, eating the wrong thing, drinking too much liquid beyond sips with food, not small enough bites, etc. We feel we will get the hang of it soon. Additionally, my husband has severe nasal allergies and drainage as well as a sensitive gag reflex. I feel that even though he is taking antihistamines for his allergies, the season is so bad that he is getting drainage into his throat-stomach area which is setting up the gag reflex and causing the gagging. He's never thrown up. When he eats enough, he gains weight. He is having trouble getting enough to eat because of the unpleasant gagging afterwards. We've had a few dumping sessions but they are less frequent. As everyone here seems to say, it is a learning process that takes trial and error and lots and lots of time. We see his surgeon in August. Nice man, but I believe that he will check my husband out and say keep working on it. If it goes beyond 6 months, we'll look into other options. The bad part is that he really gets allergic to fall pollen in MidAugust until the first frost so I don't believe we can take steps until we get past this terrible allergy season. Then again, I could be wrong. Hope you get some answers soon.

Donna70

some people do have vomiting a lot
Hi,
Think the advice you have been given is good. Would have to say I know of others who still vomit after surgery, myself included, either I ate too much or because of my lungs cough violently and then the food all comes up. I have heard others say they eat good sometimes and then other times for no apparent reason lose the meal. But the reflux and foul stuff coming up really pleads for you to get a dr to weigh in on that and take it seriously. Seems like the drs all like to chalk everything up to post surgery but as I found out sometimes it doesn't go away. My Gi dr gave me liquid Zantac and I take that at night and have hardly had any reflux at all. He gave it to me after I had a really bad episode of burning bile. I think you are doing many things right. Sleep as elevated as you can. I sleep on a wedge and 2 pillows on nights when I think I may have a problem, I sleep in a recliner sitting up. Hope the drs can help and you have to rattle your cans so to speak and say this is intolerable and they have to come up with something for your hubby. Good luck!! take care,
Donna70

Truebrit

unknown said:

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unremitting gastric reflux
okay William..
not to bore your with all the details of my husbands journey - I'll try to be succinct.
He was staged at level 2, no mets to other organs, no lymph involvement. Horray. tumour as I have discovered, was relatively small. Just 2cm but it was deeply embedded in the esophagus at the GI junction. So it was growing inwards, not clogging the esophagus.
Chemo consisted of 35 days continuous 5 FU and three treatments of Oxyliplatin. A LOT. my husband had only two treatments of Oxyliplatin due to severe side effects. Genetically he was born with only one kidney, who knew. We joked he must have given it away without realizing.
5FU was tough. he did not complete the entire plan. Nurse missed the port and pumped the stuff into his pectoral muscle by mistake. He had a PE during the treatment.
Radiation 28 treatments completed but not consecutively.
radiation by all accounts killed the tumour according to the surgeon at Beth Israel, no evidence of the cancer at surgery. Which was MIE. We got a second opinon at Dartmouth Hitchcok in NH, but they are still in the dark ages, doing the 'open procedure'. In view of the fact he has issues with his heart, our feeling was the surgery here would kill him. We opted for the Boston surgeon instead who had good survival rates and was willing to operate feeling he had a good shot at a cure. The boston surgeon was wonderful, we liked him alot. Very compassionate not overburdened with the god complex and ego.
Surgery on May 8 2009.
Good recovery initially. But very soon problems set in. Jaundice, heart rate uncontrolled, kidney started to fail, ICU dilerium, massive infection around the mendastinium i may have mis-spelled that, anastamosis leak. Later on, illius, no sounds of life in the digestive tract, mismanaged feeding tube - at this point i may have gone slightly mad!
Botox was injected into his pylorus to stop the pouring out of brown liquid into the bulb collector at the site of the anastomosis, the same stuff he now routinely throws up.
26 days in ICU before being moved to surgical recovery.
on the 46 day he stated I was coming to collect him - he was going home to NH. Which he did. By that time the anastomosis had been resolved he had a feeding tube in place. never ate anything by mouth in the hospital. Water was withheld for a very, very long time, sheer torture because he was awake, not comatose. I feel this contributed to his intestinal issues. I became rather vicious to the medical profession, for which i am contrite, now but the experience has left me distrustful of the white coats and my husband unwilling to allow undue procedures.
Three days after coming home he had a raging fever had to be admitted to local hospital. His surgeon was very concerned - my husband flat out refused to be transported back to Boston. I won't print the exact quote so the Boston surgeon assisted with care long distance. No one figured out why he had a fever, although the mention of possibly necrotizing tissue was terrifying. Nothing dead internally it was finally decided.
A week in the hospital, blood transfussions, and metabolic righting..
He has never had any respite from constant naseua, ever.
We know the vagus nerve was cut part of the surgery.. naturally no one admitted to doing this, its SOP. But it is WRONG. VERY WRONG. Vagus nerve, as we all know is important for telegraphing messages stomach to brain.
I struggle daily with the fact that the entire esophagus was removed, please i mean no offense, but it was radical surgery, perhaps more than he truly needed.
He had the stomach pulled up, after the top portion removed, that's what I meant by stomach being cut up. Could have worded it better.

He has been hospitalized three times since May 09 always with the same issues, naseua and vomitting. No has answers other than dont eat after (pick a time). There are slow motility issues, so Reglan prscribed. I say are we now waiting for Tardives Dyskenesia to set in?

On the outside, my husband looks pretty good, just those healed stab wounds from laproscopic equipment not a big swath of incision scar, but the inside is of course, very different.
He cannot sleep on his left side for even one minute without reguritation.
He takes his meds religiously but we cannot seem to get far ahead of the puking.
Certainly it must be a nutritional thing but lately i think this is going on:
How much bile and digestive juices does a human body produce daily.. whatever amount it is.. i was told by a dietician it was about 48 fluid ounzes (?!) but this seems excessive - I believe he produces more than the average person. Regardless of surgical rearrangement, this still happens everyday. The old Yankee expression goes something along the lines of you can't put 10lbs of .. into a 5lb bag. That surely is the crux of the problem.? But how to manage the acid production?
I will say, sorry for this long post.. that there is precious little knowledge on how to manage folks after the surgery.. Historically no one lived long enough to have these problems, but now the surgery is perfected, but there is a serious lag time in terms of management of the aftermath.
thanks for your suggestions.. i was advised you had the research links and you certainly helped me.
Truebrit.

snow-101

Nausea and vomiting
I am, just like you, the caregiver for my husband. I never post anything, but read "Discussions" regularly. Your story is incredibly similar to ours. Diagnose in april, surgery in may of 2009, T2N0M0, anastomotic leak, multi-organ faultier , respirator, J-tube for 14 month, constant nausea and vomiting, and so on... In december of 2009 , exhausted and desperate, we find new doctor and solution to our problem. We'd love to help. I send you my contact information via CNS Email couple days ago, wishing you my best, hope talk to you soon...

PuffyHon

snow-101 said:

Nausea and vomiting
I am, just like you, the caregiver for my husband. I never post anything, but read "Discussions" regularly. Your story is incredibly similar to ours. Diagnose in april, surgery in may of 2009, T2N0M0, anastomotic leak, multi-organ faultier , respirator, J-tube for 14 month, constant nausea and vomiting, and so on... In december of 2009 , exhausted and desperate, we find new doctor and solution to our problem. We'd love to help. I send you my contact information via CNS Email couple days ago, wishing you my best, hope talk to you soon...

snow-101
What's the solution? As my husband is going through recovery (surgery on August 4, 2011) and can't drink or eat, as soon as he drinks, he gags...our doctors are stumped!

HELP!!!

TerryV

PuffyHon said:

snow-101
What's the solution? As my husband is going through recovery (surgery on August 4, 2011) and can't drink or eat, as soon as he drinks, he gags...our doctors are stumped!

HELP!!!

OLD thread
PuffyHon,

You have posted on a thread that is out of date and not monitored by those original to thread. I recommend that you create a new topic on this issue detailing your husband's situation including information about his staging, pre-surgery, surgery type, etc.

Terry
Wife to Nick, age 48
dx T3N2M0 05/19/11
THE 09/08/11

Cora11

snow-101 said:

Nausea and vomiting
I am, just like you, the caregiver for my husband. I never post anything, but read "Discussions" regularly. Your story is incredibly similar to ours. Diagnose in april, surgery in may of 2009, T2N0M0, anastomotic leak, multi-organ faultier , respirator, J-tube for 14 month, constant nausea and vomiting, and so on... In december of 2009 , exhausted and desperate, we find new doctor and solution to our problem. We'd love to help. I send you my contact information via CNS Email couple days ago, wishing you my best, hope talk to you soon...

dr
Snow, curious to know how your husband is doing now and who operated on him ?
Cora

TerryV

Cora11 said:

dr
Snow, curious to know how your husband is doing now and who operated on him ?
Cora

Snow only posted once
and that was back in May of 2010, Cora. Don't hold your breath awaiting a reply.....

I believe she's no longer visiting the site.

Terry